Menopause Matters Forum
Menopause Discussion => Personal Experiences => Topic started by: Wanderer on August 21, 2014, 12:18:55 PM
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This topic was previously titled "Back after a year away (from MM!) - update and previously registered as MINNIE!" - Update by Emma
Good morning ladies! Previous known as MINNIE, I had to change my log in details, as moved from my old location! Thought my new log in was appropriate, as that is how my brain feels, still! I have still been reading the forum regularly, and still feel in such good company.
Boring recap - awful, awful avalanche of symptoms started 3 years ago, after 18 months of no periods, and cessation, bizarrely of hot flushes. In the space of a week, I had 36 of the 37 "classic" symptoms, with no reason, explanation, or care from the medical world! Three years later, feel exactly the same, BUT, have moved to Dorset, and have a wonderful lady GP, who is the first person on my journey to take charge! Recently saw a very esteemed member of the Menopause Society privately, as was staggered by his attitude, cold as could be, clearly bored, and absolutely no understanding of the "unlevel menopause playing field"!!! My GP was furious, but not surprised, so she is now going to prescribe, and I see her today.
My main symptoms appear to have been caused by a very, very sharp tightening of the pelvic floor muscles that is the effect of very bad vaginal/cervical atrophy, that has affected the whole musculoskeletal part of my lower body, pain in the buttocks, weak feeling in the groin and legs (like flu), ache in the pelvis, and utter disruption of the digestive system! My muscles are now so tight, I can't even pull them in any further when told to, and everything aches so much, as though I have a very heavy period. I can't sit for long, as I get a weird tingling in my lower body, and I can't walk far, as it all aches!! I saw a pelvic therapist, what a waste of time, who told me to do some breathing exercises, and the "sniff, drop, and flop" exercises, great while you do them, but the minute you move, everything tenses again, and while you have uncontrollable anxiety and nervous tension, which nearly takes your head off, and even makes your ears pound, you have no control, as the tension in my case goes straight to the pelvic area! I was put onto Evorel 50 by the so called "Menopause King" but it hasn't done a thing, because I am 56, they all think low dose HRT, is all you need, but I have all the same symptoms as peri, and more! I did start on Sertraline for a while but it doesn't address the main problems obviously. I also use Vagifem, but clearly I need industrial strength!!
I have had to leave a job recently due to anxiety and pain, and find that every time I try to concentrate, I immediately have a shooting pain in the pelvis, I cry all the time, and although didn't think I was depressed before, I now think I am, as there seems to be no help at all for me, and the thought of being like this until my deathbed, is unbearable. I feel so shallow as well, not having a real illness, as so many people put up with terrible pain and worry, and get on with their lives. My lovely mum recently died after a short illness, lung cancer, she was so dignified, never moaned, and I feel ashamed.
I missed you all, and hope that seeing my new GP again today will mean I can give you better news, but I am so happy for those of you who are doing so well!
Sorry for the essay! xxx
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Hi Wanderer MINNIE!! Welcome back. Sorry you are still having to deal with the pelvic floor tightness. I remember posting this link before http://www.pelvichealthsolutions.ca/index.php?cID=254 Was it of any use?
As for your old and new names - it may be possible for Emma to "marry" up your two profiles as I see you are still registered on here as MINNIE.
Good luck with the GP!
Taz x :)
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Wanderer
Don't beat yourself up to much - i now have tight pelvic floor muscles and this does make you feel depressed and anxious about the future.
Vagifem wasn't holding back the tide for me - i now believe there is little help out there for this (but that is just my opinion)
There is a pelvic floor specialist in Southampton who may be able to help you - i could give you her name and contact details by pm if you would like me to - she does internal physio for trigger point release. I think she is just private and quite expensive as most physios don't do internal release of muscles.
Are you on any pain medication to help the pain ?
I am trying to build up local contacts (Devon) through a counsellor at my local pain clinic - Dorset is not so far away ! - this condition can become very isolating.
I am sorry about your mum.
Hattie
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Welcome back Wanderer! Sorry you're still suffering.
Sorry too about your mum. :hug:
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Hello again Wanderer / MINNIE.
Sorry to hear about your health problems but really glad you have found a good GP.
Also, sad to hear about your mum. :hug:
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Hi Minnie/Wanderer
so so so sorry to hear about your mum and that your still suffering.
After all this why can't your good doc maybe let you try a tablet HRT at a stronger dose than the patch your on?
Also, don't be so rough on yourself also regarding the illness issue :'(
We can't really compare what your poor mum went thru to what others see as "lesser" illnesses.
However all these lesser illnesses can and will make us feel really awful and ill at certain times in our precious lives?
Modern life loves to make us feel guilty about feeling ill and taking time off/out to get well etc.
I really don't want to upset anyone on this.
But personally, if I feel ill then I've got an illness - whatever it is.
:-*
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nice to meet you, I am new so am not going to push myself forward but I just wanted to agree with peegeetip and say don't compare your situation to your mum's. I am so sorry to hear about your mum, it is a devastating bereavement but your illness is yours, no more and no less than any other. If it matters to you then it matters, don't belittle what you are feeling. Just wanted to share that, take care.
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Hi Minnie, I have all your pelvic symptoms and mine has been diagnosed as Pudendal Neuralgia.
Mine started in the main in January but warning signs where there much earlier I am 48. I have seen the physio in Southampton, but found the journey to far and now go to London the physio I see had the same problem for two years, so she really does understand.
I was sent down the VA route first and did not respond to vagifem, Ovestin actually made the burning worse.
I have for the last eight weeks seen a very good uro/gynae in London and I am 80% better overall than I was, as my problem was my bladder and he said a lot of women's pelvic pain starts in the bladder! mine was so thickened 7mm with infection, after a quite intensive rotational antibs regime with antihistamines as well after six weeks it is down to 2.5/3mm. He said my PN is irritated for a reason, and he found the main reason, my pelvic floor was like a lump of wood, the physio had a job to move it, but after the treatment she said she would not have recognised it was the same pelvic floor, uro/gyna said the same, also the external atrophy has gone.
I also went to see a skin specialist who takes more than the normal swabs for inflammatory markers, all clear.
I unfortunately have had to pay for all of this, as I knew my local hospital just did not have enough expertise in this area, also a lot of ladies who have these sort of issues are also hyper-mobile and have histamine issues. I have histamine, very easy test a long scratch on the arm at a certain pressure.
If you want me to know anymore then let me know, as I have traveled a very sometimes bleak road but I knew what I had straight away, and just needed to find the right experts. Whatever you do do not do pelvic floor exercises as that will be disastrous until you have a completely relaxed pelvic floor, that's how I got into a worst state, told a had a prolapse when I didn't at all, it is the feeling the damaged nerve and pelvic floor can give, since UTI cleared up that feeling has gone.
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Hello Wanderer and so sorry for your loss.
I agree with the other ladies in that we manage our conditions/illnesses in our own way, there really is no comparison. My mother also never complained when she became seriously ill and died a quiet death, now it may be a generational thing or just due to differing personalities but I don't do anything quietly these days. Everyone I meet gets to hear about my menopausal woes, whether they like it or not because being honest about how I feel helps me to cope and of course it allows other people the opportunity to talk about how they feel as well. This forum plays a huge part in that and I think we all benefit from the support of other women.
I am almost 58 and started using patches in January, being prescribed the lowest dose which of course had no impact seeing as my last period was four years ago! I've now worked up to 75 mcg and I'm hoping for a miracle any day now.
I see that you have been visited by 36 of the 37 classic symptoms and there are many who can identify with that. One of my earliest problems was constant headache and I would jokingly say to my family not to worry, all perfectly natural as it was on the list. Oh how we laughed. Well as the months went by and the list of problems grew I stopped laughing and so did they. Now, four years later no-one dares mention the list.
It's good that you are back, Wanderer and I hope you can find the right treatment for your pelvic floor issues, I see that you've already been given some good advice.
Wishing you well and keep posting.
K.
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I can't thank you enough already, such kind words! Hattie and Maryjane, I thought I was the only one, I hadn't ever really noticed PFD on this site before!
My GP is not going to change my HRT, as she thinks that there is such a complex picture that has built up, pain causing tension - tension causing pain. She has started me on Pregabalin, very expensive drug! It will calm all the nerve endings, and once I start to relax, hopefully the pelvic floor will drop. I am on 75mgs twice a day. Just taken one dose, and don't if I imagine it, but I seem to be breathing slower and calmer already, probably a placebo!! Ha!
Thank you so much again, PFD girls, I will look into your advice! xxxx
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Hi Minnie
How lovely to hear from you. So sorry to hear about your mum and that things have not improved for you.
Our journeys are so similar, we are both 56, hit by all sorts a few years ago and neither of us out of the woods. Bit worried about what you said about high up meno bloke as have an appointment with one in London in October.
Have got to go out so sorry for short message.
Welcome back
Lesley x
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I am on Amitriptyline they are all drugs for nerve pain. When I first had my problem I could feel the tension, I then learned to breath properly, imagine breathing right down into the pelvic floor, your chest stays still and your stomach and the feeling of your pelvic floor rise.
I have internal physio and she can tell if I do one breath wrong just by how my pelvis floor feels, it is hyper responsive to everything, and the amount of nerves down there crossing her there and everywhere is worse than spaghetti junction.
Also diet will play a big part, if you have IBS at all then give up all wheat/gluten as that also irritates the pelvic floor, has made a big difference to me.
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Hi - is this any use to anyone?
http://www.bbc.co.uk/programmes/b04d1kv8
(from 8min 30sec)
It is a women's physio talking about pelvic floor hypertonia. I listened, having heard it called pelvic floor dysfunction (which I have been told about in terms of my constipation problems - learned the "sniff, flop, drop" thing too, to no avail). It is not what I expected; it was more about pain during sex and sitting down. It also mentions the pressure point release therapy, which I heard of from someone who had this from a physiotherapist, after problems following prolapse surgery.
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Dahliagirl
It is good that Womans Hour had an item on this - its a long time since i listened.
What stood out for me was
the age of the lady concerned.
the fact that she went to a London Hospital that helped her.
the acknowledgement by the physio that other factors may be involved.
the fact that the presenter said that there is help but you have to find it yourself.
One thing i have learned over time is that you become your own detective with this and what applies to one person may not apply to you - there are different medical disciplines involved with the pelvis - gynaecology, urology, colorectal ,vulva, physio etc. One area of expertise does not usually cross into another and you have to be careful.
This lady is 40, she is in London and physio was able to help her.
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I have just listened to this, my pelvic floor was very hypertonic and the uro/gynae I am seeing traced it back to me having polyps removed 20 months ago, and the using of a catheter and not giving me antibs. I had been saying this to all that I had seen, as I complained two weeks later that things weren't right down there, and they all said no it was coincidence, but he was the first to say that is where your problem started, in the bladder, and the pelvic floor was from then on tightening around the burning pain and getting tighter and tighter, which had then irritated the pudendal nerve.
Unfortunately the type of physio that is required is a £120.00 an hour, as there are few and far between who do this type of physio, for those ladies that can't afford it is very unfair, it has stretched us financially and the uro/gynae that is sorting me out is not cheap either, I could go on his NHS list but that is months and I can't leave it months.
You really do have to be your own detective with this, and I am now confident in the team I am under, the physio and uro/gynae work together along with the dermatologist I have to see as well.
But I know it is going to take time, but the physio I see has had the same problem so she really does know what its like physically/mentally.
Finding the right specialists is key, and unfortunately that generally means London and costing a lot of money. On this journey at times I have felt like I have produced the next generation, and now off you go, my daughter is pregnant and has been diagnosed with SPD, which is basically an unstable pelvic floor so I am trying to keep calm and not panic.
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Hi Wanderer/MINNIE
So sorry to hear about your mum - and I am sure your grief will be contribnuting to how you feel, and make you less able to cope with the difficult menopausal and related symptoms you are experiencing.
Unless I've missed something, you don't mention whether you are taking progestogens and whether you have a womb and only mention Evorel 50? It is certainly possible to have a higher dose whatever you are on. If you don't have a womb then just ask for a higher dose patch. If you do (I presume you do becuase you mention periods) then using separate oestrogen patches (which come in doses up to 100 mcg) or gel, together with micronised progesterone (Utrogestan) will allow you to tweak the dose until you reach your sweet spot - ie the dose of oestrogen that gets rid of symptons and makes you feel positive about life.
If you were put on Evorel conti then the continuous progestogen could also give rise to some of the negative feelings you are experiencing as it has a depressing effect on the system - affecting some more than others.
You didn't mention who you saw, but considering some women pay for treatments such as yourself I think it's important to know who is sympathetic (as a concsultant) and who may not be quite so amenable.
Hope this helps and that you got on well with your GP!
Hurdity x
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Wanderer
You must have a good GP if she has prescribed Pregabalin initially as it is so expensive - i hope it begins to help with the pain.My GP wouldn't let me have it saying that it is just like Gabapentin but no doubt she was watching her budget.
If she refers you on to a pain clinic there are pain psychologists there who may be able to help you with coping strategies for the pain. 12 sessions on NHS. One of the hardest things for me has been accepting that this is not going to get much better. I am now 59.
I also had recent grief issues and another issue which was getting muddled up with the pain issue at sessions where i was often in tears - she offered me further help.I didn't accept it though as i was so tired by then - thought focusing on dealing with the pain would be better. Deep down all you really want is for the pain to go away so that you can refocus on your life but you have to learn to do it with some pain there as well.
