Hello, just introducing myself

Hi, I am new here. I live in the U.K. but was born and raised in the U.S (married to a Brit). I have had v.vestibulitis for around 8 yrs now (ugh). I only have pain with penetration. I had a normal (healthy)sex life up until then. I am on amitriptyline and taking calcium citrate. I think the calcium has helped somewhat and am considering coming off of the amitriptyline to see how that feels without it. I have had very little helpful treatment from U.K. doctors and am beyond frustrated. I had yeast infections off and on and was on the pill for many years (no longer), I am curious to find out more about what people think these things have to do with this problem. I just had an appointment with my gp today because my periods have gotten really bad (one week of cramps/spotting, followed by a real period); this has happened since I came off the pill due to having a blood clot in my leg last year. She wants me to consider the Mirena coil but I am scared it will make things worse, but am sick of the bad periods. Anyway that's my glamorous tale, hope to learn some helpful information here thank you!

Hi Steff and welcome to the forum. I know lots of ladies here have had yeast infections, myself included, but I'm not really sure how they're connected as lots of women without V have lots of yeast infections too. As for the Mirena, I'd be very careful about that, my friend had one fitted and it gave her burning mouth syndrome so it may well make the V worse. Anyway, have a look around and ask anything you want to, if we can help we do.

Hi and Welcome to the forum

I dont have a lot of faith in the uk doctors. Only met one that really understood.

I ended up researching the condition myself asking for the meds I wanted and paying for a biofeedback machine myself to do home treatment from www.vulvodynia.com - have had a break in treatment and a bad flare up recently so will not know how well im doing for a few more months yet

Keep researching and reading up on things, you will find the right combination of treatments even if you have to pester the doctors for them!

Hi there, just wanted to comment on the mirena coil idea. I'm not going to advise for or against, but will tell you about my experience. My vulval pain came on very gradually over a number of years, involving UTI symptoms that did not always test positive for infection. I also had lots of uncomfortable brown spotting for up to a week before my period started. Then my periods became so heavy that I started to 'flood' in public. My GP suggested a mirena coil and referred me to gynea. At that point I did not know that I had vestibulodynia, as the pain was mainly manageable and I thought it was just perimenopause. Having the coil fitted was excruciatingly painful and the pain remained quite severe for a couple of weeks afterwards. It was after this that sex became completely impossible and the pain seemed worse than ever. I also spotted for 6 months, but no more heavy periods. When I had my check up, I mentioned the pain and the gynea said she did not think the mirena was the cause. I was too scared to have it removed, as I thought it might make the pain worse still. Anyway, I eventually forgot about the coil and embarked on various other treatments with variable success. I remembered the mirena a few months ago, when I realised that my periods have stopped so I no longer needed it. I had it removed in May and the removal was not too painful. However, with regard to my vulval pain, it has made no difference whatsoever. So I don't think the coil was directly connected to the v pain. It was just that a procedure that is painful for any woman was particularly painful for me. Good luck making your decision. If you do decide to get a mirena, I would ask for some anaesthetic / strong painkillers to help to deal having it fitted.

I forgot to add that I also take timed calcium citrate and am on the low oxalate diet. Both help me a lot, although the low oxalate diet has really been the key for me. I've kept a journal of my treatments and tried to only add or delete one at a time (wait a month or so), so I could see really see the effects of the treatment. For example, looking back at my journal helped me realize that eating tomatoes was causing me to flare-up 2-3 days later (as did eating any high acid or high oxalate food). Of course I was in a continuous flare for the first few years; it was only after I started getting better on the diet that I could tell that something made me flare-up (severe pain, burning, itching).
Heidi
http://lowoxalatefamily.wordpress.com