8 years and struggling

Hi everyone,

I'm new here and was told to find a support group because this is all getting a bit much really...

I lost my virginity when I was 18 and it hurt - that was normal. Loads of women had told me that it hurt so that was fine I didn't question that. I was with the same guy for a couple of months and each time after that it was uncomfortable and not great. I didn't tell him because I was embarrassed and figured it would just take a wee bit of time to have pain free sex, i figured it would take my body a bit of time to get used to it. After that I had a boyfriend at university and was with him for 2.5 years. Sex still hurt but it wasn't every single time at the same time. Sometimes it would be sore from a finger, and he couldn't even penetrate me, sometimes part way through penetration it would begin to really hurt, sometimes (very very very rarely) it would be ok but the pain would come on after. The pain is at the entrance to my vagina and it burns. It's near the bottom (just above the perineum) and the pain feels like I'm being burned or sliced with razor blades.

When I was at uni I went to the dr about 12 different occasions, had loads of tests done for STIs, yeast infections etc and they always came back negative. I was essentially shooed out of the door and told it was all in my head. My boyfriend was understanding and lovely but he was the only person who knew about this and it sometimes took a strain on our relationship. After me and him broke up I confided in my mum and told her the problem. She told to me to demand a referral to a gyno which i did and i'm currently being bounced around the NHS. I see a different dr each time and therefore have to have a new examination each time. Several drs have made me cry from being so insensitive (always female drs which shocked me) and last time I was at hospital in January a dr literally shrugged at me. I'm being referred to a neuro gyno and have an upcoming appt in April. I've had so many scans and nothing can be found for cysts / endometriosis etc. I've spent months with a psychosexual counsellor, I've had a few sessions with an acupuncturist and now I'm seeing a hypnotherapist (I've only had one session so I'll have to wait and see how that goes).

Emotionally I'm broken down. I worry about getting involved with any man because of this huge issue and my self confidence is very low. Yes I know that if a man doesn't accept it and deal with it properly he's not worth it - but that doesn't really help me. I ended up asking my best friend for a favour almost 2 years ago - I needed to have sex and he was single so could he help me. There was no way for me to track any progress unless I was sexually active so he's been a great help to me and is incredibly supportive. He recently sent me an article on vestibulodynia and said it sounds very similar to what I have. I've printed loads of info about it and will take it to my next appt with the dr as I think it's sometimes more beneficial to take your own ideas with you - from past experience. The pain isn't all around the "clock face" it's just at 5, 6, 7. Where it really just feels like I'm too tight. I've tried dilators in the past but found the whole process incredibly painful and anxiety provoking.

Does anyone have any idea if this could be vestibulodynia? Even though the pain is only nearer the perineum and it doesn't hurt to the same degree each time?? And does anyone have any hints and tips for how to make the process of using a dilator less traumatic and more useful? I find that drs haven't been giving me much guidance on this kind of thing. I just read a post below and have bought the Amy Stein book "Heal pelvic pain" as it was recommended, and will look in to doing more yoga, but if anyone has any more advice please please please please please help. I'm going a bit crazy. 8 years is a long time and is really effecting my mental health. Another issue with my life is I don't always stay in the same place. Last year I lived in Africa (with no access to a gyno) so my hunt for a cure was put on hold for a year. In june I'm moving to Vancouver (definitely more medical help available in Canada but also pretty expensive for a Brit on a budget). I know this is a long shot but if any Canadians happen to read this and could give me any advice on help to get while I'm out there that would be amazing.

I've read a lot of the stories below and I feel for everyone. I know exactly what it's like and just want it to be over. Thanks for taking the time to read this xxxx

Hey hun. Are you in England? You have to go to Dr. Gabrielle Downey in Birmingham. She's the best. My story is very similar to yours, except for ten years. She was the only person to pinpoint my pain and within seconds. Had the operation done a few months ago and had pain free sex for the first time recently. Message for details if you want but I can't recommend her enough. She changed my life. Xx

PS - she's an absolute expert in this area and has even been on embarrassing bodies a few times!

