Written by: Helen Martin (she/her).
Edited by: Zahra Taboun (she/her).
Vaginismus is a genito-pelvic pain disorder that is best described as painful vaginal penetration. It affects approximately 5%-17% of those with a vagina and is classically diagnosed through reports of pain with tampon insertion, gynecological exams and penetrative sex (1). Many describe the sensation of penetration as “hitting a wall”. For some, this condition is the response to a sexual trauma, for others it is the result of holding tension in the pelvis, as compared to many who may hold tension in their neck and shoulders (2). Often, people suffering with vaginismus feel isolated, unique, and are too embarrassed or ashamed to seek help. Those brave enough to attempt to navigate the medical system are commonly disappointed and often left traumatized. Below are interviews with four individuals living with vaginismus about their experiences with the medical system. These stories represent only a small sample of what many have had to tolerate in attempting to seek treatment.
While all those interviewed here identify as women, it should be noted that anyone with a vagina can suffer from vaginismus.
Tell me about yourself, and if you’re comfortable where you are based out of and how you identify.
KATRIN (she/her): I’m from Toronto. I was born in Bulgaria then moved here with my family. Something that might relate to vaginismus is that a lot of us who experience vaginismus may experience certain themes in life like being a high performer or being on the go a lot and that was definitely a theme in my life. I’m Cis, she/her are my pronouns. I identify as a woman and I like using the word vulva owner in my language around vaginismus.
SHEENA (she/her): I’m 23, living in the GTA. I identify as straight and my pronouns would be she/her. I just graduated from Laurier for business and math. I’m South Asian.
AMANDA (she/her): I identify as female. She/her are my pronouns and I’m in California.
MADGE (she/her): I am Australian born but based in New York. I’ve been here for four years. I moved to New York to go to acting school but realized that’s not necessarily my calling. I identify as an artist. My pronouns are she/her. I identify as Queer.
How many professionals have you seen to treat your vaginismus and how did you find them?
KATRIN (she/her): I saw my family doctor, a gynecologist, a transvaginal ultrasound technician and a sex therapist, so 4. I found them through referrals and for the sex therapist I google searched.
SHEENA (she/her): I’ve seen three nurses, three physiotherapists, my family doctor, and a gynecologist, so 8. Originally the clinic nurses referred me to one physio but it would take me an hour to get there because I didn’t have a car and their hours were really limited. I searched up other pelvic floor physios. I’d heard a lot of nightmare stories prior to me starting physio and I was like “OK I want to get a really good physiotherapist” so one of the things I made sure to do was make sure they specialized in pelvic floor therapy. I made sure they also specialized in treating vaginismus. I was very dependent on the reviews and the things I’d heard about the places too. So, Google or Yelp reviews. If there’s a single bad review, I’d be like OK, I need to find another place.
AMANDA (she/her): I’ve seen three gynecologists, a pelvic floor physio, a sex therapist, and a craniosacral therapist, so 6. I work in the therapy world and everyone consults about their patients so I needed to find someone out of my area. The sex therapist knew bits and she knew what vaginismus was but she was more trying to work on my anxiety and trying to get in touch with my sexuality and I’m like listen that’s not an issue. She and I agreed I needed a deeper therapist but the thing is she didn’t even know people that she could refer me to. Again, coming from this profession you always have, like a group of people that you can be like, hey, you know what? This is out of my scope; let me refer you to someone. I kept googling and I came across one therapist who was full so I was emailing her and I was like, you know, do you have any references? It’s like dead ends everywhere you go, and so that’s where I am now.
MADGE (she/her): I guess I’ve spoken to five practitioners about it. One therapist who told me that it didn’t make any sense and then dragged me to a gynecologist, who told me they couldn’t help, another gynecologist who didn’t even bring up the word vaginismus and was just mad that I couldn’t sit through the exam and then my current therapist and physiotherapist who are very helpful. It was a combination of referrals and google.
I want to cover both the good and bad of the treatment you’ve received. Let’s start with any negative experiences you’ve had.
