Write-In Campaign Proposed by Dr. Pacik

[Heather34]

Hi ladies. I am creating this topic in response to Dr. Pacik’s post this morning. In it, he wrote:

“We are all very busy with our own lives, but we need to start the “write in” campaign where all of us start writing to “The Doctors”. If they get a flood of emails from women willing to tell their stories, and aunts and mothers, this is the beginning of the publicity that is needed to get vaginismus on the map. Then it won’t be long before other networks pick it up, doctors will be curious and start learning and hopefully the insurance companies will begin to realize that vaginismus is an important sexual pain disorder affecting millions of women.
I have thought about a form or template, but on further thinking I think everyone should write their own letter to The Doctors. It will mean more this way. A bit more work, but probably more effective. Let’s start this “write-in” campaign soon. With enough publicity we can blow the lid off vaginismus. We know that grass roots organizations can be highly effective. Just think how far we have come with the Forum in a mere six months!
We can start a new topic where letters sent are posted, so that others have the tools and fresh ideas of what can be written.”

The address to send your letter to is:

The Doctors
5555 Melrose Ave.
Mae West Building, Second floor
Los Angeles, CA 90038

[Heather34]

Hi ladies and Dr. Pacik. This is the letter that I intend to mail today:

The Doctors
5555 Melrose Ave.
Mae West Building, Second floor
Los Angeles, CA 90038

August 15, 2012

Dear Producers:

I am writing to ask you to do a show on the condition of vaginismus. I will first provide my background story to you regarding this condition. I am currently 35 years old and am happily married to the man of my dreams. On 10/14, we will celebrate our 6 year wedding anniversary. In addition to being a happily married wife, I am also a daughter, sister, best friend, and colleague. I further was diagnosed with Pacik grade 5 primary vaginismus. I first discovered this condition when I tried to have my first gynecological exam. When the Doctor attempted to insert the speculum or examine me in any way, all of my muscles tightened up, my body involuntarily lifted almost off of the table, I felt like I was going to hyperventilate, and I felt a horrible burning sensation with any touch. I was scared and didn’t know what was wrong with me. I scheduled several more examinations only to have the same or worse symptoms arise. On one occasion, I couldn’t even go into the exam room without crying. I felt like a “freak” and “broken”. Several Doctors didn’t understand my intense fear, anxiety, and physiological reaction to the exam and made me feel even worse and more abnormal about this condition. I’ve been told to “just relax”; “it’s all in your head”; “try getting drunk”; and even “you’re lucky you’re husband is still with you.” In addition to my failed gynecological exams, I also had a horrible burning sensation with any attempt at penetration with my husband. I wanted to consummate our marriage so bad and would keep telling myself that if I just relaxed enough, it would work and I could be “normal.” Every single time, it caused excruciating pain and was impossible. I felt so terrible and broken … Why could my friends enjoy this wonderful thing called sex and I have the exact opposite horrible experience with it? What was wrong with me? How long would my husband stay with me with this horrible condition? I felt a true sense of despair and my husband and I both searched day and night for a cure for this condition. Finally, after suffering in silence with Pacik grade 5 primary vaginismus for 15 years, which included my entire 11 year relationship/5 year marriage, we found a successful treatment option and I was cured in 2011. Within one week of this treatment, my husband and I made love for the first time and it was truly one of the best days of our lives. I now couldn’t be happier and will do anything that I can to get the word out there for other women that this condition is real, has the name of vaginismus, and can be successfully treated. I felt a tremendous sense of shame and embarrassment surrounding the condition and told no one except my husband and the doctors that we worked with. Similar to vulvodynia, vaginismus is a sexual pain condition in which women suffer in silence often for years as they are too embarrassed to discuss the condition. I would love for you to do a show on the condition of vaginismus as it is affects 1-7% of the world population and I believe that millions of women are continuing to suffer with it in silence. I wrote this submission from the heart and with courage and, again, ask you to please consider doing a show on the condition of vaginismus.

