Menopause Matters Forum
General Discussion => New Members => Topic started by: Bath mum on May 12, 2015, 03:56:40 PM
-
Hi, I'm new to this site. I am 46 and peri menopausal...
I've just got over 6 weeks of thrush...which didn't cause the usual symptoms, but instead an intense pain inside my vagina...and inflammation there..I am now on 6 months of fluconozole..
But just this week..I have developed a horrible pain in my clitoris..I've noticed that one side of my labia, near the top by the clitoris is a bit red, bit otherwise it doesn't look too different. I have read that menopause can cause painful changes in the clitoris..has anyone else had this? Its constant pain...I can't sit, drive or anything...even wearing pants is painful...
to top it all I also have piles!!! I wonder what has happened to me in the last 6 months...
Any experiences or suggestions would be most welcomed...
Thank you
ps. I am seeing my GP later this evening.
-
oh bugga...not good.
I too am much more red and sore in this area ....I avoid pants in the evenings when I have ma dressing gown on and try to dry carefully etc.....Oh I also wear a small panty liner to catch ant leaks so avoiding being sore for that reason.....Damn Peri is a nuisance but I believe I am nearing the end as the symptoms are getting less.....hang on to one day at a time .......leave tomorrow until it arrives
Mrs January xxx
-
Hi Bath Mum - welcome to the forum.
I wonder if you could have Vulvodynia - this can cause pain in the clitoris and in the area you describe. I expect you're back from the docs now but it may be worth mentioning it next time? http://www.netdoctor.co.uk/sex-and-relationships/facts/vulvodynia.htm
Let us know how you got on.
Taz x :welcomemm:
-
Hi Bath Mum, I had a spate of this last year and it was horrendous. I still have pelvic pain but the intense pain in my clitoris has now gone. I take 20mg amitriptyline every night as it is supposed to be good for nerve pain. I still have to sit on a donut cushion at work and in restaurants and can only drive for about twenty minutes. Also, I can no longer tolerate sitting on a train. Let us know how you get on with your GP.
-
Hi ,
My advice to you after suffering 1 year of horrendous pain at times which started with thrush and then escalated, is if it is a skin condition to ask to see a vulva dermatologist. I had to pay privately but it was the best money I have spent and I wish I had done it earlier. The NHS took too long . Do not put anything on the area such as soap , shower gel or anything with alcohol. A vulva dermatologist should work in connection with a gynaecologist and sort you out. It cost me £160 and I would have paid double , for the advice and treatment.
good luck Peppermintyxx
-
Thank you SOO much ladies...this is great....My Dr was very sympathetic...and has advised I take notriptolyne (I'll have to check the spelling)...I took one a few weeks back, and it freaked me out..I felt like a zombie...but I guess thats just becuase I'm new to it. Like loads of other ladies, I hate taking pills...and have never needed to..
He didn't have any explanation for the pain really...other than the inefection I'm getting over could have caused nerve pain/damage....
And although my blood tests are labelled 'perimenopausal profile' he doesn't think its related to hormonal changes? I sort of feel it is....
So....I have to decide now if I take the pills....or see what the next few days bring...the pain is horrendous though...
I can't thank you enough for replying though...I was feeling very isolated about this..I have a demanding full time job, whoch I've been off for nearly two months now, and its not the sort of thing you can discuss with work!!!
-
Hi , the tablets you have been given are an antidepressant I believe , which can be used for pain . If it doesn't work I really would ask to be referred to a specialist as you shouldn't live your life like that.
Unfortunately the menopause can play havoc with your bits, and they take longer to recover . You have my sympathy.
Peppermintyxx
-
Perhaps a bit of local oestrogen would be better than an anti depressant....well worth a try.
-
I'm glad your doctor was sympathetic, the noritriptyline is a stronger version of amitriptyline I think. I had a UTI just before I had the vulval/vaginal/clitoral pain and I think it has caused damage to the pudendal nerve. I saw umpteen specialists last year and had three nerve block injections which didn't really help much. I had to take some time off work too and it was very difficult trying to explain to my male boss what was wrong. I saw a very good vulval dermatologist privately last year and she gave my vulva a thorough MOT. The problem with nerve damage though is that they don't really know what to do. I really hope you start to feel better soon as it is really nasty x x x
-
Thank you all...its not good to hear that others have had this.. I wouldn't wish it on anyone..but
it is nice to hear your experiences and suggestions. Thank you Judith57 for your helpful insights...I hope you are managing to cope now too...
And yes, the tablets are antidepressants at higher doses, but this lower dose is for nerve pain..
I am a bit scared of taking them actually....as someone who has never even taken an aspirin..
I may give it a few more days to see if it settles down at all....
I am so grateful to have found such kind 'strangers'....this is all a new experience for me..but ?i think that shows how much we all feel like we need some kindred spirits going through this...
i will hopefully be able to pass on my advice at some point...
-
I am also a member of the painful " nether regions" I went to a vulva pain society day on Saturday with Dr Nunns a top specialist on Vulvodynia, he said to many ladies get "cared" for by the GPs and need referring onto a gynae or vulva dermatologist sooner rather than later.
Our age group require local oestrogen.....and also ladies who have vulva pain, should have there cervix looked at as it can sometimes be coming from there.
There where a 120 ladies there and I would say half where young girls in there early 20s very sad, and the oldest 81 and the rest perimeno/menopause......and yes the pudendal nerve is quite often the culprit......and a very over tight pelvic floor PFD pelvic floor dysfunction.
-
Hi MJ, I was wondering if you would contribute to this thread. I thought of you at your vulval pain day, how many of the poor souls were having to sit on cushions :'(
Bath Mum, don't worry too much about taking the tablets, I know I couldn't have carried on for much longer with the awful clitoral pain, I used to have to sit with a packet of frozen peas on my bits and I couldn't sleep because of the constant pain.
-
Welcome Bath Mum - if your GP doesn't believe your blood profile is due to menopause, what the H does he think it is due to :-X …….. send him an e-mail and ask the question.
Ask too for a referral to a vulva dermatologist in the mean-time.
At this time of Life we need to take any medication that will ease symptoms - short or long term, quality ladies, quality ;) I take my anti-depressant at night so that it doesn't leave me hung over too much.
-
Hi, ref taking ADs for pain. Doctor's advice is that if you take it at night and still get that hung over feeling , take it a bit earlier at 8 pm , in fact I was told that you can take it as early as 4pm if that suits you better, to avoid the morning tiredness.
Also a vulva dermatologist , will be able to tell you if you have inflammation and dryness down there , which requires topical creams, A lot of ladies are intolerant of anything around the nether regions. You should never use wipes or soap apparently. You can be advised to use steroid cream ,( but only do this if advised by a doctor/specialist) but some ladies can be intolerant to that and an ointment can be better. It is best not to put anything on your bits without specialist advice. Hydromol ointment is tolerated very well down there , which is a moisturiser and is often recommended , by specialists.
Don't rub the area with towels or flannels . Maryjane's advice is right , seek specialist advice sooner rather than later if you see no improvement.
Fingers crossed.
Peppermintyxx
-
There are some wonderful baby wipes I have just found in Waitrose called water wipes they are 99.9% water and they have made a huge difference to the whole area down there, there is a webpage to order on line.
The vulva dermo I have seen said Hydromol or yes , I use yes oil based, I also have the Hydromol but it needs warming to put on as it is harder to use, I wipe with the wipes every time and then put yes on each time.
I am off to the dermo on Friday for a second opinion regards LS lichen scerlosie.....vagifem has helped a lot down there and the odd bit of oestrgen cream also.....but don't do anything I have said without consulting a specialist, however what I have suggested is pretty harmless....go buy the wipes there great, go everywhere with them, think the loo roll was irritating the area.
Also if you still have periods use natracare all a 100% pure.....when I shower I use a clean boil washed dry flannel to,pat dry with each time, so the towel which is not washed everyday doesn't cause any issues either. I no is sounds a faff but it's second nature now......where I have come from belive me its worth it.....also I NEVER wear pants, go shopping, dog walking, days out to London no pants....and if it gets to much ice between the legs.
-
I talked to an Indian Gynaecologist many years ago: apparently when wearing the sari they don't have knickers on and they carry a special handbag - each time they go for a comfort break they wash after with warm water. Maybe bidets aren't such a bad idea after all ;)
Anyone have one of those new fangled loos that have a 'wash after use' button ?
-
Thanks so much...all great suggestions...that I will follow up..
-
Let us know how you get on!
-
Hi all. the pain seemed to die down a bit but is now back with a vengeance...I am trying to get a referal to a specialist in .bristol. I think it could be a pudendal nerve problem..Judith..I am pleased to hear you can work etc...and that the meds seem to help..I have just started the nortriptoline...but at the moment can't even walk or sit without severe pain..any help advice???? I am a bit desperate today...
-
Not an expert on this at all, but have you taken some painkillers to tide you over until (hopefully) the prescribed meds kick in and your appointment is sorted? Feeling for you.
-
thanks....yes, i googled to make sure it was ok....so i have taken some....am out of bed at least!!!! and thanks for your concern....i appreciate it...
-
Hi, I really feel for you as it is the pits and has severely compromised my quality of life. Just got home from work and have had a fairly bad day today with the pain, I can no longer even contemplate sitting on the train, just as well it is only a twenty minute journey. There is a specialist team in Bristol who offer surgery for pudendal nerve problems so I assume you are trying to arrange an appointment with them. There is also a support group for PN patients called HOPE, you may have already found it. I tend to stay away from it as I find it too depressing. Let me know how you get on x
-
Thank you Judith57...I have an appointment with the Bristol team, for the 7th July. I got referred yesterday, by my usually jolly GP who started asking me if I had insurance against my income.... I also agree about the HOPE webpages...they scared me a lot and I thought..I don't need to hear all this! A specialist GP I saw said that she had seen this after infections before and that it should go... That was a month ago. I suppose that is why I am clutching at your story for a positive outcome....a future where I can at least work and get out of the house. I have two lovely young kids and am not really even being a proper mum at the moment... I have started on Nortyptolyne this week, and am waiting for that to start working. How did yours start? if you don't mind me asking?
-
Sorry Judith57 I saw that you did mention that yours started post an infection too. I also read some of your old posts, and can see why you wouldn't want to revisit last year at all...I am only 46 and in peri menopause...I started off thinking it could be hormone related, but alas I think its far more nerve related now..I think we ladies just 'know'...
-
Bath mum.......as you no I have/had PN/PGAD/bladder wall infection/vulvudynia......all of which is either caused by the PN or the PN has caused it all chicken and egg......not being at all big headed but I have a wealth of knowledge on PN ( my mother also has it ) and under no circumstances let the Bristol team go anywhere near you with a knife......they will quite likely say the problem is your bowel causing the PN issues and suggest they operate, just be very aware.......PN surgery is not offered on the NHS because it is deemed an insufficient outcome.
If you want the chance of a correct diagnoise then I would go to France to Professor Robert in Nantes, as he is the world leader on this.....and he has told the Bristol team to stop using steroids in the nerve blocks as it causes extra nerve damage ........don't want to put a downer on it for you.....but just want to warn you.
