I'm really glad you've finally found the answer! Also, that you've shared it with us! Sometimes these forums feel like watching half an episode of "Mystery Diagnosis" but never seeing the ending!

Oh beleive me, I know that one.
To All:
So if your problems sound anything like mine please consider vulvar vestubilits. It is not a death sentence but it is an answer. I dont know how many women get this or how some women can be on birth control for 20 years and have no problems. but im not one of them. If you have pain and no one knows why then continue researching and try to find a doctor the studys the vulva, not just a regular gyno.
Thanks for your reply Eiri, and I would like to help someone out there. This forum and your comments have helped me sooo much.

Yeah I can have sex again !!!! And guess what it doesnt hurt !!!! Oh my gosh I am soooo happy I could cry.....I went for my follow up yesterday and the estrogen is repairing my vestibule. I still have to use it 3x a week for one more month and then ween myself off the estrogen. In three months I will get the IUD put in and the goal is be free from estrogen replacements. The doctor is hoping that my body will take care of itself.

My hubby is so happy, you should have seen him at the docs office.

omg i think this is what's wrong with me. i've been having painful sex for a year and i've been on the pill for 5 years. it feels like a cut somewhere on the vulva and it is very painful and never heals.

this may be a possible explanation to the problems i've been having. i've only been on bc for a few months, but for about the past 6 weeks i've been experiencing painful intercourse. there is some pain immediately upon insertion, and gets worse as it goes on. the pain is usually bearable, and i'm sometimes still able to orgasm, but it is a huge annoyance. it's an odd feeling, as i haven't really been able to pinpoint the exact location of the pain. sometimes it feels like it's inside but recently i've found that it seems to be around the opening. it's not caused by friction as i use plenty of lube. but i only really feel the pain during intercourse or when i'm being touched in that area. sometimes i experience some pain when wearing tight clothing but this doesn't seem to be in the same place. does this sound like it could be vulvar vestibulitis?

this is the exact way I felt. Like the cuts just never fully went away. Please go see a doctor. A regular gynocologist might not know what vestibular vestitis is so call your insurance company and ask if they have any doctors that study the VULVA. If you do not have insurance then you can call local gynocologists in your phone book and ask them. Or you can do an online search. But do see a doctor. it can get expensive but its the best thing I ever did. Good Luck and if you have any other questions feel free to ask.

From what my doctor told me vulvar vestibulitisis is only at the opening of the vagina, at the vestibule or hymen. Usually you can pinpoint exactly where the pain is. So I do not think you have it.

But I still suggest that you go to a Vulva specialist. (see my previous post)

Hey Rosie- I'm really interested reading your experience.

I have heard that there are estrogen treatments for women who don't get much lubrication (not necessarily the same condition but very similar) that involve a small plastic ring (like the nuvaring) that has estrogen in it, it is absorbed not into the blood but just the tissues in the vulva/vagina, and help them to swell and lubricate. Have you heard anything about this?

No Georgia59 I have never heard of rings that release estrogen. Although it sounds like it would get the job done. The estrogen that I was taking is in a tube and you insert it. Kinda like monistat or something. The ring sounds better to use to me though. My curiosity is up, I think I will research this maybe even ask my doctor if I could try this....thanks = )

No prob- and let me what you find. I don't know much about it except that I heard about it on a radio show (Dr. Laura Berman's show)

hey just an update. after I gave birth my pain was gone. according to my doctor my problems were from hormonal imbalance. so im guessing that going through pregnancy, birth, and still breastfeeding has brought my natural body back together.

I havent had this kind of sex in my entire life. Its so awesome. Never have i been able to just feel him. Ive always had to be careful and afraid.

Hi: I was just reading this post...Yes, there is a circular disc that is inserted high in the vagina...It is called Estring...I have used it for near four years....We were having so much sex that I was nearly dying of the pain...I actually tore...I found out that the inner vagina thins as you age and mine was paper thin...

I went to my OB-GYN twice before we settled on this miracle disc...I insert it every three months and it works like a God like miracle inside me...It gives me estrogen daily...I am being fed this on my g-spot, vaginal canal and I think it even hits my clit...It awakens you sexually....My OB-GYN said the inner me looks like a young woman after this treatment...IMO, every woman should use this.....Sure helps your sex life....I have not needed lubrication for near four years now...Makes sex great...

I hope this bit of information helps some woman along the line...It just plain makes me feel so young....

Take care,
Caroline

Hello,
I appreciate your website. I empathize with everything you wrote. I suffer from vestibulitis as well, and mine came on sunddenly when I was 20. ( I am 21, now). I wanted to share with you my experience with treatment. I have tried estrace, steroids, and other topical treatments. However, I found that half the time I would get random flare-ups for no reason at all, and no matter how much i put on the medicine, the vestibulitis would come back. So, here's the good news. I discovered that my family has a susceptibility to delayed food allergies, called IGG allergies. They are very "hush hush" because medical doctors and allergists don't support them like the typical, immediate food allergies (IGEs). Many homeopathic doctors, however, swear by it and say it is scientifically proven that IGG allergies are real. I can say, as well as my family, that I, too swear by it. I got this test done by my OBGYN because he was open to the test. It's a blood test, and you are required to eat a variety of foods before the test so that many foods are in your system. When the results came back, I foudn out I have a delayed allergy to casein, a protein found in milk. This test was done after numerous negative allergy test done by traditional allergists for IGE allergies (immediate allergies). I have eliminated casein for 2 weeks now, and my rash is almost gone completely. I thought back to when my symptoms started, and it was when I was in a different country drinking milk three times a day (their water was bad). It all makes sense. I researched casein allergies, and found that one of the most common symptoms is a rash, sometimes occuring days, hours, or weeks after ingesting the food. I can't tell you how nice it is to have found a simple solution to this horrible problem. I would advise if you haven't already, get the IGG antibody test! Nutritionists or homeopathic doctors will give them to you. Any delayed allergy could be causing this rash.....it's worth a shot. Anyway, Thanks for listening to my testimony. Let me know if you find out anything. good luck!
Ali

