Test Results Are In

I've had lots of tests in the last month and have neglected to update you on their results.

I mentioned that I was going to see my regular doctor to be tested for hypothyroidism because I have so many of the symptoms.  Well, I have no thyroid issues.  So that's good.  I mean, in one way it would help explain my fatigue, but I suppose I'd rather not have a thyroid issue that has to be treated for the rest of my life.  She also tested me for the Epstein Barr virus that I had when I was younger (due to getting Mono when I was 2) and caused my Chronic Fatigue, and the test showed that the EBV is no longer active in my system.  I'm not sure what this means exactly, because I'm still tired, but I no longer have an active EBV in my body.  Yay?

So why am I still tired?  Good question.  No answer really.  My doctor told me that that might just be my life; that it might be my normal.  Well, I told her that was unacceptable - it's not okay for me to be this tired all the time.  She said the normal stuff - some people need 9 hours of sleep a night (me included) and I try, but it's hard to get that much sleep when I have to wake up at 5:30am.  She also said I need to exercise.  Well, as I've said here before and I said to her, how can I exercise when I'm totally exhausted?  It's a never-ending cycle.  But whatever.  Hopefully the other things I'm doing will help with the fatigue.

My hormone results are back and they are still low.  Dr. G wants me to use a systemic testosterone cream for 3 weeks every day and then 3 times per week until I don't know.  Even though my estrogen is still low, he says I'm out of the menopause low and he wants me to stop the Estradiol for now.  I think he's hoping that my own body will pick up the pace after getting a jump start.  He also prescribed the Diazapam suppositories to help relax my pelvic floor muscles.  I will be getting those today so I'll let you know how they go.  I guess I'll do them anally like he recommended because my vagina is so sensitive - but I'm not looking forward to it!  He can't explain the burning that has returned, but he's hoping that the suppositories will help and I've been trying to do more yoga which seems to help too.  I really think that stretching is key - it does make a difference.

My psychiatrist has lowered my Clonazapam to .5mg in the morning and .5mg at night and added 10mg of Prozac in the morning.  We'll see.  This will supposedly help with the fatigue, but it takes longer to get into the system.  I've been taking the Prozac for about 1.5 weeks and I'm still tired, but he said it could take a month.  It also has some scary side effects, but so far all I've noticed is dry mouth.  If it gives me more energy, I'll take dry mouth.

So the Prozac and testosterone are both supposed to help me in the energy department.  I sure hope so.  I'm so tired.  I want to exercise, but I have no energy.  I'm hoping for the best with these drugs.  We'll see how it goes.

Goldstein Visit #3

Well, I don't even know where to start.  There is a lot of information to share.  It helps me to break it into categories so that's what I'll do:

The Vestibule:

It appears that my vestibule is pretty well healed.  I didn't really have much pain with the Q-tip test, so that's good news.  Dr. G said he may take me off of the Estradiol, but he wants to learn the results of my hormone test beforehand.  I would be shocked if my estrogen is where is should be, but according to my vagina - Dr. G thinks I have some good estrogen down there.

Hormones:

I'll get the results back next week, but like I said, I just don't think there's any way my hormones are where they should be.  Dr. G did prescribe Testosterone gel that I am supposed to apply daily to my legs.  He also said that I should rotate the spot of application because it can make me hairy!  (yikes!)  He said it also might cause more acne.  But he also said that it could help with my libido and give me more energy, so that is a trade I'm willing to make.  Depending on the results of my thyroid test, we might just stick with the testosterone gel for now before trying other methods to increase my energy.  He said he doesn't want me trying too many new things at once - and I agree.   

The new (or is it?) problem:
Lately during PT, I've been feeling pain at the 12 o'clock spot, but not in the pelvic muscles - it's actually where my urethra is.  I told Dr. G about this and he went in there, and it was, in fact, quite painful.  He's not sure what to do about this, but he mentioned seeing a urologist (great, another doctor).  However, like I said earlier, he doesn't want me doing too many new things at once, so the urologist idea is tabled for the moment.  This problem actually made Dr. G question himself - he said "is this new or did I miss it the last time?".  I don't know the answer to that question either.  Maybe it was there, but the other problems were more prominent.  I don't know.  But it's definitely there now.


The burning is back:
My vagina has been burning on and off for about the last two weeks.  Dr. G actually has no answer!  He says from a visual standpoint, everything looks burn-free.  He actually admitted that he wasn't sure what to do about that.  In a way, I'm disappointed that he didn't have a solution for me, but it also makes me trust him more.  It's hard to trust someone who thinks he knows everything, and now Dr. G has proven that he doesn't think that - that there are things he doesn't know.  And to me, that makes him a better doctor.  With that said, I hope he/we can figure out what all the burning is about.


