A film about vaginismus

[kelseroo]

Hi everyone,

I’m eagerly anticipating my procedure which is April 22nd. I have a countdown app on my phone counting down the days. My husband and I have booked our flights and hotel and we are so excited and nervous! It will be my husbands first trip to the east coast (we live in CA) and my first trip to New England. We are planning on exploring Boston MA and also York and Portland ME while we are there. As my anticipation grows for the trip and and the life changes to come, I can’t help but thnk that I need to make a film about this.

I am a filmmaker (I work as a cinematographer & editor for a company that makes wedding and commercial films) and I am always telling other people’s stories, but I finally have a story to tell, and I feel like there are so many other women out there whose struggles are so similar to mine who may relate. I guess I’m just nervous to put myself out there and be so vulnerable to people outside my little circle. I have literally told no one about my vaginismus except my mother in law (who is helping us pay for the procedure) and one of my best friends and boss, who needed to know why I was taking time off from work and traveling to NH!

The way I imagine the film playing out is kind of like a film diary/documentary of my trip. I’m also wondering how I should go about sharing it… if I posted it on my vimeo password protected and then shared the link and password on this forum, would that be allowed? Also, would anyone be interested in watching? I feel like making this would be very cathartic for me, because I have been keeping this secret for so long. Anyway, ladies, let me know if you think I should make this film and if you would be interested in watching it. Also Dr. Pacik and staff, would I be allowed to film inside my procedure room? Like if my husband interviewed me afterwards, or I interviewed him? Let me know.

Anyway, I guess I’m sort of thinking out loud on this forum;-)

[Heather34]

Hi kelseroo. Huge, huge CONGRATS on booking your procedure. This is beyond wonderful and I am so excited for you!!! I think it is exciting that it’s your husband’s first trip to the East Coast and your first trip to New England. I live in Boston and it’s so beautiful. Let me know anything you guys are interested in doing in particular (i.e. Newbury Street shopping, Boston movie tour, and so much more) and I can send you some links. In addition, here are some great links for visiting the area:

Visiting Boston Part I

http://www.vaginismusmd.com/patient-info/during-your-stay/visiting-the-area/

Visiting Boston Part I discusses popular attractions, such as: The Freedom Trail, Faneuil Hall/Quincy Market, Harvard Square, Newbury Street, The North End, and Beacon Hill areas.

Visiting Boston Part II

http://www.vaginismusmd.com/patient-info/during-your-stay/visiting-boston-part-ii/

Visiting Boston Part II discusses accommodations, such as: hotels close to Logan Airport (Hilton) and hotels in Boston (Omni Parker House and Boston Harbor Hotel). It further discusses Things to do in Boston, including: horse-drawn carriage rides; Spirit of Boston cruises; dinner in the North End, Durgin Park in Faneuil Hall, or at the Top of the Hop in the Prudential Center; shopping on Newbury Street.

I think all of your ideas concerning making a film are excellent and I would definitely watch it. I, too, never shared about vaginismus with anyone other than my husband and the doctors we saw. Post-procedure, I opened up and shared this with a few of my closest friends. Like you wrote, it is so hard to share this but it can also be so cathartic. I also believe it is so important too as so many other women are affected by it and may also be living with it in silence as we have. In fact, right now, there are 510 Forum members either who directly have or had vaginismus or others including family members, friends, and even doctors and clinicians who want to work together to better understand it. Just writing that puts it into perspective for me on how important it is to advocate and help spread the word further about vaginismus.

Your thoughts, again, are all excellent and I’m so very excited for you and your upcoming treatment!!! :):):):)

[Kim]

I think your video idea is fantastic! In fact, I think it would be awesome to help us who suffer from Vaginismus show it to our family and close friends to better explain what we’re dealing with and hearing it from an outside perspective rather than just directly from us you know? I think it’s hugely brave of you to consider it and I support it 100%!

[kelseroo]

Thanks heather and Kim! That’s really what I’m hoping to accomplish with this. The people I would want to see it are other vaginismusmd sufferers and their families. I think one thing that is hard for people to understand is the emotional toll that this condition takes on a woman and her partner. It is so much more than just muscle spasms and not being able to have sex. It really affects all areas of her life. I hope by bearing my soul people will see what a big deal this is.

