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[Hurdity]

Hi Wanderer/MINNIE

So sorry to hear about your mum - and I am sure your grief will be contribnuting to how you feel, and make you less able to cope with the difficult menopausal and related symptoms you are experiencing.

Unless I've missed something, you don't mention whether you are taking progestogens and whether you have a womb and only mention Evorel 50? It is certainly possible to have a higher dose whatever you are on. If you don't have a womb then just ask for a higher dose patch. If you do (I presume you do becuase you mention periods) then using separate oestrogen patches (which come in doses up to 100 mcg) or gel, together with micronised progesterone (Utrogestan) will allow you to tweak the dose until you reach your sweet spot - ie the dose of oestrogen that gets rid of symptons and makes you feel positive about life.

If you were put on Evorel conti then the continuous progestogen could also give rise to some of the negative feelings you are experiencing as it has a depressing effect on the system - affecting some more than others.

You didn't mention who you saw, but considering some women pay for treatments such as yourself I think it's important to know who is sympathetic (as a concsultant) and who may not be quite so amenable.

Hope this helps and that you got on well with your GP!

Hurdity x

[Hattie]

Wanderer

You must have a good GP if she has prescribed Pregabalin initially as it is so expensive - i hope it begins to help with the pain.My GP wouldn't let me have it saying that it is just like Gabapentin but no doubt she was watching her budget.

If she refers you on to a pain clinic there are pain psychologists there who may be able to help you with coping strategies for the pain. 12 sessions on NHS. One of the hardest things for me has been accepting that this is not going to get much better. I am now 59.

I also had recent grief issues and another issue which was getting muddled up with the pain issue at sessions where i was often in tears - she offered me further help.I didn't accept it though as i was so tired by then - thought focusing on dealing with the pain would be better. Deep down all you really want is for the pain to go away so that you can refocus on your life but you have to learn to do it with some pain there as well.

Take care

Hattie

[Wanderer]

Good morning ladies. Hope that you are enjoying the rather soggy Bank Holiday! Thank you again for your lovely replies! Hattie and Maryjane, I would love you to let me know about this Physical Therapist, are you able to message me, it used to be you had to have 100 postings before you could? Meno Lesley, great to hear from my "postmenopause pal"!!

Don't worry about seeing a consultant in London, mine was here in Dorset, and just feel so fed up that they are all so flippant, if it was a acute clinical condition, they would soon sit up. They have no idea about the mental health effect it has. I have absolutely no confidence any more, as I am terrified that I will make a mistake at work, as I can't concentrate, everything is through a haze of "weirdness"!

I think I was predisposed to the pelvic floor issue, as had pain in my early stages of pregnancy, everything stretching, and during the births, found it difficult at the last stage, and had to have episiotomies with both.

Yesterday, all the genital area felt "tingly", and I had constant spasms in the pelvic area, really weird, like contractions, and it made my head even weirder! Then I get the pelvic ache, and my left buttock aches like hell, and more worryingly, I feel a "click" there when I walk!
 
My digestion is awful, feel a strange buzzing in my stomach, and grumbling after every meal. I have tried every recipe known to help IBS, bought every herbal product, to avoid chemicals, and nothing really works!

I do have a womb, and the Evorel is oestrogen only, as the MK said that the progesterone can cause nasty side effects. I have been on it 2 months, is that too early to get an improvement do you think?

We have just moved, and the neighbours are lovely, all about our age, and whenever I speak to the women, I gab on about menopause, they all look at me like I am an alien, declaring that they had no problems, great!! Thank God for you ladies!

When I saw the MK last, he did say that he may be able to surgically release the pelvic floor, have any of you heard of this?

Finally, have any of you found that you cannot work because of this misery, or is it just me? Please let me know!

Love Wanderer xxx

[Taz2]

Wanderer - if you have a womb then you have to have progesterone - nasty side effects or not. To have oestrogen only puts you at risk of endometrial cancer. Your post has worried me although I haven't read the whole thread so I may have misconstrued.

Taz x

[Rowan]

From your description it sounds like you have an unstable sacro iliac joint (especially clicking)) it usually effects one side.

