Joy

I have a child now.
My husband is my lover.
Fully my lover. To the point that I think about him when I read romance novels and I get to the sex scenes and I smile. These were the scenes that used to make me cringe, make me feel like I was not a sexual being, like I lacked all femininity and sexuality. These were the scenes that used to make me angry at the world and at God for robbing me of pleasure. These were the scenes that made me walk around with a weight on my chest, feeling like it was me against the world.
And now these scenes excite me. They make me happy and glad and I can't wait till I can go enact them.
As for my child...my child has changed my life in every single way. I cannot possibly describe the depth of love I feel for this child. Everything about the child has brightened my life. I cannot remember the last time I was so joyful.
I was made for this. I was made to be a lover, a mother, and my life would have been so much poorer if I had given up earlier in the journey, certain that I could not ever enjoy sex or love. And yet, that is exactly what I was tempted to do. I look at my life now and I think about how I could never have envisioned this...never have imagined myself as the sexual person I am now and certainly not as ever being capable of achieving the goal of creating and birthing a child.
I am so grateful to God. I overflow with gratitude. Joy is my constant companion. I just want everyone else to be as suffused in it as I feel myself to be.
Don't get me wrong. Of course, I still have bad days, down days, days where there are small annoyances or major concerns. But these are nothing in comparison to the soul-wrenching, ship-rocking turmoil that attacked my marriage at the beginning of its inception. I would have drowned but I didn't...because he is amazing.
My husband. My lover. The most wonderful man on earth...for me.
Can't imagine my life without him.
We've come so far. Every so often it's nice to look back, take stock and feel grateful.
I just hope I can pass on the blessings. I hope other people struggling with sexual pain find the right doctors and the right treatment and find themselves in a happier place, physically and mentally, as well.
My husband is exactly the right mix of practical, playful, loving and deeply kind that I need. I know it takes a special spouse to support you through this difficult journey and I'm just so happy that I had one. And that now I have one who takes such obvious pleasure in raising our little one.
My husband makes me feel beautiful and desired. He also supported me through the worst time of my life and he continues to support me now as we work on raising our child. He is just...my favorite person.
I know it might be frustrating to read this post if you're still caught in the throes of your journey or if your significant other isn't necessarily being the most helpful to you right now. But it can get better. I am proof of that. And I really hope it does get better for you.

Mother

I am a mother.
It is a strange and incredible label to apply to me, after all that has happened and doubtless will continue to happen.
Hope is possible.
Love is transformative.
And a child is a piece of God.

Divergent

I recently saw the "Divergent" movie.

There are several changes between the book and the movie, but the one that bothered me the most had to do with the simulated rape scene between Tobias and Tris.  (To explain, Tris in her simulation believes that Tobias will harm her/ rape her and she has to fight him off.) The entire point of Tobias' relationship with Tris is that he is not coercive, he is emotionally open to her and he listens to her. Her fear is not a fear of being raped. Her fear is a fear of intimacy in general. She is afraid of being that vulnerable, that open to somebody. In the book, he wants to sleep with her (in the simulation) and her response is that she doesn't want to sleep with him in a simulation and she kisses him, and that's enough for her to be able to move on to the next sim. It's about her being able to set up emotional boundaries, not her actual fear of him physically harming or disrespecting her. And it's about her fear of beautiful sex, not her fear of violent rape.

It upsets me that this fear -which I think is nuanced and important and reflective of some of the women who struggle with sexual dysfunction- was not seen as "valid" enough to transmit to the big screen, and instead her fear had to become one of sexual assault and rape.

We understand fear of sexual assault and rape. It may be harder to understand that a woman would be afraid of going too fast with someone she cares about or even loves, that she might be afraid of being bare, of being vulnerable. But I think that's the more important narrative to tell specifically because it is hard to understand.

Incredible

You know that tagline, "It Gets Better"?

Well- it DOES get better.

First, the amount of time that I needed to dilate prior to having sex diminished. I started to realize that I was simply feeling readier faster. I've come up with a theory, which is the following: Right after mikvah, your vagina hasn't been stretched recently (because you've had 2 weeks or so without sex or dilators). So that first time, you have to dilate for a while, say 15-20 minutes. Maybe even longer. (The other option, of course, would be to dilate while you have your period; I never really liked doing that). But as you have sex more frequently, and your vagina adapts itself like the stretchy, fun muscle that it is, you realize you have to dilate less and less frequently.

And then comes that time when you realize that actually...YOU DON'T HAVE TO DILATE AT ALL. 

Because you and your husband can go have spontaneous sex. You can flirt and dance your way to the bedroom and fall onto the bed in a tangled heap, after which you can have him arouse you, and excite you, and otherwise make sure you're ready. And then, you just have to run your hand over him with some oil or some lubricant, and you're ready to make love. 

No dilators. No preparation. Just you and him. Together at last.

Enjoying this experience.

No, actually LOVING this experience.

Already looking forward to the next time that you'll get to do this.

Having a happy, pleasurable, love-making experience.

100% better! 

And so I've become a Happy Jewish Girl.

An awesome doctor (Dr. Goldstein), an awesome CBT therapist, and a supportive and loving husband got me there.

Here are some things I never thought I'd say:

I actually love sex.

Love the closeness.

Love the foreplay.

Love the feelings.

Love that my husband and I have traveled so far and have gotten to this amazing place. 

Guess I wasn't made to be a nun after all! 

I plan to keep writing, but also just want to express that this blog, this journey, is about hope.

When I started this blog, I needed an outlet, a place to vent, a place to cry and wail and lash out against the world. 

I wanted to talk about my embarrassment in not even knowing my own anatomy.

I needed to feel like I wasn't all alone.

Like I wasn't crazy.

I needed to share that I was in incredible pain and nothing was helping.