Take care
Hattie
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Good morning ladies. Hope that you are enjoying the rather soggy Bank Holiday! Thank you again for your lovely replies! Hattie and Maryjane, I would love you to let me know about this Physical Therapist, are you able to message me, it used to be you had to have 100 postings before you could? Meno Lesley, great to hear from my "postmenopause pal"!!
Don't worry about seeing a consultant in London, mine was here in Dorset, and just feel so fed up that they are all so flippant, if it was a acute clinical condition, they would soon sit up. They have no idea about the mental health effect it has. I have absolutely no confidence any more, as I am terrified that I will make a mistake at work, as I can't concentrate, everything is through a haze of "weirdness"!
I think I was predisposed to the pelvic floor issue, as had pain in my early stages of pregnancy, everything stretching, and during the births, found it difficult at the last stage, and had to have episiotomies with both.
Yesterday, all the genital area felt "tingly", and I had constant spasms in the pelvic area, really weird, like contractions, and it made my head even weirder! Then I get the pelvic ache, and my left buttock aches like hell, and more worryingly, I feel a "click" there when I walk!
My digestion is awful, feel a strange buzzing in my stomach, and grumbling after every meal. I have tried every recipe known to help IBS, bought every herbal product, to avoid chemicals, and nothing really works!
I do have a womb, and the Evorel is oestrogen only, as the MK said that the progesterone can cause nasty side effects. I have been on it 2 months, is that too early to get an improvement do you think?
We have just moved, and the neighbours are lovely, all about our age, and whenever I speak to the women, I gab on about menopause, they all look at me like I am an alien, declaring that they had no problems, great!! Thank God for you ladies!
When I saw the MK last, he did say that he may be able to surgically release the pelvic floor, have any of you heard of this?
Finally, have any of you found that you cannot work because of this misery, or is it just me? Please let me know!
Love Wanderer xxx
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Wanderer - if you have a womb then you have to have progesterone - nasty side effects or not. To have oestrogen only puts you at risk of endometrial cancer. Your post has worried me although I haven't read the whole thread so I may have misconstrued.
Taz x
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From your description it sounds like you have an unstable sacro iliac joint (especially clicking)) it usually effects one side.
I would try an osteopath or chiropractic before consenting to surgery, or try home exercises.
http://www.youtube.com/watch?v=BFXTmtXIVGw
Mine has finally gone thank goodness.
Your weird head is probably due to anxiety and panic about your symptoms.
Can't comment on your hormone strategy, but from what you have said using that amount of estrogen without progesterone is not a good idea
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it used to be you had to have 100 postings before you could?
Think it's 10 postings now
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Hi Wanderer
I will pm you the physio in Southampton in a minute as i can send pms on here now.
i have been to her - she will assess your pelvic floor and does do internal pressure point release.
Maryjane is going to a physio in London trained by this lady.
She suggested an xray for me which i had done through GP and local hospital and there was a comment on state of sacro - iliac joint on the letter i had back.
You must be very worried about what is happening to you it is no wonder your digestion is upset.
I lost a part time job because i can no longer run around like i used to.
I will get on and pm you now
Hattie
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Hello Wanderer.
I wanted to add that I can relate to so much of what you say. I began HRT about eighteen months ago because of strange stomach issues. The sensation I had was also a type of buzzing but with a strong kind of tension as well. There were times when I wanted to take a knife and cut it out, weird, I know. After two weeks on HRT the sensation went. Now I use patches but I still have some quivery, jittery feelings so I'm guessing anxiety and menopause are still playing their part.
I have IBS, as so many of us do, but in 2010 I was diagnosed with Ulcerative Colitis which is an inflammatory bowel condition, so that complicates things. I've recently started using probiotics to help with gut issues and I will report back on any success.
I don't go out to work at the moment and I take my hat off those those women who do, I don't know how they manage it!
Take care and wishing you well.
K.
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My physio in London qualified at the same time as the one in Southampton, but was not trained by her. I have sent you a PM, as I am getting better about 80% so, the less that is done down there the better goodness knows what surgery the consultant is on about.
Myself and another lady on here see all the same consultants and physio, and have almost identical problems, she was told that we have managed to source the consultants on the cutting edge of technology with this Pelvic Pain problem, that it is far more common than people realise, in men, children and all ages in between.
Hyper -mobile and people with allergies are more prone, IBS etc.
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Hi Minnie, I am suffering greatly with my pelvic floor and bladder at the moment and am finding it increasingly difficult to go to work. I have a job that I love and have been there for over 23 years but I am finding it a huge struggle to go into work each day while managing this 'condition'. One of the main problems I have is not knowing how I am going to be from one day to the next but I am never free from some sort of pain or discomfort. I actually resigned from my job two weeks ago but my boss wouldn't accept my resignation and I now have a sit/stand desk, I just press a button and the desk moves up to allow me to work standing up. I also sit on an ugly foam donut cushion, it has been my life-line and has enabled me to carry on going to work. However, I can now no longer sit on the train to and from work so that is contributing to my distress. I am seriously wondering how long I can continue like this but am still hoping for some improvement in my condition.
This nightmare began with me after I developed a UTI after sex in February, I took myself straight off to see my GP and was given a three day course of anti-biotics. By the end of the week I was no better and a few days later the burning started, hot poker, razor blades, you name it. After two further courses of anti-biotics I had a cystoscopy and was told my bladder was normal, the burning and constant need to pee carried on relentlessly. The pain was so bad at that time that I couldn't go into work which caused a huge amount of distress as it was our financial year-end and I am an accountant.
I had further tests, colonoscopy, trans-vaginal scans, CT scan, MRI neurography. The pain in my vagina felt as if somebody had stubbed a cigarette out in there, the urologist assured me that my urine sample was clear and packed me off to a gynaecologist. The gynaecologist said 'don't worry all menopause related' and prescribed HRT and Vagifem. Despite doing the two week loading the burning was just as bad so the gynaecologist advised me to carry on with the loading for a further week. The pain continued, I felt as though I was on fire 'down below'. I actually stopped using the Vagifem about two months ago but still take the HRT.
From doing some research on this site, I then wondered if I might have pudendal neuralgia, I went to see a pain management specialist who agreed that I did have left-sided pudendal neuralgia, it is very difficult to diagnose so a nerve block is often used as a diagnostic tool. I had a nerve block injection at the end of May and it did help with the burning but didn't help with the urinary frequency or pelvic floor spasms. He also prescribed amitriptyline.
Around this time, I started seeing a pelvic floor physio in Harley Street and she recommended that I see a specialist URO/Gynae who had helped her when she had chronic pelvic pain. I went to see him and he scanned my bladder and said it was twice as thick as it should be. He performed a cystoscopy and biopsy a few days later and said that I had an infection that had gone through my bladder lining and into my bladder wall and my bladder was very inflamed. I am also hyper-mobile and histamine intolerant and these bladder problems go hand in hand with these conditions apparently. I took more anti-biotics for six weeks and went back to see him three weeks ago but there was no improvement so I am now on more anti-biotics for four weeks.
Also, the physiotherapist that I saw on the recommendation of the pain management specialist advised me to try and wean myself off my cushion at work. Unfortunately, I tried to do it quicker than she suggested and now have irritated my posterior cutaneous nerve and cluneal nerve as well. The pain management specialist has since repeated the nerve block injections but this time in both sides to try and block the pudendal nerves and also the posterior cutaneous and cluneal nerves. These injections have had limited success but are now starting to wear off and, as well as the burning pain, I also have a fizzing across my buttocks which is like sitting on an electric fence. I now find it impossible to drive or sit in a car for any length of time.
I had to take myself off to the local STD clinic about a month ago as I had developed such bad thrush, not surprising after all the AB's. About two weeks ago I went to see a vulval skin specialist in Harley Street as I wanted to make sure that there was no sinister reason for the burning, she said that I have absolutely no sign of any vaginal atrophy, in fact she said I was like a 'spring chicken' down there. She also confirmed that all my vaginal swabs were clear and the flora and ph balance were spot on. She was very impressed by the consultants I was seeing and said that they were all at the top of their field and that this is all reversible. I wish I had as much faith as her!
I am now pinning all my hopes on the pelvic physio that I am seeing in Harley Street, the same one as another lady on this site, and the URO/Gynae who has identified the bladder problem. The pain management specialist is of the opinion that I have IC, now re-named painful bladder syndrome, and that we have a chicken and egg situation going on. He wonders whether the bladder problem has been in the background for a while and there has been damage to the pudendal nerve through change in posture or whether pudendal nerve irritation has impacted on the bladder.
Either way, it has had a serious impact on my quality of life and I hope something can be done about it soon. I also have CBT to teach me how to live with the pain but I just want it to go!
My partner drove me to see my mother in her nursing home yesterday, she is very frail now with Parkinson's Disease, and I feel awful as I should be able to help her more but it is impossible for me to drive very far at the moment and the round trip yesterday of 140 miles left me burning and fizzing even as a passenger!
The thing is, I don't really look as if I am unwell and it is very difficult for me to describe to my boss just what exactly is going on.....
Not sure if you will still be awake after this post but send me a pm if you want details of any of the specialists I have seen...
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Hi
Have pm you, do hope you get it ok x
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Did you send a PM to me Lesley as I haven't received anything.....
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Sorry sent it to Wanderer.
Have just read your post and really feel for you. Can totally relate to what you said about looking ok but feeling awful. It is horrible when there is no light at the end of the tunnel. Do you find that the amitriptyline helps you at all? I take it for sleep problems which does help sometimes. I'm going to see meno specialist in October in Harley Street as a last ditch attempt to try to sort myself out.
Do hope the pelvic physio you are going to see helps you.
Lesley x
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Judith 57
Huge, huge :hug: that is an awful lot of pain.
Hattie X
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Thank you Lesley and Hattie, amitriptyline helps me sleep but doesn't really help with the pain. I am going to increase my dose from 10mg to 20mg though,
Judith
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Good morning. Oh Judith57, what a lot of nastiness you have had to go through, unbelievable that all this is hidden away from common knowledge, have any of us ever heard of any of this menopause misery before this site? I agree so much about making people understand when you look so well, but are so miserable inside, it just adds to lack of confidence, feeling so alienated. I have had a summer of sunshine here in Dorset, everyone says I look so healthy, but inside I feel so crap!
My husband says I have to work, as although semi-retired, our savings need to be budgeted out, but I live in constant fear of work, always feel anxious and wobbly, can't concentrate, and ache from the pelvis downwards, with wobbly legs all the time, and that's without the weird digestion! I have just gone back to a job I have done before, as I thought it would help, but all that has happened is that they expect me top know everything, and now I feel a prat when I can't remember, my stomach tenses, and anxiety goes through me like a lightning bolt! The AD the GP gave me have eased the tension in my head, but hasn't got rid of the constant knot of anxiety in my pelvis. My husband says he will get a full time job instead, but then I feel bad as he doesn't want to! I just don't know what to do!
I am seeing the MK consultant again next month, Tim Hillard at the BMI Hospital in Poole, in case you want to know, he knows that I need progesterone, but says that I don't need it until about 6-12 months in.
What a miserable time, I hate my life!
Wanderer xxxx
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Meno Lesley, I didn't get your PM! It is working ok, as I have 2 others, which are lovely! Can you try again?
xxx
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Hi Wanderer, I work but from home as I am self employed and I can manage my day around my pelvic floor my job is standing also, there is no way I could do a sitting job.
Yes the anxiety is awful, it comes over me in waves to, I go for a dog walk which helps. The problem with working on your own though, is lack of socialising but to be honest I am not the best of company at the moment anyway.
I don't know what you can do about the job situation, we take our health so for granted, I was a very different person this time last year.
I am 48 , and I still am amazed that our pelvic floors can just give up on us, and cause all these problems, I expected hips, back, knees etc but not these problems. I think we are predisposed to it and it will happen whatever we do.
The pregagablin could make your anxiety worse for a while,as some people really can't tolerate the side effects from it, it is normally used for epilepsy, but is found to work with nerve pain. The other ones are, amitriptyline, noratriptyline, duloxetine, gabapentin possibly a couple I have forgotten.
The fizzing I think you mentioned when you sit down, is possibly your piriformis muscle/sciatic nerve. I have this and have to sit in perfect posture , no slouching at all.
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Minnie, I hate my life too, my freedom has been completely taken away by this crap. I used to be so carefree, travelling here, there and everywhere. Now I sometimes spend nearly all day on the sofa. I have just got home from work, I made myself sit on the train to work this morning as I figure the longer I avoid it, the worse it will become. It was not comfortable but I managed it. This evening I sat until the station before mine but then I had to stand for the last bit. I used to go to restaurants, the theatre, cinema, planes, drive all over Europe, now I can't even sit on a train for more than twenty minutes. I mourn my old life!
The whole of my nervous system now seems centred in my pelvis. I went to see a Jools Holland concert on Saturday evening, with my special cushion, and my whole pelvic floor was contracting in time to the vibrations from the music, my electric toothbrush has the same effect.
I was really anxious about work this morning as I have been off for the last five days but it wasn't as bad as I thought it would be. I have developed some coping strategies to help me now.
Judith x x
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Thanks so much for your replies again. I have had some lovely PMs, and I did get yours Meno Lesley, big hug from me, why are we still having all this rubbish after 3 years, when others seem to be cured immediately!!!
Judith57, didn't read the small print about Pregabalin, but will now, not really sure it is doing anything anyway! Thank you for warning me! I am so desperate for at least 24 hours of relief, that I just take anything offered, although I am so sceptical that anyone out there can help! A couple of the ladies have signposted me to a pelvic therapist in London, so I will try again!
Feel as though I have lost 3 years of my life, and been absorbed in my self centered misery, want to be a caring, relaxed person again!