-
Mine is a very long story but it was all kicked off by a UTI after sex, it didn't really clear up and I had a lot of vulval and clitoral pain. I then think I got nerve damage by sitting in my chair at work pressing down really hard to numb the pain. The final straw was when I went to see a physiotherapist recommended by one of the specialists, she told me to try and wean myself off my donut cushion slowly, anyway I went back to the office and spent the whole morning without my cushion and then everything started fizzing and tingling as though I was sitting on an electric fence and sadly I think that was when the nerve got trapped. I have also developed a troubling rectocele now :'(.
Crikey, my old posts must have scared you, this time last year I was suicidal. The other lady posting on this thread, Mary Jane, was a huge support to me. You will know that we trod the same treatment path for a while. You are right, we know our own bodies and can distinguish between nerve pain and pain caused by a lack of oestrogen. Let me know how you get on x
-
Thanks Judith...do you think I shouldn't see the Bristol team? also, I cannot even think of getting to France in this pain....They don't use steroids in diagnostics do they? i have just been to A&E because I thought I was going to pass out in pain...of course they gave me a different pain killer...thats all...but the .dr there Suggested it was pudendal neuralgia..and recommended the London team...this is so distressing....my poor kids and husband don't know whats happened to me...I think my mum probably has this
too...
-
Did the Dr in A&E offer to write the referral letter?
-
Hi, no because I told her .i was already referred to the Bristol team. Everyone on other forums spoke quite highly of the Bristol team....which is why I'd looked them up...plus I am in Bath so I can get there easily...but of course the quality of care is the most important thing. I have to calm down a bit though..I only have the paon in my clitoris at the moment....and I have only been taking notryptolye for three nights....i have to give that time to work too...
-
Judith....do you know how or why your intense clitoral pain went? And how long it took?
-
Sorry Maryjane..I thought it was Judith that replied about the Bristol team...
-
Hi there, I have just got home from work, I had to go to a meeting this afternoon so couldn't sit on my donut cushion and was in a right old state afterwards, it was only a twenty minute meeting. If I think back I know the pain was absolutely dreadful in April last year and at times I wanted to get a knife and cut my clitoris out! I remember one day I was vomiting with the pain and couldn't quite believe how much pain one could take and still be alive! I went to see Dr B from the London team in the middle of May and he gave me a nerve block and prescribed amitriptyline. By the beginning of June the intense pain in my clitoris had gone and I was gradually able to wean myself off the frozen peas I was having to apply to my vulva every day. I just remember being aware that the burning was slightly less every day.
However, I am still not right and cannot sit normally anymore. Like you, I couldn't even consider getting to France, my world has shrunk somewhat and I grieve for my old life.
Hang in there, the pain will get better, you just need the area to calm down, are you applying ice?
xxx
-
thank you so much Judith...i don't want to be this needy!!! I am impressed that you can work...that is a future aim for me..to get back to work...I have been off for two months. I am heartened that the intense pain has gone...do you think its the meds or the nerve block that were effective? And I haven't been using ice, but will give it a go....thank you so much, i am genuinely touched at your kindness in helping with your insights..
-
Ok......the Bristol team are far more compassionate than the London team .....this comes from one of the top PN Physios I have seen.......however they try to hard to try and fix you when we are not necessarily fixable that's the hard facts I am afraid of this condition or any nerve condition.......Bristol have done about 20 PN Surgerys with some dire consequences one poor lady is now using crutches had to give up her teaching job......and has had no after care and the specilaist has refused to see her anymore.....the Bristol team went over to France to "learn" how to do the surgery .......the French team have done 4000 plus.....the physio I saw also had PN for two years caused by a UTI.....and she said if she ever needed surgery or a proper evaluation she would only let the French team do so.
By the way my mother also has PN.....and has had a nerve block at the NHNN with absolutely dire consequces.......you are near a guy called David McCoid in Bristol he had PN for 14 years and has three failed surgeries in America......he now teaches something called restorative exercise by Katy Bowen look it up.....there are some good results out there....
This time last year I was ready to jump,off a bridge.....turned up at casualty like you desperate.....but I am 90% better......I can sit for a couple of hours.....and I personally never got into the habit of using a cushion, but I work for myself and could manage my day as I wanted.....however much pain I was in I wallked walked walked and still do with good posture.....as the worst thing for us is to become stagnant as this stops blood flow, and tightens the pelvic floor further.....I have also had intensive antibiotic treatment for a bladder wall infection .....which was/is also part of the jigsaw.
What you have to remeber is EVERY investigation you have done lays down scar tissue and aggravates an already aggrivated nerve......I had an MRI a neurography very expensive which rules out rather than rules in....there are NO definate tests that can say it's PN there are two other nerves that could be the culprit also but nerve pain is nerve pain and it's the pits.
In the early days I iced the area slept with a tin of frozen baked beans wrapped in a towel between my legs, learnt to turn over in my sleep without waking ........havnt needed the beans this year at all.......however I still most nights lie on a mini hear pad on high on my lower back/butt area to relax the area and this works very well.......sometimes sleep with it also.....as my pelvic floor can ache alot when it's period time. Learn to breathe properly....sounds mad but helps a lot , breath as if your breathing out of you vagina so your stomach rises and not your chest that way the pelvic floor will drop and flop as you/we have PFD pelvic floor dysfunction an over tightened pelvic floor like cramp in your calf muscle tighteneing around that pesky nerve.
Give up food that makes you bloat.....use a squatty potty for the loo.....hold one nostril and breath through the other that way it can only relax the pelvic floor......as I said earlier my mother and I both have PN she jumped in and took whatever was thrown at her and is in a right state, I went the very conservative route and so far at the moment it seems to be paying off.......the Noratriptaline can take up to three months to work.....I did four months of ami but I am now on nothing.....so if possible sleep , exercise, rest, pace, eat well .......I also take vitamin D3, probiotic, slow release iron B12 and 6 and zinc these are all nerve skin pills.....I have more energy than I hacve had for years since taking these.
I also went to a talk in London the other week on PN/vulvodynia and I was very impressed with the physio there her name was Lucia Berry I may go and see her to see if I can help along the last bit, she also does pelvic floor scans which I had done recently really worth having done as it showed exactly where the muscle was tight and represented where my pain was/is......also showed my prolpase is minimal this was done lying down and more importantly standing.
9 out of 10 sufferers of chronic pelvic pain do get better ( not as was before) but a better quality of life however it takes time.....as in it can be years.....as one of the very top nerve Gynaes told me we are in a time of fix me now.....however nerve pain is the last frontier of medical science and they just don't no enough yet.
-
I took two weeks off work at the time but it was during our year-end and I am an accountant so it caused me a huge amount of stress. It was also very difficult explaining what was wrong so I said I had really bad cystitis. I don't think the nerve blocks did much good to be honest but I was so desperate I would have tried anything, I think it was the amitriptyline and time that helped in the end.
Is someone covering your job for you? What have you told them is wrong with you?
xx
-
Maryjane and Judith...thank you so much...there is so much good advice in here....I need to re-read it and digest the advice. My instinct is for a conservative approach too..I am no fan of surgery....Maryjane, you should write a book!!
I am heartened that both of you are to some extent better...although of course not 100 per cent...
Re my work, there's no way I could get to work at the moment...I am a lecturer at University. I have sick notes saying pelvic pain...in a way I want this issue to be more visible, we are bloody unlucky but shouldn't be ashamed...My work have been AMAZINGLY supportive, I have to say...
Again, I can't thank you enough...its good to have something proactive to so...
-
I have been asked by a top consultant on this to be a point of reference for sufferers.
Anxiety and stress are your worst enemy now with this......where you might of had a butterfly feeling in your stomach before.....it will now be a painful " fanny" also you can buy mini ice pads to put in your pants that a lot of ladies use.....and if you have to sit get a doughnut and put ice in it to keep the nerve calm, but don't freeze your bits.
As you may be aware, I don't keep it hidden what I have , as ladies really don't realsie just how common this is and the saying " there but for the grace of a God go I" soon shuts them up.....as I have PGAD with mine persistant genital arousal disorder, now that is a converstion stopper ....but oh so common with this condition.......good luck.....and if you need to just chat you no where we both are......Judith 57 and I are going to meet in the summer it's been a long hard road some days.
-
So, to recap then....
the meds are worth a try.
try cold and heat
breathing and relaxing are important (I am already doing some meditations thatvhelp me get back tonsleep once woken in the night.)..
Eat, sleep, time are important healers.
Dont have anything invasive done.
Did you both have physio therapy?
Thanks...I am desperate to do the right thing and not make things worse....
XXXXX
-
Hi .......ice and heat are your best friends......heat on lower back butt.....ice on vulva area....but don't freeze it just a nice cooling feel.......you can get 5% Lidnocaine numbing oitment from the chemist/doctor works for some not others.
Pills defo worth ago.....but remeber that just because you can't feel it if the pills work.....doesn't mean the nerve has healed it's just masking it so still look after the area........I wear long skirts and no pants ever other than my period and that helps also.
I had sports physio and women's health physio and accupuncter......sports physio defo helped the external muscles, accupucture helped relax, full body massage helps relax, women's health physio......now a bad physio is worse than no physio as its internal work......some it helps some it doesn't......for it to work you need to do it once a week really and pelvic pain physios charge on average a £120.00 an hour ( disgusting ) however the NHS ones are pointless really pointless.......never ever ever do pelvic floor exercises you need to do the reverse and NHS physios are still being taught the old way.
I had about 12 sessions of physio at £120.00 an hour 😳😳😳 I would definately go to Lucia Berry London to get an assessment they generally no more than the gynaes.......physios don't like the term PN they prefer PFD pelvic floor dysfunction.....also this problem did not happen over night it will have been what you have done day in day out year in year out that has caused this......unless a sudden accident or surgery/childbirth.
There is a very good book by Amy Stein called if I remeber pelvic pain explains everything and its where a lot of the physios train with her........I advice you to see Dr Anna Pallercarous who is a private sexual health consultant she is amazing......lots of ladies have seen her on my advice and love her......she will give your vagina the mot of its life as there is a small chance there is a hidden infection that just does not get picked up on NHS testing.......I am going back in September for my early MOT......she is just so kind and extremely gentle.......really worth going.....she is also London so you could see her and physio at the same time......the physio could access you and then recommend someone in your area if london a to hard.......but seriously look into David Mcoid also in Bristol.
I personally would not have nerve blocks......they suggest them because they don't no what else to do.......it's ok to have a just Lidnocaine or other numbing nerve block to give an idea where the pain is coming from, but not the steroid.......however it doesn't can ge the course of action I am afraid.......it's the pills , physio, mind body, de stressing etc......also if you are over 40 which I assume you are local oestrgen is defo worth ago could take months I have been on it seven months now and it's helping as well.
Also your local GUM clinic if you feel like you have an infection or something is the place to go, 100xs better than the GP, which is what Dr Anna is but she has the time if you have the money to do a thorough job.....but local GUM clinic still excellent and you don't need an appointment.
As you can see I am very passionate about this, as I have three daughters and a grand daughter and what with my mother and me having PN and my eldest (28) is showing signs of vulva pain with her periods I am determined to get as much knowledge out there as possible......as the GUM clinic and all the top specilaists I have seen said this is really quite "common" but brushed under the carpet and given different names depending on who you see, so if it all goes under one umbrella it's not rare.
-
Oh....so bad today that my Dr prescribed morphine....I have never known pain like this. I can't stand, sit or lie without the excrutiating pain....At my wits end .i really am...with two lovely kiddies to be a mum to....this is the hardest thing ever....My GP is trying so hard but with so few tools at his disposal...the thought of taking morphine terrifies me, but .i am taking it nonetheles....
