Aug 13 2020 | Words by Miranda Vanhaarlem, Graphics by Sissi Chen, in collaboration with Michelle Fraser, a pelvic health physiotherapist , and Hannah Kilarski, who has had first-hand experience with vaginismus.
Copy and paste. That is what came to my mind after a quick google search of vaginismus. Every site I clicked on basically displayed the same information over and over again.
Roughly 2 in every 1000 individuals with a vagina have this condition. While this might seem like a smaller number to some, when put into perspective, over 30,000 individuals in Canada alone have vaginismus. It is also hard to know for sure how many individuals have vaginismus as some do not seek medical help and, if they do, could be misdiagnosed. If this affects so many individuals day in and day out, why is it not talked about more? With this blog post, we hope we can bring vaginismus out of the dark and make it known through resources and medical support, while reminding you that you’re not alone in this experience.
For this blog post we brought in outside sources to get a better understanding of vaginismus. We had the pleasure of interviewing two individuals, Michelle Fraser, a pelvic health physiotherapist , and Hannah Kilarski, a student who has been recently diagnosed with vaginismus.
Michelle is a pelvic health advocate and educator who works with persons of all genders experiencing pelvic floor dysfunction or interested in understanding the complexities of pelvic health, with specific interest in the intersection of menopause, trauma, global health, and of the LGBTQ+ community.
What is Vaginismus?
Vaginismus is an involuntary contraction of the pelvic floor muscles that surround the vagina. This can lead to an inability to have vaginal penetration because of tightness or pain.
Vaginismus is not a disease – usually there is nothing wrong with the tissue. It is simply an involuntary, sustained muscle contraction, similar to long standing tension or muscle cramps that we may experience in our neck muscles or low back muscles.
How does an individual know they have Vaginismus?
If a person finds that vaginal penetration is mechanically difficult or impossible (there is a “block”), and/ or there is pain with penetration, they may be experiencing vaginismus. The person may notice this during sexual activity, when inserting a tampon, or when undergoing an intra-vaginal gynecological examination.
Vaginismus can lead to other medical and psychological difficulties. For example, a person may avoid intercourse or other penetrative sexual activity because of fear of pain. Some people worry that they will not be able to become pregnant or deliver a baby. Some avoid gynecological examinations. These concerns and experiences can affect a person emotionally and physically, and may lead to relationship, emotional and physical health challenges.
What are the causes of Vaginismus?
Vaginismus can begin unexpectedly. It can begin following an event that may present a physical or emotional threat, having a urinary tract infection, to childbirth, to fear related to using a tampon for the first time, to abuse, to menopause-related vaginal dryness.
Our nervous systems respond to threats in order to protect us, whether the threat is real or perceived (a fear of something that may or may not happen). Part of this protective response is contraction of the pelvic floor muscles. Think of a frightened puppy with their little tail pulled in between their legs – this tail movement is caused by the puppy’s pelvic floor muscles. The same happens in humans; we don’t have tails so it is not as visible with us… but the process does happen.
An event that involves threat or perceived threat can cause tension in the muscles of the pelvic floor. This response is helpful to us as a protective mechanism. This is helpful as long as it resolves itself once the threat is gone, allowing the pelvic floor muscles to relax again. This does not always happen, leaving us with residual pelvic floor muscle tension. If this is the case, penetration may be difficult because the muscles surrounding the vagina will not allow themselves to elongate, resulting in pain and a physical block. This may lead to heightened emotions such as fear or frustration, or to an enhancement of the self-protection mechanism of increased tension…and the cycle continues.
What is the difference between primary and secondary Vaginismus?
Primary vaginismus means that the involuntary muscle activation happens the first time penetration is attempted, for example the first time having intercourse. Secondary vaginismus is when the involuntary muscle contraction occurs even though problem-free penetration was possible in the past. For example, a person may have not had an issue with intercourse for many years, and then developed vaginismus after undergoing a gynaecological procedure.
What is Dyspareunia? Are Dyspareunia and Vaginismus interconnected?
Dyspareunia is pain with sexual activity. Vaginismus may be a cause of dyspareunia: tension in the pelvic floor muscles may lead to pain with intercourse.
Can Vaginismus go away on its own? How does one treat Vaginismus?