Night night.
xxx
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The pregabalin will take a couple of weeks to take effect and you may need to titrate higher to get some pain relief. Your GP would advise - it is also a balancing act with not getting too constipated.
Couldn't agree more about self-centred misery where you don't want to be.
Hattie
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Just came on forum today to post a couple of things that may help anyone.
The physio lady i saw in Southampton lent me this book
Teach Us To Sit Still by Tim Parks
he is a novelist whose books about Italy i had already read so i was up for reading this.
Although he has a male pudendal/pelvic nerve problem some of it is applicable - the first part is written in his usual style and some bits made me laugh out loud (something i'd not done in a while) - i could relate to all the feelings he expresses about pelvic pain. His sedentary stressful job seemed to be a factor.
She also recommended
Mindfulness for Pain Relief CD by Jon Kabat Zin
Hattie
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:thankyou: ............ :hug: you are going through some awful times. Glad to see you posted Judith, I was about to send you a PM alert about this thread ;)
As for feeling guilty about your Mum not moaning - she was obviously dealing with a different situation Wanderer and probably knew that she wouldn't have to endure for very long. You have a difficult condition, stop thinking about those 'worse off' because they are not in your situation. Take care of YOU!
Has anyone thought to sit on a blow up 'ring', like the ones kids use for swimming - so that the vaginal area is not pressing onto a cushion?
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Hi. Just thinking out aloud is it worth us/ are we allowed to have a " how do you cope with pelvic pain " thread. There are a lot of " us " out there, I would have struggled without chatting away to Judith 57 ( believe it or not we have laughed sometimes, about our situation).
CLKD regards the rings.......apparently the NHS are stopping using them as they are causing other problems, regards weight distribution etc. the one that is recommended is called " airflow", ladies who have just had a baby can hire them through the NCT, don't know if we could, but if not it is an eye watering £165.00, but I gather it has given a lot of people with this horrid problem there life back to a better quality.
I have so far managed to avoid using a cushion, but I don't need to sit at a desk, and when I do sit and it starts to feel uncomfortable then I get up.
Wanderer my stomach was also solid as I had been horse riding for ten years, five times a week, for three hours a time, but I have managed to get a "floppy " tummy. Physio said horse riding is really bad for the pelvic floor, bit late now.
Also wanderer these " nerve " drugs can take up to three months to work. I only take 15mg of ami, which helps also lift my mood and helps me to sleep.
The stabbing, shooting pains you have wanderer and the intense ache is what I had, and still do sometimes, the pelvic floor is trying to relax, it's no different to having cramp in your leg. I get a lot of relief from small heat pads, from amazon they are by dreamland, I have two one that I put on my lower back buttocks, and the other on my pelvic area, I have them on the hottest setting and they stay on for three hours, they are as hot as a hot water bottle, and you can feel the muscles/nerves relaxing. When I was at my worst, they where indispensable. Also when I was bad, and had to do my work, I ised a TENS machine on the massage setting, this was a very good distraction, I would have it on for up to ten hours aday.
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I would buy a ring regardless - when I injured my coccyx at age 12 I had to sit on a cushion or ring for 3 months. Even now I get a twinge occasionally …….. there are plenty of firms that sell cushion inserts or blocks of foam so we could make our own ………… ;)
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Maryjane
You could pm Emma - moderator - on this forum to ask her to make 'How to cope with pelvic pain' a sticky thread such as others are on here because i agree with you it is important to have a thread like this.
I will back you and pm Emma as well if you would like me to.
Such a sticky thread may also alert someone else reading that thread to the possibility of the cause of their pelvic pain that may have gone undiagnosed.
Hattie
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I would buy a ring regardless - when I injured my coccyx at age 12 I had to sit on a cushion or ring for 3 months. Even now I get a twinge occasionally …….. there are plenty of firms that sell cushion inserts or blocks of foam so we could make our own ………… ;)
CLKD With the greatest of respect and i don't mean this unkindly in any way - you are not dealing here with something that heals within 3months.
My husband has however made me two 'rectangles' out of B&Q hard foam garden kneelers which i can put under each buttock to lift the vaginal area off a hard chair - but this is what works for me it won't work for everyone who has worse pelvic problems.
Hattie
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Good afternoon ladies.
Thank you Hattie and Maryjane for your emails! I do agree with the other postings, that pelvic floor pain is a big issue, and causes huge anxiety, you Google it, and the first thing that comes up is ovarian cancer! Yes, all unexplained pain should be investigated, but, if like me, all the tests are normal, it should not be ignored, as like all pain, it eventually wears away your cognitive thought process! Mine is caused by really, really bad VA, that has caused tension, and the tension has caused pain. I think SuzyQ once likened it to teeth gnawing away at your pelvis! This is also what can cause IBS, as a lot of women with IBS are found to have a dysfunctional pelvis. Not the only cause of IBS in menopause, of course, but the tension doesn't help the colon to process food easily.
I really don't think HRT helps with problem at all, it could help anxiety, which in turn will help us to relax a little, but we need to learn to keep it relaxed, something I have trouble doing, so I am seeking help! Won't be the NHS, for sure! Mine is both sitting and standing up! Sitting makes everything "nervy" and standing is a deep ache everywhere, so not sure a cushion would help!
I do think a thread would give some relief to members worried about aches and pains in the pelvis.
Wanderer. xxx
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Just nipping out to CBT, never hurd of it before this, it helps to off load. Regards your aching Wanderer look up " venous veins " in the pelvis, they are basically varicose veins in the womb, I am absolutely riddled with them, and apparently mine are tortuous to, now a big proportion of ladies who have had children and are our age have them, so have no problems others have this awful aching etc.
As I said I am quite a lot better, and the physio does something called myofacial release, which is all to do with blood flow of that area, exercises at home also include massaging the colon bowel area gentley, IBS and this quite often go hand in hand. Years of IBS irritate the pelvic area.
......and no the NHS will do nothing......our best hope is physio.......diet change regards the IBS......and I am hoping the uro/gyna and vulva/dermo expert I am under........the right nerve pills may help, but that is trial and error to which one will suit you.
Xx
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Hi all you fellow pelvic pain sufferers, I've just come home from work today and it has been a hellish day. My vagina, that used to feel like it was sucking on a Fox's Glacier Mint (Maryjane and I had a giggle about that in the early days), now feels like a smouldering ashtray :'(. I think a lot of the problem is now coming from my piriformis muscle/sciatic nerve as I have burning through my buttocks into my groin and at the back of my legs underneath my buttocks. I cannot even get any relief from the big foam donut cushion. At home I have a cushion that I bought from Amazon that was recommended on the IC forum. I managed to sit on the train home but had to put a hand under my right buttock so that it wasn't touching the seat. This is such misery!
The Harley Street physio that Maryjane and I both see is on holiday at the moment but I have an appointment next Tuesday. Just been reading an article in The Times today about people using cannabis to relieve nerve pain, might be tempted to go down that route myself if this continues much longer :-\
This is such a horrid area to 'break' as there are so many nerves down there and nerve pain is just THE PITS!
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Isn't it strange that some of us develop the horrible pelvic tightness, which I've just been reading about in this thread, and others, such as me, develop prolapses because the pelvic floor loosens too much! Shame we can't both have a teeny bit of what the other has!
I am so sorry to read of this though - it sounds absolutely life changing. I do hope that you get some relief soon.
Taz x :)
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In America, Europe a lot of people use " canibis oil ", and quite honestly when you look into it, it is probably less dangerous than the likes of Gabapentin and pregagablin, as they can really play with your mind.
Nerve blocks if they work, and that is a big if only offer temporary relief, nerve pain really is not understood by the medical profession it is so complicated, and the pelvic area in a women has the most of any nerves anywhere.
Botox is an option, but that also really scares me, has to be done by a top surgeon as if they get the wrong place you can become doubably incontinent.
.......and the saddest thing of all this, is the forced end of our sex lives as it is just to painful. But there ways.....however it is sad, after thirty years of marriage that something like this dictates everything about you, and really messes with your mind. Xx
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Wanderer - 'huge anxiety' and Maryjane - 'really messes with your mind'
Can only agree - don't know if it is the same for anyone else who has pain in a different area of the body.
I expected my body to heal this like any other area - guess it is trying to in its own way.
Also being hidden and a difficult area to talk about openly to others isn't easy.
I now have to make my excuses to others when i really have to -to look at me nothing is wrong. I've been asked 'is it a trapped nerve, i had something like that' - at which point i could launch into a speech about how no scan or anything else can easily detect it and if it were it is very difficult in the pelvis to correct - but i don't.
There needs to be more awareness - proper Centres for pelvic pain where every possibility is investigated and all the specialisms gynaecology,pain management, urology,physio etc are under one roof and understand each others expertise/limitations. when i win the lottery.........
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I was thinking about how menopause is/isn't served across the UK - why don't all the GPs with sensitive knowledgeable information about menopause open dedicated Clinics across the country ::) …… ……. they would be well valued!
They would unlikely to be out of work!
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Hi Hattie, I couldn't agree with you more. It is very difficult for me to explain to my 47 year old male boss what is wrong with me. In the early days when I was in a lot more pain than I am now and literally dragging myself into work one of the guys in IT who I am very friendly with asked me what was wrong, I said to him 'imagine sitting on a red hot poker with your balls in a vice'.....he got the idea and didn't mention it again. Funnily enough he said to me today that I was looking a lot better and was I cured, I pointed to the big foam donut and said 'what do you think?'
I had no idea that pelvic pain even existed earlier this year and, like you, fully expected my body to mend itself. The doctor that I see in Harley Street to check for thrush etc. has told me to just think about it as a stiff neck but in my pelvis :-\.
Even on days when I don't feel too bad I just don't feel like a normal person anymore. I am sure it is no accident that pudendal means 'shame' in Latin :(
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Hattie.....London has a pain department that is just for pelvic pain where all the disciplines work together, it comes under NHS England which means it does not come out of your local areas budget, anyone with this type of problem can be refereed there.
However I have seen " the main man " privately as has Judith 57, the NHS wait is up to a year, I was transferred to his NHS list in February still have not had an appointment through. They are a pain clinic just for the pelvic pain , and get 10,00 referels a year.
They are just the most up to date " with the latest technology " etc , and the brains of the brains, however as one of his " team" said to me nerve pain is still not understood, and treating it is hard but the main man there does travel around the world for the latest on pain management, and writes most papers on the subject.
But I do feel we have produced the next generation, and you are just cast aside, physio said to me that at any one time two thirds of women /men have some sort of pelvic pain.
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Pressed to early......however that doesn't help someone living miles away in agony, and can only lie in the back of the car, but I don't think we will ever have clinics around the country, and what is quite scary is that a huge proportion of gynaecologists don't even know anything about the nerves in the pelvis, as they are not taught it, it is only the ones who advance know about the nerves, and nerve doctors, almost steer clear of the nerves in the pelvis, so we have to become our own health detectives and it is so un far as those with BUPA, or some savings get a slightly head start in the best there is to offer, however it doesn't mean a light bulb moment cure, but it does avoid unnecessary investigations, surgery and continuity of specialist. This problem has taken a lot of our savings, and I got my diagnosis within a month of my symptoms, but will I ever fully recover.........that remains to be seen.......I told myself I would be better by Christmas, but that is getting ever closer.
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Hattie, Judith 57 much prefer chatting on here than the other forum we can go on........really depressing, I have told myself to stay off one of them.xx
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Hi MJ, got home tonight to find a bill for £300.00 from the 'main man' as BUPA wouldn't pay for the anaesthetic for the nerve blocks or for the consultation prior to the procedure! BUPA also don't cover the cost of the Harley Street physio. You are completely right though, those of us who do have BUPA certainly do have a leg-up but we still have to to do a lot of our own investigation work to find the right consultants. I went completely down the wrong route to start with, the first urologist I saw said my bladder was normal after a cystoscopy, just a bit inflamed, and advised me to drink cranberry juice, he visibly flinched when I tried to explain about the excruciating pain I was getting in my clitoris! The first Gynae I saw said it was all menopause related VA and HRT would sort everything out. The vulva specialist I have since seen said I have no VA whatsoever!
I really dread to think what it must be like to have chronic pelvic pain and rely on your GP, mine wouldn't/couldn't diagnose anything beyond UTI and then thrush when I complained about the vaginal burning.
The support I have received from you and from this forum has helped me through some very dark times. It can be so isolating and helps to know there are others out there suffering with the same symptoms and treading the same path....
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Ha MJ yes :-\, like the strangely named HOPE. I am sorry but I am left feeling completely hopeless when I go on there....
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:hug: :bighug: and I am not emotional, but I think all us Pelvic pain fellow sufferers need one.
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:thankyou:
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:bighug: how about you getting together to write a book? Getting the info out there ? Would you be prepared to visit Dr Currie and talk about a video or similar that she can share with her colleagues?
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Yes I would, to do anything to get more awareness, as it looks like for me that the " curse" of this is being passed onto the next generation, my youngest daughter who is pregnant with her first is suffering quite badly with SPD which is basically an unstable pelvic floor, and my mother whom is under the same man in London is completely bed ridden with this condition, and my eldest daughter has " issues"for two weeks of every month with her period, she live in NZ and there is no help out there, so when she comes home at Christmas she will go and see the specialists I have seen. My middle daughter, is slightly living in fear at the moment I think. So it is really important for me, to do all I can for the sake of my children, who will always be me babies. :)
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HORMONES :cuss:
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MJ and Judith
You are doing the right thing trying to sort this quickly even though it is costing you. I was given vagifem and amitriptyline and a 2 year window for this to heal and then for me to just carry on with vagifem.