Physical pain. Emotional anguish. Guilt. Feeling like this was all my fault while lashing out at my husband.

Talking about how sex was impossible.

That I was considering a divorce.

The way I treated my husband.

The darkness we were going through.

Thinking I was being punished for my sins.

Thinking God was angry with me.

Doing anything possible to avoid having sex.

Being cruel.

Being sad.

Falling into despair.

I'm not despairing anymore.

I'm thrilled.

I'm in love with the amazing man I married.

I love that we get to be together and that it's a fabulous experience, spiritually, physically and otherwise.

I feel pleasure.

I feel alive.

If you are living through the hell my husband and I lived through,

Do not give up hope.

Do not despair.

There may be a solution.

Talk to Dr. Goldstein about it.

Do the surgery (if you have what I had).

And even if there isn't a solution yet-

there might be, one day.

We'll be hoping for you,

praying for you,

wanting you to join us in our

happiness.

Happiness!

An incredible word.

An incredible sensation.

An incredible high.

My husband and I went through hell and back.

This was our journey.

We are the champions.

Grudge Match: SJG vs. The Insurance Company

Have you ever seen the movie "The Rainmaker"?

If you haven't, go watch the trailer right now. Because if you're planning to have a vestibulectomy, you are probably going to end up living your own version of "The Rainmaker."

You would think that it would be simple. You're on insurance which only allows you to go to in-network providers. So you go through the complicated, difficult process of getting a Clinical Gap Exception, which means that your operation will be considered an in-network procedure. You shell out the money (in this case, $9000) to Dr. Goldstein and then you file your claim in order to get reimbursed. My in-network plan covered me 100%, so I was owed a check for $9000.

Here's what actually happened:

1) United Healthcare never received my claim when I mailed it to them.
2) I faxed it to them three more times and it took three times (and two different fax numbers) for them to finally receive my claim. They refused to allow me to send it to them by email (which would enable a person to say they had actually gotten it) because they are "not set up to handle claims by email."
3) They denied my claim, saying that I had had my procedure out of network.
4) I showed them the letter they wrote me in which they said that they would cover my procedure at the in-network level because they lacked specialists and doctors who could perform the procedure.
5) People at United Healthcare were completely incompetent and couldn't read English. First, they said I never got a clinical gap exception because they looked at the wrong one (the one that I had tried to get but which had been shut down because I did not provide the proper CPC codes at that time). Then, when I directed them to the correct one, they said their original letter meant that only the procedure would be covered, but not the doctor. I asked them how exactly one could have surgery without a doctor performing it. Then they said that I was supposed to have my procedure on March 1st and I was in violation of the gap by having my procedure in June. I pointed out the letter they mailed me giving me permission to have the procedure was postmarked March 4th, so that made no sense, and that I had, from the very beginning, said I was going to have my procedure in June. Then they said the letter I received wasn't a Clinical Gap Exception. I asked them why it had the word 'Gap' on it. Their bottom line was they couldn't help me and my claim was denied.
6) I submitted a Letter of Appeal explaining exactly why I was owed the money.
7) The Letter of Appeal was denied because I had had an "out of network procedure" and therefore had to pay for everything myself. It was like they didn't even bother to read anything I had written in the Letter of Appeal.
8) I spoke to a Rapid Resolution Specialist and other high-up United Healthcare people and referenced my Clinical Gap Exception, which was in direct conflict with the denial they had sent me. Lower-down people at UHC sympathized with me and said so, but the higher-up people just issued flat denials or made it seem as though I was somehow at fault for their inability to honor their own clinical gap.
9) I filed an appeal/ letter of complaint with my State's Insurance Administration.
10) The State spoke to United Healthcare and told them what they were doing was wrong, illegal, and they had better pay up. (At least, that's what I assume they said, because absolutely nothing had changed from when I talked to UHC and when they talked to UHC).
11) I got a letter from UHC in the mail which read exactly the same as the letter that I originally received to tell me that my Letter of Appeal was denied, but which said 'CORRECTED LETTER' on top and had two lines that were different. The first line told me that my claim would now be covered. The second line apologized for the inconvenience.
12) I got my $9000 check.

As you can see, I went through A LOT of heartache and hassle to finally get my check. It took 5 months from the time of my surgery for me to get my check, and it was only that fast because of my constant badgering of the insurance people and my prompt filing and faxing of claims and letters of appeal. These were five months of constant mental anguish, agony, and frustration, worry that I would never get reimbursed and would owe the people I borrowed money from $9000, and concern that I would need to hire a lawyer and actually sue UHC in court. I think everyone would agree that it should not be this hard to receive money you are legitimately owed.

In order to make sure that you don't have this happen to you, you need to insist that when they give you a Clinical Gap Exception, they write into the Clinical Gap Exception the date you will be having the procedure, who you will be having the procedure with and where it will be held. That way, they cannot claim later on that they had issues regarding the 'date of service' and that you were supposed to have your procedure on an earlier date. Also, save every single document they send you, because you are going to need to be the one to have the service numbers and claim numbers to reference to the incompetent employees who man the phone lines. But even with that, you will probably end up in a situation like mine, having to sic the state on them before they pay up. (And you will only be allowed to do that after having exhausted every single possible other option, which means you'll have to go through the writing of appeal letters first, etc). Because insurance companies (and especially United Healthcare) make money off of being evil, and off of hoping that people will simply give up after their claims are denied time and time again. And I'm sure many people do give up. I couldn't afford to, because it wasn't my $9000 to give up on- I had borrowed it from, and owed it to, someone else.