The discharge:
I told Dr. G how I've been having rivers of discharge for the last three weeks and he said, "yes!  Your ovaries are working!".  Apparently, normal women have a lot of discharge and it's nothing to worry about (however it is quite bothersome).  But it made him very hopeful that my estrogen levels have risen because now my ovaries are doing their job.  In his words, "most women are dry as the Sahara because they are taking birth control.  This is not normal".  So okay, my leaky vagina is normal.  Yes! One point for me!  I used the word normal in the same sentence as vagina!

Estradiol info:
I found out exactly what the base was in my new Estradiol gel - it's Acid Mantlebase - Dr. G says that it can be less irritating for some people because it has lipids to hold in moisture and act as a barrier and that it has an emollient affect.  My original Estradiol base was Methyl Cellulose, which is basically water, which is why he usually prescribes it because it tends to be less irritating, but I needed something more.

Anxiety Meds:
I plan to talk to my psych about changing from Clonazepam to something else because I'm just too tired.  Dr. G said that meds like Prozac and the like do have a libido side effects, but that it would be okay to try them for now if I need to get my anxiety down.  He also wants to consider a Diazapam suppository, which is basically Valium to help relax my pelvic floor.  But we're waiting on that as well.  Not too much at once.  He said anal suppository and I was like, "what what?!  You want me to put it in my butt?"  I do not want to put things in my butt.  But he said that he usually says to put it in the vagina, but since mine is so sensitive he worries that there will be a negative reaction.  So, I might have to put a suppository up my butt.  I'll do it, but I won't like it.  However, if it helps, I'll like the result.

Well, I think that's all.  We really did a lot yesterday and my brain was so fried I couldn't write this entry last night.  So I'm writing it now at work instead of doing work :).  Please ask any questions.  It's a lot of information.

Update

It's been a while since I wrote anything on this blog.  I guess I just wasn't in the mood.  But I do have some updates.

I started using the Estradiol gel about 6 weeks ago.  I'm supposed to apply it to the vestibule twice a day.  At first, I couldn't do it that frequently.  It burned and itched like crazy.  I was applying it three times on, one time off for a while, but it was still bothering me.  Finally, I called the doctor to find out if there was anything I could do to relieve the discomfort.  He told me to lower the frequency because the last thing he wanted was for it to become unbearable to me.  I asked him about using Vitamin E down there, but he said he really didn't want me putting anything down there except for the Estradiol.  So anyway, I don't know what happened, but it's like all I needed to do was talk to him and the irritation basically stopped!  It's so weird.  But it really doesn't bother me at all now.  So I've been applying it twice a day for several weeks now.  I guess I just needed to build up a bit of resistance for it.

On a possibly related note, you might remember that I was on my period (blah!) when I saw Dr. Goldstein 6 weeks ago, but the weird thing is that I haven't had my period since!  I stopped taking birth control about 9 months ago, but BC or no BC, my period has always been very regular.  I can only remember maybe one other time in my life when my period was this late.  Is it just a coincidence or could it be related to the fact that I'm putting hormone gel on my vagina?  If anything, I would think that the attempt to bring my hormone levels back to normal would help in making my period more regular because that's part of their job.  I dont' know, it's weird.  I keep feeling like I'm having cramps, so I put in a pad expecting it to start any minute, and then nothing.  I don't know what's going on with that.  In the back of my mind I'm thinking, okay well I'm going to Italy in a month so maybe if my period can wait another week or two I won't have to deal with it while I'm overseas.  But hey, do our periods ever choose the convenient option?  I don't think so!

On the emotional side, we are making slow, but steady, progress.  We have moved up to having genitals back in the picture.  Whoa!  It's been a long time.  We are doing what the therapist calls the "quiet hand".  This is where I place my husband's hand on the vagina area and he just rests it there.  No rubbing, no insertion of anything, it just lays there.  You wouldn't believe how emotional the first time made me.  It seems so simple, but it was really hard for me.  I don't know why.  I trust my husband completely; I knew he wouldn't go any further than what we agreed, but I was still scared.  I have built up some serious fear in my head through all of this.  After the first time we tried the quiet hand, I burst into tears.  At first I was disappointed that I didn't feel any kind of desirous feelings; even though I knew there was no possible way I would, it was still sad to me that I still can't feel that.  But we've done the quiet hand a couple more times and it's much better now.   Slow baby steps.

Lastly, Dr. G said that I wouldn't feel any difference with the Estradiol for at least 6 weeks.  Well it's been 6 weeks.  Sadly I do not feel any more horny at all.  I guess that part takes longer.  But I will say that my vagina is more moist these days.  Not a turned-on kind of moist, but just a general moistness.  So I guess that gel is doing something.

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.

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.