-
Oh, bathmum, so sorry you are going through this. How old are your children? If you can tell them you're in pain and you're going to be doing things the easy way for a week or two you'd probably be surprised how helpful they'll be. Hugs.
-
Just a word of warning opiates can make nerve pain worse.......look up this video on you tube its long 90 minutes .......ignore the title it doesn't give it justice........Chronic pain ....is it all in their head? Daniel J .Clauw M.D.
Also morphine is a big constipater and it's the last thing you want with PN issues.
The drugs used for this are amitriptyline/Noratriptaline/gabapentin/pregagablin/ some use slow release tramadol again a bit ??? baclofen is a muscle relaxant , in the states they use Valium and baclofen vaginal suppositories.
You are having what is called a flare.....have you been sitting for long or had a long car journey.....it's quiet often what we did a few days ago that can catch up with us.....I would try and get into physio asap.....and ice the area to calm the nerve down.....genital pain really is the worse....I disslocated my shoulder recently and I would rather eat have that day in day out any time.
Also if you lie on your back with your legs up against the wall/door this should help release the pressure of the nerve and for many sitting on the loo stops the pain......I am sorry you are going through this and with children.....this is easier said than done but try not to panic and breath like I said to you......there is no quick fix......is your bladder ok?
-
You are better off trying 5% Lidnocaine oitment on your clitorise following the path of the PN than the morphine in my opinion and vert vast research.......what does of Noratriptyline are you on ? With Amitrptyline you can go up to 75mg for pain relief after that it an antidepressant......noratrityline has fewer side effects......i10mg is a very low dose.
-
Hi Bath Mum, sorry you are in a state today. I think Mary Jane has said it all really. I had about fifteen different people looking at my fanny last year and none of them mended me. I saw the same physio as MJ and sometimes I used to feel worse after seeing her but to be honest nobody could really help. Dr Anna Pallecarios was lovely and she tested me for every infection known to mankind and gave me a clean bill of health. This whole nonsense has really taken a toll on my self-esteem and I am only a shadow of the person I was before.
Did you definitely have thrush or did you self-diagnose? I am asking because I thought I had thrush at first and so did my GP but the burning just got worse and worse until I was in the same state as you. Dr B sent me to a shrink for CBT and I had to fill in a form asking if I was thinking about taking my own life, was I ashamed etc. and I just kept ticking the yes boxes :'(
I am now much more cynical about the whole medical profession, at the beginning I was taking myself off to the best that Harley Street had to offer, but you soon realise you are just paying all that money for the plush surroundings but you are just so desperate for an end to the pain that you will try anything.
I honestly think the amitriptyline did help me, I am on a very low dose, I started off at 10mg and now I am on 20mg.
I looked back over my old posts last night, crikey they do make grisly reading and when there are big gaps it was just because MJ and I were private messaging all the time!
Hang in there, it will get better xxx
-
I have some relief tonight...its probably the morphine...or could be the nortpiptolyne kicking in a bit...I am on 20mg as of yesterday....or bit of both....I will try the leg raises etc....Thank you ladies.....
-
That's good news x x
-
I will try to get to a physio asap..struggling to know which are good ones...i have found a women's pelvic pain one nearby...I will talk to her and see what she says about pudendal conditions..ie if she says its about relaxing etc...then hopefully she is one in the know..but I don't want to make it worse..
My kids are 9 and 10...my husband has given up his job as he worked in the evenings and it was all too much..we were all ragged. The kids know I'm ill, but I've been trying to be normal around them...of course they can see me in bed a lot..
The morphine is the last thing i. wanted to take but I couldn't carry on in that much pain..I was just wailing on the sofa...I didn't get much sleep last night, but wasn't in pain and was peaceful....My pDr is hoping that the notryptoline will start working in the next few days..although i know it can take a lot longer..I have been advised to go from 20mg to 30mg on Sunday...and see over the following week what happens.
The Bristol teamu are trying to see me asap, but Dr Greenslade is out of the country till the 18th...I am not expecting that to be a quick fix though...in any way...
-
Hi there, glad you had a pain-free night. How are you feeling today?
-
Hopefully the Noratriptyline will start working.....I no it gives some ladies complete relief......but remember and this is really important the nerve is still damaged all the drug is doing is altering the signals to the brain......so don't go and sit all day.....as when people start to come off the drug the pain can be worse than ever.......you have to really look after your self.......I have spoken/emailed quite a few people in real life with this and they have told me the mistakes they made and what not to do.........and one being if anyone suggests injecting your clitorise with steroids.......run for the hills as fast as you can....and also remeber when we pay private we are " cash cows" Judith 57 and myself found that out immediately......I have spent thousands of my own money on this ( no insurance) in desperation as I no how you feel......and what's helped " Dr Time" .......I am still not the old me don't think I ever will be again, as it's now a weakness.....
I am glad I had the MRI Nureography very expensive and only three in the UK.....but it ruled out "travl cysts" (sp) that can in rare cases be the cause of this.....the problem is also it showed up three other things that could also be the cause ......but the treatment for them could make it worse ....so I am letting sleeping dogs lie......I would try vagifem also if I was you. Hope the Bristol team see you asap ....he will more than likely want to do a nerve block.....and if you decide to have one I would only have the numbing part to give an idea if it is the PN or not......but a really good physio is your best starting point.
-
thanks so much guys...I am ok because of the morphine..and I am seeing a physio today....i will try to find out how good she is..I couldn't speak to her before seeing her as she's in clinic...but she came recommended by another physio who does a lot of PN work, but lives too far away for me to see.
so...thank you so much for your advise..You speak so much sense....my preferred routes are nortriptoline, physio and time/rest... I am not even sure I want a diagnostic nerve block...
-
Back from the physio, she seemed very knowledgeable...I have some good breathing excercises to do and am seeing her again next .friday. She was all about relaxing and breathing...she also works with Dr Greenslade in Bristol..they refer to each other. She was realistic....no quick fix.....but things can improve....maybe not to 100per cent...but better than at present. Also advised a coxyx cushion, rather than my wwobbly doughnut..
-
Ok that's some positive news. I have a donut at work but for home/restaurants etc I have one that was specifically recommended for PN. Got it from Amazon for about £30.00 and it has a handle to carry round :-\.
I was thinking earlier about when I was in the early stages of this and I went on that scary HOPE website. Someone had compared the pain to end of life terminal cancer pain. That really freaked me out. I do know exactly what you are going through as the pain during the initial flare was horrendous and it has never been that bad since. I wanted to get a knife and slit the area between my vagina and clitoris to release the tension :'( My husband died from cancer and it wasn't until the last few days that he was in agonising pain, I called an ambulance in the early hours of Monday morning as I couldn't deal with his pain, they gave him paracetamol which did work to a certain extent but then the McMillan nurse came out first thing and called an ambulance to take him into a hospice. They managed his pain then with morphine and he died on Wednesday evening.
Like you, I remember wailing with the pain and screaming for someone to take it away. Today I have paced myself and am having a good day, I don't work on Fridays. Driving is still a problem due to the trapped nerve but I no longer have the intense vulval pain and am no longer aware of my fanny 24/7.
When I made the initial appointment to see Dr B his secretary asked me how long I had had the pain. I told her six weeks and she was genuinely shocked, said most of his patients had been suffering for about five years!
Take heart, it does improve but there is no quick fix! Listen to Mary Jane - she is an expert now and has helped me through some tough times. We did have a pelvic pain thread on here a while back, you have probably already found it :(
Also, I did not find the scary websites helpful because usually when someone recovers they don't go back on them.
Let me know how you get on over the weekend xxx
-
Thank you so much Judith....You are very reassuring, without giving unrealistic hope, and I really value that. My physio this morning also said how important it was that I was getting help early, as physio has better outcomes then....
I am really sorry to hear about your husband. That must have been terrible for you. I witnessed similar with my father in law..
And yes, the pain I was having was horrendous. I am 46 and feel so fortunate to have ben so healthy till now...if I have to manage this, that's OK....the morphine is odd...it kept me awake? but I needed it....
And yes, I saw some other forums...and the physio said don't read them! But, There is a real difference between some very helpful support like I have had on this site, and the horror stories on the others.... I did find a thread on the HOPE one which was just loads of people saying that they had had good results with nortriptyline and come off it to find they were ok in a few months...so I know that that CAN happen too..I want to nurture my nerve..as MaryJane advised...the drugs only mask the problem...so if I can take the advice of my physio, and let time take its course without being in too much pain that would be ok..
Thanks again.....its really helped me.
-
I made a big mistake in the early days of trying to wean myself off my cushion at work. The physio that Dr B sent me to (not a hands-on one like I had been seeing in Harley Street) told me to try ten minutes on and ten minutes off. I got back to the office and sat on my chair without the cushion, eventually everything went numb and I thought 'well if ten minutes is good a whole morning must be really good'. Then everything started fizzing like I was sitting on an electric fence and that is when I think I went from pudendal neuralgia to pudendal nerve entrapment. So be careful, do not aggregate the nerve any more than it already is! Mary Jane and I refer to it as 'cushion-gate'. You have to find some humour somewhere. Honestly, it will become easier :)
-
Not such a good day today...I am in a lot of pain, and to top it all I think my thrush has returned...which was what started it all off in the first place....and is painful on its own, let alone with the pud nerve.....I'll get a swab on monday...but I am pretty sure...this even when I am on fluconazole for 6months...I just wonder what an earth has happened to my body in the last six months...even the morphine didn't dull the pain last night...how do you cope???
-
How do we cope ......we have no choice I guess😔firstly regards the thrush the dose given by the NHS quite often isn't strong enough to knock it on the head......but anyway I would definatley go to your local GUM clinic on Monday not the GP.......firstly the GUM clinic look immediately under a microscope and then they send off there swabs to a top laboratory better than your local hospital.....I have been three times now and Judith 57 has been also and they are great and so more experinced.
Could you have BV ? Bacterial vaginosis (sp) also VA vaginal atrophy.....I really do advise you to use vagifem I also use estriol that I rub onto the vulva.......as it is known that perimeno/meno can start off PN also the muscles become lax from lack of oestrogen and takes the nerve with it.......I am just making sure you have not been told to do pelvic floor exercises as this will make it worse.
You can buy from the chemist instagel or emla cream or 5% Lidnocaine all numbing products but if you put it on the clitorise this may help.......you must be carful with the morphine as it can start off as your friend but become your enemy......pain clinics do not give it out for nerve pain........what dose of Nora are you on? You can add Pregablin to the mix but you have to weigh up the side effects of these drugs and it is imperative you come off them slowly......you need to cut out all sugar from your diet regards thrush......boots sell a product called balance activ vaginal pessaries for thrush and BV they work better than the thrush pessarys.......and the thrush is becoming immune to fluconazole.......I no a lot of ladies use nystatin which is no longer available in the UK.....because I believe costs thus get it from a German pharmacy.......there is also a condition called Ureaplasma that is not checked for as standard which is worth checking out....I strongly recommend you do go and see Dr Anna Palercarous for the hidden vaginal infections etc I can almost guarantee you will find no one as thorough and gentle as her......wear skirts and go knickerless......send hubby off to Boots for the pessarys.......ice the area......and yes I also can't belive what has happened to my body 18 months ago I was riding my horse 5-6 times a week for three hours ago , my life is dramatically changed, no more horses, jeans, long car journeys, luckily went to visit my daughter in New Zealand 6 months before this started as there is no way I could do that now.