You can see the full story of all the nonsense that happened until the point where I had to file an appeal with the State's Insurance Administration in my Letter of Appeal (which was originally denied, but which I had fun writing) below:

September 9, 2013

Letter of Appeal to Claim #

To Whom It May Concern,

This is an appeal to Claim #__________. My name is SJG. My current UHC Member ID is _______ and my birthday is _______. Upon marrying my husband, I discovered something quite upsetting- I could not have sex. This was not because I did not want to have sex, but because sex was excruciatingly painful for me. After seeing seven different doctors, I finally found a specialist who could diagnose me. I was diagnosed with congenital neuroproliferative vestibulodynia (which means that I had a birth defect of too many nerve endings in the vestibular region of the vagina). A highly specialized surgery called a vulvar vestibulectomy was called for.

At this point in time (during the 2012-2013 year) I was on a UHC HMO plan. This meant I could only see doctors in-network. Unfortunately, no in-network doctor could perform such a highly specialized surgery. This meant that I needed to contact United Healthcare to file a clinical gap exception. This was a mysterious process not explained clearly anywhere on your website, but I managed to learn that my primary physician, _______, needed to call you to explain that she had referred me to Dr. Andrew Goldstein, a doctor who could perform the surgery in question. She needed to call United Healthcare Care Coordination at 1-800-638-7204, explain that she was calling on behalf of SJG, whose member ID was _____ and explain that I would be having surgery as an OUTPATIENT procedure on ________, at 7:30am at the ______. She called sometime during the week of February 18, 2013 and provided United Healthcare with all of this information.

Unfortunately, at the time that Dr. _________ called, she did not provide United Healthcare with CPC codes for the procedure in question. Therefore, they shut down this first attempt at getting a Clinical Gap Exception and did not notify me (or her) of the fact that they had shut it down. Only after I called to follow up did I find out that this first attempt had been shut down. I then called Dr. ________ again, gave her the proper CPC codes, and she called United Healthcare again. This time, the clinical gap exception was approved.

I received a letter dated March 4, 2013 with the Service Reference #_______ indicating that my clinical gap exception had been approved. (A copy of this letter is included in the documents I am faxing to you). This letter began with the paragraph:

“On 3-01-2013, we reviewed your request to cover Vulvar Vestibulectomy for you provided by Andrew Goldstein. We are pleased to inform you that the health care services will be covered at the network level. Although Andrew Goldstein are outside your health benefit plan’s network, we will cover the services at the network level because at this time we do not have a physician, facility or other health care professional within your network or area to provide these services.”

For the 2012-2013 year, my in-network coverage rate was 100%. (Please note that this has changed, because my plan has changed. The plan I am currently on, for the 2013-2014 year, and which began on ____, 2013, is a HSA plan, and therefore has different coverage rates.) The letter mentioned above indicated that my Clinical Gap Exception would therefore cover the entire cost of my surgery. Overjoyed, I called United Healthcare back to check that this was indeed what the letter meant and that I would be fully covered. The customer representatives that I spoke to assured me that this was the case.  You are welcome to pull the phone calls that I made from the phone number _________ and listen to them to see this is the case.

On ________, I did indeed undergo surgery with Dr. Goldstein. I paid $9000.00 out of pocket to the doctor, and obviously wished to have this reimbursed at the in-network level as I had been promised. In early July, I received the pathology report and results of the surgery from the doctor. On July___, I sent the claim form, Letter of Necessity that Dr. Goldstein had provided, Clinical Gap Exception letter and pathology report to the PO box for medical claims listed on the back of my United Healthcare card. I waited and waited, but heard nothing about my claim. A month later, I called and discovered that UHC had never received the claim. I requested to send it in by email so that I could confirm that someone at UHC received it, but was told that UHC was not currently outfitted to receive claims by email. I therefore resent it on August ___ to the fax number 248-733-6000. When I called to follow up, UHC had still not received my claim. I then resent it to the fax number 612-234-0295 on August ___.

At this point, as you can imagine, I was extremely frustrated that I had had to submit my claim three times for UHC to finally receive it. I then received a letter via the mail with the Reference # __________________. This letter stated “we reviewed your request for you for $9000.00. Unfortunately, we do not have a record of a claim for this amount.” Since I had submitted my claim for the third time I knew this could not be correct. I immediately called UHC to follow up. At this point, I was told that my claim could not be processed because my clinical gap exception had not been approved. This was incorrect; the person on the other side of the phone was looking at the first attempt at filing a clinical gap exception which had been shut down due to the lack of CPC codes. She was not looking at the later attempt at filing the clinical gap exception which had been deemed correct.

Once the fact that I did indeed have a valid gap exception was sorted out, the person on the other side of the phone told me that the words “On 3-01-2013, we reviewed your request to cover Vulvar Vestibulectomy for you provided by Andrew Goldstein” meant that the date of service for my surgery was 3-01-2013. I attempted (to no avail) to explain to the representative that she did not understand the English language. The fact that UHC told me that they reviewed my request to cover surgery on March 1^st does not mean that the date that I would actually have the surgery was on March 1^st. The representative told me that I should “change the first lines of the letter” and resubmit it as an appeal. This made absolutely no sense because I cannot simply white-out lines of a letter that UHC sent me and pretend that you reviewed my request for the clinical gap exception on __date of surgery_when you reviewed it on March 1^st.

I called back UHC today, September 9, 2013. I was transferred to a male regulator named Lynn who informed me that an error had been made by UHC in UHC’s system. When UHC input the date of service for the clinical gap exception, they erroneously indicated that it would take place on March 1, 2013. While inpatient procedures can apparently be changed by regulators, outpatient procedures cannot. Lynn therefore advised me to write you this letter and send you all of my documentation to request that you a) change the date of service in your system for the clinical gap exception to _date of surgery_and b) please reimburse me for the $9000 I have paid to have this surgery.

