Lidocaine

So I got my 5% Lidocaine topical gel and applied it tonight. I wore gloves and smeared 1/4 of a small tube of gel all over my vestibule and also a little ways inside of my vagina. I then waited 20 minutes. Not only did it not numb me, but I experienced intense itching and burning. I immediately wiped it off, then took a shower to get rid of the rest of it. Even now, after the shower, I'm still feeling kind of raw and itchy.

I'm not sure whether this means I did not apply it correctly, or if I had some kind of allergic reaction. I'm going to call my doctor and find out.

Congenital Neuroproliferative Vestibulodynia

I went to see Dr. Goldstein today. He performed an examination, drew blood (to check my hormone levels) and then held the following consultation with me.

CONSULTATION 

At this point, it is highly unlikely that my pain is being caused simply due to contraceptives. For one, I wasn't on them that long (only 4 months or so before getting married). Also, my blood tests last time I came in showed my hormones were back at appropriate levels. So what that means is that whatever dryness or thinness the tissue was experiencing due to not having enough hormones should be rectified at this point, as much as it could be. However, I am still feeling pain, ranging from slight amounts to INTENSE pain (depending on where in the vulvar vestibule he touches with the Q-tip.)

Thus, it seems most likely that what I have is Congenital Neuroproliferative Vestibulodynia. Congenital means 'from birth', neuroproliferative means 'a proliferation of nerves, so basically, too many nerves' and vestibulodynia means 'pain of the vestibule area in the vagina. Women who have this condition can have up to 30 times the amount of nerve endings as should be there, which is a 3000% increase from what should be in there.

The presentation of Congenital Neuroproliferative Vestibulodynia is such that it presents as a burning, cutting, raw, searing, "hot knife" kind of pain. 

So what are my options now? 

There are three (the first two are akin to bandaids; only the third one actually solves the issue):

1) Systemic 

2) Topical

3) Surgical

Systemic: This is where they would have me take anti-depressants or anti-seizure medications, not for those illnesses, since I don't have them, but because they dull nerve endings. They can also have me take SRRIs. Side effects of all these medications are very serious (weight gain, nausea, intense sleepiness, lack of clarity of thought/ dulling of thought etc). Moreover, they do not work very well.

Topical: He can prescribe me LIDOCAINE which is a numbing ointment. I apply it topically to the area and wait 20 minutes before having penetrative sex. For some people, this works well. Problems with this are a) it wears off after a time (it will not always be so effective at numbing you out) b) sometimes it can start numbing your husband, too, which makes him lose his erection and c) there can never be any spontaneity to your sex life because you always have to apply this first. 

Alternatively, he can prescribe me CAPSAICIN which is the extract of chili peppers. The idea is that I would apply it topically which would cause ALL my nerve endings to fire at once, releasing Substance P. I would do this daily for months and basically be wearing the nerve endings down. After consistently making the nerve endings fire over and over again they get tired of doing it. So then I would need to apply it (if I understood him correctly, I'm not sure) at least twice a week for the rest of my life, because if I stop applying it, then the nerve endings go back to being full strength. This is the best non-surgical option because women who do this can get 70% relief for the most part. HOWEVER he does not really recommend it for me because it's basically causing all my nerve endings to fire full strength which means I would be in excruciating pain each time I put it on, especially at the beginning. He says in the end of the day it is up to me, but most women who try it call him up the next day and say "Dr. Goldstein, are you crazy?"

Surgical: I would have a surgery called a vestibulectomy where they basically remove very superficial layer of skin plus the nerve endings there, and replace it with the skin already in my vagina that does not feel pain (aka all the skin outside of Hart's Line). You can look of all the graphics and instructions of the surgery here (but ignore the pictures of hooks; they don't do it with hooks- med students hold it open instead) - also be aware that the graphic is kind of cartoon-y, and that you do not have such a large opening as it seems there. Your opening is normal-sized. They suture it up and I have 6 weeks of recovery time, with 3 weeks of absolutely not being able to go into work. I have to work with dilators to re-stretch the area afterwards, and while I won't feel this kind of pain, I will feel soreness (so a different kind of pain). The surgery is an outpatient procedure. Typically, hospital fees cost $3000. Dr. Goldstein's fee is $9000. He says that you WILL need to fight with your insurance to try to get this covered, and that people have successfully been able to recover up to 2/3 ($6500) back. However, this is with a lot of intense fighting, writing letters on legal stationary etc. Dr. Goldstein is happy to do a Peer-to-Peer Review if we can succeed in getting a doctor on the phone at the insurance company to explain a) why this surgery needs to be done and b) why he is the man to do the surgery. 

In terms of the surgery, there are mixed results. But in short, the vast majority of women experience real relief. The ones who still experience moderate pain are also the women who did not do the dilators nightly after having the surgery.

If I do the surgery, it should be with him. He has done 415 of them or so, and has had other researchers/ people who are not part of his department follow up with 215 women to find out how they fared. 207 of the women are now 100% better and can have pain-free sex. He advocates for my doing the surgery with him vs. anyone else because the devil is in the details and he has done the 2nd-most of these surgeries in the world (the only person who has done more of them than him is Dr. Jacob Bornstein in Israel).