KATRIN (she/her): Overall I found it to be quite disappointing and unfortunately that is pretty common. My family doctor recommended that I get my first pap. I obliged to this, even though I kind of knew I had a challenge and shared this with him. The recommendation I had gotten was “oh, you should just wait, because obviously you’re not ready for it, your body just needs more time” and so that was the first official medical recommendation that I got. At the time I was 18, so by no means super early where my body was not developed yet for penetrative sex. We tried the pelvic exam and it was quite traumatic with my butt lifting off the table trying to protect myself, trying to escape the speculum. The next medical recommendation I had gotten was that I should drink some wine and see if I could relax. I was still 18 years old so I was below legal drinking age in Toronto, which is quite funny and you know, disappointing. I asked for a referral to a gynecologist and he told me that seeing a gynecologist is usually for something like fertility issues or birthing issues and that I wasn’t at that age. There was like a resistance at my request, which was so awful.
When I went to the gynecologist a few months later (since there was a bit of a waitlist) I told her my challenges and vaginismus wasn’t mentioned. I went back to my family doctor again and he gave me a requisition to get a transvaginal ultrasound; that was awful. At the end of the procedure I cried a lot, I had experienced a lot of pain. I remember the technician said, “Oh, don’t worry honey, it’s going to get better after you have kids. You just need to pop out a few”. I remember this being sort of a blow to the gut and a reality check at the same time because I felt like my heart dropped. Like really, I’m gonna have to live with this until I have kids? How am I first going to find a partner at this point? OK, well, probably I’m gonna have to be alone for a while. How am I even going to have penetrative sex to be able to conceive?
SHEENA (she/her): When I was 21 I went to a walk-in health clinic. The first two nurses said they couldn’t help with the pain and that they didn’t know what it was and I’d have to go see a gyno. It was unfortunate ‘cause I knew how long the wait is for a gyno. They asked me three or four times if I was a virgin and I was like technically, yeah I guess. And they were just so shocked. And then they’re like you know what, we’ll send you to another nurse, she’ll take a swab of you and just see how you react to that and so she did a swab with a long Q-tip and then I just screamed out in pain and started crying. She said I probably had vaginismus and recommended me to go to pelvic floor physio as well as put my name on a list for a gynecologist. It took a year for the gyno to call me and by that time I had moved.
When I came back home from the pandemic I was having an issue with excessive vaginal discharge so I went to my family doctor specifically for that issue. I told her I’d been unofficially diagnosed with vaginismus and I was going to physio. She was really fixated on the fact that it was an unofficial diagnosis which I hated because I was like I don’t need an official diagnosis. My main issue at that time was regarding discharge and so she referred me to a gynecologist that called me a couple months later. A long wait again. They called me for my appointment but it wasn’t regarding the discharge situation. It was strictly because of the pain and vaginismus. I was like OK, this is not at all what I wanted to talk about. I just don’t understand why getting that official diagnosis is really important. I was already dealing with it. I didn’t ask them for any other forms of treatment. The lady who I talked to on the phone was really pushy with asking questions. I was at home and no one in my family knew what was going on. The reason I have vaginismus is because of a trauma. And she was like you need to tell me exactly what happened. She was so invasive, I told her I didn’t want to talk about it right now. She told me I needed to tell her all the details and I was really scared of somebody overhearing me at home. I was literally whispering on the phone. I was just like “Oh my God like this is a nightmare of a situation” and she was getting really impatient with me. I felt terrible after that call; I just started crying. And then what surprised me the most is that after she got all this information, I never got a call back from the office offering a diagnosis or asking me to come in for an examination.
AMANDA (she/her): Paps were always tough, you know, and I thought that was normal, it’s medical. It’s supposed to happen this way. Just bear it, you know. I’m holding my breath, I’m sweating, it’s like all the things that I never realized were a panic attack actually happening. But again, I’m thinking this is normal. I think not keeping me informed from the get-go was the worst part. It was just oh breathe through it, you’ll be fine. To me it’s like if they’re opening the speculum or putting their fingers in my vagina and I’m tensing up every time, every year for 30 years or whatever, shouldn’t that be a sign something’s wrong? There was no discussion of, you know it shouldn’t be like this. You know that’s been kind of a bother to me across the board.
You know it’s hard enough to talk about it especially when you say that you waited so long. When sex is so prevalent in our culture. I felt really alone, so that’s why I was like, OK, I need to talk to someone about this, but I don’t feel comfortable talking to my friends. I still don’t. Even friends or family, none of them know because they all have families and all this stuff, and I’m like no, you don’t get it.