Sincerely,
Heather

[Allie]

Even though I don’t have a success story yet, I will be typing up my letter tonight to send! I think this is a great idea. It’s pretty ridiculous that the only way I(we) have been to able to find information about vaginismus is by searching online ourselves. Years of depression and everything else that goes along with vaginismus could have stopped for me years ago if doctors knew more about this condition! I hope each lady in this forum takes the time to write a letter!

[mmbayles91]

I will definitely be writin a letter. Love this idea!!!!

[Mabel1226]

Heather-
Your letter really moved me! I, too, am a health care provider and have been married to my husband for 5+ years and together for 10. My PCP has already spoken to other patients about Dr Pacik so I’m spreading the word one doctor at a time!

[Dr. Pacik]

“Talking Points” for letters to The Doctors 8.16.12
Length: about 200-400 words
Define vaginismus in your own words. Pain with attempted intercourse, intercourse not possible, intercourse impossible. Describe the pain, the fear and anxiety of pain, the anxiety of being touched in the pelvic area possibly leading to more.
Desire to start a family. Not possible. Fears of relationship breaking up. Impact on relationship, marriage, etc.
Duration: How long you have been afflicted. How did this make you feel.
Treatments attempted which failed: Frustrations with doctors and health care professionals not knowing, moving from therapy to therapy (elaborate). Multiple treatments attempted, time and expense.
Misdiagnosis: Were you misdiagnosed with vulvodynia or “vestibulitis” (vestibulodynia), or was there a total lack of diagnosis. How did this affect you and did this cause more delays because of misdiagnosis.
OK to discuss the Botox program and OK to discuss treatment with Dr. Pacik, Manchester, NH but be careful that it doesn’t sound like an advertisement. (As much as I have concerns about this one, I think it is still important that women know that there is an effective program with quick results.) You may want to elaborate on what you felt was important in this program.
It is unimportant if you have been treated or not. We simply want the world to know there is a condition called vaginismus, that is unknown despite having been described over 150 years ago.
Talking Points: Let’s get other ideas from others for “talking points” whether you have been treated or not. Post your letter on this thread so others can get ideas. Not everyone is a writer, but that is totally OK. The letter has to come from your heart, and who cares how you express yourself. Sometimes simple raw physical and emotional pain is all that it takes and this is VERY POWERFUL.
Save your letter. You may need to send it in more than once until it is finally appreciated by the producers. We may want to target another program. Start thinking about other programs for the future, but let’s combine all our strength for this one program (The Doctors) for now.
Privacy: If you do not want to “go public” simply sign it “frustrated” or something similar, with or without a return address, or an email or nothing. This is more about The Doctors getting the message. If you feel comfortable being interviewed this can be done anonymously where your voice and physical characteristics are not revealed or you can simply go public as four courageous patients of mine did years ago on the Tyra Banks show (“Married Virgins”, 2009).
Once we have everyone’s ideas I will post them into a blog as a ready to go resource article and broadcast the plea to do a “write-in” as a blind mail to what is now a group of over 500 women. There is little doubt that we now have the strength and numbers to make a difference. I will be writing my own personal letter to one of the doctors on the show.

[Allie]

Dear Producers,
I am writing to you today with hope of you being able to help other women. Even if its just ONE woman. This year will mark 6 years that I have struggled with a condition. A condition that the only way I could find ANY information about was online. This condition is called Vaginismus. Vaginismus is a condition where there is involuntary muscle spasms in the vagina during attempted intercourse, gynecologist exams, tampon insertions, and etc.
I discovered something was not right on my wedding night, as my husband and I were trying to consummate our marriage. The first year of our marriage I saw about 6 doctors. None of these doctors knew what was wrong with me. None of these doctors cared to help find out what was wrong. They had no clue. Thats when I researched online and found information about Vaginismus.
Now that I had a name for my condition it made me feel no longer like some freak, but now there was a even bigger problem. I could not find a doctor to help me overcome my vaginismus. I have tried counseling, sex therapy, pelvic floor physical therapy, anti- anxiety medications, and the list goes on. Recently, after doing more research online. I found a Doctor who has a vaginismus treatment program. I leave for treatment the beginning of November. After reading other womenʼs success stories I have hope again and am so anxious to leave for my treatment.
I have suffered almost 6 years. 6 long years of depression and not knowing if I will ever overcome vaginismus. A condition that most doctors have no clue about or even care to learn about. I have had to research everything on my own to even get information. This is ridiculous. If you could do a show on vaginismus you could change a lot of womenʼs lives. These women are suffering in silence. It could make doctors want to learn more about vaginismus. Vaginismus should be a known condition, we should be seeing it in doctors offices, magazines, commercials,and etc. I beg you to please consider doing a show on Vaginismus. Your show could be the ideal platform to raise much needed awareness for this condition. Thank you for your time.
Sincerely,
Allie