If I want a second opinion to examine me, here are doctors he recommends:

1) Richard Marvel in Annapolis

2) Susan Kellogg in Philadelphia

3) David Foster in Rochester, NY

4) Irwin Goldstein in San Diego

5) Lara Burrows in Akron/DC (but she is also Dr. Goldstein's associate)

In terms of contraception, I should not go on birth control pills (especially if I plan to do the surgery) because the tissue needs to stay as healthy as possible. I cannot get a diaphragm inserted because it will be physically way too painful for me to put in (he thinks) and the same applies to an IUD. So I'm pretty much out of luck with contraception (if I don't do the surgery) unless a rabbi wants to give me a heter for condoms. 

Comparing

Something that I struggle with is comparing myself to others. Not only myself, but my life, my husband, the things I've accomplished. Instead of looking at myself and my life through the lens of: Am I satisfied with what I have done, am doing and where I am going, I instead have looked at it, for most of my life, as a comparison to someone else.

So much so that I actually felt embarrassed about dating some people who I really liked just because I was worried about what other people would say when they found out I was dating them. I worried other people would think that I was dating someone who wasn't handsome enough, wasn't good enough, didn't have enough wealth, didn't have enough material accomplishments.

I realized that if I let all this self-censure go, drop these comparisons at the door, I am able to live a much happier, healthier focused life. When I focus on the fact that I love my husband and I think he's handsome- no matter whether anyone else does or doesn't think so- I become happier. When I focus on the life that I lead and the fact that I am satisfied with it, I feel a lot happier.

This seems like a rather obvious realization, but for me, it wasn't at all obvious. First of all, comparing myself to others had gotten ingrained like a bad habit. And second of all, it isn't so easy to just stop.

But I'm working on it, and seeing positive effects. I am trying to focus on what I like and what pleases me instead of what I think other people will like or what will please them. Because there's something really wrong about me worrying about whether or not the person that I was dating was "handsome enough" or "good enough" to please someone else. After all, I'm the one who would have to live with him, aren't I?

Luckily for me, in the end the man I married is a gem. Part of the reason that I was able to marry him is because 1) I kept it a secret from a lot of people that I was dating him, which meant I didn't have to worry about their censure and 2) Someone I really respected did like him and thought it was great that I was dating him, which kind of gave me the green light. I am very lucky that this happened this way, because at that point in time I don't think I would have had enough courage to go ahead and marry him on my own, by myself, even if others didn't approve of him or think he was "enough."

My husband is so immensely supportive of me. He adores me. He loves me. He does his utmost to make me feel loved, and to talk about all the positives in our intimate life rather than the downsides. He goes out of his way to focus me on what is good in our lives. I love him very much. Unlike me, my husband doesn't care about the judgement of others aside from him. As soon as he had decided he wanted to marry me, I was "enough" in his eyes and nobody could sway him.

I think part of the reason we are afraid to admit our weaknesses to others is the fear that we will be seen as less-than, as "not enough." But my husband, who knows everything about our situation, including all the things that I find shameful, embarrassing, humiliating or sad that have happened to us, always looks at me with love in his eyes. To him, I am always "enough."

And that is such a blessing.

Everything's A Lot Better

I've been seeing a therapist. It happens to be a man, but that wasn't deliberate on my part- that was just the person who was recommended to me. This particular guy specializes at CBT- Cognitive Behavioral Therapy. Basically, the idea behind CBT is that it's a triangle. You have your thoughts, your feelings and your behaviors. If you break into the triangle at any point and change one of those, you can help change the rest of the triangle as well.

What I hadn't realized is that aside from the physical issue of having vestibulodynia, and thus pain upon penetrative sex, my thoughts and feelings were also causing problems for me in the sexual realm and beyond. Here's an example of a conversation that I had with my therapist that helped open my eyes.

Me: So basically, I hate sex, and I feel really guilty about it because I know it's supposed to be this amazing thing that everybody loves.

Doctor: Okay, but you're not really in the same situation as other people. In your experience, sex has been painful. So why would you like it?

Me: I dunno, but still I feel bad. And also, I feel like my poor husband doesn't get to be intimate with me because I don't want to be reminded of sex, and I mean, it's not fair to him, is it?

Doctor: Well, is there anything that you enjoy about sex?

I paused. I had to think about this question for a while.

Me: Well, I don't think I've really let myself enjoy it. I mean, not the penetrative part, which I obviously don't enjoy, but the other parts.

Anyway, I went home and realized that part of what was going on is that I had this idea in my head that I always had to be giving to my husband. I had to be the one making it possible for him to come, and that was my focus in our intimate encounters, which put a lot of pressure on me and made me feel like I only existed for his pleasure. (And yeah, I put this whole burden on myself, mentally- he was on the opposite side of the story, really just wanting me to feel good and I really wasn't letting him.)

