Glad I found this support group

Hi, I have both Vulvodynia and Interstitial Cystitis. I find the symptoms hard to distinguish between the two but I will do my best to tell my experience with Vulvodynia. When I was in my teens and hit puberty it would burn like hell (literally, like fire) when I peed. I tried to tell my mom but since it burned the most during my period, she assumed it was just period pain, and I was too naive and shy to tell her differently. My very first physical exam by a doctor was to check if I had a yeast infection. I did not, but whenever I told my mom I was in pain, she would buy me Canesten. I used it but it never helped. Throughout the years I learned ways to cope. I discovered that Always brand pads caused burning and Kotex brand pads did not cause nearly as much burning (I've never been a tampon user). I use panty liners as little as possible and would rather get my panties a little dirty than use a liner if I don't really need it (sorry if TMI). I only use white cotton panties. I use the mildest soap possible (I used to use Ivory brand but found out Dove sensitive skin is better for me). I avoid soda pop and orange juice like the plague!! Anything acidic causes burning, but those two are the worst! I also use a very mild laundry detergent, and it has to be powder, not liquid!! And I drink tons and tons of water to dilute the urine.

I got married in 2005 (yes, I was a virgin till then, believe it or not!) and intercourse was never enjoyable but that's because I was on antidepressants. I withdrew from the antidepressants throughout 2007 and sex got better. In 2008 I went off the birth control pill and sex got even better! But then in 2009 everything went downhill . I started getting pelvic pain (aching in my pubic bone) as well as various aching and stabbing pains in my vulva and around my ovaries and bladder. I was misdiagnosed numerous times, varying from appendicitis to a pelvic infection. I ended up going in for a laparoscopy to see if I had endometriosis. I did not. Everything, including my appendix, was fine. BTW, wow, did it burn to pee after the surgery! I had not drank water in a long time and I think I may have had a catheter in during surgery.

I have not had as bad pelvic pain as I did in 2009 but I still have various aches and pains in the areas I listed above, but I am not as worried about them and I believe they come mostly from my IC and Vulvodynia. The vulva burning got a lot worse in 2010 and that is where I am at today. I do not know what made it worse. I used to just get burning when I peed, and then only if I'd drank/ate something acidic or hadn't drank enough water, or directly after sex. But now I get burning in the vulva area when I sit for a long period of time, when I wear tight jeans, and sometimes it just burns continually no matter what! Sometimes I have days or weeks where it's not too bad and other times it's weeks of pure agony. I wear loose sweat pants almost all the time and am terrified of sex.

Speaking of sex, my husband and I are trying to conceive. So I wouldn't exactly say we're infertile...but it's kinda hard to conceive when you don't have sex, lol ! (Yes, that is a 'lol' with a crying face!) My doctor gave me lidocaine but I haven't tried it yet. I've also heard of soaking a pad in water, freezing it, and then wearing that to numb the pain (I heard about this in relation to tearing after delivery - not for me personally). So I was thinking of trying that, either before or after sex, maybe both.

I have seen a uro-gyno. I went to see if I had IC and he ended up diagnosing me with either Vulvodynia or Vulvar Vestibulus Syndrome. He touched the area around the vaginal opening with a cotton swab and I flinched every time until I was crying. I am supposed go see another doctor yet in relation to this but she hasn't phoned me yet.

Another thing I should mention is the itching. My understanding is this is not common with Vulvodynia but it IS a symptom of it and does affect some women. For me the itching can get almost as bad as the burning. The itching is located between the inner and outer labia and under the hood (sorry if TMI). My doctor always gave me a topical cream for this but I quit using it when I realized it helped only temporarily and wasn't a cure to any "yeast" as she claimed. I now use Aveeno powder mixed with water and that helps a little and at least it's natural.

Anyway, I have been rambling on for a while now, but that is my story in a nutshell...a large nutshell, lol! Once again, thank you for this support group!

Thanks so much for sharing, I too used to have recurrent yeast infections, or what I thought were yeast infections when I was a teenager.
I do hope you manage to conceive, let me know how the Lidocaine works? I know it sounds extreme but if the worst came to the worst would you use artifial insemination? I reckon I would if I really could not have intercourse.
I too also get itching, about a week ago it was so bad I had to stop myself from scratching as I know that when I do that it just then gets sore.

Take Care and sending you blesses for a pregnancy soon!!!

Sebby
xxx

Thanks so much for your reply, Sebby. I will let you know if the lidocaine works...whenever the next time is I have the courage to try sex, that is! My husband & I have talked about artificial insemination and we are okay with it - of course, only with hubby's sperm! I have heard about the turkey baster idea, too. But the other day we went to my in-laws for a meal and I saw a turkey baster lying on the kitchen counter...and my immediate thought was OH SHOOT THAT'S HUGE! LOL! Do they come in smaller sizes, lol?!? I should be ovulating mid-April and I hope to try the lidocaine then and every other remedy I know of to reduce pain both during and after! Thanks for the blessings

Good luck for mid April, pray those sperm swim for their lives! I have never actually seen a turkey baster, well I probably have but didnt take much notice of it but I did wonder how big they were! Im tempted to Google it now to see how big they look lol. Take care and good luck

Sebby
xxx

OK, everybody who wants to know how lidocaine works, I now have results to tell you about. I will try not to give TMI! Let me briefly sum it up to say:

The Good Thing: It works to numb the area so that you feel very minimal pain!! YAY!!
The Bad News: IT ALSO NUMBS HUBBY!! So if you're trying to get preggo.....doesn't work so well.

So yah, if you want more details, I can give them, lol, but for now I'll just keep it at that!

Thanks for the info, shame it numbs the man tho.I did wonder about that.

Im wondering if there is a way to apply it that wont affect him too much?

Do you have to put it on the inside? maybe just put it on the outside?

Have you tried that preseed lubricant that you posted about? that looks worth a try.

Good luck and keep us informed. I do hope and pray you will fall pregnant soon. Sending you best wishes and good vibes.

Sebby
xxx