MADGE (she/her): When I was a teenager, I was seeing a therapist in Sydney. Not for this, I was there for generalized anxiety. I couldn’t bring up the sexual pain to my therapist. And the one time I did, I’m gonna trigger warning this.
One time I did try and I write my therapist a list of things that I wasn’t saying to just hand to her and be like this is what I’m not saying. One of those things was I experienced, like really excruciating pain during sex and something about how I’ve not being able to go to the gynecologist ’cause, like tampons were painful and so was sex. And then one of the things was I also had these like really foggy memories, I was describing trauma memory from childhood. She looked at the list and looked at me and said, “You know you don’t strike me as someone who’s been sexually abused, so we won’t worry about that.” And then she said, “But are you telling me you’ve never had a pap smear? You know there’s such a thing as cervical fucking cancer!?”. She grabbed me by the arm and dragged me to the gynecologist’s office across the hall and left me there. At the time this actually felt really good. I felt cared for and she’d discounted my really yucky abuse memories so I could be like “Yeah, you’re right, I’m making that up in my head, it’s silly”. It’s only upon doing work years later that I’m like wow, I think this fucked me up. So anyways the gynecologist she dragged me to was actually really good with me, but she could barely touch me before I started convulsing.
Also, a few years later I was trying to get another pap done and one doctor shook me and was like “I told you not to move!”. I could feel his frustrated inner monologue would have been like “dumb lady, like dumb girl”.
Have there been any positive experiences?
KATRIN (she/her): The fact that I have to think so hard about positive experiences already your answers your question. I do recall feeling a sense of hope when I entered the sex therapist’s office. There was definitely this like air of OK, this woman is going to talk to me in a positive way about sex which I hadn’t sensed yet and so I feel like that may have been sort of the peak of the positivity that I had experienced. It kind of went downhill and she just did not know about vaginismus either. She recommended dilators but dilating recommendations from somebody who is supposed to be the psychological emotional healing person on this journey doesn’t make too much sense to me.
SHEENA (she/her): The physiotherapist I went to was super kind. She was very clear that I was in control of the situation which was really great. The thing that was really good was she just started externally. She told me she wasn’t going to try and do any sort of insertion and just see how the muscles were reacting. I felt really comfortable.
AMANDA (she/her): I think the thing that I’ve appreciated has been from the physiotherapist and the cranial sacral therapist is that they work together. One, they get creative on how to do things and two, the humor. It’s not humor about the situation but distracting me during treatment has made a huge difference. And again, that transparency! She was transparent. I need transparency and I need conversation throughout to distract me and to stay calm. Just being a calming presence and not minimizing the experience, you know.
MADGE (she/her): I think this could be very unique to me and I’m not saying that this is what all practitioners should do with patients, but I am someone who really craves physical touch. The good parts were the times that my practitioners have engaged in safe touch with me that did not involve my vagina. That first gynecologist didn’t help me in a huge way but she did pull her glove off and sit down next to me and put her hand on my shoulder. My physical therapist is also really good about being able to clock when I’m dissociating. When she notices that happening, she makes sure to hold my hand and makes me stay present and maintain eye contact with her and she’s like, “hey not somewhere else right now, right here with me, I’m here with you in this place.” She also works with my psychotherapist and that’s been a real highlight. I signed a waiver and they don’t speak about anything outside of the vaginismus. It’s more so they can inform each other about the logistics of vaginismus and what’s actually going on with my body and how I might be mimicking that in in psychotherapy.
Have you found treatment accessible? How long have you had to wait, travel, or pay for treatment?
KATRIN (she/her): For the gynecologist, the wait list was a couple of months and hence I felt like I was sort of in stagnation mode. Maybe if the family doctor had told me some things I could practice so I could feel like I was making progress before going see the gynecologist would have been nice. The sex therapist was somebody that was downtown and that felt less accessible. There were fewer choices in who I could see for a sex therapist. The fact that I had to use my boyfriend’s parents benefits to see the sex therapist tells you how inaccessible that was. Many people wouldn’t have had that conversation to do it. Another thing was accessing dilators. It’s taboo to go into an online sex store or physical sex store and that’s where they’re sold usually. I want to add on that the dilators that are recommended by medical professionals are the worst ones on the market. They’re plastic, it feels like a foreign object in your body if you’re even able to insert it. The instructions that come with them were absolutely terrible as were the instructions from my sex therapist. Now I’ve reviewed like pretty much all the dilators on the market to give people an idea of which ones to go for.