I would try an osteopath or chiropractic before consenting to surgery, or try home exercises.

http://www.youtube.com/watch?v=BFXTmtXIVGw

Mine has finally gone thank goodness.

Your weird head is probably due to anxiety and panic about your symptoms.

Can't comment on your hormone strategy, but from what you have said using that amount of estrogen without progesterone is not a good idea

[Limpy]

it used to be you had to have 100 postings before you could?

Think it's 10 postings now

[Hattie]

Hi Wanderer

I will pm you the physio in Southampton in a minute as i can send pms on here now.

i have been to her - she will assess your pelvic floor and does do internal pressure point release.

Maryjane is going to a physio in London trained by this lady.

She suggested an xray for me which i had done through GP and local hospital and there was a comment on state of sacro - iliac joint on the letter i had back.

You must be very worried about what is happening to you it is no wonder your digestion is upset.

I lost a part time job because i can no longer run around like i used to.
I will get on and pm you now
Hattie

[Kathleen]

Hello Wanderer.

I wanted to add that I can relate to so much of what you say. I began HRT about eighteen months ago because of strange stomach issues. The sensation I had was also a type of buzzing but with a strong kind of tension as well. There were times when I wanted to take a knife and cut it out, weird, I know. After two weeks on HRT the sensation went. Now I use patches but I still have some quivery, jittery feelings so I'm guessing anxiety and menopause are still playing their part.

I have IBS, as so many of us do, but in 2010 I was diagnosed with Ulcerative Colitis which is an inflammatory bowel condition, so that complicates things. I've recently started using probiotics to help with gut issues and I will report back on any success.

I don't go out to work at the moment and I take my hat off those those women who do, I don't know how they manage it!

Take care and wishing you well.

K.

[Maryjane]

My physio in London qualified at the same time as the one in Southampton, but was not trained by her. I have sent you a PM, as I am getting better about 80% so, the less that is done down there the better goodness knows what surgery the consultant is on about.

Myself and another lady on here see all the same consultants and physio, and have almost identical problems, she was told that we have managed to source the consultants on the cutting edge of technology with this Pelvic Pain problem, that it is far more common than people realise, in men, children and all ages in between.

Hyper -mobile and people with allergies are more prone, IBS etc.

[Judith57]

Hi Minnie, I am suffering greatly with my pelvic floor and bladder at the moment and am finding it increasingly difficult to go to work. I have a job that I love and have been there for over 23 years but I am finding it a huge struggle to go into work each day while managing this 'condition'. One of the main problems I have is not knowing how I am going to be from one day to the next but I am never free from some sort of pain or discomfort. I actually resigned from my job two weeks ago but my boss wouldn't accept my resignation and I now have a sit/stand desk, I just press a button and the desk moves up to allow me to work standing up. I also sit on an ugly foam donut cushion, it has been my life-line and has enabled me to carry on going to work. However, I can now no longer sit on the train to and from work so that is contributing to my distress. I am seriously wondering how long I can continue like this but am still hoping for some improvement in my condition.

This nightmare began with me after I developed a UTI after sex in February, I took myself straight off to see my GP and was given a three day course of anti-biotics. By the end of the week I was no better and a few days later the burning started, hot poker, razor blades, you name it. After two further courses of anti-biotics I had a cystoscopy and was told my bladder was normal, the burning and constant need to pee carried on relentlessly. The pain was so bad at that time that I couldn't go into work which caused a huge amount of distress as it was our financial year-end and I am an accountant.

I had further tests, colonoscopy, trans-vaginal scans, CT scan, MRI neurography. The pain in my vagina felt as if somebody had stubbed a cigarette out in there, the urologist assured me that my urine sample was clear and packed me off to a gynaecologist. The gynaecologist said 'don't worry all menopause related' and prescribed HRT and Vagifem. Despite doing the two week loading the burning was just as bad so the gynaecologist advised me to carry on with the loading for a further week. The pain continued, I felt as though I was on fire 'down below'. I actually stopped using the Vagifem about two months ago but still take the HRT.