In addition to this letter explaining everything that has occurred, I am sending you documentation that includes:

·         My Claim Form

·         My Clinical Gap Exception

·         A Letter of Necessity explaining why I needed this procedure and which CPC codes were used

·         Receipt for Surgery

·         The Operating Room Report, explaining my diagnosis and the doctor’s findings

·         The Pathology Report, which indicates that I did indeed have congenital neuroproliferative vestibulodynia.

I have spent (at minimum) a good ten hours of my time attempting to submit this claim in a way where you would actually receive it, having phone conversations with various incompetent UHC representatives and now writing this appeal to you. Please honor the Clinical Gap Exception you provided me with and reimburse me for the $9000 that I spent in order to be physically able to have sex with my husband. I would also appreciate a letter of apology for all of the aggravation that I have been caused for errors that were made by UHC during this process (these include: not looking at the correct clinical gap exception, not knowing how to read English, suggesting that I white-out and forge parts of my Clinical Gap Exception, apparently putting the wrong date of service into the system.)

If you have any questions, or are confused by anything I have written, please call me at ___________.

Thank you,

SJG

Not Perfect

I may have spoken too soon.

Now that my husband and I get to have normal intimacy (yeah!), I've been discovering a couple of things:

The first dilator insertion, no matter the size, always hurts.

But more than this, I've been realizing that the friction of his going back and forth seems to be somewhat irritating on the inside. I'm somewhat raw/ still not stretched enough.

Now, this is not anything like the pain I used to experience. But it's not 100% pleasurable, either. I'd say that my pain has gotten 85-90% better, but it is not perfect.

However, I am not sure whether this is something that will get better with time, as we continue to be intimate.

Or alternatively, whether this is something I caused myself because I delayed doing the dilators (and the doctor had specifically told me to do them every day as soon as possible).

Or whether this is something I caused myself because I didn't do dilators during my Niddah period, so maybe now I've backslid and I have to work harder at loosening up again.

I guess I'll find out when I visit the doctor...
Even this reality is a lot better than where we were before. I can deal with 85% better. I'm grateful for 85% better.

Success

I had the surgery.
My wonderful husband got me ice packs, rented movies, and listened to me complain during the 6 weeks that I was either entirely motionless or walking about in very limited fashion.
I saw the doctor.
He told me to do dilators every day for 10 minutes, moving up in size when the size I had started with felt comfortable.
I avoided doing the dilators for weeks, even though I knew that wasn't intelligent. My husband talked me into doing them.
I started doing them diligently. Even when lubricated, the first one still hurt a little bit- almost like a twinge of pain. I think this may have been because I tensed due to my fear that I would feel pain. But then, I started to realize that if I really did put in those 10 minutes every day or night, I could see the results. The muscles were being stretched. I was being stretched. The pain dissipated after that first insertion.
The longer amount of time I took, the more comfortable the dilators felt. I started to advance to the largest sizes.
I started being able to fit the largest size. I also practiced inserting the dildo.
The doctor had said I could wait till he gave me the green light in November to go ahead and try to make love, but I felt ready.
The dilators fit. The pain was gone. There was some soreness, and some twinges of pain, but this is what the doctor had told me to expect, and it was nothing like what I had felt before. Then, it was excruciating. Now, it was normal pain.
I was ready.
My husband and I made love. It worked. It wasn't painful.
We laughed. We teared up. It's like we're on our honeymoon.
And just like many virgins doubtless discover on their honeymoon, I learned that too much sex (without enough breathing time in between) makes me sore, and that I need to take breaks. But that's a normal discovery, one that many women share.
I learned that I still feel that twinge of pain every time I insert the first dilator, and that if I don't take my time to ensure that I've really dilated properly, I'll feel pain during intercourse as well. The doctor told me the first 10-15 times I have sex, I need to really dilate well. I'll probably continue doing it past that recommended number of times.
But if I follow instructions, lubricate my dilators, and dilate for a while (I prefer 20 minutes to a mere 10), then my husband and I can make love. We can discover new positions. We can have fun. We can even- unbelievably- take sex for granted. Not even really think about it. Because now we know we can do it. We can have it. We've got it.
Those first few times, we were overcome. By gratitude. By happiness. By astonishment. But we were also giggling as we struggled to figure out how everything worked- now that we could figure those things out, now that the surgery had been successful.
And now- unbelievably- it's a normal thing for us. Which it shouldn't be. I want to try to retain that sense of wonder. But it's hard to do that when things are working normally. We should get up every day and stare at our hand and say, "Wow, this hand is so amazing. It can grasp objects. Its fingers can type words. It can stroke a child's hair. It can caress my husband." But in the hustle and bustle of life, we don't do that. We take it for granted. Because we can.
And now we're in that stage. The stage we want to try to get out of, since we know we shouldn't take it for granted. Because it took such a long time to get here. But we're here. We've arrived. Everything works. We have the mind-space to think about other things. To worry about other things. To move on. To be happy. To be in love. To fall into bed together.
We owe the doctor. We owe God. We owe my husband's persistence in deciding we needed to stay together. The husband who deals with my self-doubt when, lying in bed, I wonder whether I made this all up. Whether if I had just done my dilators diligently to begin with, I would have been able to have sex normally. Whether the surgery is just a placebo effect. But my husband was there with me through all of it, and he reassures me this was not in my head. It was real pain. It really existed. It made physicality between us impossible. And I find it hard to believe him because I - blessedly- have actually forgotten that pain. Not entirely. But enough. Enough to doubt it. Enough to wonder.
And then I see that yes, that first dilator always hurts- there's that twinge of pain- but then they stop hurting. And that never happened with the dilators before now. They always hurt. Every time they were inserted. Every single time. So no. It wasn't all in my head. It was real.
Now it's close to being over.
And we're beginning.
Me. My husband. Our future children. Our family.
God blessed me. Or perhaps, as it says in the Bible, He remembered me.
I get anxious when things are going well. I feel concerned that I'm due for something bad.
Luckily, even if something bad happens, I know my husband will help me with it. I know my friends will care. I'm hopeful that I'll make it out, not only alive, but happily. As I am now. I'm happy now. I can be with my husband. Really be with him. It's an incredible ability. We can be one.
It's beautiful.

