Tuesday, March 25, 2014

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.

Monday, February 3, 2014

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.



Monday, December 9, 2013

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 1st does not mean that the date that I would actually have the surgery was on March 1st. 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 1st.

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

Sunday, November 17, 2013

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.

Sunday, October 20, 2013

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.

Thursday, August 15, 2013

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.


Wednesday, July 31, 2013

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!