I sidestepped my GP at one point and went to see a consultant privately in Bristol - he explained everything about nerves to me and said that in years to come 'they will probably laugh at us' (his own words) as knowledge hopefully will be better.
Hattie
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:bighug: how about you getting together to write a book? Getting the info out there ? Would you be prepared to visit Dr Currie and talk about a video or similar that she can share with her colleagues?
CKLD
One step to awareness would be to get a sticky thread on here - you are more susceptible to this kind of thing happening during menopause and this is a menopause forum. Even this thread maybe helping someone out there.
I am trying to do my bit by getting contacts together locally so that women do not feel so isolated with this - a counsellor at my pain clinic is prepared to pass on someones email to me if they ask her - i can't think of any other way of doing it at the moment without posting my email openly at the clinic which i am not keen to do.
I couldn't follow through with your suggestions here CKLD - bit to overwhelming for me at the moment - i am struggling with my own reality and things are affecting my family and i do really need to concentrate on that - in fact i should probably get off this forum as well.
Hattie x
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I too have to get myself better first, physically and mentally as it is such a complicated problem, one shoe doesn't fit all.
But the London consultant said menopause is the time you see more of this, as the pelvic floor relaxes and takes the PN with it.
Things like Vulvodynia and IC are all " under the same umbrella " as the PN is in charge down there, it has control over our bladder, bowels, orgasm. Which is why peolpe who have IBS are more susceptible as this area is being constantly irritated, and peolpe who are hyper-mobile also as there Pelvic Floor is unstable.
Long term UITs and long term undiagnosed thrush can cause this also, and something as simple as a smear test it is just bad luck for us who have not been put together so well, it is also seen in horse riders, which I was for years, as was my youngest daughter who is pregnant and has SPD.
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Good afternoon ladies.
Do any of you get "spasms" with this pelvic pain. I woke this morning, and everything was "squeezing and flipping", made my head feel really weird, well, more than normal! with each little squeeze I get a little bit of adrenalin, been happening all day, goes into my bladder but I have no feeling of needing to pee, just left me with a low dull ache, and "spaced out head"! Really don't know how much more I can take!
Wanderer. xxx
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Hi Wanderer, yes I get spasms in my pelvic floor, they are horrible and cause quite a lot of heat. When I first went to see the specialist URO/Gynae who is now treating my bladder condition, he did an internal exam and commented on how hot it was in there, he said it was due to the pelvic floor muscles overworking. I tried to have a 'pre fanny-gate' day today and went out to a local shopping mall, the first time I have been there on my own since February when all this started. As soon as I sat down on a hard chair to have a cup of coffee the spasms and squeezes started and along with that the dreaded burning!
CLKD, I agree with Hattie, perhaps if ever this nightmare is behind me, I will happily discuss how I got myself better with anyone who needs help while struggling with chronic pelvic pain but, at the moment, coping with my own life and the limitations this has put on me takes all of my strength. I am having to try and hold down a fairly stressful job in Central London and I can't even sit on the train anymore during my commute. I also have to fit in the many appointments with Harley Street specialists, four different ones the week before last, physio, pain management specialist for nerve blocks, URO/Gynae and finally vulva specialist, it is physically draining as well as emotionally draining!
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:bighug:
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Yes I did get lots of spasms, but mine are reducing pretty quickly ( touch wood ), it is as J57 says hyper-tonic pelvic floor muscles. If you are able try and go for a good fast walk everyday, breathing down into the pelvic floor, and letting it all hang out ( tummy wise) we are the opposite to the prolapse ladies. Although Kegels aren't that good for any of us actually, it is more to do with posture, and Yoga was designed for the mans body, not ladies and there are a lot of the exercises in yoga women shouldn't do.
Also the problem is we are now really tuned into are pelvic floors, and notice far more than we did before, if you lie down and close your eyes and do body mapping, start at the top and work down , you will find all sorts of pains you just ignore, but this has now become tuned into our brains and central nervous system, which is why they give us the pain drugs to try and cut off the signals to the brain.
However I am not wholly convinced, because I now wake every morning pain free, and my pains don't start until about twoish these days, so of I was looking for it, my mind would make it happen in the am to. If you all understand that then well done. ;D
I have had an almost pain free day today, but who knows what tomorrow will bring. Judith57 the golden rule for us is to NEVER sit on a hard chair again, even if / when we get mended. ( positive thinking).
Wanderer I think it would be a very good idea for you to go to the vulva specialist judith57 and I see, she gives a very thorough vaginal MOT. it's a way of crossing the Ts and doting the Is. She works along side the Physio, and uro/gynae she said Judith57 and I couldn't have found a better team.
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Wanderer the reason your head felt funny is more than likely what they call " centralisation" which means the rest of the body is on red alert and the nervous system wants to join in the party, although I do not consider it a party more like an unwanted guest gate crashing a party.
I the early days, I could actually feel it going up my spine to my head, I have been left with general neuropathy from it, which is reducing but is quite common with pelvic pain.
You can tell I have been reading " medical papers" my physio says she can't fob me off, as I know exactly what's going on.
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Hi MJ, you are quite right, I am conscious of my whole pelvic floor all the time but today, while walking around the shops, and trying really hard to release everything, there were small windows of time when I forgot about it. There were only wooden stools available in Waitrose, I just wanted to try and see if I could sit on one for about ten minutes - sadly the answer is still no! I find this all so confusing and can't really understand how my life has become so compromised... :'( the journey home was difficult as all the roads were jammed due to M25 problems but I consider today a minor victory. I didn't spend the day on the sofa feeling sorry for myself!
Wanderer, forgot to mention my electric toothbrush brings on the spasms, as did the Jools Holland concert last week, the couple above me have builders in and their drills are playing havoc with my pelvic floor. I plucked up the courage to have a pedicure on my birthday earlier this month and although the sitting was OK because I was sitting on a bed, the vibrating foot spa sent my pelvis twitching...
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Also the problem is we are now really tuned into are pelvic floors, and notice far more than we did before, if you lie down and close your eyes and do body mapping, start at the top and work down , you will find all sorts of pains you just ignore, but this has now become tuned into our brains and central nervous system, which is why they give us the pain drugs to try and cut off the signals to the brain.
However I am not wholly convinced, because I now wake every morning pain free, and my pains don't start until about twoish these days, so of I was looking for it, my mind would make it happen in the am to. If you all understand that then well done. ;D
As i see this !
The body mapping as you describe is on the Mindfulness CD by Jon Kabat Zin i mentioned earlier.
As you say as you go through it old pains that you have had in other areas of the body come back to light - but these are ones that you no longer notice generally. I could feel all my old sinus trouble but it doesn't bother me now generally.
As you say if it was totally the brain controlling you would wake up in pain - so it seems it has to be the localised nerves that are still somehow generating the signals for pain and this can only be getting under control by the medical help and everything else you are using.
The Mindfulness for Pain Relief CD by Jon Kabat Zin is a spin off from his centre in America to help people in chronic pain - it teaches you to accept the painful part of your body just as sensations in part of your body.
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I wonder whether any of you suffering from this really dreadful sounding condition have been offered valium vaginally? I've read that it has been shown to give quite a good result. There is a thread on Hystersisters http://www.hystersisters.com/vb2/showthread.php't=533532
Taz x
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Taz
I have never been offered valium vaginally at NHS Pain Clinic - you may be able to get it privately though.
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I just wondered whether this was a form of treatment on the NHS as it does seem that sufferers have been getting some quite good results from it. It seems a shame if it isn't being offered routinely.
Taz x
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Yes I know about them, you can also get ones that go up the back passage, more along the lines of Ibroprfen, for those that can't take them with stomach problems. I no the second one is available on the NHS. I think the Valium is to, problem is a lot of us with this problem are so sensitive to the fillers.
In America they can have them made in compounding pharmacies, so they use fillers suitable for sensitive skin.
I am going back to see the Vulva specialist soon, I will ask her.
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I did ask about Baclofen once at the NHS pain clinic but the consultant said it wouldn't be suitable.
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Suppositories are absorbed quicker than any other method of medication ;)
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Good morning ladies. Wow, you really know your stuff, Maryjane and Judith57! My spasms are in two places, I either get them in the pelvis when the VA is bad, or in the stomach when my digestion is struggling. I have bad constipation from time to time, and that seems to be when the stomach spasms are really bad, no pain, just squeezing, enough to wake me up! I also get like a vibration. It is always worse after a "bad" BM, guess that is the pelvic floor trying to relax, but it can't! I have started taking Flax/Linseed with my food, both oil and ground, to help motility, but my head is spinning with all the pills, patches, lotions and potions that have been recommended!!
This vulval specialist that you mention, is that the one that you PM'd me about, Maryjane? I am a bit lost now!!
Wanderer. xxx
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Yes that is the one I recommended, it is a way of ticking off everything she is so thorough.
I have flaxseed every morning with my porridge. Yes bowel movements will make it worse if constipated, that is a huge no no with pelvic issues. When I sit on the loo I have a block of wood to put my feet on, this puts the pelvis in a perfect position for " going", look up something called a " squatty potty" lol that is what the wood is doing, but it was free, just need the right height, roughly two old type yellow pages.
I empty my bowels with minimum pushing in seconds, to avoid annoying the PN nerve. There are massages you can do before you "go" so that you have moved it along without any pushing.
So your head is spinning, I would start off with the Vulva specialist I mentioned, to rule out anything else skin wise going on, then physio, she will tell you if she feels you need to see the uro/gynae J57 and myself are using, there is another lady on her who was recommended by a different consultant to see the uro/gynae we are.
Regards the lotions and potions, I have managed to get away with minimal, however I have also managed to really " nurse " this problem, I just take 15mg of amitriptyline , and a antihistamine, I am also on week nine of rotational antibs for the pretty bad bladder infection I have had also.
So far I have had no side effects from the antibs, but will be going to the vulva specialist when I finish the course for swabs to be done.
I am one of those that has to know what I am dealing with, as most of the gynaes/gps haven't a clue, I may not be/get completely cured but it stops lots of unnecessary investigations that can make it all worse.
The key is just trying to get the pelvic floor to relax, which is easier said than done, and by the book by Amy Stein about pelvic pain, explains it all.xxxx
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Hi Wanderer, I agree with MJ. Go and see the vulva specialist. She has confirmed that I have no VA whatsoever, the first Gynae I saw said the burning pain was caused by VA and prescribed Vagifem. The burning is actually caused by nerve pain, not VA. I am now on my tenth consecutive week of anti-biotics, in addition to the five courses that I had prior to seeing the URO/Gynae who is now treating me. Unsurprisingly, I have had a few bouts of thrush during this time and the vulva specialist is truly lovely, the first time I saw her I didn't have thrush but the second time I did have thrush brewing and she phoned me up to let me know and she now has me on a weekly anti-fungal treatment while I am on the anti-biotics. It is just comforting to know that there is nothing sinister going on 'outside'. I had previously taken myself off to the local STD clinic during one of the previous bad attacks of thrush - not my finest hour, turning up on a Monday morning with all the teenagers who had had unprotected sex over the weekend!
Also, the physio that MJ and I see had chronic pelvic pain herself for two years so she knows exactly what it is like and how it messes with our minds! I take great comfort from the fact that she is now 100% better.
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Also, Wanderer agree with all the potions, at the beginning of this year I was taking NOTHING at all. Now I take an anti-biotic 3 times a day, cimetidine twice a day (to help my bladder heal) anti-histamine once a day, HRT and amitriptyline at night, anti-thrush treatment once a week, as well as the pro-biotic and quercetin recommended by the URO/Gynae and physio, I would rattle if you shook me! :-\
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hope you don't mind me asking -Are you aged 57 Judith as your name implies ? as we all seem to be different ages- i to went to the STD clinic as the acupuncturist i saw questioned whether i had had herpes - so i went to get tested - felt like a bit of a wally amongst a lot of youngsters but at the clinic they were very efficient.
Wanderer
I think if you were assessed in London you might have more faith in all the pills and potions that you are using than you have at the moment.
Hattie
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Hi Hattie, I was born in 1957 so, coincidentally, I did turn 57 earlier this month. Just when I should be thinking about easing down and enjoying myself my world has shrunk somewhat, could never even consider getting on an aeroplane in this state....
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I am 59 - 60 in a few months- my muscle tightness is mainly on one side but i know how you feel - we haven't planned anything away as we would like to for some time and in your head you so want to.
Pain psychologist has said to me do things in small steps that are manageable and set goals that are manageable - like just a weekend away in a self catering cottage - but i have still not done it. It is a whole new way of thinking which i find hard.
It is not the same i know but maybe keep the aeroplane as a goal for when you are better :)
Hattie X
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Thank you once again ladies, I am having to be "babied" through this! I too am nearly 57, must be something about 1957!!
My pelvic pain is slightly different from the bladder issue point of view, as I recently had a cystoscopy to check the bladder health, consultant said all was fine but that the urethra was very, very narrow. He dilated it using the thinnest probe he had. I do get weird sensations down there but the bladder seems ok, although I do have stress incontinence, and have to go immediately! But maybe it is the bladder that is having spasms, or do you think it is the pelvic floor? Ooohh, I am so confused!!
I laughed at your post Judith57, about attending the sexual health clinic. I used to work for the NHS, and part of my job was making appointments for the sexual health clinics in part of the North East, and it was like an avalanche of calls on a Monday morning, mucky devils!!
I will make some contact with the suggested clinicians now you have given me such help, I have already contacted the physio mentioned.