Breakthrough

First of all, the surgery WORKED!

I can now insert tampons/ fingers/ dilators into myself without experiencing the incredible excruciating pain I used to experience at the vestibular region. I do still tense up, because my brain expects the pain, but hopefully over time that will go away. I also do still have twinges of pain where the suture line is, but that's what dilator therapy will help with.

I now have to do dilator therapy for a minimum of three months (10 minutes every night). At first I was really hating it, but then I decided to experiment with doing it while in the bath. This was much more comfortable (I have to check with the doctor to see whether it is okay). More importantly, as I inserted the dilator in and out, I actually FELT PLEASURE. Like, I may have the beginning of an inkling about what this whole sex thing is all about, and what it's supposed to feel like. This is incredibly exciting.

Six Weeks!

I've reached my six week mark (six weeks post-op) and I'm up and about now. I'm able to walk and resume most normal activities (with the exception of strenuous activities like exercising, dancing and so forth). I have been feeling some pain when walking for a while, and I'm not sure if that will dissipate over time or whether that has to do with my pulling on the stitches (which do not seem to have all dissolved as of yet).

I am looking forward to my appointment with Dr. Goldstein, and I'll let you know what he tells me when I see him!

Sex & Pain: Audio Class on Sexual Disorders, Unconsummated Marriages, Mindfulness and Couple Dynamics

Dr. Tammy Nelson (sex therapist and sexologist) and Talli Rosenbaum (an AASECT certified sex therapist and physiotherapist) have put together a teleclass on Sex & Pain. The class is divided into two parts. Part One is entitled 'Understanding and Treating Sexual Pain Disorders' while Part Two is 'Exploring the Dynamics of Anxiety and Pain: Unconsummated Relationships and Sexual Aversion.' It costs $99 to download and is a two hour class. It is approved for two AASECT CEs. Please be aware that in exchange for writing this synopsis and review, I was able to listen to the class for free.

My impression of this class is that it is sophisticated enough that someone who is entirely new to sexual dysfunction (someone who has just been diagnosed) will not benefit from listening to Part One (the first hour). For example, the two doctors mention dilators and dilation without explaining that this is a form of therapy for those who are diagnosed with some type of pelvic floor dysfunction (such as vaginismus) and simply assume that you are familiar with this course of treatment. I do think that Part Two (the second hour of the class), which focuses on unconsummated relationships, fear, anxiety, shame and embarrassment, awareness of sensations, self-pleasure (not even sexual self-pleasure, necessarily) is of benefit to anyone who is currently in an unconsummated relationship, and that any layperson can listen to and benefit from this section. The entire class (both hours) is of great benefit to someone who either has a medical background or is a layperson who has already begun a course of treatment, is in the middle of a course of treatment or has concluded a course of treatment but wants to learn more about sexual dysfunction.

Let me caution you that the first hour of the class really hones in on pelvic floor dysfunction and vaginismus primarily, and not so much on vestibulodynia (the condition that I have). Primary vestibulodynia, specifically the congenital kind, which I have, did not respond to these treatments, mainly because the treatments discussed by Talli and Tammy hone in on the mind-body connection with the pelvic floor muscles, while my issue is with the nerve endings. That's why I ended up having a vestibulectomy (a surgery to remove the vestibule). So if you have primary vulvodynia or vestibulodynia, you may not find this class so helpful to you personally, although it does provide an interesting overview and treatment approach to other types of sexual disorders centered in the pelvic floor. Therefore, I think the title 'Understanding and Treating Sexual Pain Disorders' is misleading and overly broad, because the focus in the lecture was only really on pelvic floor disorders, and not on what to do if one is suffering from primary vestibulodynia, pudendal neuralgia, endometriosis etc. That having been noted, one of the benefits of the class is that the doctors do discuss mind-body connections, issues such as strategies to rekindle or recover a sexual relationship after cancer or childbirth, and hone in on problems to do with terminology and language (such as "success" and "failure" and achievement) and the importance of resisting goal-oriented intercourse. They also focus on the importance of including both members of the couple in the therapeutic process, and refraining from pathologizing the female partner. I loved the second hour of the class, which focused on 'Unconsummated Marriages and Sexual Aversion.' I learned a lot of information that I did not formerly know about role identity, couple dynamics, treatment options, distress levels and how it affects couples, and I was fascinated to learn that there are so many different reasons behind why people find themselves in this situation and their reasons for coming in for treatment (it could be different from what you would initially assume!)

Both Tammy and Talli are sympathetic, kind women who speak very clearly and articulately about the issues. A quote early on in the lecture from Talli emphasizes this, when she says, "When we are giving education about sexuality, it is always obvious to us that sexual intercourse cannot occur without the male erection, which would include male arousal, yet we don't always educate women that physiologically speaking, the best conditions for intercourse for women are that they also need to have their arousal, their quote unquote erection." While Talli is speaking about the fact that some women simply do not know that they need to be aroused and lubricated prior to intercourse, I think this idea really resonates with women who are experiencing sexual dysfunction. In many cases, just as penetrative sex is not possible without an erection, penetrative (and sometimes even other types of sex) is not possible for women who are in pain.