As a six emote I have been chatting to a doctor in the UK who has this after childbirth 9 months ago.......she is dealing with it no better than anyone else , she had no idea what this sort of pain is like......and she has had the electric pulse frequency treatment and guess what she is in much worse pain......so how ever desperate you feel really do your research before any procedures.....and regards the steroid jabs.....they don't tell you about the cushings it can cause, autoimmune diseases, plus all sorts of other things......it's a short term sticking plaster......do you have any PGAD problems? That is the feeling of arousal without wanting sex at all? Just try and keep calm and avoid sitting.💐
-
When I was really bad I used to find that going for a walk helped sometimes, also lying in a bath sometimes helped. Have you had a vaginal swab to check that it isn't gardnerella or something? I see that MJ has posted while I have been typing this and she has said what I was going to. I think MJ is right, take yourself off to the local GUM clinic. I went one Monday morning last year and found myself with all the teenagers that had had unprotected sex over the weekend, not my finest hour. Anyway, they did a test for thrush there and then and it came back positive. Another thing, do all the different doctors you have seen know what prescriptions you are on, you are not supposed to take amitriptyline with fluconazale, Dr Anna Pellacarios actually wrote to one of the specialists I was seeing as some of the drugs I was on were contra-indicated, I don't know if noritriptyline can be taken with fluconazale.
I had a UTI, then thrush then the damned nerve became caught up in it all.
Have you tried frozen peas wrapped in a tea towel?
-
good point judith...its my GP who knows about all the different drugs and I have reminded him too...but he seems to cut fast and lose with prescribing I have to say..he really does his best..but I often think he must be missing things...
yes, I have also been to the GUM...feels like being at work for me with all the students...i hated it actually, just wanted somewhere suitable for middle aged women with genuine problems...but the service from them was very good...they picked up the candida glabrata (rather than usual albicans).. and i have a very good specialistvGP there..but she only works on Fridays..sods law..
When drugs are contra-indicated does it mean they wont work or its dangerous?
-
Both......but I believe with ami and fluc......it is to do with the liver and how it is metabolised.......however I do no of ladies who take both as they are on long term antibs, and ami for pain and thrush medication........just ask the chemist as I feel they no more quite often regards the drug interactions......I always double check with the chemist........but the liver dose recover well generally speaking......
-
Info here http://www.webmd.com/drugs/2/drug-8611/amitriptyline-oral/details/list-interaction-details/dmid-2250/dmtitle-amitriptyline-fluconazole/intrtype-drug
Taz x :)
-
gosh mary jane...thank you for all your time and help...its so kind given I am a complete stranger!! but this condition certainly makes you seek out allies in the hope of hope!!
In short....i have had thrush twice recently...Candida Glabrata...and treated by fluconazole..but LOTs of it..both episodes took two weeks to clear and were really painful....i assumed this kicked off the PN.
i have cut out all sugar...did that about a month ago....been doing high grade probiotics etc too...i tried to stick to the candida diet but lost too much weight...so just have some bread and potatoes etc....
But I am also peri-meno so, maybe its that...or just a combination of things?
I have been going to my GUM clinic, and they ARe good...yes...
as I am on 6month fluconazole anyway..i took an extra one last night (dr said that would be ok) and am taking pessary tonight...
Previously I bought some multi-glyn flora plus - at boots for vagina balance re thrush and bv, which sounds similar to the product you suggest? I thought I might use that for a few nights too...
I don't have the arousal symptom...
I am very anti any invasive procedures....although this pain is chronic, I don't feel its going to rectified by anything like and injection....I hear they are doing Botox?? but, I would be very very cautious..
The poor lady with the baby.. that must be AWFUL...
And yes, I have been off work for 2 months..I loved my job..I am a lecturer...I loved jumping on my bike and popping off on day trips with the kids...even getting to the physio I had to lie in the back of the car yesterday...but the worst is not being able to be the mother I want to be...I haven't left the house much for weeks...i've been in too much pain. I am also worried I won't be able to continue with my job..I am the main breadwinner...SO many bloody worries, and for such a little known condition...
The physio gave me pelvic floor breathing relaxation exercises...to try to relax the area..she also texted me late last night to say she wanted to get me referred to Greenslade sooner rather than later..if that was Ok...but he's overseas for two weeks..I appreciated her care though...
If you had ANY simple steps for me...from now in...to get to where you are..what would they be Mary Jane? I am so worried I am going to make it worse???
i am trying physio
relaxing
not sitting
heat pad
ice
tens machine
nortrip...30mg as of today...worked up from 20...
What CAN you do now? I really need to see a positive light at the end of the tunnel...
I hate the idea of Morphine..HATE it.......but I needed it to even function..and stop me wailing in agony....i've only taken 4 5ml doses so far...but its probably two weeks before I can see Greenslade..and even then I am not expecting a golden fix!
Cannot thank you and Judith enough..is there a forum equivalent of buying you a drink!!!??
-
Sorry posts got out of sync there....is notriptoline I am on....and that seems to be risky for irregular heart beat..I am awaiting a call back now from 111!!!
They did check my heart and liver function recently...
-
Dr Anna Pellacaros actually phoned me at home once to 'check that I hadn't done anything silly' when I took one of the fluconazale with the amitriptyline. I had tried to contact her because I had taken one of the fluconazale with an anti-biotic and the amitriptyline and I felt dreadful - like I had been hit by a bus and was terrified. I had to spend 24 hours in bed with what appeared to be a very bad dose of flu. I also took myself off to A&E once as I thought I had damaged my liver with all the AB's I was taking. I am more careful now and don't entirely trust the medics!
-
I am afraid there is NO magic cure for this.......you are doing everything but it is a time thing I am afraid Dr Green as we say in the horse world, as in turn the horse out to pasture and let nature do its thing.
Your main enemy is stress as this winds up the central nervous system and it goes it o over ride searching for the pain.......however I was stressed enough with it but I am not the main bread winner so I really feel for you......I paid for all the specialsits I have seen £12,000 no insurance, and I and Judith 57 have seen the best the UK has to offer and the only thing that has worked is time......and ami for Judith 57 I was on it but got heart palaptiotins from it.....and they can change the heart rhythm to a very few for life.....I also got bad dreams on them.......the problem with this is we are robbing Peter to pay Paul , trying to mend one area to make another area worse......so you have to choose your medicine I guess pain or side effects.
Just remeber NO ONE not even the French can say for definate it's PN but they go on the suggestive symptons......if we where in the US we would have had EVERY investigation known to man kind and most of them get worse........with each investigation they have.
All the physios I have seen are against botox.....firstly it is a poison and has side effects that again are brushed over.....secondly they paralyse the muscle usually the levitor ani muscle.....so that stops spasaming.....but what happens is in the world of physio talk is the other main muscles have to pick up the work load so to speak and they then eventually can become a problem in themselves.....again fixing one problem to set off another.......you have to decide for your self how bad your pain is on a 1-10 and if you want to try whatever is offered to you, or calmly try and wait out the storm......Dr Baronowski who is the guy Jusith and I have seen wrote a paper in January 2014 with two other pain docs regards PN saying the first step is physio and medication CBT pacing life changes/then drugs the nerve blocks......and no one should have more than three blocks because of the accumulative effects of the steroid injections and the x-Rays on the pelvic organs, and if you have CT guided nerve blocks that's even a stronger dose of x-Rays........so for me personally and what happened to my mother I decided against them.
The best thing for you is walking.....keep the blood moving in that area and not sitting there stagnant.
I really don't mind helping people.....as belive it or not it helps me take my mind off my own fanny.....do you still have periods? If so is it better when you have a period?
-
Mine will be a kir royale please ;)
Actually, I have just poured myself a drink to have while watching the derby - I backed the winner!
Honestly just avoid sitting as much as possible, I always have to sit sideways on the sofa now with a leg tucked under me but my foot keeps going to sleep. Give it time, look back at the first posts that MJ and I posted - you will see that we were where you are now and we are both much better although not where we want to be!
I have a bike and I would dearly love to go for a ride on it, couldn't even contemplate it :'(
You have already been really pro-active, I was the same - couldn't believe what had happened to me and how much it hurt!
-
Thanks again....and a nice image of you watching the Derby Judith...I feel very lucky to have your advise....and Mary Janes....and others...I will have to see where the pain takes me I guess....Right this second, I am ok...but haven't sat down all day....
people must be really desperate to go to France from the USA...But I think that a lot of people have too much faith that there must be a cure....especially the men that have this maybe? I may look up that paper...
The Dr at 111 said its OK to take the low doses of my two meds...its when both are given at higher doses that it can be a problem, and then usually in people who are already sick....its not great though...but if my thrush inflames things again, then that will also not be good for the PN!!
And yes,still having periods and it seems much worse at that time...although I have only had this for two periods...so it could be coincidence that it was a tiny bit better between the two..
Its all a big shock isn't it, at first....and a worry.....
-
Yes it really is. If you google Dr B on mumsnet, there is a post from a woman who weaned herself off all drugs and finds she can increasingly sit on the tube on the way to work now, but it's been twelve years!
I try not to think about the changes to my life now and just am thankful that I can remain almost pain-free. I was one of the people fighting to get a seat on the train to work, now I just stand by the door and read my paper or do a puzzle. Whoever thought that sitting would become impossible?
My cushion does enable me to go to restaurants though, best 30 quid I have ever spent :-\
-
Gosh...yes..I am hoping that as I have started 'treatment' ie physio etc, breathing and so on early..that I may be able to keep things at bay...I get stressed with the pain...but who wouldn't??? This is why I am so fed up that the ruddy thrush is back....I really need a break here!!! I feel like I've got some terrible curse!!! But If I can get to being nearly pain free and go to work...then that would be great...its not the life I imagined for myself....but that is what life throws us I guess. I thought me and my hub would be globetrotting retirees....gotta keep hoping I guess....
-
Forgot to mention a TENS machine......it helped me a lot in the early days I had it on 12 hours a day , doesn't stop the pain but is a great distraction I whacked it up high enough so the sensation was stronger than the pain.....it's all about distraction whilst the nerve is having a temper tantrum.
-
Can I check what cushions you use? my physio recommended a coxyx one...I just tried a few in a shop (after lying in the back seat of the car and being driven there)...and that seems totally wrong to me! A little hole in the back, then pressure on your bits and front? I think a u shaped one would be better..that supports bum and thighs but has nothing between the legs...
Today isn't great..went to the GUm just to check for thrush...they couldn't do the test as I had used a pessary two nights ago...fair enough...but the Dr there said she doesn't think that the vaginal pain I have IS thrush (even though when I had this pain before I tested positive for thrush, and had inflamation and white discharge!). She basically said..we are not the place for you...you need the pain specialist and your GP and probably anti-depressants....well, I know I need the pain specialist and am waiting...but I only wanted to know what was going on with my vaginal pain...and if they can't help then who can?!
You have both recommeded Dr Anna P....but I guess she is in London? I seriously couldn't get there at the moment....I wonder if there is anyone similar in Bristol/ Bath area..does anyone know? In all of this I've not seen a gynecologist....
