New Member Here

Hello everyone,

Finally after about 15 years of suffering from this condition I have found a support forum.

As far as my story goes when I suffered the symptoms of the condition it didn't even have a name and the doctors knew nothing about it, hence I had years and years of tests, swabs, you name it, I went round thinking I must have the most horrendous infection.

I have to say for much of those years it was something that I put up with and learned to live with because nobody knew about it back then but not now, after a few bad attacks I decided enough was enough and having read the book by Howard I Glazier I realized that I need to be relentless in my quest for finding relief from the acute, burning and raw pain I feel and I also had the realization that I was not alone. I am having a particularly bad attack at the moment and feel drugged up to the eyeballs and a bit depressed as the pain is relentless which is why it's nice to actually write it down here.

I have since had a skin biopsy which was the most painful thing I have been through and completely knocked me off my feet for a wee quite literally but I needed to do that for me to be referred to a specialist.

I have been on various drugs and at the moment have just started a course of Pregabalin (75mg), strangely enough this has coincided with this very bad attack and I ended up at the doctors in tears because sometimes I just don't feel I can function day to day with the pain and now the drugs I'm taking. The doctor has prescribed me a mixture of Ibuprofen and Cocodamal to try and ease the pain, she is also going to talk to my specialist about a pain clinic and pelvic exercise, I may even increase the dose of Pregabalin.

So I continue on my road to try and find some relief from this condition, I just want to add that most of the time I just feel a mild burning but this attack has made me remember how bad this condition can get at times, I guess the other frustrating thing is that I don't know what has caused it.

Anyway just wanted to tell you a bit about my story and I'm looking forward having a look around the site getting and hopefully giving some helpful advise.

SB

Hi and welcome, you're in good company here! I notice you don't mention having your pelvic floor checked out so that's a good thing to do next, in my opinion it's something every woman with V should have done. High resting tones and clenching the muscles through the day are things we V sufferers often find.

I'm on Pregabalin and I know a few others here are too, I'm finding it helps a bit for a while then stops working and I need to up the dose then it does the same thing again and stops after a period of time so I'm not convinced it's going to be the answer for me. I'm also on Ami which didn't help much at all and I stopped the dose increases at 50mg because I was sure it would be pointless to keep adding more. I have seen a few women online say Pregabalin made their V worse while they were on it but I don't know why so if it doesn't calm down it might be an idea to swap it for something else.

Anyway, have a look around and feel free to chat to us about anything.

Thanks Sarah, so nice to know there is somewhere to come for support and I actually feel much better today

Is Pregab Lyrica? If so Lyrica made me flare like crazy. (bladder and v) the week after I got off it pain shot down a few pegs, I now take no medication for v, I hated that drugged feeling and it was doing nothing for me for the pain.

Claire

Hi Aussie,

Funny you should mention that because my pain has been really bad since I have been on Pregablin, wonder if I should stop taking it or at least maybe call the specialist on Monday

I weaned off over a week. My Neurologist said that Lyrica would make my bladder symptoms worse but eveyone eles said the opposite. I wish I had listened to him in the first place....

Hi,

I am waiting for my specialist to call me back today (still waiting)...I need to talk to her about this and also if she can put me forward for the pain clinic and also the pelvic floor, I have just been thinking that in all this time I have never been referred for any of these.

My pain is slightly better today, I went and bought a water spray for after I have gone to the loo which is lovely, takes the burning off for a while, I also took advise from another poster who said to imagine fresh blood cleansing the nerve endings (sorry can't remember who it was) but it actually does ease things a little.

I am also very nervous as I am going on a date on Saturday for the first time in years, my brain keeps telling me that I must be an idiot for even contemplating this with all my issues but at the same time I don't want to stop living my life, I guess all these things go through your mind which doesn't help if I'm honest.

Glad to hear the water bottle is helping, just be careful not to overwash the area though, I found rinsing after every pee was too much and made me even more sore so I just rinse after a few now.

As for the date, it's only the first one so no reason to wonder where it's heading, some of the girls on here have started new relationships despite having V but I have to admit I'd be like you and wondering if it was worth the effort. However saying that I don't think all men would run a mile about it (unlike my ex) so it's probably worth at least going on the one date, let us know how you get on!

Update

Well there is good news and bad news.

The bad news is my date cancelled on me which was a kind of a relief in a way and I noticed that my pain did get better once it was cancelled, maybe there is something in that.

The good news is I spoke to my specialist who has now written to me and has referred me to the pelvic pain clinic and also for pelvic floor physiotherapy, I spoke to her about my concerns about the Pregabalin but she advised that I need to be on it for at least 6 months, after that she has recommended SSRI Fluoxetine, has anyone tried this and has it improved things.

I actually feel quite positive now that things are finally getting sorted

You do sound like a clencher if the anxiety about the date was making matters worse! Still at least it's one less thing to have to worry about right now. Good luck with your appointments and let us know how you get on.