Talli explains that there are many causes for painful intercourse. She lists sources of pain including insufficient arousal or lubrication, yeast infections (transient causes), dryness as a result of decreased estrogen levels that occur with menopause, skin conditions, the muscles of the pelvic floor tightening up as a response to pain (causing intercourse to be even more painful), vaginismus, provoked vestibulodynia (may be caused by hormone changes, often a result of using oral contraceptives, or alternatively nerve fibers increase at entry to the vagina, which is the kind Dr. Goldstein believes I have). She explains that the word 'dyspareunia' simply means painful intercourse; it does not explain causes.

Talli then talks about the way sexual pain disorders are characterized in the DSM (the diagnostic manual). Sexual Pain Disorders have classically been divided into vaginismus and dyspareunia. Vaginismus implies a "fear-based, reactive, inability to allow vaginal penetration." Vaginismus has to do with fear, anxiety and the tightening of the muscles. Dyspareunia generally implies that intercourse can occur, but it's painful. There are have been new recommendations for the DSM-V to lump it all together and not distinguish them. However, Talli claims that "Both dyspareunia and vaginismus have been associated with physical pain as well as psychological characteristics of anxiety, fear, aversion and disgust." She explains that nowadays sexual pain disorders are considered multifactorial. She notes that decreased self-efficacy, catastrophizing and anxiety have all been associated with sexual pain disorders. (While I had many of these thoughts/ problematic coping strategies prior to discovering I had sexual pain, this is probably part of the reason that Cognitive Behavioral Therapy was so helpful to me.) She implies, especially when discussing social responses (such as negative thoughts, feelings of guilt etc) but does not state clearly enough, that sometimes these occur because of the physical manifestation of pain. Luckily, Tammy steps in and clarifies that sometimes this can be a very circular process, as depicted in the following diagram taken from Dr. Goldstein's slideshow on this topic.

Talli provides clarity regarding how a patient should proceed given the many factors needed in their treatment. Given the fact that sexual pain disorders present with both physical and psychological components, it follows that a patient will probably need treatment that addresses both of these areas.
She explains specific benefits of physical therapy which might not at first be apparent to a patient considering this form of treatment. She also outlines exactly what the pelvic floor is, where it sits, and why physical therapy can be beneficial in these circumstances.  She offers a model where a physical therapist will focus on the pelvic floor while a sex therapist focuses on the couple's issues, however, she also highlights problems with that model. Chief among these problems is that it compartmentalizes the patient, while Talli believes that the pelvic floor and its contractions are related to a woman's emotional state, and therefore has to do with psychology. Therefore, she prefers a more integrated model. She cites studies that support the idea that there is a link between pelvic floor reactivity or tightness and psychological traits.

Talli is a proponent of a mindfulness approach that focuses on the conflict between the cognitive side (the woman who comes to the doctor and says, "Please help me and do what needs to be done; ignore my responses and put the dilators in") where she is dissociating during the process and the emotional/ psychological side (where the patient is expressing anxiety or their muscles are tightening up). Talli would start very slow and build up, and start with opening legs, then opening legs without a blanket on you, and then without your pants on, and would have the patients note during this process of gradual exposure, where their level of anxiety is. She asks practitioners to avoid infantilizing their clients by cheering them on for putting in dilators, especially because the patient needs to have her own autonomy and set her own boundaries. She mentions the need to empower women rather than urging them to relax and submit.

I can only speak from my own experience here, and I have a mixed response to this. On the one hand, when I went to the Center for Medical Sexuality in Manhattan and was incorrectly diagnosed with vaginismus, it was empowering for me to have the dilators slide inside me and realize that I could do it even if it hurt. I think if I had spent my time checking my anxiety levels and slowly building up, I would simply have wasted even more years of my life without a solution, making what I thought was progress, but what in fact, for me, was not. For me, pelvic floor therapy (which I tried after my time at the Center) was entirely unhelpful (although at first, I incorrectly thought it was helping, probably because I really wanted to feel like I was making progress) but that's because I have the congenital version of vestibulodynia, and hence my muscles are not the problem- my nerve endings are. My concern with the mindfulness approach is that if you focus in on the patient's anxiety to this extent, then the opportunity for spending an extended period of time living with a misdiagnosis triples. I walked into Dr. Goldstein's office convinced that I was suffering from anxiety, clenching my muscles too hard and causing my own pain only to discover this wasn't my fault and that this was a physiological issue beyond my control. So I would say that I personally am in favor of going to someone like Dr. Goldstein in order to ensure that you receive the correct diagnosis first. Only then, if you have a pelvic-floor-based disorder such as vaginismus, would the mindfulness approach be appropriate for you.

Tammy raises the possibility that women who experience sexual pain are often diagnosed with trauma (such as having been sexually abused) and Talli counters that actually, it doesn't even need to be a sexual trauma. If having sexual pain causes you to feel out of control, you may be triggered and respond as you would in a different situation where you feel powerless or out of control, or a prior trauma. This is an interesting theory when it comes to looking at how different women respond to sexual pain. For instance, my first response was denial that I was even in pain, while my husband obviously was aware that I was in intense pain and was the one who decided I needed to see my gynecologist (I had not even wanted to take that step) and begin our journey. It makes sense to me that the reason I denied I was in pain had a lot to do with my tendencies towards perfectionism (and at least, to be 'normal' or 'typical,' having had issues with being an outcast as a child) and my fear that if I did indeed have this type of pain, that would make me abnormal, putting me back into a situation I had thought I had outgrown.

Talli & Tammy then get into the couples dynamic and how that is impacted by sexual pain. Tammy notes that  in her experience, the husband or male partner has the hardest time getting back into sexual intercourse because they are so afraid to hurt their partner again. The two discuss strategies that the couple can use to move forward. Talli identifies the need to cope with the feeling of loss - there's something that was, that now is no longer (in a situation where cancer or childbirth or something like that has changed the sexual dynamic, so a secondary cause), which is of course different from a situation like mine (with a primary cause), where we never had a typical sex life to begin with. Talli also mentions the amazing benefit sex therapists can play in allowing the couple to incorporate sensual exercises to take the focus off of intercourse (something which my husband and I did try, and which was helpful at that point in our journey).