-
The one I use at work is like a ring donut but I honestly don't think it is very good for me. The one at home is U-shaped. I haven't had a very good day today either, my OH drove me to see my mother in her care home yesterday and it is a 140 mile round trip. Everything is throbbing today :'(
-
sorry to hear that Judith...that is way too much I would think....I led in the back of the car for 10 mins....and have had to resort to morphine again tonight...very reluctantly...this is the pits isn't it!!!
-
It really is the pits, how can this happen to our bodies ?? I had never even heard of the pudendal nerve before all this c*** started :'(
-
Me neither.....my sister is coming up to look after me this week...and We were both saying this last week..we never even knew this existed....wish I still didn't!!!!
-
The cushions are trial and era what suits one doesn't another.......however the coccyx ring isn't usually suitable for PN.......as I said earlier I have never used one......but I have recently had one made for me just in case as my daughter gets married in seven weeks and I need to sit......another PN lady made it for me......she was also normal five years ago had a hysterectomy and bang......
Dr A is London yes......she is a sexual health specialsit......there will be a privare one in Bristol I am sure.....as I assume there is a teaching hospital in Bristol?
Yes you should see a gynae just to rule out.....at least have a transvaginal scan......however your symptons in my un medical opinion are PN or one of the other nerves down there......Dr Greeesdale can refer you to a gynae if he thinks it necessary......problem is most gynaes are useless at nerve damage......just remember as little invasive investigations as possible.......
Sorry about the GUM clinic .......they suggested the antids in the form of ami/Nora/duloxetine etc for nerve pain.......what dose are you now on? also you could ask your GPS about a Lidnocaine patch and put it on your butt to get to the area where it's needed it's what a lot of them do in the States and some here.......it's just quite expensive so some GPS are reluctant to use it...
Did you say you think your mum has/had this? Glad your sister is coming to help......must be so hard with children ......have you tried the instagel numbing Lidnocaine on your clitorise?
-
Hi Mary jane..thanks....I am trying everything....
lidocane on clitoris, nortiptoline (30mg)...and morphine only when I can't take the pain any more....but of course now a bit constipated...even though I am also taking laxatives...I HATe the morphine...but its does help a bit...enough at least to stop me crying in pain..and to get a few hours sleep...
I am finding it so hard to stay relaxed with all this pain and new circumstances to deal with...and yes of course the kids....thats partly why my sis is coming up..so they can at least carry on their clubs and things...
I suppose I am at the 'what next?' phase....I can't live like this...but where is an improvement going to come from???? I am actually in a very low place today...
-
and mary jane...I think my mum has some sort of these problems...though at 75 not as bad as mine!
Shes always complained of pain in clitoris, but put it down to being 'cut' during childbirth..ironically, I had two planned cesareans to avoid the prolapses etc. that my mum and sister have...mum also has a prolapsed urethra...
Both you and Judith seem to say that yours has got better over time...but over how long? and what did you do? did you just rest up? and walk..I am almost housebound with the pain at the moment...
-
You were talking about cushions - to work I use a fairly solid travel neck cushion I got from TK Maxx (not a memory foam one as they squish down too much, but one filled with some sort of padding). I haven't got your problems but VA or whatever does make it sore to sit on directly and this does the job nicely as it's effectively U shaped.
TK Maxx often seem to have several sorts of these - might be worth sending somebody to your local one with instructions to buy a couple of different types and see if one suits you. As I said, avoid the memory foam ones as they go flat when you sit on them!
-
Thank you...so kind....I will...and thats good to know about memory foam as I was going to get one online...but won't now...
-
I am two years in with almost now.......I am a lot better although I have pain in my Vulva most days......and when it's my period my vagina aches a lot and I get stabbing pains.....I can't tell you about a miracle cure I am afraid 😔 as I learnt very early on there just isn't one........nerve pain is so hard to treat.....because I work for myself I can rest /work etc as needed and my children have all left home so I only have to think about hubby and me and my two digs who have literally saved my sanity......as my lifestyle is no longer what it was and my "circle" of friends are no more.
I wonder if Valium might help you more? Relax the muscles possibly? Do baths help? I am afraid c-sections come with there own problems and judithn57 has never had children it's just luck of the draw I am afraid.
Your mums clitorise pain is likely to be the PN also as that is where it finishes.😔
-
Thanks Mary jane..well I can work from home a bit...but not do my whole job...I can't think too far ahead at the moment....I need to do day by day..I've only had this for 5 weeks...(preceded by weeks of vaginal pain from recurrent thrush)..
i'm sorry to hear that your circle of friends has changed and your lifestyle....but I can see how that happens.....maybe we need a dog!
I thought you said that you were 95per cent better? ......but clearly this is still very debilitating....
oh lordy!!!
-
Sorry I should have said 75-95% better ......it seems to depend on the time of the month a lot......as I am certain hormones play a big part in this ......so after my daughters wedding I will be looking at going onto HRT......I am so much better because I REALLY look after that nerve I pander to its every wim.......walk lots/potter/rest/ eat very healthy/ and by living like this my stress is low/ as stress and anxiety make it worse.....ll.my lifestyle has had to stop/change as I ownwed a horse and everything that goes with that responsibility ........and all of my friends are horsey and to be honest I went into my own she'll for the first year.....so closed the door a lot myself as didn't want to be reminded of the old me........
But I am as happy as I can be.......pain in our genitals really is the worse area......even down to the clothes we wear......I ised to live in jeans and jodphurs but now I am knickerless mostly and wear long skirts or baggy harem trousers.
.......and sadly can no longer have sex......but have a fantastic husband.......I am certain this awful phase will calm down........and when it does you will need to look after yourself.......I no many ladies with young children such as yourself, you really aren't alone.......one is going to France in August for the PN surgery and another who has never had children is having the surgery today probably as we speak........there are many specilists who say it is very common but just given different names......PN/vulvodynia/IC/ pelvic pain syndrome/ over active bladder/ and some believe endometritose is a pre cursor for some to it........the list does go on......uears of sitting /horse riding/sitting /IBS/ constipation/ UTIs/ thrush......even a simple smear test has caused it for some.😔
-
I think you will gradually start to feel better and the awful clitoral pain will go. The first thing that used to happen to me in the morning when I woke up was that my brain used to go straight down to my vulva looking for the pain and it gradually started to become harder for it to find, if that makes sense. I haven't had the clitoral pain for over a year now although things are definitely not right. I did manage to sit on the train home this evening, with one hand under my right butt cheek.
I have a rectocele and that is causing a lot of problems at the moment so I am stepping back on the medical merry-go-round next week.
Hang on in there xxx
-
Thanks so much for these descriptions.....I am seeing a pain psychologist today just to see if she can help me get my head round what is going on here..
Your descriptions chime with me already though...I am knickerless and have always worn floaty skirts! I have withdrawn from friends and family too...haven't driven for a month, can't sit anywhere really...and obviously am still off work....
I will be interested to hear how the operations in .france go.....although I can't see me going down that route.
I had no history of these sorts of problems...came out of the blue...maybe with hormonal changes at the route of it all? who knows....only had thrush twice in my life then all this.....
thanks again....it is encouraging to know things will be better than now.....hopefully.
Although no sex is a difficult one for a handsome 43 year old man to accept, and for me too.....
I have to believe that I will make a full recovery....I have to keep my morale up...
-
Just had an email From lady who had surgery a week ago.......makes me want to get on the next plane to France to be honest.......the surgeon ( who is the world leader in this) said she was predisposed to it happening ......narrowing at Alcoks canal which is where it usually gets trapped.......so I will keep in contact with her......all paid for by the NHS.......this lady has never had children and hers was caused by having sex.....she is about 57......
Hope the pain physiologist helps you.....as I said I am hugely better, but my life is so different to be as I am......so do I consider surgery........ummmmmmm.......I also have not had sex for a year, and the lady who has had surgery is two years....I am only 48 and feel said for myself any hubby that as it stands there will be no more, as the fear of setting it of again to be really bad is just to big a risk.
-
Oh Mary Jane the lady who has had surgery in France could be me - 57, no children and caused by sex! I haven't had sex since Feb 22nd 2014 when all this c*** started. Let me know how the lady gets on, I might be on an easyjet flight to Nantes!
-
Yes, let me know too ladies....I have an appt with Dr Greenslade end of June..on a Saturday...he's fitting me in before he goes to a wedding...
The psychologist was OK...and expensive.....I may go back, but at the moment I am just waiting for my consultation....although I am not hoping for any miracles...
I am limiting the morphine as much as possible...
Its nice to be on here and to hear from others...my family are being so supportive but I don't think anyone can understand it unless you have it....
I didn't realise that the people who go to France are paid for on the NHS...I assumed you have to go private....had she waited for ages? or had it for ages?
-
She had it two years, and decided she had come to the end of the road......she is contact with two others that have had surgery there again paid by NHS, they are both doing very well......from seeing him and surgery was three months ish, your case has to be Befroe the CPC I think it's called and a GP that will get on your side, but the surgery is not horrendous it's about £6,000.
I spoke to her the other night, and the surgery took one hour both sides where entrapped and it was an anitomical defeat that was waiting to happen at any time, she managed to walk to her surgery for bandage change, and has not needed the tramadol.....healing is 6-12 months and peolpe with PN/ and after surgery should never ride a horse/bike/yoga/Pilates/and breast stroke regards the legs.
So I am going to keep in contact with her.......and watch and see......she doesn't work and would not be able to regards recovery.
-
Wow....yes, crikey....god this is all so massive isn't it....I am finding the thought of it all a bit overwhelming...
-
Yes I no.......you are a newbie to all this and have that panic that Judith 57 and I both had ( still do sometimes ) but time is a great healer If you look after that nerve, and if you try everything and nothing works then at least you no about France......you, Judith and myself could go as a discounted job lot 😜 have to laugh sometimes.
Also try and live in the NOW, it's hard but it does help......tomorrow has gone can't do anything about it, tomorrow we don't no for certain what will happen......we only have the now not even the next hour, just the now.........
Also I have had a week of almost pain free.....and I wore pants all day yesterday for the first time in 18 months........and on Saturday I sat for two hours on a chair, with minimal pain......as Grand daughter has been very sick in hospital so just had to suck it up and see........by the end of the day I am a bit uncomfortable but ok........and I havnt had PGAD for a few days either which is FANTASTIC as that is a beast.......the lady who had surgery also had that.........
Good luck with Dr G........just be aware and do your research.......and you can ask for the nerve lock to be done without the steroid just the numbing part to HELP with the diagnoise, because as the French guy says NO ONE can give a definate PN diagnoise until surgery, but it's a thorough assessment that helps , also when you visit him in France you are seen by 3/4 specilists and they all have to decide on the diagnoise very different to here.......and that part is about a £1,000 ish including the nerve block without the steroid.
-
Lol yesterday has gone.
-
thank you mary jane...that is reassuring...WOw wearing pants is a big step forward...I am currently struggling with a period as well!!! i suspect you have had that dilemma too...and yes..I am panicky, and stressed and who wouldn't be??!!
I am terrified I won't be able to be the mum I want to be, that I will miss out on things my children do...that I will live in pain! that I'll never go back to work...its all overwhelming...
I will try to live in the now...especially not looking back...it doesn't help..
-
Spoke to soon😖 resting for now......nerve pain is such a 👹👹👹👹👹👹👹👹👹
-
Ahhhh..poor you...yes the jinxing...never do that!!!!
I'm thinking of you.....
BTW I wasn't sure how anonymous to be, but my name is Kate.
