It's been over a year and still no answer :(

**InLoveWithMyHusband** · 06-14-2009 12:31 PM

I have gone to see a couple of doctors and I don't know if it is just coinsidence that I don't have the obvious symptoms when I go in or maybe I'm forgetting to tell them some of the things I noticed, but I have been going to doctors off an on for over a year now and still I get no answer.
Here's the deal, My husband and I got married a little over a year ago. We did have sex a few times several months before we got married but we both originally really wanted to wait until we were married to have sex (we just slipped up a few times) so we stopped having sex and waited until we were married.
Well, those few times we had it, sex was really good. I wasn't on birth control at the time but a month before the wedding I got on birth control. At that time, my doctor also said I had a small yeast infection. She was going to send me home with cream for it but forgot, and since I get so freakin nervous when at the doctor's office, I forgot to ask about it.
Anyway, I go home, start my birth control, and also tried some home remedies (like yogurt). Well, I get married and our wedding night was a disaster, we couldn't have sex because I was in so much pain. We thought maybe it was the yeast infection so we bought the over the counter products for yeast infection. After awhile, we tried having sex again, still tons of pain. My doctor was out of town so I go to another and explain the yeast infection I had awhile back and told her what we tried when we figured I still had it. She took a look, said I had no yeast infection and that she couldn't find anything else wrong in there. She took some blood tests to see if I had any STD's or if I was diabetic....all came back negative.
We kept trying to have sex (and when I say kept trying, I mean every 3-4 weeks. Since it was so painful, we wanted to give me plenty of time to heal from any pain and time to forget about the pain before trying again).
I also had a lack of sexual desire so the doctors thought that perhaps it was just a lack of desire and that I needed to work on that. Well, I decide to take myself of birth control since it was a hormonal one. I even read that it can take up to 6 months before a person goes completely back to normal afterwards. So we held off from doctor visits for 6 months. Even after 6 months we still couldn't have sex so I went to the doctor again. They re-examin my vagina, find nothing wrong, and then do a lot of blood work. Rested the STD and diabetes tests and also checked all of my hormone levels.
Still nothing was abnormal.
Well, it has been 1 year and a few months and while my husband and I have made progress on our own, it is still painful.
I have slowly been getting my desire back. I never feel "horny" but I am gaining back my desire to want to spend time kissing and even having sex...it's hard to explain...I desire to have sex, but it's more out of the fact that I love my husband and a married couple was designed to have sex with one another and because of that, I desire to have sex. But I still dont' have that "hormonal desire" I guess I could call it. Just a "mental desire" for it. I hope that makes sense.
A couple weeks ago we were finally able to have sex a little. It still hurt but I was able to push through the pain and even be numb to the pain. From time to time over the last year we've had times like that where we get past the pain, but through the course of having sex, I don't feel anything. I can feel him going back and forth within me, but there is no "good" or "sexual" feeling. During those times, I can still feel some of the pain but it is not as severe as it usually is.
The pain feels like this: Fire! It is as though I was having sex with a lit torch rather than my husband. It's almost like a dry burning feeling, but I am not dry. I am usually quite wet. Now, you might say that, "oh, well, you must be getting some kind of desire if you are wet" but here's the thing, I am always at least a little wet 24/7 so to me, being wet is not a sign of progress since I'm always wet.
Other things I have that I don't know if they are normal or not is that I often times have a very clear discharge. I usually only notice it when I pee and then go to whip. On the toilet paper I see this clear slimmy and sometimes goopy looking stuff.
I never have a steady period. Usually I am 1-2 weeks late (so I have a period every 5-6 weeks) and sometimes it can be anywhere from 1 week early to 3-4 weeks late. And when I am on my period the blood comes out really goopy like. Not all of the blood, some gets soaked up in my tampon but a lot of it is just really goopy looking and really dark.
I am still not on any birth control. We figured A. why pay for it if we can't have sex anyway and B. We should probably figure out what is wrong before going on something that could effect it.
And something my husband has just realized (but seeing that we can never have sex, we don't know if this is something new or something I've had for awhile) but last time we tried having sex afterwards we always lay on the bed for a little bit and as the fluids dried on his penis he found a lot of dry skin on it from me. We tried having sex again just the other day and it was the same thing. He had dry skin all over his penis from inside me.
Does anyone have any ideas? I have spent 1500$ already in doctor visits trying to let them figure it out and I don't want to spend any more money on wasted visits. If anyone has ideas please let me know! I'm going to do a lot of research and try to get ideas and then take them in next time I go. I've read that there are sometimes issues people can have that doctors may not catch right away so I thought that maybe if I created a list of possiblities, next time I go in they can go down the list and confirm with me that I don't have any of those or talk with me about the possibility of if I have them...I hope that makes sesne.
Anyways, please help. I am at a lost. My husband is so loving and patient...no man should have to wait this long to enjoy having sex with his wife and no married couple should have to be deprived of each other for this long! Help!