Talli works with the Orthodox and ultra-Orthodox Jewish population, which, while being very sex-positive, forbids premarital sex. She talks about the added anxiety in this faith-based culture due to the fact that it's a mitzvah to have sex once married, and therefore if a woman can't, she feels like she is failing in this religious way as well. Tammy counters by saying that in the United States, she is more familiar with the population of people who won't have sex due to lack of desire or interest rather than couples with unconsummated marriages due to physical pain or anxiety. She focuses on the need to figure out where the distress is coming from when a couple comes to see the sex therapist. She also focuses on the need to not bring in their own bias as sex therapists (some couples may be happy not having sex). It can happen that one member of the couple is distressed and the other is not, which is what will cause difficulties. Tammy notes that this appears when couples come in with desire discrepancy.

Talli and Tammy explore the experience of couples in unconsummated relationships, and offer strategies for how to help these individuals. She says that generally when people come in with an unconsummated relationship, it is assumed that the problem lies either with the male (erectile dysfunction or premature ejaculation) or the female (vaginismus or dyspareunia). She cautions, however, that there is more to consider.  It could also have to do with simple lack of information- no understanding of what to do and how to do it. Sometimes, there can also be communication problems due to not knowing terms for one's anatomical parts. And she mentions that this is not limited to faith-based cultures, and that it can happen with individuals who are completely Westernized who simply did not receive a good sex education. OCD, aversions, tactile issues, sexual orientation and certain mental illnesses can also play a role.

I really enjoyed peeking into the mind of the therapist during the second hour, and seeing what kinds of behavioral interventions and strategies they might give, and what they look out for in terms of couple dynamics. There was a focus on the diversity of the patient population who appears, and what each couple wants, the interplay of the cultural and religious issues and restrictions...it's sociologically super interesting. I thought this hour of the lecture was absolutely fascinating, but I'm not going to dish out details, because you should purchase the lecture and hear it directly from the source!

Slideshow on Medical and Surgical Treatment of Sexual Pain

Warning: Do not look at this slideshow if you have not already seen Dr. Goldstein and/or if you are afraid of graphic, vivid pictures and depictions of the vagina.

I found this great slideshow (click here) that Dr. Goldstein put together called "Medical and Surgical Treatment of Sexual Pain" which goes through the possible treatments, the different types of sexual issues one might be facing, and then shows what a vestibulectomy would be like. I find it helpful and comforting to look at, but probably not everyone would.

Sex

I've been thinking about sex. Specifically, I've been thinking about how, for me, sex was disastrous.

I didn't grow up on a steady diet of TV; in fact, it was monitored by my parents. But once I was out of the house and on my own, I watched a whole lot of TV. I've seen tons of sex scenes in tons of movies and TV shows. And as a virgin, my only experience for what sex would be like or should be like was what I saw on TV.

Yes, my Kallah teacher warned me that it was likely to be messy and even somewhat uncomfortable or unpleasant the first time. She also made sure to explain to me about the importance of foreplay (but I had read plenty of books on the topic, so I knew about that). My big problem was that I was held captive by my expectations, expectations that didn't pertain to my husband and what he was supposed to do for me, but rather, expectations that pertained to me and what I was supposed to do for him.

In my mind, the perfect wife needed to walk a line between the angelic ingenue and the sexy vamp. She should be able to dress up in a lacy white teddy or vamp it up in spiky black sandals and some lowcut black lace. She should be able to give off airs of both innocence and experience. She should make sure to be vocal and make her husband feel like he knows exactly how to please her. She should focus on her moves and do everything she can to appear enticing.

In sum, she should be so busy thinking about what she is doing that she isn't experiencing it.

Obviously, struggling with sexual dysfunction threw a huge wrench into the works. I couldn't pretend to enjoy something that caused me excruciating pain. But it was my therapist who helped me to discover what I was doing wrong with sex: I was layering so many expectations onto myself that I ended up burying myself in them. I was focusing so much on how I appeared to my husband (physically, verbally, with my moves etc) and not on whether or not I was enjoying what we were doing.

My therapist pointed out that I certainly wouldn't enjoy sex if I didn't engage with my husband and tell him what I liked and what I didn't. So what I discovered was that if I left it all behind- abandoned the pretense of being the innocent good girl or the vamp, and just focused on being me- intimacy could be a lot sweeter, even sexier. And when I wanted to dress up as the good girl or the bad girl, I could, but that would come from my desire, not from my feeling like this was the expectation, and that I existed only to please.

We hear so much on TV about the importance of being "good in bed" that we are terrified and worried that we might not be. We put pressure on ourselves to fake it, to pretend we are just as knowledgeable, just as experienced, but in truth...especially if we waited to have sex....this is all new to us. And the goal shouldn't be whether or not some other person thinks we're good in bed. The question is: are we having fun? are we being honest with each other? is this enjoyable? If those things are in place, we're in a good situation.

Once I shed all the skins of trying to fit into the images of sexuality that I had, consciously or not, been provided with, things got better. No, I can't have penetrative sex. But that doesn't mean I can't be intimate with my husband. Or that I can't enjoy it. There's more than one way to have a happy intimate life.

Turned A Corner

I'm happy to say I've turned a corner. Actually, Day 11 is when it happened. Starting on Day 11, I felt a lot better (thought not perfect). Now, almost at the two-week mark, I'm doing really well. I was even able to stay on my feet long enough to make myself some pasta today, which is great.

Hopefully, the recovery continues to go well and the healing process is also going well!