[Allie]

I just emailed this letter to the Ricki Lake Show. Starting up all new in September. She used to have a talk show years ago and is coming back with a talk show for women. Thought it was worth a chance! If you go to http://www.therickilakeshow.com click contact us and you can just copy and paste your write in letter on there!

[Nakitalab]

What a great idea! Even though I haven’t had my treatment yet I’m writing letters!

[Nakitalab]

What a great idea! Even though I haven’t had my treatment yet I’m writing letters!

[Heather34]

Quote:

Quote from Dr. Pacik on August 16, 2012, 06:01
“Talking Points” for letters to The Doctors 8.16.12
Length: about 200-400 words
Define vaginismus in your own words. Pain with attempted intercourse, intercourse not possible, intercourse impossible. Describe the pain, the fear and anxiety of pain, the anxiety of being touched in the pelvic area possibly leading to more.
Desire to start a family. Not possible. Fears of relationship breaking up. Impact on relationship, marriage, etc.
Duration: How long you have been afflicted. How did this make you feel.
Treatments attempted which failed: Frustrations with doctors and health care professionals not knowing, moving from therapy to therapy (elaborate). Multiple treatments attempted, time and expense.
Misdiagnosis: Were you misdiagnosed with vulvodynia or “vestibulitis” (vestibulodynia), or was there a total lack of diagnosis. How did this affect you and did this cause more delays because of misdiagnosis.
OK to discuss the Botox program and OK to discuss treatment with Dr. Pacik, Manchester, NH but be careful that it doesn’t sound like an advertisement. (As much as I have concerns about this one, I think it is still important that women know that there is an effective program with quick results.) You may want to elaborate on what you felt was important in this program.
It is unimportant if you have been treated or not. We simply want the world to know there is a condition called vaginismus, that is unknown despite having been described over 150 years ago.
Talking Points: Let’s get other ideas from others for “talking points” whether you have been treated or not. Post your letter on this thread so others can get ideas. Not everyone is a writer, but that is totally OK. The letter has to come from your heart, and who cares how you express yourself. Sometimes simple raw physical and emotional pain is all that it takes and this is VERY POWERFUL.
Save your letter. You may need to send it in more than once until it is finally appreciated by the producers. We may want to target another program. Start thinking about other programs for the future, but let’s combine all our strength for this one program (The Doctors) for now.
Privacy: If you do not want to “go public” simply sign it “frustrated” or something similar, with or without a return address, or an email or nothing. This is more about The Doctors getting the message. If you feel comfortable being interviewed this can be done anonymously where your voice and physical characteristics are not revealed or you can simply go public as four courageous patients of mine did years ago on the Tyra Banks show (“Married Virgins”, 2009).
Once we have everyone’s ideas I will post them into a blog as a ready to go resource article and broadcast the plea to do a “write-in” as a blind mail to what is now a group of over 500 women. There is little doubt that we now have the strength and numbers to make a difference. I will be writing my own personal letter to one of the doctors on the show.

This is a wonderful idea from Dr. P and will work so, so well to further spread the word. I have previously mailed my letter and would encourage everyone to as it is so, so important to continue to advocate for those women who still suffer in silence with vaginismus. Now is the time, with our combined efforts, that they will no longer have to suffer and will not only learn about the condition of vaginismus but that there is a true treatment out there that is the “cure” for this condition!

[Dr. Pacik]

We have many new members since this was posted. I would like to re-visit this and continue our campaign of making vaginismus more well known.