From doing some research on this site, I then wondered if I might have pudendal neuralgia, I went to see a pain management specialist who agreed that I did have left-sided pudendal neuralgia, it is very difficult to diagnose so a nerve block is often used as a diagnostic tool. I had a nerve block injection at the end of May and it did help with the burning but didn't help with the urinary frequency or pelvic floor spasms. He also prescribed amitriptyline.

Around this time, I started seeing a pelvic floor physio in Harley Street and she recommended that I see a specialist URO/Gynae who had helped her when she had chronic pelvic pain. I went to see him and he scanned my bladder and said it was twice as thick as it should be. He performed a cystoscopy and biopsy a few days later and said that I had an infection that had gone through my bladder lining and into my bladder wall and my bladder was very inflamed. I am also hyper-mobile and histamine intolerant and these bladder problems go hand in hand with these conditions apparently. I took more anti-biotics for six weeks and went back to see him three weeks ago but there was no improvement so I am now on more anti-biotics for four weeks.

Also, the physiotherapist that I saw on the recommendation of the pain management specialist advised me to try and wean myself off my cushion at work. Unfortunately, I tried to do it quicker than she suggested and now have irritated my posterior cutaneous nerve and cluneal nerve as well. The pain management specialist has since repeated the nerve block injections but this time in both sides to try and block the pudendal nerves and also the posterior cutaneous and cluneal nerves. These injections have had limited success but are now starting to wear off and, as well as the burning pain, I also have a fizzing across my buttocks which is like sitting on an electric fence. I now find it impossible to drive or sit in a car for any length of time.

I had to take myself off to the local STD clinic about a month ago as I had developed such bad thrush, not surprising after all the AB's. About two weeks ago I went to see  a vulval skin specialist in Harley Street as I wanted to make sure that there was no sinister reason for the burning, she said that I have absolutely no sign of any vaginal atrophy, in fact she said I was like a 'spring chicken' down there. She also confirmed that all my vaginal swabs were clear and the flora and ph balance were spot on. She was very impressed by the consultants I was seeing and said that they were all at the top of their field and that this is all reversible. I wish I had as much faith as her!

I am now pinning all my hopes on the pelvic physio that I am seeing in Harley Street, the same one as another lady on this site, and the URO/Gynae who has identified the bladder problem. The pain management specialist is of the opinion that I have IC, now re-named painful bladder syndrome, and that we have a chicken and egg situation going on. He wonders whether the bladder problem has been in the background for a while and there has been damage to the pudendal nerve through change in posture or whether pudendal nerve irritation has impacted on the bladder.

Either way, it has had a serious impact on my quality of life and I hope something can be done about it soon. I also have CBT to teach me how to live with the pain but I just want it to go!

My partner drove me to see my mother in her nursing home yesterday, she is very frail now with Parkinson's Disease, and I feel awful as I should be able to help her more but it is impossible for me to drive very far at the moment and the round trip yesterday of 140 miles left me burning and fizzing even as a passenger!

The thing is, I don't really look as if I am unwell and it is very difficult for me to describe to my boss just what exactly is going on.....

Not sure if you will still be awake after this post but send me a pm if you want details of any of the specialists I have seen...

[meno lesley]

Hi

Have pm you, do hope you get it ok x

[Judith57]

Did you send a PM to me Lesley as I haven't received anything.....

[meno lesley]

Sorry sent it to Wanderer.

Have just read your post and really feel for you.  Can totally relate to what you said about looking ok but feeling awful. It is horrible when there is no light at the end of the tunnel. Do you find that the amitriptyline helps you at all? I take it for sleep problems which does help sometimes. I'm going to see meno specialist in October in Harley Street as a last ditch attempt to try to sort myself out.

Do hope the pelvic physio you are going to see helps you.

Lesley x

[Hattie]

Judith 57

Huge, huge     that is an awful lot of pain.

Hattie X

[Judith57]

Thank you Lesley and Hattie, amitriptyline helps me sleep but doesn't really help with the pain. I am going to increase my dose from 10mg to 20mg though,

Judith