Disseminating Knowledge: The Road To a Pain-Free, Enjoyable Sex Life

So I've been thinking about all I have learned on this journey. I think I am probably going to go for the surgery, and we'll see how I fare with that, but even aside from that, there's a lot of knowledge I've gotten/ want to disseminate. Here's my list:

• Orthodox Jewish couples, when they are engaged, should read 'The Newlywed Guide to Marital Intimacy.' It is very clear, still tzniut, and even mentions pain (even though the only type of pain they mention is vaginismus, and their resources in the back do not include sexual pain guru, Dr. Goldstein). So there is definitely room for improvement, but this is still a great start for new couples to feel empowered and knowledgeable about sex. 

• In my opinion, all kallot should either wear tampons before they get married, and should seek guidance on how to insert them if they are confused about how, or should make a special appointment with a NICE gynecologist who will hold up a mirror to their vagina, show them where everything is and how it works and help them insert a finger into there, just so that they are totally familiar with their bodies and able to have sex without being afraid/ without having to rely on the man to know what to do (especially since, if the man is Orthodox, he's most likely never seen a woman's vagina or penetrated her before). 

• Every kallah should be taught what the hymen really is. That way, instead of being afraid of 'breaking the hymen' and having images of this flap of skin or tissue that the man has to break through, which sounds like he has to use force and plug into her like a needle piercing your ear, she will know from the beginning that the hymen is a vaginal RING of tissue which already has an opening because that is where the blood flows from, and the man's penis merely widens the opening. See more on this here. 

• If you are experiencing pain with sex, here's the road to take. 1) If you are totally new to sex, it might just be pressure/ the sensation of something new, so do try more than once, and do try adding lubricant (and try different kinds of lubricant, because maybe one kind will do it for you better than another kind) 2) Go to your gynecologist and check if you have a yeast infection or any other natural irritant that could be easily solved and 3) If you are still having pain with sex, do not ignore it, but rather make an appointment to see Dr. Andrew Goldstein in either DC, New York or Annapolis. Do not bother buying dilators or seeing other people before him; they might misdiagnose you; he has the highest chance of getting it right. Also, it is best if you go to see him ALONGSIDE your significant other or husband (if you feel that he can be supportive about this process). If possible, you and your partner want to be in this together so that the person experiencing pain does not end up feeling like everything is just 'on them' while you lolllygag along. (Obviously, this section may not apply if you were raped, abused or otherwise traumatized; it could still be worth it for you to see Dr. Goldstein, since that might not be all that is going on, but if you feel like the main issue is your anxiety or your psychological health, a sex therapist might be better. That having been said, I incorrectly thought for a time the main issue was anxiety, when in truth it is most likely a physical birth defect.) 

• Do not be ashamed of the pain you are feeling or consider yourself a freak. Rather, read 'When Sex Hurts' by Dr. Andrew Goldstein and see if you can get in touch with others like you (for example, me!) It is very helpful to speak to others who know what you are dealing with and who will not simply tell you that it will all be okay, but who can still respond knowledgeably and supportively to you.

• DO consider seeing a therapist to deal with the issues you are facing. It is very hard to have a unconsummated marriage/ pain with sex/ to not feel like a functioning woman/ possibly have a husband who feels bereft etc. There is no shame in seeing a therapist. There are some therapists who specialize in talking about this issue in particular; otherwise, just see any therapist who you feel could be helpful. I personally see a man who specializes in CBT and he has been very helpful to me.

• DO (if this is important to you) find a competent rabbi to ask your shailot to. My husband and I have a very competent one, who we can recommend to you if you are worried about asking a rabbi the kinds of questions that inevitably come up, such as whether you can have non-penetrative sexual fun (mutual masturbation etc) and so on. 

• Do find yourself people to support you throughout your journey. Whether it is a therapist, a family member or friends, you really do not want to be going through this alone. Even if you have the most amazing husband in the world (and I do), it is still better if you have someone else to help you, especially during those times when part of the issue might be your concern over how your husband will react to something etc. 

You can always write to me, and while I may not always have the time to answer, I do try to write back when I can. And I wish all of you good luck.

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.