I did see an alternative therapist about irritants, and she said that I had Candida, but that is not recognised by health professionals is it? She said not to have dairy, tea, coffee, many fruits, pop, alcohol etc..... I will try it, but I have lost faith in so many theories, as nothing seems to work! Although, there was a window of 24 hours, when I felt really well, and that was when I took Picolax and fasted for a colonoscopy, which was normal btw, and that was because my stomach was empty! And I did read that over 80% of women with IBS have pelvic floor issues, so who knows.....
Again many thanks.
Wanderer. xxx
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Candida = thrush and this is certainly dealt with by the NHS. Or have a private chat with a pharmacist.
As for stopping foods, this has to be done carefully and under superivision by a health professional otherwise by stopping everything at once, you won't know which food, if any, is causing problems. Dairy would probably be the first to stop, speaking with a Nutrisionist recently he recommended it has to be done for 3 months. Completely. Keeping a food diary will help jotting down any alterations you notice. Then that particular food stuff is re-introduced.
As for urine colour .......... oh grubs ready be back later ;D
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Right - grub down the hatch ;-)
urine colour - the first pee of the day is probably dark, that's OK. During the day urine should be straw coloured, lighter = one is drinking too much, darker and one needs to increase the amount of fluids taken. Fluid is from food intake, as well as water, tea, coffee etc..
Fruits have natural sugars which can aggravate thrush symptoms, as can alcohol. So keeping a food diary plus a week of recipes to follow is 1 way to find out what one might be sensitive too. Not many people have a true allergy, intolerance can occur at any age …….
I have found that when I eat too much red meat my whole gut system becomes sluggish for several days!
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The one thing food wise that has stopped dead my bloating is cutting out all wheat and gluten.
Since I have been on these antibs, which I hope I only have another ten days left ( not that I'm counting ) my stomach has never been so good, so explain that one!!
Regards bladder pain UTIs Judith 57 had what seemed obviously a urine infection, but her p sample was clear, I had no signs of a p infection and I had e-coli, the difference being j57s had gone into the bladder wall so urine samples do not pick up those infections, and the problem with nerve damage is where you think it hurts is not necessarily where the problem is, like phantom limb pain. What I thought was one area, a lot of those problems where coming from the bladder. The uro/gynae said pelvic floor pain, generally starts in the bladder, womb or bowel.
Wanderer, there are no guarantees of getting better, but my research suggests we have a good chance with the right multi-disciplinary team, if you have bupa great, if like me you don't then be prepared!!!!
I couldn't do much in the state that I was, however much money we have.
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I just lost a really long post I was writing, will have to try and remember it!
Hattie, the little steps is a very good idea, but I do find that when I do manage to achieve something it makes me somewhat sad as it gives me little glimpses of what my life used to be like before this all started. I also start off feeling very positive and then when I try to do something and can't it brings me crashing down to earth with a bump, just simple things like sitting on the train on the way to work (like normal people :'().
I also find that just the thought of sitting makes everything tense up so there must be something going on psychologically now. I have just been for a walk in Greenwich Park and made myself sit on a bench in the sunshine for ten minutes. As soon as I sat down everything started to tense up but I made myself breathe through it.
Wanderer, I sometimes wonder if the spasms are coming from the bladder or the pelvic floor but I think they are coming from the pelvic floor. The STD clinic I went to was a 'turn up and take a number' type, I had to sit and wait on a little hard chair for over an hour so I kept walking round and round the waiting room as I didn't want to miss my slot!
An overgrowth of candida can cause all kinds of problems in the body apart from vaginal thrush. It can cause bloating, joint pain, asthma, the list is endless. The URO/Gynae that I see has me on a histamine intolerance diet, it is very similar to an anti-candida diet. I am a bit lax and should really follow it more closely, if I knew it would mend me I would follow it to the letter.
About fifteen years ago I had really bad chest pains, loads of tests and nothing found. Eventually, I took myself off to see a homeopath at The Hale Clinic near Regents Park - not sure if it is still there. The man I saw had a machine with some rods in and a probe which he moved over the soles of my feet. He then adjusted the rods in the machine according to the reaction he was getting from the probe - all very weird! Anyway, he gave me a list of foods to avoid, a lot of little white pills and some yellow powder to mix in with orange juice and drink, I think it was an anti-fungal medication. After two to three weeks the chest pains completely went so it does make you wonder!
I think we all need to take ourselves off to a retreat where we can practice mindfulness, have intensive physio and follow a special diet. MJ would keep us on the straight and narrow - she knows more than the experts!
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Judith57
i understand your feeling of sadness - i get it to - because you are still doing things but not in the bodily state that you used to be in and as you have said twice 'i made myself' do ... when normally you would just do it. I started cleaning the bathroom the other day and had to stop and go elsewhere to calm down then go back to it.
The lady i saw through the pain clinic was a pain psychologist - she taught me about Pacing - which i find hard to apply to the pelvic area - maybe different if you had a bad back - Goal Setting - doing what is achievable for you - Relaxation techniques and something that we spent a lot of time on which was the connection between Thoughts, Feelings and Actions that 'run' between each other.
How your thoughts affect your feelings and consequently your actions and vice versa and inbetween.
She also said to use Distraction - like watching TV which takes your mind off pain - as a reward - i can tend to use Distraction too much.
Do you think it would help you to see someone similar through your pain clinic ? or does your CBT cover things ?
Hattie x
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Hi Hattie, the CBT guy that I see is very nice but we usually end up just having a nice chat, which actually cheers me up no end. I have had my five BUPA sessions with him and need to phone them up to ask if I can have more.....the pain specialist who does my nerve blocks recommended a physio under his team at the Pain Management Dept at The National Hospital for Neurology and Neurosurgery. She has given me a huge amount of reading material about Female Pelvic Pain and pacing and rewards. The thing is, she told me to try and wean myself off the donut cushion that I use in the office. She told me ten minutes off, twenty minutes on etc etc. I then got into the office and sat on the chair without my cushion. I find it very diffucult to understand how I sat on that same chair for over twenty years with no problem and now find it so painful. Anyway, I stupidly thought 'if ten minutes is good then let's see how long I can tolerate this' I sat through the pain for three hours until everything was positively 'fizzing' as if I was on an electric chair and now I have ended up causing a whole host of other problems...She also gave me information about setting SMART goals and pacing and rewards but I couldn't really get my head around rewarding myself with a cup of tea and a biscuit if I did a certain activity. I use all my energy going to work and trying to get myself better and, just for that, I reward myself whenever I feel like it, just for hanging in here :-\
I do try to set myself goals but I am much more careful now to listen to my body. I am trying to sit on the train to and from work, even if it is just for some of the journey but if I am having a flare-up with my pain I avoid sitting as I don't want things to get worse. Going to the local shopping mall on Friday was a huge achievement but also frustrating because things just aren't the 'same'.
I am naturally quite a strong person and have been through some tough times, my husband died from cancer of the bone marrow when I was 49 and my father died eighteen months later, but this bloody pelvic pain has almost brought me to my knees. I think the worst moment was about six weeks ago, during the flare-up after going cold turkey on the cushion, I actually leant against a building close to Trafalgar Square on my way to the station to get my train home and sobbed uncontrollably like a baby :'( :'( :'(
To be perfectly honest my best therapy through this has been the help and support of Mary Jane, we have literally written a couple of novel's worth of e-mails back and forth and laughed and cried together. Also, if I look at some of my earlier posts on this site (and MJ's) it reminds me how far we have both come.
So this week I have physio after work on Tuesday and on Wednesday I have the URO/Gynae after work. Just for that I deserve a reward :)
I am going to reward myself now with a nice bath :)
xxxx
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Ooh and Hattie, forgot to say, my reward for taking myself off to the shopping centre on Friday was a new coat, even that didn't feel the same though because previously I would be planning a trip somewhere nice to wear it...
My reward yesterday, for walking into the village, was two pairs of new shoes :rofl:
Well, a girl has to get her pleasures somewhere.....
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JUDITH 57
How are you ? Just wanted to apologise as i think my last posts upset you but i didn't intend them to.
Sorry that it has taken me some time to post this - sometimes i need to steer clear of the subject for a while - Maryjane has been a big help and support to me to.
Hattie X
TO ALL
It is a great pity that Emma will not make 'How to cope with pelvic pain' a sticky thread - i have now asked as well and the reply was that the subject isn't popular enough (as the thread had dropped back) to warrant it.
Could any other members especially longstanding ones possibly ask Emma as well ?
Hattie
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Hi Hattie, no your post didn't upset me at all in fact I was worried that I may have upset you, we are all on this grizzly journey together and it is very helpful to know that there are others struggling with the confusing symptoms and the fact that our bodies are a stranger to us now...
I had a horrible time last weekend, I think my body is protesting against all the anti-biotics now. I could feel that I had thrush brewing so took a fluconazale capsule but it re-acted badly to the anti-biotic that I am taking and I spent two days in bed with flu symptoms, I have taken a few days leave from work this week but am now going down with a cold, my poor body is incapable of fighting any infection now. I went to see a medical herbalist this week and am now deciding whether to ditch the 6 month anti-biotic regime and go down her route. I don't know what to do for the best really. These things won't help with the pudendal nerve problem though.
My partner came to see me yesterday and we went to a restaurant in the afternoon and it was quite successful but I had to take my cushion with me. It was the first time that we have been out for ages so it was a minor victory. Today we drove to the coast and I sat on my special cushion in the passenger seat, I find it so hard to accept the limitations that this has put on me.
I go to see the pain management specialist on Tuesday but nerve blocks don't seem to be the way forward for me.
How are you doing? xxx
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Judith57
Glad that i didn't upset you - you didn't upset me either - we are both different people tackling this as best as possible. I've pretty much given up going out shopping and do everything on the internet now.
I had one unguided nerve block done transvaginally about 2 years ago now - everything blew up a bit afterwards and the pain was no different - was told diagnostically it meant that it was not the pudendal nerve - i believe though that a branch off the pudendal nerve going off into the vulva is affected in me. When i open my bowels or break wind for some reason the pain dissipates for a brief moment. I accepted the block on the spot when offered it as i knew if i went home that i would be chewing over a decision cos i am like that ! - i am not sure though if it didn't make things worse in general - as you say it is difficult to know quite what to do for the best each time.
I've had a couple of bad days this week mainly with what i call the cheese wire pulling effect but it is not so bad today.
Do you find when you are out that the pain starts to take second place for a while ?
Is the medical herbalist a chinese type one ? I wonder what they do in China for pudendal nerve problems - would we know over here if they are taking a completely different approach.
Hope that your cold gets better quickly.
Hattie X
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I didn't get a reply to my e-mail about making it a sticky :-( , that is the problem with this whole " problem". The professionals that I have seen have said that at any one time 2/3rds of the population have some sort of pelvic pain, and 1/3rd have it all the time female and male. The London pain clinic see ten new cases a week, times that with all the pain clinics around the country and many patients being fobbed off with " it's physiological " by there Gps, walk a day in our shoes, there may not be a miracle cure but empathy is 50% of the battle.
Hi Hattie....keeping busy does help......my dog walk i do every day is done at a very fast pace, just enough to get a sweat on ( poor dog one of them is eleven, but vet says he's one of the leanest Westies she seen), and that really gets the good endorphins going which are also natures own pain relief.
I have gone backwards at the moment also, although today I have been almost pain free, but last night I had a small cry, doesn't happen very often anymore but does help.
My mother had a nerve block in London last week, and she is far worse than when she went. I go to the pain clinic the beginning of October in London, and the specialist I am seeing is more " holistic" but I have decided not to have a nerve block, the only people that will do nerve blocks on me is the Professor in France for a diagnosis, and then I would have a good talk with him as the way forward.
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Hi Hattie, I do find that when I am out and about the pain is a lot better but the main problem that has manifested itself now is an inability to sit down due to a sharp pain in my right buttock, as soon as I put pressure on it my pelvic floor starts to spasm and then everything starts burning. I have been walking around Whitstable today carrying my special cushion. I have another cushion that I use at work and when I get myself comfortable on that and engrossed in work I can forget about the pain for a while. The only thing is I get quite exhausted as I cannot sit on the train and some nights I don't get much sleep. I really feel as though I am limping through my life and I think I will need to give up work shortly.
The herbalist I saw wasn't Chinese. I went to see a Chinese doctor a couple of years ago when I was suffering from insomnia and neck and shoulder pain, I paid a thousand pounds up front for some special 'tea' and a course of twelve weekly acupuncture and massage sessions but he scared me to death on week three by saying that he thought I had had a stroke and needed to have a scan on my brain. I managed to persuade a rheumatologist to refer me for a brain scan and everything was normal. When I came to the end of my twelve sessions he said I needed more treatment and wanted another thousand pounds, I was feeling a lot better by then so didn't go back. I didn't mention my pudendal nerve problem to this herbalist as I went to see her really about the state of my gut after all the anti-biotics, last week I felt as though I was fermenting!
I know what you mean by the cheese-wire effect, I used to get that but haven't had that for a while now. The pain for me now is in my right buttock and around my anus, if I sit without my cushion though I get the vulval pain.
This is turning into a real humdinger of a cold on top of everything else!!!
xxxx
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I may try again for a sticky thread Maryjane - it doesn't seem much to ask for.
A couple of ladies on here recently with VA have written how things are feeling worse after sitting down - which is one sign of the pudendal nerve getting irritated.
Having a sticky thread may help someone make the right informed decisions as to what to do as there is little general help out there for pelvic pain and you are left to yourself mostly with medics that tbh in some cases aren't really sure either.
Going for a walk i find makes the area look better too - i guess more blood is pumping around.
I had read about nerve blocks before i had it done - things were gradually getting worse for me anyway so maybe if i hadn't had it done i would have been left wondering if it would of helped.