-
Hmm..just back from the physio who says she is baffled..... as mine is not classic pudendal nerve presentation...just the branch to the clitoris?? and becuase the pain is so intense....Also she can't find any trigger points to work with...did anyone else have this? Don't know if thats a good thing or a bad thing....
Wow this is frustrating...and I know so many others have hed their own versions of all of this...
-
Well.......the fact that it's the branch of the PN nerve is a form of PN in my opinion, and many ladies on different forums only have clitoral pain, but are diagnosed with PN. But as I have said before nerve pain is nerve pain,made you any better ? How are you getting on with Noratriptyline?
She will probably call it clitoredynia, dynia Latin for pain, put the two together pain in the clitorse.
-
Hi, yes thought that Maryane...and the ohysionsaid as much too...that even with just the clitoral pain, its still PN....I am waiting for the nortriptolyne to kick in! Its maybe doing something...say 20 per cent less angry...but that could also be the physio..or time, whatever..its hard to know whats doing what I guess..
I have had all the info through from Dr Greenslade and it includes costs fot the two types of nerve block..as if I might have them (or be offered them) there and then...I really want to know about these before I go...i know you have said avoid the steroid one..and I'm not so sure the benefit of the diagnostic one, if it doesn't tell you for usre? I guess it can rule other things out? Are there any other forums where this is discussed a lot? or where women have had them done by Dr Greenslade....? I am all for letting things try to calm down really....
-
There is Pudenadal hope or as Judith and I call it No hope......there is pelvic pain unlocked UK based and the FB Groups which are scary........as they are mostly Americans on them and they have EVERY investigation known to man and it just causes more problems.......
I can in box you a ladies name who had surgery at Bristol and you can read her thread ( bad bad bad ) I am happy to chat to you in the phone as sometimes it's easier as unfortunately I know all there is to no about PN😒which it was hip replacement or something more common, not demeaning hip problems but there really is nothing like genital pain, some people get a 100% relief from Nora......but remeber the nerve is still angry.
-
Yes, I found pudendal no hope very early on - its hideous in every way....and scared the life out of me....It has no good news stories....even going back on it to check out cushions was horrible as they have all this disability equipment, which I am sure some people need, but its so upsetting when you are young and want to get better...my physio says she has helped a few ladies to get a 95per cent improvement....(with medication and other help too) and its takes time...and she seems very professional and realistic...but there is nothing like that on PH.
I suppose I am stuck at the moment, because I don't want to hear the bad news stories.....but I know I need to do some research too. I don't want to go for my consultation unprepared. The irony is that I have worked in research all my life and now suddenly I am scared of the facts....
Maybe I should read the thread of the woman who had the surgery in Bristol....although I would never do that..it already seems like its France or nothing, even if thats a long way down the line. i hope roberts isn't getting near retirement or anything?!!! I cant believe that there seems to be one place in Europe.....I read about a man who had surgery in Bristol but had seen no improvement. I suppose this is a genuine problem that to get experienced, they will have to do more surgery, but at whose expense?
I think it would be really helpful to talk on the phone, and thank you for offering to do that. How do we make contact?
And Judith if you are reading this..how are you doing too? I don't even know what retocele is!!
-
Hi yes I am still reading this and glad you are beginning to see a little bit of improvement. I am down in the doldrums a bit at the moment. Look at my other posts over the last few days and you will see what a rectocele is :sigh: I have also had issues with my GP prescribing the wrong HRT product!
All of my problems started with some slightly energetic sex on 22nd Feb 2014 :-[ I should have remembered that I wasn't nineteen anymore! The next day I had soreness and bleeding when I went for a pee and a UTI was diagnosed but nothing felt the same inside me, I started to get more and more pain until eventually the PN seemed to get involved and I was in agony, could hardly walk, crippling clitoral pain etc.
Basically, I now think my whole pelvic floor is knackered and the rectocele is causing me a lot of distress as I now have a 'pouch' in my vagina and have to intervene to empty my rectum. I do not get very much actual pain anymore just a general feeling of being very uncomfortable.
I think my pudendal nerve is trapped on the right side as I need to cup my right hand under my buttock if I sit without a cushion :'(
I think my next plan of attack is to have a pelvic floor scan at the place where MJ had hers done, see if anything can be done about the rectocele and then potentially look to going to France for the PN surgery. I have an appointment with my boss at 10.00 tomorrow morning as I am finding it increasingly difficult to go to work now - not what you want to hear, sorry! It isn't the pain causing issues anymore though it is the rectocele.
Have a chat to MJ, she really is an expert now as she didn't mind reading the scary websites. They frightened me to death, even the periphery of the sites when you want to look at cushions are horrible, as you say.
I had three nerve block injections but I don't really know if they helped and they weren't very nice either, had to go into an operating theatre and be sedated.
Keep posting!!
-
I will in box you my phone number.......and to be homest I have suddenly gone down hill from nowhere the last few days, I think becuase I had to do quite a lot of sitting with Grand daughter in hospital and it has all reacted. After my daughters wedding in August I am going to set the ball rolling to pay a visit to France......Judith 57 want to come also......it does not mean I will have surgery but it is the closest I am going to get to a diagnoise.......
-
Judith they don't knock you out in Bristol or France, why its so much cheaper to go to Bristol than London and cheaper to go all the way to France than London, wish I'd gone when I said I was going to to be honest, just talking to,a UK lady elsewhere who's friend had it done 20 months ago and is now better, she didn't she backed out at the last minute but is talking about going ....Prof Robert is staring to cut his hours yes regards age.
-
I think I will go and have a 'standing up' scan where you went, I have been really uncomfortable this weekend, things just not in the right place. We need to get to France before the Prof retires.... :scottie: :scottie: :scottie:
-
God, now I am really scared.....surely he has a team? and someone coming up behind him??????? can we find out?
Maryjane....I accidentally replied to your pm without putting a message in! Can I call you on tuesday?
-
And Judith...that is soo, soo difficult....I really feel for you. These womens issues are just so complex and so debilitating..I am amazed that you have managed to work through this..I have been off work for nearly two months...You must be very strong...And To think it all began with sex.....nothing like this ever happens to men does it? Can you imagine if all the effort that went into developing viagra had gone into women's research...there would be a prof Roberts in every hospital....
-
I know, I wish I had closed the door on any hanky panky when I reached 50 :-\
-
Yes ring me Tuesday......text me first to make sure I am not out shopping don't want to talk vaginas and clitorise in the middle of Waitrose 😜 he does have a team , but I think he is the main man, but no retirement is not imminent.
It will be a miracle if we ever have sex again , very sad😔 would be to scared of making things even worse.......but there are more than one way to skin a rabit.😎
-
Shame the 3 of us can't have a conference call :lol:
-
I have two other ladies wanting to chat to me this week......wish I was known as the sewing guru or something like that one flipping vaginas everything to,do,with our nether regions.😝 but Judith 57 you are my original fanny friend 💐
-
Aaaah thank you, wish I was your frozen shoulder friend though :'(
-
me too.....this is all so hard to deal with and to discuss....
-
I have lost all modesty .....half of Harley Street saw my nether eg ions last year 😳 and Judith 57 sometimes me in the am and her in the pm with the same wows😏my daughters ring me and say how's your vag mum.....and also my son in law......a problem shared is a problem halved and belive it or not we do laugh about it sometimes as I am cried out.
-
Maryjane....thanks for the advice the other day....Hope yours and Judith57s flare ups have calmed a bit......
-
How are you getting on? Are you feeling any better? I took the day off work yesterday as I had booked to go to the theatre, the first time since all this nonsense started. I missed so many things last year that I had booked and paid for, a weekend in Nice for the Monaco grand Prix, tickets to see Carey Mulligan and Bill Nighy in a play, umpteen NT live performances at the cinema, my nieces wedding :'(
Anyway, yesterday was quite successful, I took my cushion and had booked an aisle seat just in case. I saw Bradley Cooper in The Elephant Man, he was amazing, I even went to to the stage door like a groupie.
I hope you are feeling better and not still having to take morphine.... xxx
-
Its so lovely to hear that Judith...good for you...I love Bradley Cooper.....and would love to see a play..or even go out for a meal or a coffee (well luckily my local cafe has a high bar...I can stand and the family sit on the stools...)
I can't sit much at the moment..I haven't got the right cushion yet....but I am also really trying to protect myself a not do any more damage....at this relatively early stage I am trying to give the nerve its best chance of settling down...I am doing meditation tapes (never thought I would) and a lot of reading of trashy novels (again, never thought I would)....lying on my front is the only comfy position...and my sister has me on an anti-inflammatory diet which is just very healthy and she is trying so hard to help me out...its very touching...
I have only taken one morphine since last Thursday...so maybe the nortriptoline is beginning to work....I think my physio helped a little too....even still any advice gladly received....I honestly think that only people have had this could have a clue.....
I have always been really sympathetic with my mum, but I am now sure she has this too..and I look at her in a new light..at just how strong she is... She almost missed my wedding with it, and I totally understand that now...
I am sorry you had to miss all those lovely events....I am looking at Glastonbury this weekend thinking my goal is to go to that in the future....
ANY tips on what to do..always greatly received...
I have never been on a forum or anything either, and I am still quite moved at the kindness of everyone...'the internet is brilliant for some things!
-
Glad to hear you are feeling better :). I had never been on a forum before either and have absolutely no intention of going onto NO HOPE!
-
My daughter and other half are off to Glastonbury this weekend......third year now......they have to go to work on Monday having got back to London at 6.00am and straight to work.....they are going to smell......they both asked for days off and where told no....so the are going to make them pay for there lack of hygiene over the few days they will be there.
Yes lying on your front takes all,pressure off the pesky nerve.
-
I mailed pelvic pain support group on sunday eve...Judy...my first contact with them..she says she doesn't know how long Prof Roberts will carry on for..probably 2-3 years..
And there is someone in Boyenne, Dr Raine (?) that does it??
I know this is all a long way off...but I sort of need to know I have options down the road?!!! How do you two feel about it?
How long is is reasonable to try to manage symptoms for in order to know if you are going to get better or not? Ie how long do people wait and do physio and so on before heading down the surgery route? And do you know of other people with this clitoral pain that Have got better through more conservative methods???
my physio and another one have said its possible to make very good improvements?
i want to be a bit clued up before I see Dr G!!
thanks again..I will stop being demanding at some point, honest!!!
-
I told myself two years......which is the Christmas as I am also aware of the clock ticking regards Professor Robert......my physio who had it herself took two years to come 95% right, she has patients who went to Feance within 6 months that she said was right for them as if the nerve is trapped no amount of physio is going to cure that.
I am going to set the ball rolling mid August regards arranging a consutation with him and his team as I have nothing to loose, it doesn't mean I will have surgery but it will be my best chance of a proper diagnoise.......
I have been thinking the last few days since your post has turned up and am I really 75% better or have I just got used to it, I am probably thinking the later, I rarely cry anymore about it like I used to, I am just p%$$#d most of the time, I had a good day a few days ago but did to much and now I am suffering and its just blah.
The problem is in the UK, there isn't anyone we can really talk to about it, and we have to be our own guides and help each other out, as its so brushed under the carpet.
There is also someone called Jacques ........ In Belgium I believe that also does it. The lady I chat to who has had the surgery the other week, has had her dressings off and doing ok, obviously far far to early to see if it will be a success.
