My story - the last 6 years

Hi all,

I'm new to the site but not new to the pain unfortunately! I live in the UK and was diagnosed with Vulvar vestibulitis/vestibulodynia 6 years ago. I can't think of a trigger, just over a few weeks, maybe a month, I started to notice sex was hurting a bit. I ploughed on for a few weeks thinking it would go away, but it didn't and the pain got so bad I had to stop. My symptoms were only a burning pain during sex, and 6 years later that is still the case. I suppose I should be grateful it hasn't got any worse! I don't have any general pain, it is only localised to the vestibule and when provoked. I went to the doctor and was referred to a gynae who prescribed steroid cream. I had already read about how it makes it worse, so i only used it for a few weeks and then stopped. I tried amitriptyline, which did nothing. I tried the lidocaine on a cotton ball at night, which did nothing. During this time I was in a relationship, and was until about 10 months ago. The end of that relationship hit me really hard. We were together for 7 years and in general he was very supportive. Though I know this condition had something to do with him ending things last year. I don't blame him though, he could only put up with it for so long. Although it was awful, I think the breakup has given me the push to get this sorted. When I was with him I could bury my head in the sand. Now, if I want to find someone and be in an intimate relationship then I need to get this sorted. Every cloud eh! So since then I've been a lot more focused on finding a treatment. I have been doing so much reading on the subject, every new study that is published I read it. My GP is very supportive and although doesn't know much about the subject, is happy for me to try things. I was prescribed a estradiol/testosterone compound cream (as researched by Dr. Goldstein). However, I started to use it at a time when I was not in a good place emotionally, and it was making me burst into tears all the time! So I have that in the cupboard to try again in the future when i'm feeling a bit happier! I had stopped the pill quite a while before any pain started, so I am not sure if it's even possible for it to be the cause. I'd never had a yeast infection before it started, so I know it couldn't be that either. I've recently started physical therapy, and apparently have quite weak pelvic floor muscles. So i've been researching the Glazer protocol and have purchased a biofeedback machine. I'll be trying to get my resting tone down to the level he recommends, at the moment I can only relax it enough after it fatigues. I've also started to change all my products to chemical free ones, detergent, shampoo, conditioner, shower gel, hand lotion and toilet roll, anything that could come into contact with the area. This is a long shot I know (the fact that the pain could be caused my chemical irritation), but it's a pretty easy thing to do so it's worth a try.

So that's where I am now. As I said, i'm constantly researching new treatments and reading other women's experiences in forums like these really helps. As we all know, these are conditions we know more about than most doctors. Some days it's hard to stay positive, as I would think it is with any chronic pain condition. But I know I need to stay optimistic, new research is being done all the time, and different treatments work for different women. I wouldn't rule out surgery, but as a last resort once i've tried everything because I know it could end up making things worse. Also, the UK is a bit behind the US when it comes to surgery, and most other treatments actually!

I'd be interested to hear from anyone trying the Glazer protocol, or anyone with vestibulodynia who has found something that works!

Hi Rose and welcome to the forum

I am trying the Glazer Protocol but unfortunatly my sensor broke so I was awaiting a new one, which then got lost in the post (from usa) and have not chased it up for a few weeks. Yes bad i know..I have allowed the other stresses going on in my life to take over and have put the biofeedback to the back of the list. But like you said I really need to focus on treatment and getting this sorted so will order another sensor asap.

I was doing the protocol for about 2 months and did find it helped as well as taking Pregabalin. I found that pain was overall lower and flare ups shorter

Wishing you luck with it

Hello Rose and welcome! I have generalized Vulvodynia..(pain all over my vulva..burning pain, that is). I went to a P.T. She tested my pelvic walls and they aren't to bad. She massages them and it seems she doesn't really know how to help me. She did refer me to an acupuncturist. I have now been three times. I did have a little relief for a few days. You never know what causes the pain to go down or up...other than hormones the week before my period. I would recommend P.T for sure. Sarah take Lyrica. I take Gabepentin, Lyrica and Cymbalta...oh and Percocet for pain 3x a day. I can't sit on a chair ever w/out a foam donut. I can have sex..but the pain on the outside often times prevents me from wanting to have sex. i also do get sore way inside..(my walls) when i have sex. There are so many diff. treatments and we are all so diff. it sounds like you are on the right track though. Hope it works out for you.