Sorry that you have had a set back as it is difficult to know what you have done to cause it - glad though that you are now having some painfree days.
Hattie X
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Hi Judith
Sorry that things are so bad - i had a part time job that i was due to go back to but couldn't then do it - it meant i lost an outlet and some structure to a week. Imagine giving up your job will be hard especially when it is not really by your choice. My daughter is an accountant and has a bright and active mind.
We used to have a chinese practice/shop in town with lots of jars and stuff in the window - sounds like it is best avoided ! I tried some acupuncture chinese style at a local centre the beginning of all this but it really was a waste of time. I also had some western style acupuncture done at the pain clinic which got nearer the mark but didn't help. I am all up for trying alternatives to some degree though.
If i can get engrossed in something the pain doesn't dictate so much for a while - i just get sad that it is there waiting to take over again afterwards. I usually make the effort with family to do small things that can take my mind away but get upset that i can't commit like i used to. I can have an arranged meal with my daughter but can't arrange to freely meet up or go out with her anymore like i used to.
I've got one hot dot at the back of the vulva which i now think is a nasty trigger point as there are tight muscles surrounding, general burning and the cheese wire which as you know is like someone pulling one up between your legs ! The anal pain must be painful.
Hope the cold passes soon.
Hattie X
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Hi Hattie......I have read some threads recently also that I have thought that sounds like the PN to me, my physio is getting a lot of new cases as it is starting to be found on the internet via forums etc. it really is the main nerve down there that's is in "charge", and as you and Judith 57 know I have really researched this, and there are quite a few specialists that also now realise that the PN nerve and IC are linked, and Vulvudynia are also linked.
Also some ladies get the PN problem after a hysterectomy, colonoscopy, childbirth especially forceps delivery and an untreated UTI there are more, and more ways of getting it, and there are an awful lot of ladies/men who have it and don't get a diagnosis, when I started this journey of diagnosis my local specialist hadn't a clue, I then went off on my own trail, got my diagnosis went back to see her and she suddenly had two new ladies with the condition, when I first had it I took a picture in of the nerve pathway of the PN and I said that's what I think I have! that nerve gets in everywhere.........and this is my own personal opinion nothing medical! but I think the PN is probably the one that gets in on the game with VA.
I think my set back is being caused by my bladder, as I was a lot better on the nitrofurantion I go back to see the uro/gynae on Wednesday, although so far having another good day.
If you can Hattie try and set a goal of going for a good walk everyday, and perhaps stop off for lunch " with the friendly" cushion in tow. Walking really is the one thing that has kept me sane, just listen to everything around, and yes it is good for the blood supply especially down there as we are designed to keep on the go, I go in the afternoon as well for a gentle stroll.
Xxxxxx
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You are right i need to get back to a regular walk - i was doing so at one time but have slipped back recently - the cooler weather suits me so i have no excuse.
Well i have emailed Emma again and asked for sticky thread to be reconsidered considering that one of the factors can be Menopause - somewhere permanent to share and let others have some information - anything here is going to roll away. Fingers crossed.
Hattie X
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Hi hope you don't mind me butting in but lots of popular threads aren't sticky threads but if they are popular will always be at the top. What you could do is ask to get the thread's title changed to what the main issue is (or start a new one) and then if it is a common issue that members want to find-out or post about then it will always appear on the first page of that section or you can bump it up? Do you see what I mean? The Burning Club is one of these (Dancinggirl started this one) and CLKD started one called "My Bladder" which can be for anyone to talk about their bladder. We also have weather ones, and What have you done today, as well as wild birds, and they are never far from the top!
Hope this isn't too off topic but thought it might help
Hurdity x
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Thanks Hurdity
For the moment i have asked Emma if it is possible to have a new sticky thread started with title 'How to cope with pelvic pain' or some similar title on the premise that popularity is not the main issue here but having an easily available thread is, as information is sparse elsewhere.
i think Wanderer would have to ask for the title of this thread to be changed as she started it.
I will leave it to Maryjane if she wishes to start a newly titled thread - at the moment i am trying to back up her original idea.
I will post back if i get a reply from Emma.
Hattie X
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I did reply in an email about this. It was discussed and decided that if it was popular it would stay at the top rather than make it sticky.
As Hurdity has suggested, we could rename a thread and merge other similar threads with it.
Emma
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I have now asked Wanderer if she could possibly ask for this thread to be renamed with Pelvic Pain somewhere in the title.
Hattie X
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Thanks Wanderer & Emma
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I see we have been renamed pelvic pain, not sure that warrants a :) or a :'( because pelvic pain is so horrible!
Hattie, I am in the midst of a major flare-up at the moment, I don't know what I have done to cause it. I have the cheese-wire feeling, terrible burning, I feel as if there is a large tampon stuck in my vagina at the wrong angle and also tight elastic bands around the tops of my legs and fizzing buttocks! I wanted to just run away this afternoon but there is nowhere to run to!
I went to see the pain management specialist this morning and he has increased my dose of amitriptyline and booked me in for two more nerve blocks next Tuesday. I am slightly wary of having more nerve blocks, and MJ has quite rightly told me to think twice before having any more, but to be honest I am in so much pain at the moment I will try anything.
Does anyone else have bladder issues with their pelvic pain?
I have been 'googling' like crazy this afternoon looking for answers. My google search history this afternoon makes for very odd reading: barbed wire in vagina, razor blades in vagina. I still find it very difficult to understand how I have ended up in this sorry state :'(
I will need to remind myself that this flare-up will pass and I will feel better but I despair of ever feeling normal again.
Are there any pelvic pain sufferers out there who are now pain-free?
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So sorry Judith - this sounds like hell.
I know you don't like the H forum but there is a lady called M (in UK) on there who a few years back went to the same pain management Dr B that you are going to.
She posted one time that he gave her 5 blocks in all and that she felt with hindsight that it was too many. She doesn't often post but you will find her by a search on there. I sent her a pm when i went to the physio in Southampton this May.
She had been to the same physio for 2 years and she kindly told me about her. It is easy to see a professional and naturally think that they are going to help you because you desperately want them to. i found that this physio wasn't really listening to me and M confirmed that she had helped her to some extent but didn't always listen to her. She may be able to talk to you about more nerve blocks and her opinion of them and Dr B.
There is one other lady on there who saw Dr B if i can remember her name i will post here again - will look in a minute.
I had the one nerve block done which was sold to me as being diagnostic but also that the steroid element could improve things so i accepted it. Too late to regret it but i can't be entirely sure if it hasn't made me worse.
I really do not know what else to suggest but if it is of any comfort to you i have probably not taken the right decisions each time with this.
:hug:
Hattie X
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Thank you Hattie. It is all so confusing as my body is a stranger to me now much of the time. I definitely made things worse a few weeks ago by trying to sit on my office chair without the foam donut.
I spent over £900.00 last week going to a Harley Street herbalist as I was worried about the effect on my body of all the anti-biotics. I need to arrange some blood and urine tests but feel too unwell at the moment. I will try to sort them out at the end of the week, especially as I have already paid for them!
The Hope forum does depress me I am afraid, but I'm sure my story would depress others equally. I still have my head in the sand and my fingers in my ears somewhat....
Dr B only offers three nerve blocks, but you are right it is so easy to see them as 'Gods' who hold the magic cure and will make everything alright. He drew me some diagrams this morning explaining how the role of the painful bladder may be implicated in all of this. Did your pelvic pain start with a UTI?
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Hattie re nerve blocks, the guy in France said there is a real danger of making the PN nerve worse as it can damage it and cause ateophy around the muscle sight, in other words almost tightening the area further.
Dr B is a pain specialist, and nerve blocking backs is very different to this nerve where it is located and the job it needs to do.
I spoke to another lady on another forum who had three nerve blocks and said it was to many and it made it worse, and ended up going to France for surgery. I am going to give until after Christmas and see how I am and will go to France as there is nothing other than physio that the UK can do, and the surgeons here are just not experienced enough, but that is a very big step the lady who runs another forum you and I Hattie are a member of has a lot of friends who have had the surgery and are now getting on with there lives, as does my physio have some of his patients.xxx
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I'll come with you to France MJ.... :scottie:
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;D you need one of those dogs best medicine ever, night time snuggles with a dog are scrummy.x
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I might come and 'borrow' Bertie xxxx
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Judith
I probably shouldn't be giving other forum names so have changed previous post. I will pm you these other names on the H forum.
There is C who has seen Dr B - she is a success story - had a bladder problem and physio but she is in her 30s.
AS is another lady aged 60 who has seen Dr B.
My problem didn't start with a UTI - short story at 55 postmeno i had nerve irritation in one vulva was given 25mcg vagifem and amitriptyline and Eumovate cream by a gynae. The Eumovate did nothing and was stopped after 3months. Was told 2yrs of amitriptyline would solve it and then to carry on with vagifem. I found though that during this time things just got worse i gradually felt a lot of burning until one day i was sat out in the garden and came back in and said to my husband that i could feel as if something was poking in my vagina. After internet searching that set me on the pudendal route and seeing a doctor in Bristol who referred me back locally to a pain clinic.
Urine has been my enemy throughout this as it constantly keeps irritating the vulva nerves - i have tried various barriers but they also started to cause more irritation.
The 25mcg vagifem didn't stop things happening either.
I hope that your partner is supportive as you are on your own - my husband retired early because i was not coping physically and mentally. We live miles away from family due to work circumstances and i have always been organised and just got on with everyday things for my own family also managed other illness/operations that have been wrong with me but this as you have said this floors you somewhat.
I am just another depressing story i'm afraid ! i will pm the names
Hattie X
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Maryjane
The nerve block i had blew everything up painwise and physically to look at so i wouldn't be surprised if some of my muscle tightening now is due to it as i didn't have much before.
As you say it is one thing to give an epidural - which this is similar to - in the back maybe a bit more experimental 'down below'.
I enquired about going to France - just an initial email - i think they can help you with surgery if they find that the nerve is trapped but even then it is a long unknown journey to recovery and you would need a physio back here in the UK to help you through it - you have a good one.
A big decision.
Hattie X
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Wow! This is such an unresearched subject! I think in America they have Pudental and Pelvic Pain specialists, I saw a very good video online, grrr..., can't remember who it was, but he was showing a model of the pelvis and explaining exactly what happens to the nerves, tendons etc., when inflammation is present, either through injury or hormonal changes, made such sense!
Mine is slightly more weird (just had to be!), my pain comes up through the vagina, right up into the cervix, and then causes tightness and spasms, it makes me feel weird, nervous and agitated, like biting on a piece of silver paper, then it goes into my buttock, and aches like hell! Why?!!!!! The spasms then affect my bowel, God help me, I have seen so many consultants who are useless, not even sure a pelvic physio can help, as I am sure it is the vaginal atrophy that is setting the nerves on edge! Vagifem doesn't touch it. Are there any vaginal experts out there, aside from the Porn industry!!
With you always ladies!
PS. I asked Emma to change the title, as it is such a worrying symptom!
WANDERER. xxx
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There is a lot of information about the causes of pelvic pain and some very good advice on a website called IC Network, however having scoured it, menopause and vaginal atrophy don't seem to feature a great deal. There is an interesting article entitled 'An Interview with Dr Robert Echenberg', here is an excerpt from it:
He's now helping to define a new pelvic pain syndrome, Complex Abdominal Pelvic Pain Syndrome (CAPPS), that will have many patients say “That's me! That's my life.†If you've suffered from a variety of ills associated with the bladder, the bowel, and the reproductive tract, this may explain the connection. It also adds new context for patients who thought that they were having recurring UTI's or yeast infections, only to be told that no infection was found. Dr. Echenberg and the newest research on chronic pain itself suggest that how our body processes pain messages is a large part
of the problem.
Patients visiting his clinic today, mostly women though he does work with a smaller number of men, range from teens through menopause. They have seen numerous physicians and many were told that it's “all in their heads.†They may struggle with what he calls the evil triplets: IC, endometriosis and irritable bowel syndrome.
These patients share a common set of symptoms from multiple organs, including:
the bladder - frequency, urgency, nocturia
the bowel – diarrhea, constipation associated with IBS
lower abdominal bloating and pressure
the vagina – itching, burning and sensitivity
the vulva – pain, burning and/or itching
sexual pain (entrance, during and/or after)
lower abdominal pain
Many women suffer from general vulvodynia, vulvar vestibulodynia and several vulvar skin disorders such as lichen simplex and sclerosis. Pain in the clitoris (clitorodynia) and persistent genital arousal disorder (PGAD) is also seen. Many of his male patients also suffer from aspects of pudendal nerve neuralgias. Pelvic floor dysfunction, a clenching of the pelvic floor, is present in 100% of his patient population.
I'm not sure how relevant it is but worth a look? Hope this helps.
Morwenna x
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Hi Ladies ( the miserable thread) :-X.
Wanderer........the PN gives all sorts of different pain for different people, from numbness, burning, stabbing,shooting in the pelvis up the back, down the legs, one sympton or tho whole lot. The top top expert on the subject is in " Nantes" France a Professor, I have found by digging deep many of his papers. You have to think of your pelvic floor being in constant cramp like your leg, it is tightening around the nerve/nerves pinching it/them, now there are more nerves than the Pudendal nerve, however this is more often than not the culprit, and in a way it is possibly immaterial which nerve it is, the only different being the PN if you look at it is I control of sooooo much down there, and IBS sufferes are more likely to get PN, and IC will have the PN nerve involved as does Vulvodynia, your local GP and probably uro/gynae won't know about this nerve, as believe it or not they are not taught about nerves particularly in there training, and nureosurgeon don't really get involved in the pelvis nerves, that's why we are up a creek without a paddle :-\
I have just got back from London to see one of my three specialists this was the uro/gynaes I still have an infection UTIS that is now imbedded in my bladder wall, I have been put on Vagifem and local oestrogen for outside,he also found an old stitch from 28 years ago from my huge episiotomy is going to be left for now as the last thing we want to do is start cutting an already aggrivated vagina, when the specialist is pulling faces that resemble this ??? :-\ you know all is not well.