The problem is no one knows who gets better, as the ones who do don't go on the forums as they wont to forget about it, I do no where ladies have had the clitoral pain for years with no other symptons and suddenly bang its spread....but who knows with nerves......but if any of is do head down the surgery route....it is still a life time of looking after the area as in no horse riding / riding a bike, yoga, Pilates and breast stroke, and be careful what and how long you sit for......as some peolp do re intrape.......
-
Yes....thanks Mary Jane....this is what I was thinking, and its crazy that there is nothing in the UK to help...just crazy. Even the thought of getting to France is difficult for most with this condition, surely.....
There is the American surgeon's website full of happy people post-op....driving and scuba diving after decompression surgery! But I guess thats a selective portion too..I am glad you don't cry too much any more...I have a blub every now and again, but my family don't let me wallow - and I have to keep it together for the kids....
I suppose r G may offer me more medication...but the trouble with that is its just masking the problem, isn't it? I may also think about a consultation in France...as you say, at least you know what you are dealing with then....I have had the vaginal pain on and off since Feb, and this clitoral pain for 2months...it seems long enough for me!!!
-
I assume the American site is Dr Filler or Fuller can't remember .........ummmmmmmm........barge and pole go together......😏
I will email judy as she acts as a go between for those who want it as she speaks French.
-
How did you get on with Dr Greenslade?
-
good. thanks....he has upped my meds and prescribed oestrogen.....so will give that a go...review in 6 weeks.....think i overdid it today with the car ride etc though...he wasn't that clear on what is causing it, but i don't think its possible to know really..
-
That's good, has he prescribed Vagifem or oestrogen cream?
-
How are you getting on with your oestrogen cream, Judith? Which one were you (eventually!) given - was it Estriol? I hope it is helping you. :)
-
Hi Jenna, yes it is Estriol and I did have to pay again >:( Thank heavens I didn't start rubbing the other one into my bits. I only picked the prescription up the other day and haven't started to use it yet as I was really burning when I tried the Vagifem and am reluctant to put anything on my vulva at the moment. Will keep you posted x
-
Yes, Judith, good job you realised, but not right you ended up paying for your GP's mistake. I totally understand your reluctance to use the cream at the moment, given all that you have been through. I just wish for good health for all PN ladies, as I'm sure we all do :foryou:
-
Thank you Jenna xxx
-
Hello all.....yes vagifem for me judith...and quite high doses of nortpiptoline....
-
Hope you start to feel better soon. Let me know how you get on xx
-
think mine has spread....fizzing, tingling feeling round my bottom now....bloody helll! scuse my French...struggling a bit today....irony is that i think I angered it visiting the Dr at the weekend...its the first car journey and i sat on that wrong cushion for a while....
was so hoping that the next change would be a positive one...do you all still dream that you will wake up one day and it will be gone?
-
That's a p*~#$d off nerve I am afraid, sitting with PN is the enemy I am afraid.......yes we all dream of a happy ever after, but reality kicks us into shape.
Hopefully it will calm down, if you don't sit too much....have you thought of a sit/stand workstation for work? ......and the valley cushion I told you about is the rolls Royce of cushions you can hire it for a week to see how you get on.
You need to look after the nerve as it is your clitoris regards it turning to PGAD as that takes it to a whole other level.......
-
That's what happened to me, I started to feel as if I was sitting on an electric fence, everything was fizzing! Really bad pain in the rectum as well. This really is the pits!
I used to wake up feeling like a normal person and for a few seconds it was lovely then I'd feel the burning and remember that I wasn't a normal person. I have been struggling a bit the last few days, I hate it when I start to go backwards :'(
-
Its all just crazy..we shouldnt have to live like this....doing all our own research, and going from one 'expert' to another.....I have been barely able to leave the house for months now...and If I hadn't paid to see Dr G. or the physio, I would just be at home with a bottle of morphine!!
But that sort of thinking doesn't help either does it? Not sure what to do next really...stay calm I guess and be patient....Maryjane..how did your ohysio manage to improve so much? do you know?
I am almostvtempted to start the ball rolling for a trip to France (no idea how on earth I could do the journey) but it doesn't seem we have many other options...have nerve blocks ever worked for anyone?
-
Nerve blocks from my knowledge have never cured any noe, they are a diagnostic tool.....that for many and I mean many make it worse and they have huge flares as the steroid aggrivstes it.
I havnt had physio since September as at a £120.00 an hour it was just getting to much, I just hardly sit and keep moving as much as possible, there are no miracle cures.......I to am going to contact France as soon as my daughters wedding is over in August.
Some go over in a hired camper van and lie down......others just suck it up on the plane....and get a note from there GP to stand after take off landing......yes it is crazy what is happening to us, but the clitorise alone has 8,000 nerves.....wish I'd never sat on a horse with mine......and the docs just bury there heads in the sand with pelvic pain as they hardly no anymore than we do / and most of them less.
I am chatting to a UK GP on the phone tomorrow who also has this really bad, and she feels equally let down by here own profession and can no longer work......and there's a neurologist in the States who chats on a FB page who also has it, and he really hit rock bottom mentally and physically but is doing OK now,......so if these guys are struggling what chance do we have.......and because we are so desperate we come across as either mad or hyperchondriacs or both, of which I have had it implied to me.......and this flipping hot weather is making it all worse down there 😖😖😖😖
-
Hi mary jane...interesting about the GP as my physio said she had helped a gp to get 95per cent better! could it be the same person?
Do people get better from the surgery though? I have read that some do..
I feel my life is so badly affected....can't get to work...can't look after my kids etc...its terrible...I am ming about the house getting depressed I guess...just standing then lying down and reading and then again....I can't do days out or anything like that..if I knew that lying down and taking it easy was helping it to heal then I could persevere...like if I was post op or something, but this is all so unknown..
Will be interested to hear what the GP is doing...
I am seriously tempted to get the France ball rolling...Judy said 3months for a consultation and then about the same before any treatment? is that what you have heard from others?
Dr G was quite optimistic that I'd improve...but that was when I only had the clitoral pain....
Do people's nerves ever just get better? I can't figure this balance between painkilling and not damaging the nerve....I mean as it is today I could physically jump in the car and drive, but there is no way I will because I know I'll be putting pressure on the nerve and making it worse in the long run...
Everyone keeps telling me..'you will get better' and I so want to believe that that is possible...
ho, hummm eh...
and thanks again all for your knowledge and sharing it....
-
No it's not the same GP , as this one is in a right old state.....she has had pulsed frequency stuff done which some do, and it has made her so much worse.
She got it after childbirth nine months ago......will let you know what her plan of action is.
Regardless of wether we have surgery or not I think it's worth seeing the world expert on it, to get a good perspective on it.
However the nerve will always always have to be looked after , he tells his patients to never ride a bike/horse do yoga Pilates or breast stroke........they say ten years for nerves to heal if they ever do.
-
I'd be happy to look after mine...i'd certainly never want to ride a bloody bike again anyway....well I loved it, but that would be a small price to pay...Poor GP...that doesn't sound good...
My sister had nerve damage (facial) after an accident...and it took 18 months to truly heal...I wonder. And i guess it all depends of whether its entrapped or just aggravated somehow...So does the pulsed frequency thing work for some people?? what is that one? The GP must have thought it would work, or she wouldn't have had it? I can not even IMAGINE getting this in childbirth and having to look after babies with it...poor, poor thing....she must be quite young too then....
I wonder given that my mum has it if mine was waiting to happen....thank goodness I did have the cesareans...maybe that would have happened to me...
I feel so much for that poor lady...
-
On the FB group I am on many many of them have it from child birth, one lady has had to give her baby to her mother in law in a different country to look after she is bed bound, she's in the UK child in France........others are drugged up the eyeballs.....with husbands leaving them it's very very sad.
The GP I am talking to tomorrow......has just finished her three year part of the GP training, and she said all those years of study for the career she so desperately wanted will be no more, she has a nanny help with the baby and mother......I feel sad as I can't help my daughter as I would have wanted with her baby, it's the lifting that's a big no no with this, again for life.
She has private Heath care, says a lot 😉 and she is trying everything in desperation, but the frequency thing has made it worse I was offered it also, but turned it down.......we are guniea pigs with this........yes The Prof says he sees it go through families, hence my panic with my mother me and my three daughters and now grand daughter.
-
You are so brave MJ I can't be doing with any really scary desperate stories, I have to try and remain positive and those stories suck all the hope out of me.
On the plus side, I sat on the train on the way home tonight and also a five minute bus ride :cancan: whoever thought that would be a cause for celebration.
We must arrange our lunch after the wedding xxxx
-
Well done re sitting.......yes meet up after wedding it's on the 1st August not long now.....stress levels are building.....
I get people messaging me to chat.....the GP is coming to me which seems a bit odd.....I went to see my GP today ( she's lovely ) and she said this needs more awareness.....I go back for a twenty minute chat to see where I am at with it all as she said the ten minutes isn't enough.
Where shall we eat?......there's a lovely tapas bar in Mayfair my daughter took me too once.....if you like that sort of thing....
-
Yes that sounds good to me, I'll bring my cushion :-\
So hot today in London - not good for fanny issues :'(
-
Hi...yes I don't want to know scare stories either!!!!!
I have just walked home from the cricket club next door and am feeling not too bad...
-
I haven't read all the thread but my heart goes out to all you ladies suffering from this. It sounds the most desperate of conditions, and I didn't want to read and run.
I also have what appears to be a condition to do with nerve damage and we are as you know in unknown territory.
I still think that neurology is the last bastion of the medical field to be conquored.
For the last 9 months I have had to trawl myself from specialism to specialism and do all my own research, like some in here I would pay my last penny to find a cure but as we know it is not always a matter of money with theses things. Sometimes it is just luck, good or bad.
I wish us all well and hope we can overcome these awful conditions, they do make one feel desperate about life and bring such radical changes to the futures we thought we might have.
Some of the anecdotal things on here about folk having to give up their children and careers is truly tragic.
-
Thanks Nemesie....and sorry you are suffering with your "nerve" issues also.....at the beginning of this I saw a top uro/gynae who has specilised in uro/genital nerve pain, and she said " we simply don't no enough about nerve pain, and especially in the pelvic area" it is the last frontier, and the problem with nerve pain is, gynaes aren't hardly taught anything about nerves in med school, unless they choose to take it further, and neurologists don't go into the pelvic area, unless they choose to take it further, so in medical turns it is a hot potatoes that no one wants to get there hands burnt with, and only the very few like The Professor in France have taken on the challenge of the "hot potatoe".
.......and yes it is truely sad what has happened to others, but by burying our heads in the sand and pretending it isn't happening, just puts the problem further underground and is hushed up even more.......it REALLY needs getting out there as two thirds of women at any one time suffer some form of pelvic pain and a third of those it remains........the saying .....hear no evil, speak no evil, see no evil really has to stop and we have to shout from the roof tops.......there endeth today's sermon.😖
-
I have done the same as you, chasing a cure going to top specialists, paying thousands of my own money etc. I think I read one of your earlier posts where you pointed out that sometimes there is no miracle cure for these issues you just have to hope time and patience are enough.
It's all too tragic.
I do admire you for trying to get your particular condition more exposed to make there more public awareness.
Presumably it is a hard one to actively avoid as its so random And can happen in childbirth or if there is a genetic connection, or through sex, or through infection but these things do need to be more out in the public domain.
It is frightening to think anyone of us could get this type of thing. I have a 22 year old daughter. You just never really know what is out there for you.
