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[Wanderer]

Good morning. Oh Judith57, what a lot of nastiness you have had to go through, unbelievable that all this is hidden away from common knowledge, have any of us ever heard of any of this menopause misery before this site? I agree so much about making people understand when you look so well, but are so miserable inside, it just adds to lack of confidence, feeling so alienated. I have had a summer of sunshine here in Dorset, everyone says I look so healthy, but inside I feel so crap!

My husband says I have to work, as although semi-retired, our savings need to be budgeted out, but I live in constant fear of work, always feel anxious and wobbly, can't concentrate, and ache from the pelvis downwards, with wobbly legs all the time, and that's without the weird digestion! I have just gone back to a job I have done before, as I thought it would help, but all that has happened is that they expect me top know everything, and now I feel a prat when I can't remember, my stomach tenses, and anxiety goes through me like a lightning bolt! The AD the GP gave me have eased the tension in my head, but hasn't got rid of the constant knot of anxiety in my pelvis. My husband says he will get a full time job instead, but then I feel bad as he doesn't want to! I just don't know what to do!

I am seeing the MK consultant again next month, Tim Hillard at the BMI Hospital in Poole, in case you want to know, he knows that I need progesterone, but says that I don't need it until about 6-12 months in.

What a miserable time, I hate my life!

Wanderer xxxx

[Wanderer]

Meno Lesley, I didn't get your PM! It is working ok, as I have 2 others, which are lovely! Can you try again?

xxx

[Maryjane]

Hi Wanderer, I work but from home as I am self employed and I can manage my day around my pelvic floor my job is standing also, there is no way I could do a sitting job.

Yes the anxiety is awful, it comes over me in waves to, I go for a dog walk which helps. The problem with working on your own though, is lack of socialising but to be honest I am not the best of company at the moment anyway.

I don't know what you can do about the job situation, we take our health so for granted, I was a very different person this time last year.

I am 48 , and I still am amazed that our pelvic floors can just give up on us, and cause all these problems, I expected hips, back, knees etc but not these problems. I think we are predisposed to it and it will happen whatever we do.

The pregagablin could make your anxiety worse for a while,as some people really can't tolerate the side effects from it, it is normally used for epilepsy, but is found to work with nerve pain. The other ones are, amitriptyline, noratriptyline, duloxetine, gabapentin possibly a couple I have forgotten.

The fizzing I think you mentioned when you sit down, is possibly your piriformis muscle/sciatic nerve. I have this and have to sit in perfect posture , no slouching at all.

[Judith57]

Minnie, I hate my life too, my freedom has been completely taken away by this crap. I used to be so carefree, travelling here, there and everywhere. Now I sometimes spend nearly all day on the sofa. I have just got home from work, I made myself sit on the train to work this morning as I figure the longer I avoid it, the worse it will become. It was not comfortable but I managed it. This evening I sat until the station before mine but then I had to stand for the last bit. I used to go to restaurants, the theatre, cinema, planes, drive all over Europe, now I can't even sit on a train for more than twenty minutes. I mourn my old life!

The whole of my nervous system now seems centred in my pelvis. I went to see a Jools Holland concert on Saturday evening, with my special cushion, and my whole pelvic floor was contracting in time to the vibrations from the music, my electric toothbrush has the same effect.

I was really anxious about work this morning as I have been off for the last five days but it wasn't as bad as I thought it would be. I have developed some coping strategies to help me now.

Judith x x

[Wanderer]

Thanks so much for your replies again. I have had some lovely PMs, and I did get yours Meno Lesley, big hug from me, why are we still having all this rubbish after 3 years, when others seem to be cured immediately!!!

Judith57, didn't read the small print about Pregabalin, but will now, not really sure it is doing anything anyway! Thank you for warning me! I am so desperate for at least 24 hours of relief, that I just take anything offered, although I am so sceptical that anyone out there can help! A couple of the ladies have signposted me to a pelvic therapist in London, so I will try again!

Feel as though I have lost 3 years of my life, and been absorbed in my self centered misery, want to be a caring, relaxed person again!

Night night.

xxx

[Hattie]

The pregabalin will take a couple of weeks to take effect and you may need to titrate higher to get some pain relief. Your GP would advise - it is also a balancing act with not getting too constipated.
Couldn't agree more about self-centred misery where you don't want to be.

Hattie

[Hattie]

Just came on forum today to post a couple of things that may help anyone.
The physio lady i saw in Southampton lent me this book

Teach Us To Sit Still by Tim Parks

he is a novelist whose books about Italy i had already read so i was up for reading this.
Although he has a male pudendal/pelvic nerve problem some of it is applicable - the first part is written in his usual style and some bits made me laugh out loud (something i'd not done in a while) - i could relate to all the feelings he expresses about pelvic pain. His sedentary stressful job seemed to be a factor.

She also recommended

Mindfulness for Pain Relief CD by Jon Kabat Zin


Hattie

[CLKD]

   ............    you are going through some awful times.  Glad to see you posted Judith, I was about to send you a PM alert about this thread 

As for feeling guilty about your Mum not moaning - she was obviously dealing with a different situation Wanderer and probably knew that she wouldn't have to endure for very long.  You have a difficult condition, stop thinking about those 'worse off' because they are not in your situation.  Take care of YOU!

Has anyone thought to sit on a blow up 'ring', like the ones kids use for swimming - so that the vaginal area is not pressing onto a cushion?

[Maryjane]

Hi. Just thinking out aloud is it worth us/ are we allowed to have a " how do you cope with pelvic pain " thread. There are a lot of " us " out there, I would have struggled without chatting away to Judith 57 ( believe it or not we have laughed sometimes, about our situation).