(I actually think part of this idea is that I misappropriated some Jewish concepts of selflessness and giving and made them into this thing to sort of punish myself with. I know that the ideal relationship is supposed to be about giving to others, so I made that into my standard, and when I couldn't live up to the standard, was avoidant and felt pretty guilty.)

So I changed my tune. I decided, I'm going to be a little selfish in the bedroom. I'm going to allow myself to focus on myself. And guess what, I suddenly discovered I liked intimacy, as long as it was non-penetrative. In fact, it was fun. So I went back to my doc and discussed it.

Me: So I figured out how to improve our sex life- basically I decided to be selfish in the bedroom. To let my husband give to me, as well.

Doctor: So let me get this right- for your husband to give to you is selfish. Does this mean you think that pleasure for you in general is selfish?

Me: Yeah, well, pleasure where no one else is getting something out of it.

Doctor: Has it occurred to you that maybe it makes your husband feel good to give to you in that way?

I was uncomfortable and shook my head. But I've been thinking about it more. Clearly, my attitude about pleasure and giving is a bit messed up. I am going to have to work on fixing it, but in the meantime, everything is going a lot better with me, my husband, our intimate encounters and our lives. Therapy is really helping me. The best part about CBT in particular is that my doctor gives me homework assignments so that I can really see if I feel like I am growing and progressing and realize I'm not just stuck where I used to be.

Sinfully Safe Sex?

So interestingly enough, The Sisterhood Blog of The Forward newspaper has published an article documenting that Orthodox Jewish women experience a decrease in libido and sex drive while on the pill. Therefore, their solution is to use condoms.

I'm glad the article talks about the side effects of the pill, but I think if they really wanted to be thorough they should have consulted with people like Dr. Goldstein who could explain how the pill can also cause sexual pain (like I have experienced, at least in part). Moreover, I don't understand the solution to use condoms. Dr. Goldstein has told me that it is in my interest never to use contraceptive pills from now on, so obviously I will be looking into other birth control options. I don't quite understand why these women can't use diaphragms or IUDs (but then again, I haven't tried it myself yet).

It seems to me like the use of condoms, given the issues for observant women in terms of halacha, should be a last resort rather than the first step.

25% Better!

Today I went to see my doctor (Dr. Goldstein at the Center for Vulvo Vaginal Disorders). He performed an exam where he did the Q-tip test again, took a culture (because I thought I might have another yeast infection since I was experiencing some pain aside from my usual pain) and then discussed his findings with me.

The deal is that this time when he performed the Q-tip test I rated the pain from 3-6 as opposed to last time, when I rated it from 4-9. This means that the pain has decreased somewhat simply from me going off of my birth control pills and applying the estrogen/ testosterone cream. I am 25% better, so this is a good thing. However, I still have a ways to go.

The doctor and I have determined that I will continue with this treatment for the next 3 months, at which time the maximum benefit that I could potentially reap from this will be apparent. At that time, if I still feel pain, I may need to get a surgery (the vestibulectomy). So we will see.

Last time, when they took my blood, my hormone levels were in the dumpster. Now, the way birth control pills work is that they depress hormone levels to begin with. But apparently, I had a really weird reaction to the birth control pills in that they depressed my hormone levels more than they do those of others who are on the pill who don't get this kind of side effect. And the pill I was on, for those who are curious, is Yasmin (the generic is Ocella). So, to quote Dr. Goldstein "your hormone levels reflected those of a menopausal woman." Here I am, barely 25, and I've got the hormones of a 50-year-old menopausual woman. So the fact that I wasn't getting lubricated or aroused (my libido was not a happy one) was solidly due to the fact that my hormones wouldn't really be allowing for that.

They took my blood again this time, and the hope is that when they run their tests, the hormone levels should be back to normal.

I also learned that it's possible for yeast to be excreted via the rectum because if you eat a high-sugar diet (as I am wont to do), yeast can come that way. So even if I don't have a yeast infection in the vagina, I could be feeling irritated by yeast due to my diet- so I should stop eating lots of sugary foods, if I can. (This because he saw that the external part of me, the perineum, looked a little irritated- potentially by yeast).

Anyway, getting off the birth control pills meant that my vaginal tissue is a lot healthier now, looks less atrophied, and is all around happier.

Apparently there are actually studies that have been done that show that sexual dysfunction is often linked to the use of hormonal contraception. 

There's a bunch of fun side effects to having low estrogen levels. I wonder whether my moodiness this past year has been because of this. Gosh, that sucks- to be ingesting something into your body, thinking that you just want to get settled into your marriage, and yet that same thing is making you moody, depressed, anxious, unable to get lubricated as much as you should be and potentially dry and in sexual pain (in the worst case scenario).

Anyway, I HOPE that I can just get totally cured through this treatment and I won't need the surgery at all, but the doctor said that even if I do need the surgery, everything I am doing to get the tissue as healthy as possible is really important as the first step. So either way it's good.

Apprehensive

I meet with the doctor tomorrow. Guess we'll see what happens.