Tuesday, April 20, 2010

Testing Hormones

I mentioned earlier that my husband read somewhere that the way they test hormones is based on men. We have since found where he read that. It was in Dr. Goldstein's book Reclaiming Desire and here's what it says:

"[...] although total testosterone is important, free testosterone is the most clinically significant value.  Unfortunately, measuring a woman's free testosterone is difficult.  The tests currently offered by the major commercial laboratories in the United States were developed for men, because men have much higher levels of circulating testosterone.  This means that what's considered 'normal' for the tests is based on the testosterone levels of men, not women.  Any test loses accuracy when measuring levels far beyond its normal range.

This becomes a more significant issue when you consider that free testosterone accounts for only about 2 percent of a woman's total testosterone.  In other words, free testosterone is even further outside the normal range that the tests are designed to measure."

This is an outrage.  Why do we even go to gynecologists?  Aren't they supposed to be women doctors?  I'm not a doctor and even I know that testosterone is a significant hormone for women, even if it comes in small doses.  Why has no one taken the steps to makes these tests for women?  This explains the huge discrepancy between the test they did at the GYN and the test done at Dr. G's office, why they told me at the GYN that my testosterone was normal and why I've now found out that it's way way low.  Now I just have to figure out why the estrogen number was also so inaccurate.

Friday, April 16, 2010

Maybe other doctors ARE idiots...

I'm just kidding about that; I don't really believe that all other doctors are idiots. But I have had my hormones tested 2 times prior to going to Dr. Goldstein and both times the doctors told me that everything was normal. I've gotten my results back from the blood test that I had at Dr. G's and they tell a very different story. My estradiol is 40 when it should be at 70 and my testosterone is .2 when is should be .6. I'm no scientist but that seems like a huge difference! I know this may sound weird, but I am so relieved that my hormones are, in fact, low. It gives me something to grasp onto as a possible reason for my problems. Not only can I attribute my pain to low hormones, but it might actually have something to do with my non-existent libido as well. This gives me so much hope that I really will be able to feel desire again once I get my hormone levels where they should be.

Finally, I have something concrete that I know can be fixed. If I wasn't at work right now, I would just break down and cry from the relief.

An itchy combination

I've been using the Estradiol gel for about a week now. I'm supposed to apply it twice a day, but when I first used it, it caused a bit of irritation so I decided to go once a day for a few days to get used to it in a more gradual way and try to prevent an amount of irritation that would make me stop using it. So on Tuesday and Wednesday I felt no itchy/burniness so I decided to start using it twice a day.

Then last night I went to a baseball game. I sat on a hard plastic seat for 4 hours. By itself, that would have caused enough discomfort, but in combination with the Estradiol, man, I am super itchy today! I hope it won't last because I have to use this stuff for 6 months and I really don't want to have an itchy vagina for that long.

Thursday, April 8, 2010

One Track Mind

This picture was the first thing I saw as I was getting on the Metro after my Goldstein appointment. I turned to my husband and said, "what does that look like to you?".

Wednesday, April 7, 2010

The big appointment.

Well, after many months of anticipation, my appointment with Dr. Goldstein has come and gone. I have a lot to say, so hopefully this post will not drone on for too long and make you lose interest.

Obviously this is a big deal. After so many years of half-assed treatments or no treatments at all, after a year and half of physical therapy, which has helped but not completely solved the problem, deciding to go see Dr. Goldstein was a big decision (not to mention an expensive one too). I tend not to get too nervous about things ahead of time, but instead reserve all my nervousness for the day of, at which time I get sick to my stomach and just want to lay down I'm so nervous. It wasn't any different this time. I woke up on Tuesday just feeling nauseous. I know it's just a doctor's appointment, but you know, it's hard. It's hard to talk about, especially to someone new, having to explain the whole situation over again. And I also felt some anxiety about what would he say, would he know what's wrong with me, would he be the big jerk that I've read from other people online? So I was nervous.

Let me mention now that on Sunday I went to the bathroom and low and behold, the toilet paper was pink. Great. My period started a week early two days before my huge vagina appointment. I freaked out. I didn't know if the doctor would even still see me or not. I know that doctors aren't bothered by it, but I wasn't sure if this type of appointment needed a blood-free vagina. However, I called and they said it was fine. But man, worst timing ever right? I felt like crap, I had cramps, and I was really tired. Great way to go into my appointment.

So on to the appointment. Basically the appointment was broken into three segments: consultation, exam, consultation.

Pre-exam consultation: We went into Dr. Goldstein's office and started going over the paperwork that we had filled out prior to coming, about my history and my symptoms. Dr. G asked many detailed questions and was very thorough. I thought that we were prepared, but he asked some questions that I really couldn't answer. Like did they look under the microscope when I was being diagnosed for all those yeast infections during college? I'm really not sure. What were the names of all the yeast medications I took? Again, really no idea. When you're in college and you have a yeast infection, the last thing you're thinking is, "I better write this down because in a few years I'm gonna need to know what I took when I inevitably end up at the vagina doctor".