I go to UCHL in two weeks this is the only pelvic pain clinic in the country, anyone can go there it has taken me seven months to get my appointment as they are so busy with pelvic pain , I saw one of the Doctors in February who told me to go onto his NHS list as I had major issues and self paying.
I had something called an MRI Neurography which is for all the nerves from the spine down and everything in the pelvic area, I have nerve impingement at L5 which is what controls the genitalia, and the PN nerve runs very close to all of this , as once one nerve starts firing off it gets others to join into the party, even if they are fine it is called " centralisation" which I also have, I get burning mouth syndrome and sensations up my spine also, as the PN sends messages up the spinal cord to the brain, which is why they peu put you on the likes of amitriptyline to try and break those messages to the brain.
If you also have lower back pain, that is actually pelvic pain as anything from the belly button down comes under the heading of pelvic pain but we are only looked at as the vagina, the back the brain not as a whole, which is why I am going to the pain clinic, as they have specialists from the brain downwards.
I used to get stabbing pains in my vagina up to my cervix, that is the very first real pain I had and that is a PN pain.
Where do you go from here ............million dollar question.........I have spent thousands literally, I have a diagnosis which has stopped me having lost lots of unnecessary investigations locally by docs who didn't have a clue...........is there a miracle cure for us all no........as nerve damage is probably one of the last unknowns still to theses specialists.........does physio help, honestly I don't know .............but if you think you have VA and you are not reacting to oestrogen then you have nerve damage...........and I personally think VAGIFEM woops VA is a form of nerve damage.
Sorry about the mistakes I know they are there but since my iPad had has been upgraded if I try and correct a mistake it looses everything I have written.
My daughter meat meet me after my appointment today and said I have to smile or be happy about three different things aday. She sent me a quote when this all started and I remind myself of it regularly " In order to rise from its own ashes, a Phoenix first must burn " .xxxxx
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Morwenna.......I e-mailed Dr Echinberg when this all started, he spends three to four hours with his patients the first time he sees you as he says the pelvic floor is so complicated, as I have the awful pgad as well with this reached condition, the doctors at the pain clinic see this in per/meno women quite often, the rest go undiagnosed, so ther is felt to be a hormone element to it all, pelvic floor gets weaker from hormones changing, everything starts to go south even if you don't necessarilly notice it doing so.
If I lived there he's who I would see, he is starting to slowly retire, the PN expert who is a Professor of neurosurgery is in Nantes France, where a lot of British Ladies have been for surgery but it is a very big step, takes up to two years to see if it has worked, but others get immediate relief especially with the PGAD component of the complaint.
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I hope that your NHS pain clinic appointment goes well Maryjane
The most they will let me have regularly is Nortriptyline and Gabapentin - i had to drop the gabapentin as it was making me feel so bad - i am now just taking a low dose of Nortriptyline.
I have got Tramadol if the pain gets really bad but have avoided taking that so far - i expect that you have already researched it but they are reluctant to give opiates really as they cause constipation.
I wouldn't say that i am managing my pain that well really - which is what the aim is for you at the clinic - i am trying to keep a balance between putting up with some pain but not being constipated.
If i haven't emptied my bowels in the morning i now wait on an evening pill of Nor as i have found that if my body decides that i am going to 'go' after i have taken the pill with an evening meal it is a struggle. These meds aren't just targeted at the bad nerves unfortunately.
They have a system at our clinic where a nurse collects you from the waiting area and sits in on your appointment. Afterwards when she walks you back to the waiting area she repeats a bit of a summary to you that the consultant has said. Being me i first thought 'how nosy' but then realised that it was very helpful when after seeing the consultant i hadn't always taken everything in.
One thing i did find was that the letters back after an appointment were always an accurate description of what was said - can't say that for other letters i have had back from other consultants.
I asked the pain consultant for a diagnosis in writing should i need it - i got a letter saying that i was being treated for vulva pain - my husband says that it is not a diagnosis.
Basically though you don't really want to be going there at all :'( i keep kidding myself that it will 'all come right' as my dad used to say.
Hattie X
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Must admit so far, apart from Dr B who's written letter was spot on, all of the others NHS and Private have all made mistakes in what was said, one I had aged me by ten years ??? Mind you the way I am at the moment 20 might be nearer the mark ;D
........and as J 57 and I are seeing exactly the same specialists including physio..........there are a lot of things that seem to differ 8).........quite often J57 has had an appointment in the am and I go and see the same specialist in the Pm.
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;D ;D
I've had left and right side muddled up - but maybe that depends on the doc's 'view' or mine ! ::)
Good to be able to compare notes !
I have emailed a counsellor i know of at my local clinic to let her know about this thread and have asked if she could pass it on to her clients. Patient confidentiality isolates everyone.
Hattie X
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I had a letter from the pain management doctor this morning following my appointment earlier this week and he seems to think that my symptoms mainly stem from Painful Bladder Syndrome type 3C, which basically is the most severe form of interstitial cystitis, I googled it this afternoon and apparently IC is graded from 1-3 and then A-C according to the biopsy results, with 1A being the mildest form and 3C the worst :'( :'( :'(
He suggests I have one more round of nerve blocks but with the understanding that they will bring temporary relief and I need to find a way of using physio and CBT to manage the pain. BUPA have since refused to pay for any more nerve blocks so that is not going to happen now unless I pay for them myself...
My bladder is having a major flare-up at the moment, throbbing pain in my vagina, raw pain in my vulva, as Hattie has already observed, like a cheese wire being pulled between my legs, really painful anus - that is a relatively new symptom for me! My bladder (or pelvic floor, don't know which) is constantly going into fluttery spasms.
I am trying to stick to a bladder friendly diet to see if it calms things down, I feel that life is something that is happening to other people at the moment while I try to manage these pain flare-ups! Another Saturday spent mostly on the sofa... :'(
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:hug: Judith
Receiving a letter like that is very hard.
Has anything more than amitriptyline been suggested ? The nerve blocks are quite expensive too.
Feeling like life is passing you by is common - another lady i am in touch with locally feels the same has lost interest in her once loved hobbies - i like to pretend that my life hasn't shrunk but it has.
It is not a question of feeling sorry for yourself it is the mental and physical impact of pain in such a private area of the body. To other people everything looks ok and you have to explain why you can't sit normally or for too long. Little is understood as well - in my vulva case my sister in law who is a nurse says why has this gone on for so long.
I've spent four years looking for answers which is i know not what you want to hear - i have pretended to others especially my own children in the beginning but can't any more.
I hope that your partner is supportive - i know i couldn't manage without my husband at the moment who takes off me the things that i can't physically do and then worry about.
I have made contact with doctors in france to see if they can help me as i have a painful spot at the back of the vulva - either a nasty trigger point or the nerve is getting trapped at ischial spine where i had a nerve block done.
My husband is buzzing around looking at all the arrangements which at the moment are going way way over my head - there are no guarantees in France even if they can help me and i am having trouble getting him to see that.
Hattie X
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Thank you Hattie, my lovely supportive partner has just read our posts and said 'oh dear'. I feel so much better when he is here but unfortunately he lives 140 miles away. We used to share the driving, one weekend I would go up to see him and the next weekend he would come and see me but I haven't been able to drive up there since this all started in February so the travelling has all been one-sided!
My mind is going down some very dark alleys when I am on my own at the moment.
Anyway, he has just said 'It's a beautiful day, let's go for a walk in Greenwich Park' so that's what we are going to do :)
Bless your husband, he just wants you to be well again.
As you said, it is such an intimate part of our body and mine was always associated with pleasure not pain. There are so many nerves down there to hurt as well once one thing starts.
I have just had a coffee and croissant - both not allowed on the bladder friendly diet. It just feels as if my body is attacking me anyway whatever I do!
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Morning Ladies, and hi again Judith57!
Do you remember I said in one of my earlier posts, about the bizarre fluttering/squeezing, just like baby contractions, but so difficult to tell where it is coming from! I think it is the bowel. I am feeling a lot calmer since starting on Venlafaxine,(I know, I know, all the arguments against!), and my head is clearer, and it has given me the chance to take in what is happening properly, with fog and anxiety! And I have also seen my KING of MENOPAUSE Consultant, who has confirmed some of my realisations. I have finally been diagnosed with 1.Vulvadynia, not the usual sore, stinging type, but the tingling, nerve ending type, that can extend into the groin, and up into the cervix and into the anal area. 2.Tight pelvis, that causes an ache into the my buttocks and back.3. Very bad digestive motility, constipation to you and I! When I am very bad with the constipation, I can feel the fluttering either way down in the colon, or high up in the sternum, like a flip!
But what I wanted to say, finally, was, when you put all of these major physical symptoms together, you can see how they are all connected! After all the pelvic floor supports all of the muscles that allow the digestive system to process food (btw, in a previous post, I didn't mean the bowel produced Insulin, I just meant that Oestrogen assists the bowel in processing Insulin, and without it, the Insulin leaks out through the gut.) into the colon, and the musculoskeletal parts of the lower body to move easily. The atrophy of the genitals that cause pain, must also make us contract our pelvic floor muscles, hence why abdominal breathing helps so much!
This is probably just amateur observation, but for the lack of any Professional knowledge, it is down to us!!
Judith57, and all the other PF sufferers, I think we are still on our own with this one, unless we all emigrate to the USA!
WANDERER XXX
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Wanderer
Has the Kof M suggested what you should do next at all ?
btw have you read the foods from our areas thread ? the DKs have been mentoned !
Hattie X
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Judith
Glad that you partner understands - i know my husband is doing his best - i feel so guilty that i am putting him through all this as it is affecting him to.
I will pm you my email - if at any time it helps just to make contact if you are down a dark alley.
I am not meant to drink coffee either due to tannins but if we are in town i often have a one shot latte - you can't deprive yourself of everything. :)
Hattie X
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Morning fellow sufferers........Wamderer Venaflaxine is exactly right thing to be put on there are lots of different combinations we can try I take amitriptyline........I a should help depression anxiety, which keeps us calm which helps are breathing and our pelvic floor from tensing...... b it helps break the nerve pathway from the problem sight up the spinal cord to the brain, as it can become learned behaviour regards the brain looking for it..........your type of vulvodynia is caused by the PN, just a different way of sugaring the pill.......I am contemplating going to see Stephanie Pendalgast in America as she is an expert physio in this area, another forum I go on ladies from the UK have been there and had very good results, I like Hattie will set the ball rolling for France but the surgery is a very big decision.
As all the consultants seem to agree this is a meno issue re oestrogen......it beggars to wonder if when we get to mid forties we all should go on HRT vaginally and patches/orally, we all hear about the side effects about HR,but these nerve problems are the pits.
also years of being told to stand tall hold our tummies in are the worst things for our pelvic floors, because the pelvic floor is already using the muscles all the time and we then end up over working them and they go into spasm, also our skin type re collagen plays its part I am covered in stretch marks, hyper mobile people are much more prone to theses issues as are peolpe who have had a life time of constipation and IBS.
it is all about posture, as a horse rider sitting up perfectly straight and always holding in my tummy, along with IBS, stretch marks and three 9lb babies, and a lot of heavy lifting I was a ticking time bomb.
When I see the pain consultant a week on Monday I am going to discuss HRT , I have started the vagifem and gynest cream to see if that helps.
I also wonder why none of us have been offered anal pain killers, like in America I will ask about this to.
Keep walking, and flop and drop those tums and pelvic floors, and breath into your tummies not your chests.xxxxxx
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Oh dear, to top it all, I just went for a walk into the village to try and relax my pelvic floor and ease the pain. On the way back, I stopped to stroke a black cat that was sitting on a wall, I don't normally do that but I had a sudden thought that black cats were lucky. Anyway, the damned thing bit me and drew blood! I have just cleaned it up and will hope for the best. Took my mind off my 'other' pain for a while though!
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Judith whenever daughter who is a vet gets bitten by a cat she and her colleagues always take a certain type of antib, they are the nastiest of all bites, they eat mice rats etc.
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Pressed to early.......if it starts to swell or hurt to much off to a&e they can cause blood poisoning.
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Oh dear, I thought you might say that, it is looking ok at the moment. I did look on the NHS website and they did give the name of two anti-biotics prescribed but not Macrobid unfortunately (anyway as we both know that goes straight to your bladder ;D). I showed it to my neighbours and they both said it looked ok but I will keep an eye on it xxx
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Morning ladies! Ouch, Judith57, sorry, but I love dogs, and know where I am with them, but everyone is right, I hope that it has all cleared up now, without a visit to a/e!
Thanks Maryjane, for agreeing Venlafaxine is the way to go, phew! I did try Amitriptyline, but all it did was make me sleep like a teenager, just couldn't open my eyes in the morning!! But they were great when we went to Australia, helped no end with the jet lag due to time difference!! I can definitely feel where all the symptoms are coming from now, instead of one big heap of pain, twitching, and related anxiety. Wave after wave of painless gut spasms starting in the solar plexus, down to the pelvis, which squeezes in response. The Pregabalin, means I don't get the pain any more, and my lovely GP has given me Molaxole, used to be Movicol, to try and help motility, only started last night, but no response yet!
Another day I will get the vulval tingling and weirdness, that goes into my bum, makes me want a bm, and I don't! So defo, nerve problems there! But at least it all has a reason now, sadly, I have to admit the KOM was probably right, damn it!
