My story - interested in your thoughts, havent been 'officially' diagnosed & very frustrated & depressed...

I thought it would be helpful to some (as it has been for me) to read about what has lead up to this point and my experience so far - I also hope to hear from you guys your thoughts and any helpful advice (and sorry -yes its long but hopefully you will still read it!)

My history - I am 37 years old, have had 3 children (from 2-12yrs old) and have had the same sexual partner for the last 12 years (my husband). I have suffered recurring thrush since age 17-18 approx , I can recall times where I would get thrush every month and then other times I would go 6mths without symptoms. Since they changed the treatment to being available over the counter (and actually before that -as Docs would simply ask if I had had it before and not check just give the script) I have self diagnosed myself and admit there were times I wondered if it was correct diagnoses but seemed to work so continued to treat myself the same way. Often when it was mild my thrush was just an itch that only required topical treatment of cream and would right itself within a few days - most often premenstrual.

Late 2010, about a year after my 3rd child, I noticed a difference in smell and discharge and was diagnosed with VB and treated with success. I also noticed I was much drier and that sex would sometimes cause discomfort and I started to use lubrication but noticed that the KY gel would sting or irritate and not be particularly helpful. Eventually I actually started to apply vaseline to the vulva area in the morn after my shower and before sex if I knew that was where I was headed this did seem to provide some relief at first.

In July 2011 I had what I thought was the beginning of thrush, some minor itching that seemed to progress to full thrush, I was red & sore as well but a new symptom occurred which made me question if this was indeed thrush - a very strong burning sensation to the point where it felt like the right thing to do to sit on an icepack - which i did at more than one point as it did seem to provide some short term relief.
I began to fear that I was suffering from some kind of STD but this made no sense as I hadnt been in a position of risk (unless I wasnt aware of it - ie my husband not being faithful but I didnt believe this was a prob). I continually looked at my vulva area for a sign or sores or anything I could attribute this pain to but the most I observed was some redness and some original swelling which subsided (probably when i stopped using the topical thrush treatment). I completely over analysed the area fretting about every tiny bump or anything that I could convince myself isnt normal. These new symptoms occurred over a weekend so I didnt get to the doctor until it had been going on for days. The doctor found nothing of interest, tested for anything that may cause the itching and all tests came back negative including thrush. The symptoms subsided after 1 -2weeks and the doctor put it down to dryness and a vagina that was not PH balanced, she suggested using a cream that would assist in getting the vagina back to ts normal PH level (although I dont believe the PH level was ever tested) and moisturising the area. I had noticed the dryness so it made reasonable sense but I did find it odd that it would flare up that way for seemingly no reason (however I now believe it happened after sex and that was the trigger).

I did go ahead and use Replense (internal moisturiser) for a time, I thought it may be working but I slacked off and stopped using it when my dry symptoms weren't there, it was a hassle to try and remember to insert it every 3 days and I am not a big fan of the inserting part at all! I continued with the vaseline and used as lube which was definetely better than the KY for me.

I did experience once again the beginning of what i thought may be thrush, went immediately to the Doc who believed she saw curds and diagnosed as thrush, she was adamant I should discontinue the pill (birthcontrol) as she believed it was making me more susceptible to thrush and general unhealthy vaginal conditions that were causing the irritation and as long as I continued to take the pill I would need to put up with thrush recurring every month and should preempt it or take oral and topical treatment at its first signs. I treated for thrush this time and as I was premenstrual by the time my periord had come and gone the symptoms seemed to have subsided, I cant recall if I had the burning that time around but I thought she must be right about the thrush. I did realise later that I had used some replense when symptoms had started and this causes a weird curd like discharge that she would have seen, later I discovered that the test she had done for thrush was negative - I had never bothered to check at the time.

Then late December 2011 the symptoms (itch at first) began again (after receiving oral sex), I treated for thrush as the doctor had advised - orally and internally. It seemd to work at first, when it was cleared I had sex and the next day it was back again, itching and soreness. I thought I should be persistant and treated for thrush again orally and then when it persisted I did the longest course of cream available - this was a bit stingy too and didn't really provide much relief, symptoms seemed to subside then they would flare back up again. Then I would have the burning sensation that made me want to put ice on the area and I just knew it wasnt thrush - maybe it was to begin with. Again there was nothing I could really see that indicated anything - I had some red spots and it was red on the main point of pain - although when I saw the doctor again - after over 3 weeks of the symptoms to varying degree - she saw noting overly unusual. At this point though she did a culture for herpes 1 & 2 and also a blood test for type specific herpes.