It makes one wish one had more fully appreciated good health when one had it, especially when the conditions we get mean will probably never be the same person we once were.
Hugs and Fight the good Fight with the awareness campaign.
-
Hi, yes, I agree with that...I thnk that its so distressing when you have it that you just need all your energy to cope with it....and also it has made me far more introverted than I was.... and if people do get a bit better, they just want to forget all about it...so where there should be some strength in numbers there isn't becuase we are all too busy just coping....
My boss came to see me for the first time yesterday and i felt like that was another world that I havent been in for months....they are being so brilliant but I don't know how I can work more than a few hours...and from home!! Not great when you are a professor leading a research cente and teaching hundreds of students....
i want to read that there is some hope, and some positive endings out there....but its impossible not to come across all those personal tragedies while you are doing it, and like Judith 57 they suck my hope too.....
I will try to be strong though....and give any useful insights I get on my path too....
-
this is totally left field, but has anyone tried TRE? Trauma Release Exercises? My sister is training to be a yoga instructor and swears by them...they scare me????
Hope the GP was ok today....still upset for her, and grateful for being healthy at least for my kids baby and early years....
-
I tried to resign last week but my boss won't hear of it. It is such a shame as I love my job and don't really want to leave but it is so difficult struggling with this pelvic pain. He told me how much he relies on me, I am his rock etc so I have agreed to stay for now :-\
He said he wants the old feisty super-confident Judith back. SO DO I!!!!
-
Ih Judith....i can relate to that...my boss is also my PhD students (complicated, she is doing her phd later in career) and there i was sobbing into a cup of tea with her yesterday.....its not me...
its nice we have such caring bosses, and that they are cutting us slack at this difficult time too....
can you work from home etc?
-
I can't really work from home as it is quite a hands-on job, I need to interact with a lot of people and it would be difficult from home. I so didn't think I would be having to put up with this c*** at this time of my life. I had such plans for when I retired - travelling etc.
Ho hum, what doesn't kill us makes us stronger apparently :-\
-
Bath mum .....I am reading a excellent book called the V book.....a doctors guide to complete vaginal health......by Elizabeth G. Stewart, M.D and Paula Spencer........the clitorise has 8,000 nerve endings and guess which nerve it is? Our friend the Pudendal nerve😔and is the most sensitve organ in the body.
-
Hi Maryjane....well yes, its crazy isn't it, I never gave my clitoris a second thought and now its ruling my life....I wish they could just inject it and kill the nerves off...i wouldn't care!
Saw my physio today.....she is at a big pelvic physio conference this weekend..and is going to see if anyone else has had a case like mine, none of the physios on her forum have had this presentation aparently...its PN but only the one branch she thinks...and she's finding it hard to find trigger points?
-
And Judith..I know what you mean....I had mental plans for all these amazing family holidays now the children are a bit older....but I am not giving up on my hopes...we will get better...the body wants to heal itself....we have to believe that...
-
Yes positive thinking! You are sounding so much better than your initial posts xxx
-
I tried to resign last week but my boss won't hear of it. It is such a shame as I love my job and don't really want to leave but it is so difficult struggling with this pelvic pain. He told me how much he relies on me, I am his rock etc so I have agreed to stay for now :-\
He said he wants the old feisty super-confident Judith back. SO DO I!!!!
I want the old super feisty confident me back. But sometimes you have to do what you have to do, if you need all your strength and resources to get well maybe you should follow your own instincts not your bosses. Perhaps s/he could give you a six month sabbatical ? It sounds like you are excellent at your job, when you recover (positive thoughts) you could either go back or get something similar. I have had to give up work for the present to deal with my debilitating condition (not PN).
Hugs to you all and better days ahead.
-
Hi yes, its hard to know when to let go and when to fight on.....I need to keep my salary coming in till my husband gets a full time job...he's always done more of the childcare while i had the bigger salary...and now its hard for him to get work...its awful how people are so wary of men who have had a career break....
my work are being amazing, and letting me do bits from home as and when i can, but its difficult. It does make me feel like me though..rather than just a member of the angry bits club!
Looking forward....Can anyone give me their wisdom on nerve blocks? i know MaryJane you said..no way in Bristol..which is near me...
! I know that will be the next thing i will be offered...I have read a promising paper from Australia showing 40 percent of women with PN found their symptoms didn't return, yet other papers show that nerve blocks only ever give temp relief....I am usually pretty good at wheedling out the facts...but this is confusing...
-
...i wish you all well too.....i keep looking at wimbledon amd thinking how odd it is to just be envious of people who can sit down! and i ordered my valley cushion today.....ho hum....
-
Me too, I look in envy at the people sitting at Wimbledon and sitting on the train and can't believe how much I used to take it for granted. I had two separate meetings at work today and couldn't really take my cushion with me so that was a challenge. I have a sit/stand desk and had to spend most of yesterday standing. I hate this so much :'(
-
I feel for you so much Judith, but you are doing so well to be at work. you must be very strong to keep going with all the problems you have....I read some of your and MaryJanes earlier post yesterday....gosh what a story.....
I am at home still unable to sit in a car or at a desk...I spend all day going from standing to lying on my front..I have now got to start with the work Occupational Health process....but I can't really get to work in the first place...a 40 minute commute by car...so, I don't knownwhat will happen.
I actually had a good day yesterday and thought I may be turning a corner, but today isn't quite as good again....so I have to keep positive and hope....that said, Dr G's letter said I have depression....which he didn't say at the meeting...I just wonder if anyone was faced with these symptoms out of the blue, when they had a life they loved, a job and young children, then well yes it might be quite hard to remain happy!!! one day at a time I guess....and waiting for these higher doses of nortriptoline to kick in...
-
Of course you are depressed, your life has been completely f***ed up! Dr B sent me to a CBT guy and I had to fill in a questionnaire:
Do you feel shame at what has happened to you - Yes
Do you ever contemplate suicide - Yes
Are you depressed - Yes
On and on it went and I answered yes to everything :'(
It did do some good talking to him though....like unburdening myself!
I have had two relatively good days, I don't work on a Friday anymore so have finished for the weekend now.
Sending you warm thoughts xxx
-
Hi all, this is my first post on this forum, brought here by someone who told me about this thread....
I've had PN for six years now - during that time I've been through meno at long last due to having to come off HRT so I do have a bit of forum relevance at least.
I do hope that you don't mind me jumping in here, but maybe some of what I've been through can help someone. This is such an awful condition and so overwhelming especially until the pain comes properly under control.
Where I'm at, just so you know -
The PN was brought on by damage done during NHS mesh surgery to repair a pelvic prolapse. I saw Dr Greenslade on the NHS, out of area for me as I live near Bath but my GP agreed to refer me to him at Frenchay - and he in turn referred me to a surgeon at Frenchay. Dr G has also sorted me with a med regime (topiramate, pregabalin, duloxetine) and I'm now back in the care of my lovely GP. I'm pain-free as long as I stay within my limits. I'm sitting to type this on my laptop - I don't sit without an appropriate cushion, I've sorted out what helps me. All my treatment has been on the NHS.
I don't know where to start replying to people's posts - my heart goes out to you all -
But IMO that happy ending does exist.
I'm not scuba diving (don't make me laugh) nor am I running anywhere and please don't ask me to walk up any significant hill. The PN is not gone, it is not all better, but it is managed. Either I am ok or I have overdone things and am lying on the sofa with my feet up - but when I am ok, then I really am ok. We were out on our narrowboat recently, one day I worked 22 locks on my own, wonderful day! Two days later I was paying for it and needing to rest and take a bit of tramadol but wow I did enjoy myself in the sunshine! And I will have more days like that, I just have to learn to stop before I overdo it, ahem.
-
Hi thanks for re-plying Calluna........I was given your details to pass on from the person who directed you here, and was going to do so this weekend as I have been snowed under with my work and daughters wedding plans three weeks today.
Glad you are doing well.......but I no I couldn't tolerate that amount of drugs, and SSRIs are a big no no for me as the risk of making the PGAD worse is too great.
Yesterday I was completely pain free, it's just so odd......however I stood 95% of the day I reckon.....I private messages you on the other forum at the beginning of this journey, if I remember rightly as you mentioned doing too much gardening and it was causing it too glare a bit.
-
I used to have PGAD - it disappeared when the mesh was removed at Frenchay. I know I've been really lucky.
I had to go and look up which med was the ssri - not as 'up' on all this as I used to be. It's the duloxetine if I have it right?
Anyway originally it was just topiramate and pregabalin. But then I got v depressed and GP added sertraline, Dr G changed it to duloxetine as being likely to help with pain as well, and I think it does. It took ages to end up with topiramate and pregabalin and get levels sorted out, we had tried just about everything else. Once neurosurgeon has finished what he can do re TN which is a bit of an issue recently then we'll start reducing these meds if poss because as you say it is a lot.
I remember you from the other forum! (despite pregabalin brain haha) not sure it can have been me that you messaged though, I am no gardener. I do remember someone else talking about doing too much gardening and getting a flare. But who it was, there I have no clue.
So sorry you are still stuck with PGAD, that's horrible. Hope all goes well with the wedding plans and not surprised you are snowed under - but what fun! - hope the sun shines!
-
Calluna I am not the Maryjane on the other forum.....although she actually lives about five miles from me.....I have a different name.
-
Bath mum.......I have in boxed you with Callunas email address so you can contact her.......the wonderful world of forums.👍
-
Thank you so much ladies....I do appreciate it.....trying to enjoy the weekend and the children.....it is good to know that you can get pain free in the end....
Thank you maryjane for sending me the email too....I will make contact when I feel able to...i am fluctuating so much at them moment, when I have a good day I get all hopeful, then the next day is almost always a step back....but
i recognise I am probably at the beginning of all this.
-
Maryjane I am so sorry about mistaken identity, I do apologise. As you will have realised from my email, my name is different too.
Bath mum please don't feel any obligation, I am here if I can be of any help and that's all there is to it. This thing is never quite the same for any of us, all we can do is try to support each other. :)
By the way I don't know if anyone has mentioned, delayed pain is characteristic of PN. This is why learning pain management is helpful, ie pacing, otherwise when we get a good day we overdo it (just like I did yesterday) and then it is worse the next day. So we have a good day and then the next day is a step back..... but sometimes overdoing it can't be helped. And sometimes is worth it!
-
Hello ladies...just wondering how everyone is doing? I am on higher doses of nortrtoline and the pain is better than ot was at the moment. I have been able to do some more usual things..but still not sit down or drive etc...
is everyone having a good summer? Maryjane, has the wedding happened? Are you still planning to go to France? I'd love to know...
-
I'm also a member of the painful undercarriage clan. Mine's intermittent thank goodness, it's not a constant nuisance but when it's making itself known I don't have a minutes peace in the powder room.
Whose idea was this menopause thing anyway? Come on, own up!
-
hi nefersmum...its just horrible isn't it? mone is constant...except for lying on my front! I am still working on medication and physio etc....but it is very, very wearing...I hope your intermittant changes to 'gone'!
-
I hope so too. It'll make itself known for a few days then nothing. Bliss. I'm sorry you are have such a terrible time with it though. Is your medication helping? The worst of this sort of thing is how tiring and wearying it all is.
-
Hi maryjane..thanks for the facebook info..I am not sure how to become a member..I haven't had an invite..tech is not my strongpoint!!Would like to though..