SHEENA (she/her): I’ve always lived in a relatively major city. So, I think that just having access to public transport or even a car helped a lot. But since I was in big cities, they were all just much closer. In terms of cost, if I was paying this out of pocket, I would not go. I think for the first physio I went to, their initial appointment was either $120 or $150 for an hour and then the follow-ups were about $90.00 for 45 minutes. The insurance was through my parents so I had to call my mom and say I was having a lot of pain with tampons and ask if I could get that covered through our insurance and then she was just like OK you have $500 coverage per year so try to use it slowly. The dilators were also really expensive. I did so much research and I was like, OK, I definitely want silicone ones, not plastic, but they’re so much more expensive. It was $100, if not more.
AMANDA (she/her): Fortunately, I live in a large city. My gyno is down the street and my physio is like a couple exits off the highway kind of thing so physical location wasn’t bad. In my search to try to find a therapist who understands vaginismus or anything in that pain area I had to go out of town. With the exception of my gyno and part of the physio it was out of pocket and it’s hundreds and hundreds of dollars. For physiotherapy it was $175 to $200 for a session so I’m putting it on different credit cards to see what I can afford. The cranial sacral therapist was willing to do a sliding scale for me, but she normally charges around $200-$250 a session. The sex coach was also willing to do a sliding scale but she’s normally about $150 a session. Insurance definitely doesn’t pay for that. I want to go back to either seeing a therapist or go back to the cranial sacral therapist, but I can’t afford it. It really detracts from any kind of treatment. It’s a rich person’s disease. So then you rely on online resources which is nice but everyone there is so young and those of us that are older don’t really engage as much. So really, there’s really no outlet.
MADGE (she/her): I’m super privileged in a lot of ways, financially I don’t have a lot of money, but I’m educated and I have a team who were able to direct me to the right places. It’s not affordable at all. Getting an appointment, it’s wild wait times. To get there I just rode my bike. If I was still living in Outback Australia, which I am from rural Australia, where would I have gone? I can’t put it through insurance. My physio explained to me that if they were to accept insurance it wouldn’t be conducive to patient healing since they wouldn’t have enough time with you and they would be rushing. Some of them are $350.00 an hour. Like what do you do? That’s impossible.
If you could say anything to a group of healthcare providers, what would it be?
KATRIN (she/her): First, I would want them to speak to somebody who’s gone through it before to understand what life is really like so that they can more effectively put themselves in the other person’s shoes. The biggest message I would want to put out there is how important it is to avoid re-traumatizing their patients. So that means a pelvic exam should not even be attempted in many cases. Many people feel like they’re just pressured to do it because they’re supposed to, and the cycle of pain goes even deeper. Yeah, if we can stop re-traumatization as step one, I think we could be avoiding a lot of damage.
SHEENA (she/her): Obviously this is very clinical with physios and dilators. But then there is also the emotional side to it. With vaginismus you tie your self-worth to it. All my physiotherapists said if you do your homework you’ll move along quicker but like honestly, it’s hard. So, if somebody isn’t doing their homework it’s not because they don’t want to heal, it’s because there’s more to it. It’s so hard for someone who hasn’t had it to really understand how it feels.
At the beginning of my treatment, they asked me what my goals were and I told them I wanted to be able to have P-I-V sex. I got to be able to use fingers and dilators but I was never in a relationship the whole time. I was like am I just going to have to dilate indefinitely? It just got to a point where I stopped because I wasn’t seeing anyone. I was down for a casual relationship even though that wasn’t what I wanted just because I wanted to see where my progress was. I think that when it comes back to the medical part there has to be other ways to assess where you’re at as opposed to just with what size dilator you’re on.