My Husband

I was rewatching my wedding video, and I realized that it made me happy.

This is tremendous. The work I have done with the CBT therapist, the fact that I am recovering from the surgery, my having reached this point...is making me happy. I can listen to our wedding music, the same music that played during that disastrous night where we tried to have sex and it completely failed, and I can feel nostalgic and happy. I can even feel romantic. I can watch romances on TV and not feel angry or jealous, but rather just like I"m looking forward, like hopefully my time will come.

I still have a very long stretch ahead of me. I'm still in pain from the surgery, still icing and taking four baths a day. I still can't walk normally, and have to waddle around like a duck. I am living cooped up in my house, pretty much making our bedroom my headquarters. But in spite of all this, and in spite of being worried about the potential formation of cysts or scar tissue, and the fact that the surgery does not work for everyone, I'm still looking forward.

I know this is my best shot. I'm doing everything I can to follow the doctor's instructions, and that's all I can do. And I don't know what will happen next. Maybe I'll have my post-op appointment and the doctor will say everything is fine. And alternatively, maybe there will be a problem, like the scar tissue forming in a problematic way, or a cyst forming and so forth. Hopefully, after working with the vaginal dilators for a time, my pain upon penetration will abate. And hopefully, my husband and I are going to have a happily ever after, and when the time is right, a child. That child who won't even know how much they are wanted, and what milestones we've gone through to get to them.

But. One thing I've learned from all this is that even if the happily ever after doesn't happen the way you imagined, if you have a deep, loving partnership with your spouse, you can get through almost anything. I am privileged to have a husband who adores me, and who took a week off of work to be at my beck and call. He looks at me when I feel disgusting and sweaty, having lain in this bed all day wearing nothing but a flimsy nightgown, and he sees an angel. As far as he is concerned, we are in the middle of our happily ever after, not just hoping for it.

And I think it's that which helps me. My husband's not like me. He's not negative. He's not down on life. He sees this as an obstacle we have to tackle and overcome, where hopefully we will be successful. But if this doesn't work, then it will be on to the next thing, the next strategy. I'm the type to decide that if something doesn't work, all is lost. And I admit that I will be extremely bummed if this surgery was for nothing, and if it doesn't help my pain (or even ends up increasing my pain). I will feel very betrayed and very angry.

But.

But I know that my husband will be there to offer me his hand, pick me up off the floor, and just say, "Okay, let's figure out what we do next."

And that's what makes him incredible.

More Pain Meds Situations

In today's news, I've discovered 600 mg of Ibuprofen taken every 4 hours disagrees with me. It's caused me to be extremely nauseous and to vomit twice.

Guess I'm going to try being solely on the Ultram. Maybe that will work for me.

Update: Nausea was actually a delayed reaction to the Ultram. I'm on Ibuprofen now and it's working, for the most part.

Vestibulectomy - Day 4

Everything is SO much better now.

Alternating between Ultram and Ibuprofen is working, so my pain is now under control. I am really sleepy because I need to get up throughout the night to ice and to take my meds, but the pain is gone, the constipation is gone, and the horrible drowsy muggy feeling from Percocet is gone.

I am happy.

Super Duper Pooper

So when I was a little girl, we had this potty training video that included a song about how a girl was a "super duper pooper" and I remember being really proud of myself when I was able to go potty.

Here we go:


Yeah, well, that's exactly how I just felt when I FINALLY FINALLY FINALLY had a bowel movement! Who knew such a simple thing would be such an ordeal? Yay! Oh my gosh, I never realized how amazing the body is until just this second. I was in so much pain and discomfort because of the constipation, and even though everyone told me not to strain, I still had to strain but thank God the rest came out nice and loose and easy.

I think one piece of advice that really helped was to drink a mixture of prune juice and orange juice heated up (either in the microwave or on the stove) about three times per day and also to go off the Percocet until I had a bowel movement.

Now my husband is going to pick up my Ultram for me, and hopefully everything will be much better.

Yay!

New Drugs!

Doctor has decided that since the Percocet is making me super constipated and unhappy, I get a new drug, so he's called it in to the pharmacy...it's called Ultram!

Hopefully this will make things better. In the meantime, I am trying not to strain since everyone says that will pop the stitches, and instead am drinking down cocktails of prune juice and orange juice in the hopes of being able to create a bowel movement.

It's funny that with all my advanced degrees, my one goal in life at this moment is to just have a bowel movement. Well, it's funny but it's not funny.

Sigh.

A Rant

I hate Percocet.
I hate Percocet.
I hate Percocet.
I hate Percocet.
I hate a drug that fixes the pain but makes me nauseous, drowsy and constipated.
I hate that the Ibuprofen is not fixing my pain.
All I want is to go to the bathroom.
I hate Percocet.

Vestibulectomy- Night 2

It's 4:25am and I'm caught in a bind.

The doctor stressed how important it is to NOT GET CONSTIPATED. Well, I've been taking stool softeners, eating prunes, drinking apple cider, eating high fiber everything, drinking water and you know what, still can't get myself to pass a bowel movement.

I think it's because Percocet is a very constipating drug. Anyway, the problem is that I've got a deal with the devil. I need to take Percocet every three hours, because if not, I am awake in tons of pain. But if I take it, I can't go defecate. And I really want to do that. And I've never understood Asher Yatzar like this before, and all I can think is that if I can't get this to work, I'm gonna have to have an enema and oh my God, I really don't want that.

But I have to take the pain meds because otherwise it starts jackknifing up to a crazy degree, and then I can't handle it, so I take my Percocet after some existential anguish, and then I try gulping down some water and hoping that maybe sometime today I can defecate.

Yeah, I never thought all my prayers would be directed towards a bowel movement, either.

Man, am I not in a happy place right now.