Sick of it

Ok so I probably don't have Vulvodynia in its truest sense. But I share your symptoms and Doctors refuse to give me an exact name.

I am 26, sex has always been painful but got worse the older I got and the more fed up with it I got, its near agony now. To add to this I have had unusual discharge my whole life. Every now and then I would seek help from my Doctor but its taken this long to get anywhere. I was told once "if it looks like thrush its probably thrush"......... Finally I found a nice doctor who confirmed once more I don't have thrush, that theres no obvious cause for my discharge and it may or may not be related to the pain (there was talk of possible internal scarring). So far treatment has been focussed on controlling the discharge, it looks like im using a weekly lotion for the rest of my life. Having just had another relationship end, I really am sick of this. I am a sexual person and I want a fulfilling sexual relationship, I am entitled to one. Having read about all of you using numbing gels I really feel that's my best shot. The pain feels like its about an inch or less inside. Like my muscles wont stretch properly like they should. Of course they do but its like being stabbed with a burning sensation afterwards. I have an appointment in 2 weeks and I will demand a numbing gel. I know there's mental issues with this, I have had psychosexual therapy but I feel the best thing for me mentally is to achieve full intercourse and see myself doing that. I also saw a gynaecologist when I was 21 who did an ultrasound and confirmed everything was physically normal.
I have also bought an expensive vibrator to help me relax and stay relaxed during insertation.
I really wish I had the courage to seek and demand better help at an earlier age.

Im looking forward to reading through all your posts.

Do you maybe have vaginimus? That's muscles or does your skin actually hurt?

To me, It sounds like you have vulvodynia. In my case there was no visible sign of it..I didn't have a rash or irritated skin. I was told I had a perfectly healthy looking vagina. After seeing a few doctors vulvodynia was brought up. I was diagnosed about 3 years ago with provoked vestibuledynia. I have pain only when I'm touched down there, and it's only internal pain. I also have muscle tightness that I work on with dilators daily.

My suggestion for you is to join the NVA (National Vulvodynia Association) and find a specialist in your area. This site is very helpful, I will link it below:

http://www.nva.org/

You can only search for specialists if you are a member... you have to pay a donation to join, but it's worth it if you really want to find some good help. Also you could check your local hospitals for gynecologists. At one point I had run out of options with my one specialist and I was suggested by a family member to call my local hospital. They had 2 specialists in the maternity/ gyno. area of the hospital. I was so lucky!

Keep your head up! And good luck!

-Jen

Hey Elle,

It does sound like you have Vulvodynia...the same kind that I have! I also have the discharge, which based on all the reading I've done seems like it's called DIV (Desquamative Inflammatory Vaginitis). I have yet to really figure out what that means or what to do about that...

If you come across any info, let me know!

Sex has always been painful for me, and unless we really "work" at it, the times it's actually enjoyable for me are few and far between. Most of the time, it hurts when he's inserted in me, and I will suffer a burning pain when we're done. I often have to hold my vagina open to make it less painful, if that makes sense. I too do not feel like I'm able to open wide enough for him, even WITH lubrication. I always figured it was vaginismus, because even as a young girl I could not insert tampons. On the flip side, however, I'm able to insert a vibrator on my own without any pain if I'm masturbating, so I know a part of it has to be psychological (the pain).

Now that the doctor has diagnosed me with vulvodynia, I'm not so sure it was vaginismus the entire time, or maybe it was a combination of both.

I too have had unusual discharge since adolescence, never going a day without wearing a pantiliner just because I always have it. I was recently told to stop doing that, so I walk around with wet underwear daily. But I suppose the trade off is better -- I'd rather risk wet underwear than risk more yeast infections/pain.

carby148,

I totally understand how you feel. When my boyfriend and I used to have sex I couldn't even do it. Like I couldn't get him in. It was always so close to happening, but it was much too painful. I'd be left with a burning firey feeling and had to soak in a tub right away. It was awful. I recently had surgery so I no longer have that problem, but I know how it feels. I also had the discharge issue. I used to wear liners all the time, seriously it felt like I peed my pants or something. Somethings to try...change your underwear to 100% cotton if you haven't already. It's supposed to keep moisture away which causes yeast. Also try using an unscented soap like ivory soap. Some soaps can be irritating, but the ivory soap has been good to me since I've started using it. Even try using feminine wipes to keep the area extra clean.

Hope this helps!

-Jen

Ella,
I'm so sorry you are dealing with this horrible issue and can relate all too well. I empathize it's upsetting and angering at the sametime, I remember when I was first diagnosed I thought why does everyone else my age get to enjoy this? I want to, I have needs, cravings too, I want this, so why can't I do this without being in excruciating pain and lingering pain for days after? I haven't been diagnosed with vulvodynia, but I found this blog and the postings fit ALL of my issues to a T. I have been diagnosed with IC, intersestial cystitis and pelvic floor damage, however I'm and have been experiencing what you explained since my problem and diagnoses first stared. I went in several times thinking it was a yeast infection I seemed to get everytime I was intimate or tried to be but it never came up positive? My OBGYN also checked for STD's which where pretty unlikely I've only been with one person, although he has been with others in the past but still nothing. My Dr said it's so odd, it's almost like my body is acting like I'm having an allergic reaction to my husband, which I have heard can happen and you can actually be allergic to sperm however using birth control I've ruled thar out. I also am extremely careful about the lubricants I use, only a natural vagasil (like your own bodies natural moisture) and coconut oil, also we've switched to non latex condoms to try to help avoid any sensitivity I may have to any products we use. I don't know if any of this is helpful but although I have not been officially diagnosed with vulvodynia I just assumed these symptoms where part of IC and my pelvic floor dysfunction.

I have the horrible discharge and went through the constant assumptions by doctors that it's yeast. Turned out to be DIV (desquamative inflammatory vaginitis).

I have the pain with all arousal too..I've done physical therapy, nerve blocks, and meds. My insurance doesn't cover Botox so idk what else to do. My pain is so bad that I can't work or go to school, last Sunday I was having spasms that were so bad it was like I was having a baby