Is there any thing better than Vagifem for Vulvadynia, that will be my next question when I see my GP next? I am now on Evorel Conti, had a little period after a week, great!
Maryjane, are you really contemplating going to America? Wow, you are not giving up are you, well done! I actually saw a Chiropractor last week, who said my side back muscles were very tight, well they would be, trying to support my "disappearing pelvic muscles"!! She is going to try a "needling" process to try and relax the muscles, in the hope that the pelvic floor my drop a little, mmmm...I can only try!!
Love to you all!
WANDERER XXX
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Wanderer
There is Estring for post menopausal women which is a ring that is left in for 3 months - it delivers 7.5mcg Estradiol Hemihydrate in 24 hours - the ring contains 2mg EH - although Dancing Girl has mentioned it 'running out a bit' before the 3 months.
I think though that others have already said to you to be careful about how much unopposed oestrogen you are using. I don't understand Evorel Conti but i am sure someone else will be along.
Hattie
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Having to give Gabapentin another try - too much pain this weekend.
Will get it up to 900mg - first effective level and see what happens - it is meant to work well in combination with Nortriptyline but didn't do much last time i tried.
:hug: to all
HattieX
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Oh Hattie, I am so sorry you are in so much pain, i hope you manage to get some relief. Are you any further with your plans to go to France?
I am in a dark place too at the moment, my bladder is really playing up and my anxiety is going through the roof! I just went to sit (very carefully) on the bench that I had put in Greenwich Park after my husband died. There was a woman already sitting on the bench crying when I got there so I sat down and said I hope she didn't mind me sitting there but it was my 'husband's bench'. So she told me all about her problems, relationship broken down, lost her job, sciatic nerve pain....and I told her all mine. What a couple of sad souls we were!
I am still struggling to understand how I have ended up in this state :'(
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Thanks Hattie, you are kind to be concerned. I am being carefully monitored by both my GP and Consultant, and my Evorel is very low dose, as is the Vagifem. I used to be on 25 twice a week, and now I am only on 10, as the 25's have been discontinued. Actually the Vulvadynia is the least of my worries, it's the PFD that is the centre of all my main symptoms.
My Chiropractor now tells me that the Ischial Tuberosity is the main cause of my pain, that's the bone that goes into the buttock, caused by the pulling up of the pelvic floor muscles and ligaments. She says that it's now affecting my hamstring, that's why I have a clicking feeling, the ligament is out of alignment! When I touch that bone it is really sore and tender, and I can feel it going right into the genital area, and accounts for the weakness in my thighs, She thinks the whole nerve area is inflamed, hopefully the Pregabalin will help this. With the VA and Vulvadynia, no wonder I am going bonkers with it all, and that's without all the digestive issues!!!
Thank you for caring!
WANDERER XX
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Wanderer
I think sometimes it is half the battle when someone can explain to you what exactly is going on - although you don't really want any of it.
Take Care
HattieX
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Hi Judith
I've not heard anything back from france but it has only been just over a week - it is giving me time to think about how to react to a decision either way.
The bench must mean a lot to you as a connection with your husband - i think i would feel that anyone i met whilst sitting there was someone i was meant to meet that day.
Hope that you are not in such a dark place today - it is all to easy to go off to the bad places because this is restricting your life -my counsellor spent a lot of time with me talking about how thoughts affect you - if i am going to a bad place i try and change the thought immediately. You have had two losses very close together - did you have any counselling help at all afterwards ?
My counsellor offered me further counselling after she had finished with the pain counselling but i didn't take it up as i was pretty tired by then - i used to come back mentally exhausted after sessions with her.
Hattie X
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Off to UHNN to in London, really can't face the journey it is pouring, just dug out all the paperwork to take with me and read the original consultants report " he said this lady has major issues " regards PN and we look forward to seeing her :-\ that appointment has taken seven months for the pelvic pain department it is that overstretched with referels for this problem.
They would have many more I am sure if more people knew about it, my GP had never heard of it, and it does not come out of the local budget, it comes out of NHS England pain budget which is separate, a special pot for chronic pain sufferers.
Although I am not expecting anything earth shattering to happen, but need to discuss some oddeties on my MRI neurography, as I have nerve impingement at L5 which is the nerve that goes to the genitalia, I was originally told that shouldn't be causing a problem, but two other specialists disagree :-\ .
Depending on how it goes, then I will send my letter to France to have that in the simmering pot regards PN surgery,so much to think about.
I have my first grandchild to look forward too, so that is keeping my mind occupied.xx
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Hope that it goes ok Maryjane - My experience of the pain clinic is that they are just there to help you cope with the pain - drugs, blocks, acupuncture, physio, counselling etc.
You may need another specialist in on the same appointment to discuss your MRN with the pain consultant.
I had a gynae in on my appointments only because he was recently working with the pain consultant i saw and giving blocks vaginally.
HattieX
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Hi Hattie, the bench is a very special place for me and people are always so kind if I join them when they are sitting on it. They had to move it to the children's playground during the Olympics as it's normal 'spot' was on the cross-country horse jumping course. I didn't go and visit it then because it wouldn't have been the same and I imagined that all the benches that had been moved would be squashed around the edge of the playground....
I have had a better day today mentally, I am far better mentally when I am at work, it is just difficult trying to manage the pain sometimes. Something has made my bladder flare up again and I had forgotten just how nasty that is, when my bladder is behaving itself it is easy to forget! So I have had the constant burning and needing a pee all day.
I didn't have any counselling after my two losses but I did really throw myself into my job and that was therapy for me. Also, I was really healthy and could cope mentally with anything really. I will have to increase my ami again because I didn't sleep very well last night.
I hope you are getting better pain relief now.
Wanderer, I think I have the same as you, the actual sitting bone in my right buttock is so tender that, in order to sit down, I have to cup my hand under my right buttock. Also, when I touch the sore spot I can feel it going through to my genital area. I also have numbness at the top of my right buttock, just where the 'builders bum' would be if I was a man. I am also aware that my pelvis is mis-aligned. I have been toying with the idea of going to a chiropractor for a while now so I might make an appointment.
Take care
Judith xx
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Thread bumped for Sarajoy to find easily
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I have just bought a book with two CDs called 'You are the Placebo Making your Mind Matter' by Joe Dispenza - someone on another forum has recently read it who is slowly healing.
My pain is not imagined but if my mind can heal my body that would just be great - no doctor can tell me what exactly is wrong or solve it in their way with masking pain with drugs so this may be worth a try.
Will post back on it sometime.
Hattie
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Anything is worth a go with this awful condition, or any long term chronic pain.
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Judith 57
Hope that you are ok ?
Just thought i would mention what i was given in a nerve block when i had it done - it was and anaesthetic and Depomedrone active ingredient methylprednisolone. I just wonder what you have been given in your nerve blocks to compare notes ?- only say if you want to.
To All
I now have also just started taking Magnesium - half a 150mg tablet a day to begin with from Superd**g to see if that will help. This is magnesium oxide which is not best absorbed so i am going to get some Magnesium Citrate or Malate.
You just have to be careful not to get loose stools with this.
http://www.medhelp.org/posts/Heart-Rhythm/Magnesium-supplements----to-avoid---how-to-take-it-and--safety/show/1002415
Hattie X
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Hi Hattie, I am struggling quite a bit physically and emotionally at the moment. This time of year is always sad for me as my husband died on 1st November and I remember very vividly how ill he was and how frightened I was the day the clocks went back, he was very ill on that Sunday and was taken into a hospice early the next morning.
I have all kinds of really weird things going on with my bowels at the moment, probably the same kind of things that Minnie has. The burning has now moved from my vagina to my rectum and if I put any pressure on the area where I feel I have a trapped nerve, it causes my pelvic floor to start 'flipping' do you know what I mean? If I sit down for any period of time I start to get the 'cheese wire' feeling.
I'm afraid I don't know what was in the nerve blocks, just that it was an anaesthetic and a steroid.
I saw a medical herbalist at The Hale Clinic recently and the tests she has had done confirm that I have a leaky gut and she thinks this is the cause of my bladder problems so I have ditched the anti-biotics as they were making me feel really unwell and am trying to adjust my diet and am taking her pro-biotics and herbal supplements to try and calm my bladder down. I don't really know what to do for the best anymore but there is no getting away from the fact that there is a nerve trapped somewhere, whether it is the pudendal nerve or the cluneal nerve I am not sure....
What have you decided to do regarding France? Have you started taking the Gabapentin again? Is it helping?
I have not been very active lately on the Forum I'm afraid as I have been in a bit of a dark place.
Apparently what doesn't kill us makes us stronger....
xxxxxx
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Judith57
Sorry - i have asked you about the nerve block at a bad moment - i didn't realise that this time of year held sad memories for you - i apologise and hope that the coming days aren't too dark for you.
I don't get the pelvic floor flipping as most of my pain and muscle tightness is in around the vulva and below it - in that line of muscles running towards the rectum - i get the cheese wire quite often.
I heard back from France - they will see me having read the 'history' i sent them - i was given appointments for early February next year but have asked for it to be changed to the following month or beyond. I thought that i would initially just hear that they would consider my case - not to be given an appointment straight away. I can't make this appointment and I am waiting to hear now about another appointment date.
Also need to consider that they will give me another block or blocks as a test in France and that they are deciding about surgery or not - i am not entirely sure it would be an answer for me.
Are you considering France now ? - i will pm you any details if you would like me to.
I titrated back off the Gabapentin - it makes me feel awful headwise and doesn't do much for the pain - the doctor has now given me one lot of Pregabalin but i have not taken it yet. When my pain is bad it is the back of the vulva around the Ischial Spine that is always worse - i just wish someone could tell me what is going on there - is a nerve/s getting trapped or is it a nasty trigger point. No doubt all you want as well is for someone to tell you which nerve/s and where you might be trapped.
Probably madness but at the moment i am trying titrating down off the Nortriptyline - after 4 years just want to see if my body has an answer for all this - none of the drugs have meant i have been painfree - at least i am not so constipated at the moment. If i go back on a drug it will be the Pregabalin first.
Hattie X
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No need to apologise Hattie, I am just feeling extra sad at the moment.
I think I need to get my bowel problem sorted out as I am sure I have a huge bacterial overgrowth due to all the anti-biotics I was taking for my bladder. I am like you, I just want to know what has happened to my body. I think I will need to give up my job shortly as my self confidence is at an all-time low.
I would be very interested in the contact details for France, if you could pm me the details that would be great.
I am just taking 20mg of amitriptyline at the moment, I don't really want to go on anything stronger just now.
Take care,
Judith xxx
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Hi
I have asked someone on another forum who i respect to recommend some books on mindbody connection and he has kindly replied with the following
These are for general information
Healing Back Pain - the mind body connection - John Sarno (about more than just back pain includes pelvic pain but a bit short on the 'how to' )
The Great Pain Deception - Steve Ozanich ( receives good reviews)
The Hidden Psychology of Pain - Dr James Alexander (the author had pelvic pain)
At the Speed of Life - Gay Hendrick
i have nearly finished the Joe Dispenza book i mentioned earlier - i would say that this book is partly a scientific explanation of meditation - there are 2 CDs that accompany it which i haven't tried as yet - i can relate to things he is saying but he is very repetitive - i found some of his examples of 'healing' a bit hard to swallow but i am not dismissing it entirely - my starting point is that i am a firm believer that emotional stress puts your body out of kilter ::) .He openly admits that he is comfortable with criticisms that he is a faith healer.
Hattie X
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Just bumping this thread for the New Year and any new members.
How is everyone ? - i have got through xmas by flattening my feelings as much as possible so as not to allow any stress to make pain worse - it has been nice to see family but always in the background the pain is there which unseen to them has changed my life and the dynamics with my family as a consequence :'(
Can only hope that 2015 sees some improvement.
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Hi Hattie......and all other PP sufferers. I am a first time granny of ten days, which is amazing I love having " snuggles". I started the voyage of PP officially a year ago, I said my goal was to be better by Christmas 2014 ( I have learnt not to make goals, as they tend to disappoint), but I am a lot better than I was a year ago.
I have two more specialists to see in 2015. As this problem is very multi facited which requires different specilaists for each part.
I must say I wont miss 2014, other than the birth of my first Grandchild, and let's "hope" that 2015 is kinder to all peolpe suffering whatever that condition may be.
Happy New Year to you all.
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It is good that you are a lot better Maryjane and lovely to have a grandchild.
I have gone a month now without medication - the pain sensations are different but on the whole no worse than when taking medication which was masking and altering pain patterns. One plus is that i am not so constipated and urinating normally.
I am still hoping that my body has an answer to this - next year will be the fifth year of it . I'm certainly not the same person i was when it started.
One of my new year resolutions is to leave forums alone which may or may not last.
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Excuse me ladies just bumping this for someone to find as the thread holds information.
Hattie X
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Just been reading this thread and wanted to send a hug to you all - I'm currently using a donut cushion for coccyx pain - that alone is debilitating enough I cannot imagine what you ladies are going through, I hope you all get some answers/relief. It astounds me that so many suffer with these things yet the medical profession seem ignorant to help - I've said it before - if it were men suffering.... its a flippant remark but I do belief there is some truth it in! You ladies are very brave for sharing such personal information, and I for one am grateful that you're bringing this out into the open, I had heard of "pelvic pain" but had no idea the extent to which people suffer
:hug:
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Thank you CJ-sleepless. Just got home from another painful day at work, sitting on my donut, still hoping for a resolution to all this nonsense - it will be a year this weekend, an anniversary not to celebrate!
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Bump