MTV true life show - 'I can't have sex' - about vulvodynia sufferers...

Hey Guys - I not yet watched it dont think it was aired in the uk but it seems we can now view it online :)I have copied and pasted an email I recieved from secretsuffering.com ....xxxx




Hi Everyone,

In case you didn't see it, last night MTV presented the season premiere
of its show "True Life" called: "I Can't Have Sex."

I'm pasting in the letter I just wrote to one of the show's producers.
I'll be curious to know whether you agree with my assessment of the show.
If you haven't seen it yet, you can view the entire show on the MTV website.
http://tinyurl.com/26v2dps

Here is the letter. To comment, please go to the post on the Secret Suffering
website at http://tinyurl.com/2dj2g9e

Hi *******,

Just wanted to touch base with you. I wanted to say you all did a
fabulous job showing how devastating this problem is to relationships
with tremendous honesty and integrity. I love that you had one young
woman who was unattached. Production was flawless. Music fantastic.

I know you only had one hour and three women. :-) , but my only wish,
and you guys certainly could not control this, was that there was more
focus on the importance of finding a good gynecologist or urologist for
diagnosis and management. Yes, you did have the young woman with the hip
tear, but there was little emphasis on the importance of a good
diagnostician and "quarterback" to manage the treatment overall.

There are usually multiple physical conditions involved with the pain,
and these "good" docs can sort that out, as well as help women regain
their self-esteem and bolster patients exhausted by running a medical
marathon on their own.

Until finding a doctor to diagnose and validate that there is a
physical, not a mental problem, patients too often think (or are made to
think) they are crazy and it's all in their head, and if they could just
relax, change their attitude, conquer their fear, etc., the problem
would be solved.

Two legs of the three-legged stool of management and treatment were
covered beautifully in the show. But finding a doctor who respected and
validated them, and getting a good physical diagnosis (or, more likely,
more than one) is what every single one of the women I interviewed (and
surveyed) for Secret Suffering felt made the difference to them, and
gave them hope and direction to move on to the other aspects of
treatment.

A lot of the show stressed the emotional side of management, which is
critically important. However, more likely than not, this is a true
physical problem ... with an emotional component. So it concerned me that
the physical component might be missed by some.

And finally, I just want to note that this is not a problem that only
affects heterosexual women. But again, I realize you were limited in how
many lives you could portray within an hour show.

Please know these comments are not intended as criticism of your show
because you can't create what isn't there, but thoughts you may want to
consider for any future show on this topic.

All in all, this "True Life" show was an important, respectful, and
well-done presentation, which has never been done to date. Kudos to you
for having the courage to bring this subject to light regarding young
women. That is a growing suffering population that needs to have
attention. Thank you for not shying away from the raw and graphic in
showing what this problem can do to young people. And fantastic that you
did this so well, and within the mainstream media on MTV.

Thank you, as well, for putting a link to our site on the blog. I really
appreciate that and have now made the "vent line" center stage on our
Home page.

Yours truly,
Susan Bilheimer

Thanks for posting this. I tried to view through the link she posted and it said it wasn't available in my area. I was waiting for it to go up on youtube. Anyhoo will give this a go.

I recently found that someone I know really well can't have sex. It's funny the things that make sense once you've been down this road. I knew that she didn't use tampons and she'd even told me why years ago. I just knew when it came up this time that there was more to it. She's now trying to find a Dr. A psychiatrist told her it was anxiety... we're not having that!

You are receiving this email because you subscribed to the Secret Suffering
email list.

Hi Everyone,

Here are three new posts on the Secret Suffering site about the MTV True Life
show that aired on Monday and reaction to reader/viewer comments and
emails. Flawed or not, kudos to the producers of the show and to the
three young women (and partners) who had the courage to get
out there to help others.