But all in all, the conversation was relatively painless. Don't get me wrong, any time I have to talk about this stuff it's hard and I cry. But it wasn't too bad. And despite the many negative reviews I've read of Dr. G, he was compassionate, straightforward, and nice. He is as arrogant as they come, there's no denying it, but he wasn't rude nor was he a bully, like I feared he might be. He does, however, think that most doctors are complete idiots, which he never specifically said, but it was clear that he thought so. The only thing he really wasn't open to was my psychologist's recommendation that I start taking anti-anxiety medicine. He felt that since I don't have anxiety in my normal life and I only have it related to this subject, that it really wasn't necessary. We'll see how my therapist feels about this.

The exam: The fun part. Well, the first thing I saw when I walked into the room was a camera and a big computer screen and I thought, oh lord, I'm going to have to look at my vagina on that screen. I was right. My vagina was triple sized and we had live action shots of the whole exam. As you can imagine, I was not super excited about this. No one wants to see their vagina on screen. But I have to say, once I got over the initial humiliation of sitting in a room where four people (me, Dr. G, my husband, and nurse) were looking at my vagina on screen, it was actually quite interesting and informative. He very thoroughly touched each part of my vagina with a cotton swab and asked me questions about how it felt and the level of pain. He showed me the different parts of the vagina and explained them.

Then he sprayed my vagina with vinegar. Yes, you read that right. He sprayed my vagina with vinegar! Never in a million years did I ever think that one thing he might do is spray my vagina with the main ingredient in Italian dressing. He did this to check for skin problems - I guess the vinegar makes them show up or something. But I have to say, that vinegar stung like hell. It was like my vagina was on fire. But fortunately it was only for a couple minutes and then he rinsed it with water. Both Dr. G and the nurse said that it was hard to read me because even when I was describing my pain as a 7 out of 10 I really didn't react in an outward way. They called me stoic. I can tell you that I am an expert at stoic. How do you think I had painful sex with my husband for so long without him knowing just how horrible it felt?

Again, during the exam, Dr. G was very sensitive and supportive. He wasn't a jerk and he didn't make inappropriate jokes (another thing I read somewhere else). His nurse was also very supportive. I can tell that her job is basically to make the patient feel as comfortable as possible. I had my husband there with me for support, but that nurse made me feel like if he wasn't there, she would have given the support I needed. She was there right next to me the whole time, she had her hand on my arm and she was very encouraging, both in what she said and how she acted.

Post-exam consultation: A huge difference between this appointment and most doctor appointments that I've had in my life is that there was absolutely no time constraint. We never once felt like we were being rushed and Dr G took time to explain everything thoroughly. At this point, Dr G was ready to give his diagnosis. So here it is, drum role: I have Vestibulodynia! Dr G then went on to say that this really isn't a diagnosis because it's just like saying I have knee pain. The word dynia means pain in Greek, so vestibulodynia means that I have pain in the vestibule (see diagram to find out where the vestibule is). Makes sense. But he went on to tell me what he believes are the causes of this pain. He believes that there are two:

1)Atrophy of the vestibule tissue - most likely caused by the use of birth control pills. As he explained, birth control pills intentionally lower your estrogen and testosterone, but this can have very negative effects on your vagina (it effects everyone differently so it's basically just a coin toss). The vestibule needs these hormones and without them it goes into atrophy, which causes pain. He has prescribed a gel that he wants me to apply to the area for 3-6 months.

2)Pelvic floor dysfunction - tight muscles. This is what I've been working on at PT and I already know a lot about. But Dr G believes that the reason that PT has only worked up to a point is that I really need to treat the atrophy first before treating the muscles, or else a lot of that muscle work will be useless. This makes a lot of sense because my muscles have made great strides over the past 1.5 years, but I'm still not better. So he recommends that I treat the atrophy first with the gel and then in about 3 months start back up with aggressive PT when my vagina is more ready to receive it. He says that I should be able to have pain-free sex by the end of this year. Then he said, "I know that's a long time..." and both my husband and I were like, "dude, it's been years. If you're right, a few more months is really insignificant."

So there it is. There is more to say, but honestly, this post is getting too long, and I hate reading super long posts. My final thoughts are these: Everyone has different experiences and I certainly don't want to discount the women who said that Dr. Goldstein was horrible. Maybe he was horrible to them, but that was not my experience. For me he was empathetic and supportive and my overall feeling when I left there was a positive one. However, I'm not quite ready to shout his name from the rooftops yet either. I have my diagnosis and I have a plan of attack. I'm not going to say how super-awesome he is until that plan works. When I am having mind-blowing and pain-free sex with my husband, then I'll start singing Dr. Goldstein's praises. Not at the same time. First I will have earth-shattering sex, and then later, when my clothes are back on, I will praise Dr. Golstein! Until then, I will continue working really hard and doing whatever I can to heal my vagina.