AMANDA (she/her): I’d say learn everything you can from your patients and others. Get to know all the different perspectives and realize it’s not just as clear cut as the educational books would paint it out to be. You know, there was a psychiatrist I worked with who once said medicine is not science. It’s more like an art. It’s like painting. You could have two clients in front of you that have the exact same symptomology, but you’re going to paint this one with blues and reds and this one with greens and yellows. I feel like to me that has been the most important thing in working with anyone in medicine. You need to individualize your treatment based on what that person’s experiences are and don’t dismiss those experiences.
Also, if you’re going to recommend dilating practice, teach us how to use dilators. Learn what dilators are out there because the hard plastic ones are the only ones they’re taught and they’re God awful. Last year my doctor thought I could be starting perimenopause and sent me for a transvaginal ultrasound. These ultrasound techs are just taught to work with a machine, but they have to learn how to deal with the people too. That’s why I feel across the board this is something that I wish more people learned about and was more publicized. It’s more than just the gyno, it’s more than just the physio, it’s all kinds of different people that are involved in these professions that may need to interact with us on that level. It’s horribly time consuming and nerve wracking when you’re having to retell your story. It’s like a trauma thing, you don’t want a trauma victim to retell their story 500 times ’cause they’re re-traumatizing themselves.
MADGE (she/her): I think all of these practitioners need to be trauma informed. I don’t have the qualifications myself to fully outline what that means, but I have worked with people who are trauma informed and it makes a difference. Know that most of the people that are coming to you with these kinds of issues are dealing with a shame that you might not comprehend and for them, it’s really hard to be here. Also, don’t think think of your clients as untouchable, as long as you know what their boundaries are. A hand to the shoulder or hand to hand can be really nice. I mean, what’s your intake form? What can you learn about your patient before you see them? I was going to say you don’t need to know their favorite music, but then also maybe you do. Maybe it’d be cool to have that on it. How do you foster a safe space for them? Do you have blankets or is it kind of cool? Crystals? Essential oils? Headphones for healthy dissociation? What’s your client’s self-soothing practices? Do they need nine pillows on their bed to feel comforted?
Is there anything else you’d like to add? Or any messages for anyone else struggling with this?
KATRIN (she/her): If I could send the energy rather than the words, that would be so amazing to help people feel less alone, to help people feel like there is hope. Very likely, the methods that they have tried so far are one piece of the puzzle and they’re an amazing piece of the puzzle. But, I would encourage them to look at the wider scope because overcoming vaginismus has so much to do with self-love. We often only concentrate on the pelvic floor muscles but it’s so much about the bigger picture. It’s like a mental, emotional, and even spiritual healing journey. *Katrin offers vaginismus coaching, you can find her at @pain.free.and.intimate*
SHEENA (she/her): Even the friends who are supportive like they understand to some extent, but they don’t fully get it. Being able to hear other people’s experiences has definitely helped. I was like oh ok there is some hope for me.
AMANDA (she/her): I think for people dealing with it, it’s that we’re out there, you’re not alone, and get vocal. I get really excited to see all the different Instagrams that are out there on vaginismus. And you know, while I’m not out there speaking about it, it’s nice to see other people feeling comfortable to do that. There are people that can support you through it. There’s more of us than you think.
MADGE (she/her): This kind of pain is always going to fucking suck, but it’ll suck a whole lot less if it’s not knotted in shame. I do encourage people to speak about it. I’ve never felt more connected to myself and others than I have in this past year since speaking about it. And it is not easy. I am still very tender about this. I guess I don’t want to say you’re not alone, like please speak out, and find your community. I don’t want to say that, but I guess that’s at the root of what I am saying. *Madge is currently in production for a queer series on vaginismus, you can find out more at @projectmashed*
An enormous thank you goes out to those who participated in this project. These four narratives show us a glimpse of what it’s like trying to get treatment for vaginismus; but they are not the whole story. By sharing these stories I hope to bring awareness to medical practitioners about vaginismus and offer a guiding light on how-to and how-not to treat it.
Resources:
1. Pacik PT, Geletta S. Vaginismus Treatment: Clinical Trials Follow Up 241 Patients. Sex Med. 2017 Jun;5(2):e114-e123. doi: 10.1016/j.esxm.2017.02.002. Epub 2017 Mar 28. PMID: 28363809; PMCID: PMC5440634.
2. Sheva Marcus B. Sex points: Reclaim your sex life with the revolutionary multi-point system. Hachette Books; 2021.
