Stories to help advocate

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  • #8599
    mmHeather34
    Moderator

    In a recent post, Dr. Pacik wrote:

    “Vaginismus was described 150 years ago and some of my patients continue to report having seen 8-10 gynecologists with no diagnosis until they searched the internet themselves. What does it take? How much do we have to plea with TV stations to get everyone out there to understand there is an elephant in the room and no one is paying attention? We have witnessed the success of sit-ins during the civil rights movement in the 1960’s. Perhaps it is time for a “write-in”. Let’s pick a well known TV station such as The Doctors and have everyone send in their story. Let’s flood their mailbox so they know this is real. Tell YOUR story and be careful not to say too much about our program to avoid it appearing like a setup advertisement. Once one station picks it up, others such as Dr. Oz won’t be far behind. Perhaps Heather can lead the charge and we can make copies to several stations. Let’s get organized once and for all and put an end to professional ignorance. When patients know more than their doctors, it won’t be long before it becomes mandatory to teach this.”

    I love this idea ladies and believe that, with 225+ members, it is time for vaginismus to be heard and for Doctors to pay attention to the fact that this condition is real. Can you imagine the reaction that an editor may have from receiving 225 (1-page) personal and touching stories of living with vaginismus and overcoming such. It just needs to grab one person’s attention to get the ball rolling!

    I propose the following:
    1) Can you please post your story below (this will remain anonymous in all forms)
    a. In your story, can you please write a few paragraphs, not exceeding a page, discussing the diagnosis and its impact on your life.
    b. This could include: etiology, symptoms, progression, barriers to obtaining a diagnosis, and barriers to obtaining treatment.
    c. Could you also please share your experience in receiving Dr. Pacik’s treatment program and its impact on your life.
    2) I then will develop a cover letter template, where revisions can be made depending on where the cover letter and personal letters will be sent.
    3) We can then send our letters anywhere we choose (i.e. television, magazines, newspapers, journals, etc.).
    4) I would be happy to print our letters, make copies, and mail them out.

    #10162
    Allie
    Participant

    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

    #10233
    mmHeather34
    Moderator

    Hi ladies. Inspired by Auntie’s post, I asked my best friend to also write a letter to The Doctors show asking them to do a show on the condition of vaginismus. I think the more letters that we submit and the more we work together to spread the word regarding this condition, we can help even more women out there to no longer suffer in silence. Hope it helps!

    Dear Producers,

    I am writing in support of a woman whom has been my best friend since childhood. We have been through so much together and have always confided in one another on even the most personal accounts. We have been best friends for 28 years, and it kills me that she has felt the need to hide the following, even from me due to embarrassment and a lack of medical awareness of this issue.

    In October of 2006, this woman married an amazing man. She would always beam about how great things were and how they had such an amazing sex life! I was always in awe of how perfect they were for each other. It was not until last year that I discovered some very sad news. She confessed to me that her and her husband had actually NEVER had sex! I was completely confused. She explained that the pain of anything entering her vagina was so excruciating that it would bring her to tears. My best friend of 28 years had never been able to intimately connect with her husband because of this issue.

    She confided that she had taken it upon herself to research the topic. In the process, she had spoken to many medical professionals who were unaware of any condition that would be causing this. They told her that it must be in her head and she just needed to “relax”. Finally, she discovered a doctor who specialized in treating a condition called Vaginismus. “When a woman has Vaginismus, the muscle walls of her vagina contract or spasm in response to attempted insertion, for example, with a tampon or penis. This involuntary muscle contraction can be mildly uncomfortable or it may cause searing or tearing pain.”(WebMD)

    She discovered that her condition was one of which much of the medical community did not understand. She finally knew what was wrong and that there was hope to fix it! She was treated by this physician and for the first time in her life, she was able to have pain free intercourse. She was finally able to make love to her husband for the first time in their entire relationship, and it was pain free!

    Vaginismus seems to be poorly understood within the medical community. There are potentially thousands of women out there who have this issue and are living in silence. They are told it is “in their heads” and there is nothing wrong with them. I am asking that you please do a show on this very important topic potentially affecting thousands of women in this country alone. Please give these women the hope they so deserve.

    Thank you,

    Alexandra

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