Thanks so much Rosie and everyone else. I had never heard anything about the BC and I've had vulvar vestibulitis for about 9 years now! I have also been on the pill with desogestrel (progestrin) for that long. I started hurting with the guy I started the pill with. I had no idea it would have anything to do with estrogen. I'm going to stop putting any type of BC in my body for a while. I'm guessing my body will just naturally produce the estrogen I need again. then after I'm in another serious relationship I will try the nuvaring. I'm going to send the link to this to every vulvar vestibulitis forum/site I can find! I was seriously in tears (of joy) when I came across this. I'm trying not to get my hopes up too much, but if it's as simple as going off the pill, working toward that hormonal balance, I will be sooo happy!

good idea..a natural therapy is definately the sure way to go. After my pregnancy and breastfeeding my hormones corrected itself. I havent needed medication since! Good Luck!

I was just wondering what birth control you were on? I've had chronic pain during sex for the last 9 months. I've been to a handful of doctors and now have been seeing a specialist. I've tried every kind of cream and pill to make it better but nothing seems to work. Now, it has gotten worse...even putting tampons in can be a struggle. And like
AJS248 post attested to I also have terribly unpredictable random flare-ups. I currently am experiencing one and am at a loss as to what to do. Does anyone know of good vulva specialists? Or specific medicines that have worked? I'm primarily interested in what birth controls have caused this?

Hi All,
I have been suffering with vulva vestibulitis for about 5 months now. I was referred to a dermatologist who specialises in the area but haven't been that happy with her. I had a skin biopsy which simply showed inflamation, no cause. But it was after the skin biopsy that I discovered a very simple way to get rid of the symptoms - Rinsing the area with water every time after going to the toilet. I just use a travel size pump action container filled with water and squirt on the vulva, then just dab dry with a tissue. So it is either rinsing away my urine or not wipping with toilet paper. I can now have sex and no longer get stinging/burning during the day. A very simple solution - give it a try as it is only water so wont do any harm and hopefully with help

I am 18 now and started with my birth control pills last spring. Come summer time I got into a relationship and was really getting involved sexually. In the beginning I felt fine but every time after that first with him I would feel a little tender. Soon after my tenderness would get to a point where I wouldn't even want him touching me the day after we would have sex. The next day I would be fine again. A few weeks later with that tenderness feeling intensifying every time I finally got to a point where I couldn't have intercourse. I wanted to so bad but every time the penis was any where around the outside or in the inside it was this awful burning blocking sensation. I couldn't figure out what was wrong with me. I've had no bumps or red skin, not itchyness or burning when I urinate, as far I as I had known I was clean and so was my partner so it made no sense for me. I started research vaginal pains and found vulvodynia and the symptoms. My mom called in for me and told them my symptoms and told them I had come across this vulvodynia and I think that's what I have. They then said yes what I have sounds like vulvar vestibulitis. Since the Doctor was out for the next 10 days he put my on some yeast infection pills along with some cream for vestibulitis. Also in my readings I found out that lower back pain can be something you will have prior to this and I just have been dealing with that this last month! Have been going to the chiropractor constantly and it just doesn't seem to get better! I also have troubles with my eyes and I want to believe it's an effect of my vestibulitis. Once a month I will usually have really bad irritations in my right eye where it will be just red, tender, and burns and extremely sensitive to light, as well as appearing to be very dry. I do wear contacts and am always told its my makeup thats giving me these eye problems that are damaging my eyes. I've been wearing my makeup the same way for 4 years and I haven't had such awful eye problems til early this summer. It's all really pulling together for me. I hadn't become really sexually active til this last summer, started my bc pills not too long before that, and had begun having my experiences with horrible eye problems. I have been reading a lot about birth control triguring vestibulitis for some women and how some sites out there are wanting girls that have vestibulitis on bc and not on to give them information on pain etc. My mom has been wanting to switch birth control brands because she thinks some are more safe out there for blood clots and what not and maybe she's right but I believe any birth control is going to have some nasty side effects and if it could be whats making me have this vestibulitis it's totally worth getting off the pill. I'm planning on stopping my pills tonight and pray that this will be the answer for all my problems! I'm so afraid of dealing with not being able to enjoy sex and make love to my partner throughout the rest of my life. I'm too young, I just turned 18 a little over a week ago and I think this is a wise decision for myself. If anyone else knows anything about if eye irritation, soreness, redness can be a result please let me know, I've been searching the internet but haven't seem to have much luck, then again it may just because these contacts aren't for me But it just seems odd my eyes flare up usually on wknds when I'm with my boyfriend and I'm having pain down low

Hey Rosie!

Thanks so much for your post! I have been suffering from the same thing. Unfortunately not all Vulvar Pain Specialists believe that this pain comes from birth control and a hormonal imbalance. I was just curious if you would be willing to tell me what was the name of the doctor you saw and where they are located? Thank you again - your post gives me hope!