Find support and treatment options from participants and Maze Women’s Health staff.
May 16, 2017 at 5:41 pm #20969Nicole Tammelleo, MA, LCSWParticipant
It still amazes me how little is understood about vaginimus. The internet does have a fair amount of information, but I think what is not happening is that people are not speaking about it. Unless you actually hear someone speak about it as “real thing” you might be skeptical that it exists. We all know by now that everything you read on the internet can’t be true, so hearing about vaginimus from a friend or trusted person is one of the best ways or educating others. Even just a casual conversation with someone about it might help spread the word and provide advocacy that you do not even realize you a doing.May 18, 2017 at 4:46 pm #20970
So true, Nicole. People still think it’s this rare thing, not realizing that odds are they know someone who has it. You make an important point about how advocacy doesn’t have to be loud. it can start with just some small conversations that teach people about the condition.May 21, 2017 at 12:47 pm #20974recessivegenequeenParticipant
I definitely wish I had heard people talking about vaginismus when I was younger, or that I heard about it now. The internet has helped more information become accessible, but it is still far from having a place in the larger cultural conversation. It’s not something we see in books, on TV, in movies… makes it harder to talk about. I wish there were more ways to start the conversation beyond talking about one’s own experience. Any advice on how to get the word out there from anyone is greatly appreciated!August 24, 2017 at 3:42 pm #21759
I have seen more articles in women’s magazines about vaginismus– reach out to see if they would be willing to interview someone who had it so they could write a piece on it that includes the human aspect to it, not just the WebMD side of it.August 24, 2017 at 3:42 pm #21760
I have seen more articles in women’s magazines about vaginismus– reach out to see if they would be willing to interview someone who had it so they could write a piece on it that includes the human aspect to it, not just the WebMD side of it.August 24, 2017 at 4:29 pm #21761Aimee Goldman, RWHNPMember
I have seen a gradual increase in Vaginismus awareness. Many of the referrals I get at Maze are from primary gynecologists who are familiar with Vaginismus but unsure how to treat it. I am optimistic that in time Vaginismus will no longer be an enigma in the medical community.
Maybe physicians are being trained about Vaginismus in medical school or during residency. In the meantime, continue to talk about Vaginismus openly and honestly. Get the word out that it can be treated and that no one should have to suffer in silence.November 16, 2017 at 9:16 pm #22101Heather34Participant
Hi Aimee. You wrote: “Many of the referrals I get at Maze are from primary gynecologists who are familiar with Vaginismus but unsure how to treat it.” I think it is beyond awesome that gynecologists are finally becoming familiar with it and this, alone, speaks volumes and gives me hope that less and less patients will go and see a doctor who tells them to “just relax” which so many of us have heard.May 11, 2019 at 10:08 pm #25041JennicatParticipant
I think that a lot of my depression, anxiety and addiction to debt/shopping has more to do with this condition then the doctors realize. I try everything for my mental health and my vagina is more of a problem then I ever imagined. I feel a little hopeful that I can get this (and more) problem resolved.
I wish my GYN’s and therapists had told me that vaginismus was an actual thing. For 46 years I have been suffering and I was beginning to think I was too old and I was going to die before I could have pain free sex or even less pain for a pap smear.May 16, 2019 at 4:16 pm #25057MaZuParticipant
Hello! My name is Marina and I was treated for vaginismus two years ago. After my treatment, I made the decision to be open about my vaginismus, and talk to as many women and men as possible about it. As we all know, female sexual pain is still treated like a taboo and this social stigma prevents hundreds of women from getting proper treatment. Vaginismus is still a big part of my life and I am interested in developing a project about the female experience with sexual pain. I would love to talk, listen to your stories, and also share my own. So if any of you is interested in voicing your opinion and/or experience please let me know.
You can contact me on:
email@example.comMay 17, 2019 at 2:47 pm #25060Leslie Turner, WHNP, CNMParticipant
I applaud you for your decision to share your experience with vaginismus. Yes, far too many suffer from painful sex in silence. If women felt that they could open up about it and be supported, many more women would seek treatment.May 21, 2019 at 10:08 am #25072recessivegenequeenParticipant
Marina, I think this is the thing we can do – make this subject easier to talk about and more well known so less women suffer in silence for years without understanding what’s going on. It’s disgraceful that almost all of our vaginismus stories start with long periods of wondering if we’re the only ones out there suffering when this issue is treatable and understood by so many swaths of women. It’s great that you want to continue spreading awareness – what will the focus of your project be?February 21, 2020 at 11:54 am #26872Leslie Turner, WHNP, CNMParticipant
Just checking in to see how you’re doing. As you many know, we’re seeing more about vaginismus in the mainstream media (Netflix show ‘Sex Education’ and Goop). Was curious about your experience with sharing your personal story of healing. Please update us if you get a moment. Thanks!
take good care,
LeslieApril 16, 2020 at 12:01 pm #27623Jennifer Dembo, LMSWParticipant
When I was in grad school, my fellow classmates would groan during our policy assignments. But I actually got kinda nerdy about them and found them very interesting. I learned quickly that there really is something to that “squeaky wheel” saying. So I’m wondering – how do we create more general awareness about vaginismus, promote normalcy and make treatment more accessible?
Now that vaginismus has made it’s way into tv and film (Netflix’s “Sex Education” and “Unorthodox” and “Debbie Does Dilators” by filmmaker Savannah Macgruder), should we focus on more media attention? What about lobbying the American College of Obstetrics and Gynecology (ACOG) to ensure better training for doctors? What do you think would help you feel more supported, more acknowledged?
Please weigh in – looking forward to hearing from you.May 2, 2020 at 9:32 am #28590Sks823Participant
I think media attention is great for two reasons:
(1) someone watching the “Sex Education” episode (or one of the films) who has vaginismus but doesn’t know what it’s called or doesn’t know that there is a physical reason they’re unable to have sex, will be able to research and seek treatment for vaginismus after realizing they’re not alone!! 🙂 and
(2) less of a stigma – someone who is a bit more open about their condition may feel comfortable discussing the show “Sex Education” with their friend and mention that they have the same issue shown in the vaginismus episode. The friend has seen vaginismus discussed in mainstream media and will be more understanding than if they had never heard about it! (Maybe they’ll even say “oh my cousin had that issue – she went to Maze in NYC etc. etc.”)
I think better training for doctors/nurses (anyone who may be involved in things like pap smears and vaginal exams) would be great, too, so that they can be understanding, patient, and informative to anyone they realize is struggling during vaginal exams (maybe someone who doesn’t know they have vaginismus, the doctor/nurse could give them advice on how to seek help). This would also be insanely helpful for anyone who does know they have it and says “can you be gentle/slow/use the smaller speculum/tell me what you’re doing/etc., I have vaginismus.”August 3, 2020 at 2:27 pm #32259Helen Leff, LCSWModerator
Yes to everything that’s been said in these posts and we need continued increased awareness, attention, training and communication regarding vaginismus. I want to add the podcast TightLipped to the list of media venues finally bringing vaginismus into the light.
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