Hi there!

I also have provoked vestibulodynia. It started constantly about a year and a half ago and my partner and I haven't been able to have sex since. It was only provoked up until about six months ago. Since then I've had a range of other symptoms that make me nervous that I'm developing generalized vulvodynia, although I don't have the constant pain that many of the women on here do. I have a lot of back pain and muscle pain, tight pelvic floor muscles, and endometriosis which are contributing to the v. pain, no doubt. I get irritation on the labia and other parts of the vuvla, tingling or shooting pains there, stabbing pains from the hair (it feels like), and pain if I try to trim the hair down there (can't even touch it for 3-4 days), but it's all intermittent.
It's frustrating to try to find the right treatment but sounds like you're up to date on all the newest research I've tried a gabapentin/lidocaine compound cream, amitriptyline, and gabapentin but the side effects were too bad and didn't have any relief. I've been doing physio but can't seem to make any headway because every week some new muscle is in spasm and I can't do my regular exercises. Off to the gyno next week to see what else I can try. It's hard to stay motivated. I also am mostly chemical free and try to eat an anti-inflammatory, anti-yeast diet but there are the inevitable slip ups!
I'm really curious to hear how the biofeedback goes for you, and the testosterone/estrogen cream -those are two that my gyno specialist hasn't prescribed but that I'm really interested in. Anyway, some treatments really seem to work for some women so give them all a go!!
Be well!
Katie

Hi all,

Thanks for the welcome. It's so good to be able to talk to others in the same situation. Sometimes I can't quite believe I actually have something wrong with me that the medical world know so little about! If I win the eurolottery tomorrow I'm going to fund so much research!!

Anyway, so i've started the biofeedback and it the success of my sessions really does vary day to day. Some days I can do it really well, I can tense the muscle to a high level and then relax well enough too, and the pain won't be too bad. Then other days, like yesterday I struggled to tense and even just having the prob in was hurting. I can't put my finger on what makes it good one day and bad the next! Also I'm unsure whether it is just a vestibule pain, or a muscle pain. I would think it's a muscle pain.

I'm also trying to massage the actual vestibule most days (with seabuckthorn oil, though i don't think it matters what) - in the hope of some desensitization. Obviously it hurts doing this! Has anyone else tried it?

As for the estradiol/testosterone cream - i'll try it again in a few months. I'm taking St John's wort at the moment and you can't use both together so I'll wait until i've given the physio a decent attempt before I try this. Think the St John's wort is the only thing stopping me getting too overwhelmed by this and the rest of my life at the moment! This condition really does take up a lot of my brain space!

As I said before, I wouldn't rule out surgery. Is this something anyone from the UK has had done?

Lovely to hear from you all x

Regarding the biofeedback, some days you will find you can do it well and tense ok. Other days its like the pelvic floor as gone to sleep and its a struggle to tense. Its like any muscle you exercise it gets tired but keep going even if you can only tense it a little.

The couple of weeks are the hardest but you'll get through it. Also flare ups do seem to come with muscle tiredness for me.

As for rubbing in oil/cream to desensitize, its a good idea as the vulval dermotologist I saw recommended it. Trouble is I am scardy cat and cant seem to take that step. I think I need to gain some courage like the lion from the wizard of oz!

Saying that I rubbed coconut oil in last night and it helped so I will do the same today... oooh Im a bit scared lol

I probably should chip in about the Glazer protocol, I tried it admittedly without a sensor but I had been to a few biofeedback sessions with a physio beforehand, and it made my muscles loads worse. The problem for me is I can't relax them properly so all those contract/relax repititions just made them tighter. I think that's the only thing that would make it a problem and I've wondered if the women who failed on the study may have had the same problem going on.