I was completely devasted - I was sure this was what it was it seemed to all fit except the fact I had never seen any sores/blisters but of course many people have varying degrees of symptoms. She explained I could have had this for years and it be dormant and I started to think about all the times I had treated myself for thrush - had it been herpes? I waited over the weekend for the results with my husband being quite supportive but he never really believed that that was what it was. On the Monday I finally spoke to the doctor who told me everything was negative, I was so happy but also shocked as I had convinced myself of the result being positive. I had been using a 1% cortisone cream on the area while waiting which hadnt done much either way but I did feel the symptoms were perhaps already subsiding on their own, she advised to continue to use this while symptoms were there. It cleared up not too long after this month long episode but I still felt a low level irritation - like a general dryness. I had my period not too long after that (I had skipped a period during this episode as I thought the thrush would be clear just as I was due and I didnt want to have another week of no sex ) I then had sex for the first time about a week ago, a few days after my period had finished.

I could tell I probably wasnt lubricated quite enough even though I had used the vaseline out of fear of another episode (I was catching on that they would start after sexual activity and I thought just due to dryness) but there was no pain during sex (I dont generally have pain during sex but I also havent tried to have sex while I have symptoms).

The next day however I was sore - I hoped that it was just due to dryness but after about a day the burning sensation began, the icepack was out and I still have the symptoms now which seem to vary between aching soreness, a dry irritated feeling, burning, a small amount of itching (nothing I would attribute to thrush as its certainly not the main symptom this time around) and a 'pinched feeling' like I had been wearing a too tight g-string - this symptom seems to be hanging around over the last day or 2 and the burning seemed to flare up after the doctor examined me.

I can pinpoint the spot that bothers me most but the symptoms/pain seem to move around some at different times the worst and most persistant is on LHS posterior fourchette, other areas are the labia minora and majora.

So I was back at the doctors yesterday she still believes the pill is the cause of the condition and urges me to go off it while I wait to get into see Dr Ross Pagano, who she has referred me to. The doctor examined me and said she could see - if she looked very closely and stretched the skin - a tiny amount of abbraided skin where I said it was most sore - however she also said if she had examined me and I hadnt said I was sore there she would have said I looked completely normal in everyway.

I think the first big flare up last July was just after I started taking the pill. So it could make sense that it is a cause. She believes the pill (Dianne) is causing the vulva tissue to be more sensitive and weak making it vulnerable to any friction (sex etc.) or hyper sensitive to thrush. The only reason I haven't stopped taking it sooner is it has helped with issues I had pre-pill - long heavy periods, bleeding during sex just before a period and sometimes mid cycle, bad skin etc. Now I am deciding whether to stop it as I have a trip away with my husband coming up in April that I dont want o have my period for - it will be the first time we have been away alone together for about 5 years - but catch 22 - I also dont want to have these symptoms!

Im trying to work out if strategically stop the pill to get my period at a certain time I can make sure I'm not due again when we are away.

I also called to book in with Ross Pagano this morning to find August is his first avail appointment - there were tears after that.

I know - many of you have suffered much worse than me and for many months or years at a time, I think this is partly why I am so upset and depressed, that this is just the beginning of what may be a very difficult time. Already I am very depressed and seem to be obsessing over this to the point I am distracted from everyday things like work and kids to be searching the internet for hours or simply wanting to curl up and do nothing on the couch or in bed as the constant pain (which is fairly mild but just consistently there and strong enough to be constantly aware of) continually distracts me. I have fears for my relationship, going from having sex every second day (on average) to none for weeks (maybe longer) at a time is sure to put a strain on our relationship. I am frustrated at not being able to just have sex when I want to and have that intimacy with my husband that I am used to. And I cannot stand not having a solotuion! OK - that is my whinge, like I said I know I don't have it as bad as others I just needed to get that off my chest!

I hope someone can relate and give me some advice or helpful comment while I wait for months to be officially diagnosed. I wake up every morning just hoping that it is gone!

thanks for your time to read this x

Thanks so much for sharing your story. I was beginning to think that I was the only one that was suffering from this pain, and relationship destroyer. Just when you think things will get better they don't. I have been pretty negitive since being diagnosed. I am so tired of the pain I have had in my life time. just seems if it isn't one thing its another and now this comes and hits me where it hurts the worse. I have always enjoyed sex and now I don't even want to think about it anymore. I hope I can not only learn but someway help others that suffer from this terrible disease.

Hi ladies, welcome to the forum.

Sorry to hear you are both suffering from what sounds like vulvodynia. I know there is a lot to take in when you first get a diagnosis. It is good to educate yourself (there is more knowledge contained in this forum than most doctors have on the subject) but try not to get overwhelmed and bear in mind that everyone’s case is different. There is no one definite cure but there are lots of things to try and for some it’s just a case of finding the right thing or combination of things. It is great that you’ve found the forum as people suggest all kinds of things and share their knowledge.

Also, I started a thread a while ago about good books to read on the subject (http://www.vulvodyniasupportforum.com/t774-whats-on-your-v-bookshelf?highlight=bookshelf), some of which you may find helpful.

My v journey has been going on for 10 years, but it’s not as bad as it sounds! My pain levels vary wildly and I have had times where I’ve almost been back to normal. Yes, it has changed my life but I have found many ways to adapt over time and have lots of strategies up my sleeve to manage when times do get bad. The support you’ll find on this forum is invaluable.

Feel free to ask if you have any questions.

Liz