1. Dr. Echenberg on the MTV True Life show "I Can't Have Sex"
2. Addressing the Angry Comments (by Susan Bilheimer)
3. S*ex*ual Pain is Not Just Pain During S**e*x (by Susan Bilheimer)

*************

Dr. Echenberg on the MTV True Life show "I Can't Have Sex"

As a physician who is fully dedicated to advancing the cause of
spreading as much information about chronic pelvic and sexual pain
disorders among younger women, I have very mixed feelings about the MTV
show True Life entitled: "I Can't Have Sex." On the one hand it is high
time for a major network or cable network to actually portray real life
young women with these problems, and I believe they did a very good job
– production wise ... but on the other hand I was extremely frustrated
to see or hear very little about the true nature of these disorders on
this particular show.

We were involved previously in treating one of the women on the show who
stated that she had been seen by "25? doctors before being diagnosed
with pelvic floor dysfunction. However, the show presented almost
nothing about most of the diagnoses that are so commonly seen by us on a
daily basis such as Interstitial Cystitis, Pudendal Neuralgia, Irritable
Bowel Syndrome, Vulvodynia, Endometriosis, groin pain disorders, etc.

Continue reading: http://snipurl.com/1mnm5h

**************

Addressing the Angry Comments (by Susan Bilheimer)

really need to clarify that we had absolutely zero input into this MTV
True Life show ("I Can't Have Sex"). Some of the people writing comments
seem to think we created the show or had input into what they presented.
In fact, all we did was help the producers out with finding one of the
young women who was on the show. Somehow people have the idea that we
were the creative force behind it or produced it.

Nope, though I'd love to be the force behind an MTV show that is so
successful along with the money that might bring, I'm just a patient who
also happened to write a book on the subject of pelvic pain, sex, and
relationships, along with Dr. Echenberg.

And, by the way, Dr. Echenberg is truly one of the rare "good" docs, an
excellent diagnostician and a compassionate, caring medical professional
(unfortunately, I live in Florida and he's in Pennsylvania, or he'd be
my doctor!).

Continue reading: http://snipurl.com/1mnmvq

**************

S*ex*ual Pain is Not Just Pain During S**e*x (by Susan Bilheimer - sorry
for the asterisks, but you know the spam filters! )

I think some people may have confusion about s*ex*ual pain and I would
like to clarify. S*ex*ual pain can mean pain during a s*ex*ual act.
However, it can also mean pain in the s*ex*ual organs, totally
independent of s*ex*ual activity. In fact, there are millions of women
who experience such pain daily, or 24 hours a day, who are not or have
never been s*ex*ually active. In my book, "Secret Suffering: How Women's
S*ex*ual and Pelvic Pain Affects Their Relationships," we explore all
facets of this subject, and give what we hope is an easy-to-understand
explanation (Chapter 4 – Understanding Chronic Pain and Your Nervous
System) of what may cause pain in these organs at any time.

Here is an excerpt from the book, which is a portion of the story of a
young women who has never had a s*ex*ual relationship (Chapter 11 –
Lori: A Young Woman of Faith):

Ode to the Pain

I felt it was important to present Lori's story, both because she is a
young, celibate woman, as well as the fact that the CPP (chronic pelvic
pain) symptoms of which she is most keenly aware are primarily related
to gastrointestinal issues. I think many women don't realize that their
stomach problems, such as those diagnosed as irritable bowel syndrome
(IBS), are also manifestations of CPP and pelvic floor dysfunction. Lori
can precisely describe the pain:

Continue reading: http://snipurl.com/1mnnde

*************

I actually created an audio commentary as well, but I'm not so sure
about posting it. It's a bit long and dramatic. I'm kind of nervous
about exposing myself to the potential wrath of listeners. Maybe I'll
cut it into teeny, tiny bits for easier consumption. But if I want
others to feel free to speak out, I know it's important that I do so as
well. Please remember that we actually do have a telephone "vent"
hotline for you to leave a voice message - 888-848-4156.

Thanks!

Susan Bilheimer