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[Bath mum]

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...

[Bath mum]

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...

[ancient runner]

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!

[Bath mum]

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...

[Maryjane]

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.😔

[Bath mum]

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!!!

[Maryjane]

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.😔

[Judith57]

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

[Bath mum]

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...

[Maryjane]

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.

[Judith57]

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!

[Bath mum]

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?

[Maryjane]

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.

[Bath mum]

Wow....yes, crikey....god this is all so massive isn't it....I am finding the thought of it all a bit overwhelming...

[Maryjane]

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.