I am and I've actually made a private appt with her for mid april. Don't want to get my hopes up too much for it but i'm hoping it will help! Can you tell me how long between the first appt and the op fr you? What else did she recommend for pain control beforehand? Thanks so much. Private message me if you'd prefer? Thank you xx

You only have pain when you have sex right? I would just recommend putting sex on hold for a bit until this is sorted and see Dr. Downey and get the ball rolling. I made the mistake of continuing to have sex with my then boyfriend and ended up developing vaginismus from the expectation of pain which then led to sex becoming aversive, I had absolutely no interest and abstained for well over a year because fuck putting myself pain! I promise she will be different. I cried with happiness after I saw her! That's the difference. The nhs are so bad, I know the feeling of being tossed around by people who won't admit they don't have a clue what to do, been given steroid creams for lichen sclerosis which I knew I didn't have, have had two unnecessary biopsies etc etc. If you really want to keep trying sex, get yourself some lidocaine ointment, I've bought it online a couple of times. It helps to numb the area. If you're only getting pain during sex, sounds like you have provoked vulvodynia Xx

The old name for provoked volvodynia is vulvar vestibulitis. You might have heard of that too. Ahhh I'm so excited for you to see her!!! xx

I think I had about 4 months in between because I had to be referred to Dr.Claire Bailey in Birmingham hospital as I couldn't afford to have it done through privately with Dr.Downey, so had it done for free through the nhs. So had to have an initial appointment with Claire which took a month or two then wait another month or two for the operation. Claire has been trained by Dr.Downey and her husband (professor of vulvar disorders) so she's like their protege and she's great! She knows exactly what she's doing. And Dr.Downey told me that she thinks only a handful one people in the country actually know how to do the surgery correctly so you're literally in the best hands!

And obviously I can't tell you what to do, but I would highly consider putting Canada on hold if you can, especially if your diagnosis is the same as mine and surgery is recommended. This has changed my life more than I can express in words and I'm forever grateful I found these guys.

I had vulvodynia for 15 years. I am cured. To be more specific the first few years it would burn like hell for no reason, then next 6-8 years it would burn when provoked, then towards the last few ears it was vulvodynia again and would burn so intensely I'm surprised my child survived (I was pregnant at the time). Then I found the cure. I followed the protocol by Anthony William.

OK... basically according to Anthony William vaginal burning can be caused by an unknown/currently undetectable strain of either strep or shingles. If your perinium is sore that could be a shingles virus (shingles doesn't always have a rash) or it could be a strep related virus attacking the nerves there. Either way, it's very curable. You'll just have to try a few things.

Here's my blog. It helps but it might a bit overwhelming. It might be easier if we chat for a bit before you start the protocol to kill the virus causing you pain. I have been coaching women for the past 6 months. That seems to make a big difference. We talk over the phone to help me make an educated guess what's going on, then I make them a personalized plan. Kinda like a nutritionist. I keep in touch with them and it's working, their pain is going down. But everyone is different. Each plan I recommend is different. I am not a practitioner. I'm just trying to help because it's the right thing to do.

http://myvulvodyniacure.blogspot.com/
sarisbaris40@gmail.com

Don't give up!
Sarah

Just FYI... I don't charge for this. I'm not a practitioner. It's just the right thing to do.

Hi there,

I totally know what you mean about not being able to test your progress without having sex with someone. I also have 2 old friends who have sex with me from time to time to help me figure out where I'm at. My pain was also at 6 o'clock before I had surgery but post Vestibulectomy I am actually having pain more at 12:30. It's too soon for me to tell if this surgery has actually help me or not as I am still trying to stretch myself back out to the size I was before when I could actually get a penis in. I hope you find an answer soon! I know how difficult it is when you are moving and dealing with other things in life.

Hey

I used to think that sleeping with a friend to help was a unique way of going about it but it turns out it's common. I'm glad that you have people who you can test it out with too! Sorry to hear you're still in pain how long has it been since your surgery? I got diagnosed with vestibulodynia last month and i'm booked in for surgery on may 23rd. Fingers crossed it works! Xx

It's been 6 months. U honestly didn't know it would take me this long to stretch myself back out to my normal size, but my stitches lasted a month longer than the anticipated 6 months to dissolve and I got a partial instead of full. I'm sure I don't have to tell you that the surgery is not very successful and it can take years to fully recover. I hope it's the right choice for you. I still haven't decided if I regret it or not.

People think I'm nuts when I explain having friends help me through sex. For me it's really important that I trust the person I'm sleeping with without fail so doing it with guys I've known for a decade really helps me feel safe. I have a feeling this forum is less judgmental than my last one, though, because a lot of women think they have Vaginismus when they really don't just because their wedding night doesn't go as planned and then a month or 2 later after dilating they're good to go. It's not so simple for those of us with physical ailments causing real pain and not perceived pain from discomfort.

The success rates for surgery are high in the scientific literature Birmingham Treatment Centre have an 80-90% success rate with this procedure if you are a good candidate ie. provoked vulvodynia. It's not reccommened for generalised vulvodynia There is a strange taboo surrounding surgery for this and I'm not sure why. I wish I had it available to me years ago. It definitely shouldn't take years to recover, I had sex after about 3 months albeit drunk but still sex haha and more importantly pain free. It was excruciating before, I had to completely abstain from it the last couple years because of the pain. What surgeon performed your op?

Xx