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[Taz2]

Isn't it strange that some of us develop the horrible pelvic tightness, which I've just been reading about in this thread, and others, such as me, develop prolapses because the pelvic floor loosens too much! Shame we can't both have a teeny bit of what the other has!

I am so sorry to read of this though - it sounds absolutely life changing. I do hope that you get some relief soon.

Taz x 

[Maryjane]

In America, Europe a lot of people use " canibis oil ", and quite honestly when you look into it, it is probably less dangerous than the likes of Gabapentin and pregagablin, as they can really play with your mind.

Nerve blocks if they work, and that is a big if only offer temporary relief, nerve pain really is not understood by the medical profession it is so complicated, and the pelvic area in a women has the most of any nerves anywhere.

Botox is an option, but that also really scares me, has to be done by a top surgeon as if they get the wrong place you can become doubably incontinent.

.......and the saddest thing of all this, is the forced end of our sex lives as it is just to painful. But there ways.....however it is sad, after thirty years of marriage that something like this dictates everything about you, and really messes with your mind. Xx

[Hattie]

Wanderer - 'huge anxiety' and Maryjane - 'really messes with your mind'

Can only agree - don't know if it is the same for anyone else who has pain in a different area of the body.

I expected my body to heal this like any other area - guess it is trying to in its own way.

Also being hidden and a difficult area to talk about openly to others isn't easy.

I now have to make my excuses to others when i really have to -to look at me nothing is wrong. I've been asked 'is it a trapped nerve, i had something like that' - at which point i could launch into a speech about how no scan or anything else can easily detect it and if it were it is very difficult in the pelvis to correct - but i don't.

There needs to be more awareness - proper Centres for pelvic pain where every possibility is investigated and  all the specialisms gynaecology,pain management, urology,physio  etc are under one roof and understand each others expertise/limitations. when i win the lottery.........

[CLKD]

I was thinking about how menopause is/isn't served across the UK - why don't all the GPs with sensitive knowledgeable information about menopause open dedicated Clinics across the country  …… ……. they would be well valued!

They would unlikely to be out of work!

[Judith57]

Hi Hattie, I couldn't agree with you more. It is very difficult for me to explain to my 47 year old male boss what is wrong with me. In the early days when I was in a lot more pain than I am now and literally dragging myself into work one of the guys in IT who I am very friendly with asked me what was wrong,  I said to him 'imagine sitting on a red hot poker with your balls in a vice'.....he got the idea and didn't mention it again.  Funnily enough he said to me today that I was looking a lot better and was I cured, I pointed to the big foam donut and said 'what do you think?'

I had no idea that pelvic pain even existed earlier this year and, like you, fully expected my body to mend itself. The doctor that I see in Harley Street to check for thrush etc. has told me to just think about it as a stiff neck but in my pelvis  .

Even on days when I don't feel too bad I just don't feel like a normal person anymore. I am sure it is no accident that pudendal means 'shame' in Latin 

[Maryjane]

Hattie.....London has a pain department that is just for pelvic pain where all the disciplines work together, it comes under NHS England which means it does not come out of your local areas budget, anyone with this type of problem can be refereed there.

However I have seen " the main man " privately as has Judith 57, the NHS wait is up to a year, I was transferred to his NHS list in February still  have not had an appointment through. They are a pain clinic just for the pelvic pain , and get 10,00 referels a year.

They are just the most up to date " with the latest technology " etc , and the brains of the brains, however as one of his " team" said to me nerve pain is still not understood, and treating it is hard  but the main man there does travel around the world for the latest on pain management, and writes most papers on the subject.

But I do feel we have produced the next generation, and you are just cast aside, physio said to me that at any one time two thirds of women /men have some sort of pelvic pain.

[Maryjane]

Pressed to early......however that doesn't help someone living miles away in agony, and can only lie in the back of the car, but I don't think we will ever have clinics around the country, and what is quite scary is that a huge proportion of gynaecologists don't even know anything about the nerves in the pelvis, as they are not taught it, it is only the ones who advance know about the nerves, and nerve doctors, almost steer clear of the nerves in the pelvis, so we have to become our own health detectives and it is so un far as those with BUPA, or some savings get a slightly head start in the best there is to offer, however it doesn't mean a light bulb moment cure, but it does avoid unnecessary investigations, surgery and continuity of specialist. This problem has taken a lot of our savings, and I got my  diagnosis within a month of my symptoms, but will I ever fully recover.........that remains to be seen.......I told myself I would be better by Christmas, but that is getting ever closer.

[Maryjane]

Hattie, Judith 57 much prefer chatting on here than the other forum we can go on........really depressing, I have told myself to stay off one of them.xx

[Judith57]

Hi MJ, got home tonight to find a bill for £300.00 from the 'main man' as BUPA wouldn't pay for the anaesthetic for the nerve blocks or for the consultation prior to the procedure! BUPA also don't cover the cost of the Harley Street physio. You are completely right though, those of us who do have BUPA certainly do have a leg-up but we still have to to do a lot of our own investigation work to find the right consultants. I went completely down the wrong route to start with, the first urologist I saw said my bladder was normal after a cystoscopy, just a bit inflamed, and advised me to drink cranberry juice, he visibly flinched when I tried to explain about the excruciating pain I was getting in my clitoris! The first Gynae I saw said it was all menopause related VA and HRT would sort everything out. The vulva specialist I have since seen said I have no VA whatsoever!

I really dread to think what it must be like to have chronic pelvic pain and rely on your GP, mine wouldn't/couldn't diagnose anything beyond UTI and then thrush when I complained about the vaginal burning.

The support I have received from you and from this forum has helped me through some very dark times. It can be so isolating and helps to know there are others out there suffering with the same symptoms and treading the same path....

[Judith57]

Ha MJ yes  , like the strangely named HOPE. I am sorry but I am left feeling completely hopeless when I go on there....

[Maryjane]

   and I am not emotional, but I think all us Pelvic pain fellow sufferers need one.

[Judith57]

 

[CLKD]

  how about you getting together to write a book?  Getting the info out there ?  Would you be prepared to visit Dr Currie and talk about a video or similar that she can share with her colleagues?

[Maryjane]

Yes I would, to do anything to get more awareness, as it looks like for me that the " curse" of this is being passed onto the next generation, my youngest daughter who is pregnant with her first is suffering quite badly with SPD which is basically an unstable pelvic floor, and my mother whom is under the same man in London is completely bed ridden with this condition, and my eldest daughter has " issues"for two weeks of every month with her period, she live in NZ and there is no help out there, so when she comes home at Christmas she will go and see the specialists I have seen. My middle daughter, is slightly living in fear at the moment I think. So it is really important for me, to do all I can for the sake of my children, who will always be me babies.

[CLKD]

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