[haley.rid]

I would love to watch a video of your story!! Just watching the experience from someone else’s point of view would be so beneficial for others with or without vaginismus. I think it would really benefit those who might be hesitant towards the procedure. Keep us posted! I’m so excited for you to have your procedure! I just had mine in January, and it’s flipped my life upside down in the best way possible 🙂

[Becca]

I love this idea!! 🙂 I think making a film about it is a great idea. I have been trying to think of ways to spread the news too, and help women who are suffering from this to feel less alone. I have told many people about my condition, mostly just in the last 4 months before having this procedure. We told everyone, we were having a procedure because I had a physical problem keeping us from being able to start a family – and some people asked me more questions, so I told them about my Vaginismus and shared the website with them. It has become easier to talk about the more I talk about it, but definitely the idea of just random people or acquaintances knowing about it is something I’m hesitant/nervous about too. I will say that everyone I have told has been 100% supportive and shocked to hear about it. It is so sad that this is a condition that no one has ever heard of or even known was possible to have. It has been amazing though to hear people share their private experiences and stories with me after sharing mine. I actually had a co-worker friend who I found out had been diagnosed with Vaginismus as well, as well as a friend who had to have a hymenectomy for other reasons, and another older friend who is going through what could be secondary Vaginismus and has struggled with those same feelings of feeling alone and like a freak. It is amazing what we can do when we are a voice for our condition, and the hope we can inspire in others, as well as the knowledge we can share! 🙂

Also, just have to add that my husband and I explored Boston, and York, ME while we were jus there too! 🙂 Boston was incredible there is so much history and fun stuff to see. It was freezing, but we still walked and explored the Freedom Trail – one of the coolest things ever. 🙂 One thing I would recommend with that, we got a great deal on a hotel (in the Theater district) through hotwire and it was such a great, central location! We were able to park our rental car in the garage next to the hotel and walk everywhere we wanted to go. It was really awesome. 🙂

[Heather34]

Hi Becca. This is such an excellent post and I love your advocacy ideas. It is particularly moving when you describe how just telling one or two people truly starts a chain reaction of others who can relate and who may also be suffering with vaginismus or related problems but, too, find it difficult to share. It makes you realize, again, how important it is to make a film such as this and how many more people it would touch. Also, excellent post about your time exploring New England. It was a freezing cold time of the year but it sounds like you still enjoyed it which is so wonderful. Would you mind sharing the hotel name in the Theater District for others who may be exploring Boston during their trip to NH? It sounded so excellent and also centrally located to many of the area attractions. :):):)

[Becca]

The hotel we stayed at was the Hyatt Regency — http://regencyboston.hyatt.com/en/hotel/home.html
It looked like a pretty fancy place, so I’m not sure how expensive it would be to pay full price for, like I said we got a great deal through hotwire. 🙂 It was the PERFECT location, my hubby and I were so pleased about it! Also, they allowed us to check in around 11:45am when check in time wasn’t until 4, and with no extra charge. 🙂

[Dr. Pacik]

The idea of doing a film is always excellent. It is a very meaningful way to tell your story. A patient from 2008 had her husband film the pre-treatment interview in their home. She was able to share how devastated she was not being able to advance after hypnotherapy or sex counseling during the seven years of marriage. We then did a pre-treatment interview in the office, her husband filmed the procedure in the operating room and we did a post treatment interview before she returned home. She then did a weekly self interview on film for the next year outlining her progress. This was posted on YouTube for a year or two which resulted in an enormous number of hits. Later she removed the YouTube.

Kelsie was interviewed on the Tyra Banks show (2009) together with three other women. All were my patients and each made their important contribution to help others understand vaginismus.

Kelsie is the only one in my book whose real name is used. She insisted on this and became an amazing advocate for the many patients who called her for advice. She continues to do well to the present day and has two children. Her story can be read in Ch. 10, p.78 of my book “When Sex Seems Impossible. Stories of Vaginismus & How You Can Achieve Intimacy” (2010) available in Kindle or book through Amazon.com or my office.

I spoke to Kelsie recently because of the renewed interest in creating a film on vaginismus. She would love to participate once again. We are thinking of doing a documentary and for this would need to do a number of interviews.

Kelsie has spent a lifetime empowering young girls and stands as a beacon for all she does.

[Leena]

I think the idea of a film is a great one. Has there been any movement on this since last March (the date of the last post)?

[Heather34]

Hi Leena. Nothing has happened regarding the film as of yet but I believe it is such an awesome idea. Think of how many other women it could touch who have this condition but may not even know it has a name let alone a cure. I would love to brainstorm ways of making this happen in the future and think it could be extremely beneficial for so many. :):):)