**WildChild** · 06-14-2009 02:50 PM

Are you sure it was dried skin and just dried fluids? Most women have some discharge regularly, it's part of the way your body cleans your vagina as well as being a sign of arousal.

If you can collect some of this stuff that appears to be skin and take it into the doc it might help them get a handle on this. Repeated pain will do a lot to decrease your desire. You might try going into the local STD clinic. That may sound odd since it's unlikely you have an STD, however they deal with all sorts of problems and infections that a doc regular practice dealing with mostly with pregnant ot pre menopausal women, may not see much of. Typically they charge on a sliding scale and they just may be able to give you some insight. The fact that you had desire and no pain before indicates that something changed, you may have to be a detective to figure out what. Doctors are mostly educated guessers (a doc told me that) they each have their little blind spots and special areas. Growing up we had a doctor neighbor who got interested in arthritis and started telling everyone they had it - they didn't.

The point is don't give up. you have to find a doc who will keep at it until you get this nailed down. You might want to read the Yeast Connection and see if it rings any bells.

**free spirit** · 06-15-2009 05:44 PM

In Love,

The non-natural hormones in the bcp can really screw some women up. You sound like you are suffering from vulvodynia. It's a nerve/pain problem directly involving the vulva and surrounding(sometimes inside) area. The lack of desire, is very likely caused by the pain you are experiencing.

For now, I would stop trying to have intercourse. It is only going to increase your discomfort. There is a yahoo group called 'Vulvar Disorders'. The women in this group can be very helpful. Though the first thing you should do is try to find a doctor that understands and works with pelvic pain patients. Call around, talk with the nurses at different gyn offices and see if the 1) understand what your talking about and 2) actually may know who may be able to help you.

Vulvodynia (or any of the other painful conditions) is treatable. It takes time to get back to normal. Be aware of 'guarding'. This is when you feel pain in your tender parts and you subconsciously tighten up your muscles. Once your pelvic muscles are in a chronic state of tension, it makes matters worse.

I'm not saying thats what you have, but finding a doc who works with women like you is key to getting your life back. There is help, but it can be really difficult to find somebody in your area that may be able to help you. The women on the yahoo group are from all over the place and may be able to recommend someone.

Be persistent. Take notes of how you feel and what makes it worse/better. Write your questions down before you go to another doc and bring them with you.

A side note, don't forget to communicate with your spouse how you feel and what is going on with you. Be graphic in your description if need be. It is really important to s focus on him often enough to let him know that you are still there for him. It is way too easy to slip into just dealing with your pain and not focusing on anything else. I'm speaking from experience. I almost lost the best man I've ever had because of 3 and half years of pain. I'm 95% normal now. What you are dealing with is treatable and you will be pain free again. Finding the right doc is key. There is also the National Vulvodynia Association for more information.
peace

**free spirit** · 06-15-2009 06:37 PM

The information for the National Vulvodynia Association was deleted. While I'm thinking about it, there is also Dr. Glazer's cite, vulvodynia with the dot com. He's not the 'be all, end all' in info, but there is a lot of good information there.