CLKD regards the rings.......apparently the NHS are stopping using them as they are causing other problems, regards weight distribution etc. the one that is recommended is called " airflow", ladies who have just had a baby can hire them through the NCT, don't know if we could, but if not it is an eye watering £165.00, but I gather it has given a lot of people with this horrid problem there life back to a better quality.

I have so far managed to avoid using a cushion, but I don't need to sit at a desk, and when I do sit and it starts to feel uncomfortable then I get up.

Wanderer my stomach was also solid as I had been horse riding for ten years, five times a week, for three hours a time, but I have managed to get a "floppy " tummy. Physio said horse riding is really bad for the pelvic floor, bit late now.

Also wanderer these " nerve " drugs can take up to three months to work. I only take 15mg of ami, which helps also lift my mood and helps me to sleep.

The stabbing, shooting pains you have wanderer and the intense ache is what I had, and still do sometimes, the pelvic floor is trying to relax, it's no different to having cramp in your leg. I get a lot of relief from small heat pads, from amazon they are by dreamland, I have two one that I put on my lower back buttocks, and the other on my pelvic area, I have them on the hottest setting and they stay on for three hours, they are as hot as a hot water bottle, and you can feel the muscles/nerves relaxing. When I was at my worst, they where indispensable. Also when I was bad, and had to do my work, I ised a TENS machine on the massage setting, this was a very good distraction, I would have it on for up to ten hours aday.

[CLKD]

I would buy a ring regardless - when I injured my coccyx at age 12 I had to sit on a cushion or ring for 3 months.  Even now I get a twinge occasionally …….. there are plenty of firms that sell cushion inserts or blocks of foam so we could make our own ………… 

[Hattie]

Maryjane

You could pm Emma - moderator - on this forum to ask her to make 'How to cope with pelvic pain'  a sticky thread such as others are on here because i agree with you it is important to have a thread like this.

I will back you and pm Emma as well if you would like me to.

Such a sticky thread may also alert someone else reading that thread to the possibility of the cause of their pelvic pain that may have gone undiagnosed.

Hattie

[Hattie]

I would buy a ring regardless - when I injured my coccyx at age 12 I had to sit on a cushion or ring for 3 months.  Even now I get a twinge occasionally …….. there are plenty of firms that sell cushion inserts or blocks of foam so we could make our own ………… 

CLKD With the greatest of respect and i don't mean this unkindly in any way - you are not dealing here with something that heals within 3months.

My husband has however made me two 'rectangles' out of B&Q hard foam garden kneelers which i can put under each buttock to lift the vaginal area off a hard chair - but this is what works for me it won't work for everyone who has worse pelvic problems.

Hattie

[Wanderer]

Good afternoon ladies.

Thank you Hattie and Maryjane for your emails! I do agree with the other postings, that pelvic floor pain is a big issue, and causes huge anxiety, you Google it, and the first thing that comes up is ovarian cancer! Yes, all unexplained pain should be investigated, but, if like me, all the tests are normal, it should not be ignored, as like all pain, it eventually wears away your cognitive thought process! Mine is caused by really, really bad VA, that has caused tension, and the tension has caused pain. I think SuzyQ once likened it to teeth gnawing away at your pelvis! This is also what can cause IBS, as a lot of women with IBS are found to have a dysfunctional pelvis. Not the only cause of IBS in menopause, of course, but the tension doesn't help the colon to process food easily.

I really don't think HRT helps with problem at all, it could help anxiety, which in turn will help us to relax a little, but we need to learn to keep it relaxed, something I have trouble doing, so I am seeking help! Won't be the NHS, for sure! Mine is both sitting and standing up! Sitting makes everything "nervy" and standing is a deep ache everywhere, so not sure a cushion would help!

I do think a thread would give some relief to members worried about aches and pains in the pelvis.

Wanderer. xxx

[Maryjane]

Just nipping out to CBT, never hurd of it before this, it helps to off load. Regards your aching Wanderer look up " venous veins " in the pelvis, they are basically varicose veins in the womb, I am absolutely riddled with them, and apparently mine are tortuous to, now a big proportion of ladies who have had children and are our age have them, so have no problems others have this awful aching etc.

As I said I am quite a lot better, and the physio does something called myofacial release, which is all to do with blood flow of that area, exercises at home also include massaging the colon bowel area gentley, IBS and this quite often go hand in hand. Years of IBS irritate the pelvic area.

......and no the NHS will do nothing......our best hope is physio.......diet change regards the IBS......and I am hoping the uro/gyna and vulva/dermo expert I am under........the right nerve pills may help, but that is trial and error to which one will suit you.
Xx

[Judith57]

Hi all you fellow pelvic pain sufferers,  I've just come home from work today and it has been a hellish day. My vagina, that used to feel like it was sucking on a Fox's Glacier Mint (Maryjane and I had a giggle about that in the early days), now feels like a smouldering ashtray  . I think a lot of the problem is now coming from my piriformis muscle/sciatic nerve as I have burning through my buttocks into my groin and at the back of my legs underneath my buttocks. I cannot even get any relief from the big foam donut cushion. At home I have a cushion that I bought from Amazon that was recommended on the IC forum. I managed to sit on the train home but had to put a hand under my right buttock so that it wasn't touching the seat. This is such misery!

The Harley Street physio that Maryjane and I both see is on holiday at the moment but I have an appointment next Tuesday. Just been reading an article in The Times today about people using cannabis to relieve nerve pain, might be tempted to go down that route myself if this continues much longer

This is such a horrid area to 'break' as there are so many nerves down there and nerve pain is just THE PITS!