Knowledge is power – it can be a relief to know that the main culprit with vaginismus is muscle tension. There is usually no disease process involved, and it is usually reversible. Understanding the mechanics of vaginismus and knowing that this can be resolved often allays fear, allowing the muscles to soften.
Understanding how our nervous system plays a part in pelvic floor muscle activation is also helpful. A pelvic health physiotherapist and a therapist can help by providing strategies to work with the nervous system to help it to soften, which would then allow the pelvic floor muscles to soften.
Sometimes, because the muscles have been tense for so long, the tissue in the area becomes stiff. Imagine having your ankle in a cast for 6 weeks – once the cast comes off, your ankle may be stiff, and it benefits from range of motion and stretching exercises. Just like at the ankle, the tissue around the vagina can become stiff; a pelvic health physiotherapist can teach very gentle stretching techniques to help this tissue become more mobile.
Retraining the pelvic floor muscles to work optimally will also be important. With vaginismus, the muscles only know how to be fully “on”. Once they soften again, it will be important to retrain them to turn on when they should be on, with the correct amount of tension, at the right speed, and in a coordinated way with the rest of the inner core. In the same way that we rehabilitate our ankles after a fracture, we can rehabilitate our pelvic floor once vaginismus has softened.
Is Vaginismus a form of anxiety?
In our current society, do you believe there's a stigma associated with female’s pain? In other words, do you think society perceives female pain as constructed or exaggerated?
Sometimes, persons experiencing vaginismus feel that they are unable to talk to anyone about their symptoms. They fear that nobody will understand. Sometimes, a person will not realize that vaginal penetration is ideally not painful at all – they think that it is normal to have pain. And sometimes, they speak with their health care practitioner about this pain, and they feel as though their symptoms are not being taken seriously. This can happen with persons of all genders who are experiencing pelvic floor symptoms.
Over time, we are learning more about the pelvic floor. It is becoming more common, and therefore easier, to more openly talk about pelvic symptoms and functional issues that have previously been taboo. It can be difficult for people to talk about the most intimate aspects of their lives, even with their health care providers. This can be even more difficult for transgender and non-binary persons, or for cisgender men experiencing pelvic floor pain.
In Canada, it is becoming increasingly easier to discuss pelvic health. Pelvic health physiotherapy, once an inadvertent secret, is now becoming normalized. Health care providers are learning more about how to work with pelvic health conditions such as vaginismus. The social stigma of talking about such conditions is decreasing, and we are recognizing that all persons can experience pelvic floor dysfunction. Because of these changes, a person can have more confidence that their symptoms will be taken seriously and understood by their health care practitioners.
Michelle’s knowledge surrounding the pelvic floor and in particular conditions within the pelvic floor has allowed us at Marlow to have a greater understanding of vaginismus and other conditions that affect individuals every day. In particular, Michelle has opened our eyes to how some of these conditions can affect menstruators. We thought it was of great importance to hear someone’s experience with vaginismus, in hopes of helping others who have also been diagnosed, or those who are experiencing difficulties and do not know what the next step is.
A Conversation with Hannah Kilarski
Hannah is a young woman who bravely posted her journey with vaginismus on her youtube channel - both to get advice as well as hear from others going through the same thing. With overwhelming support on her video, it became apparent that resources and information were extremely lacking on conditions such as vaginismus. We wanted to combine both of these interviews into a blog post so individuals can not only receive information from Michelle, a specialist, but also hear Hannah’s first hand story.
We have linked Hannah’s Youtube video below.
How would you describe Vaginismus?
I would describe vaginismus as the lack of control of the muscle surrounding your vagina, which sucks because when something is out of your control you can’t do anything about it. It’s not only incredibly painful to push against your body, but it’s incredibly frustrating when it feels like nothing you are doing is working and your body isn’t listening to what you want.
When did you first realize you had vaginismus and what were your initial thoughts?
I went to the gynaecologist for the first time at around 16 because I was concerned that I wasn’t able to get a tampon in yet. Before my examination, she told me some things that could be wrong which seemed to be potentially worse so I was almost relieved when she told me it was vaginismus. It wasn’t until I went home and started googling that I really freaked out about not only the lack of information about what to do but what seemed like the lack of people that were going through the same thing.
If and when you started reading about vaginismus online, were you surprised by what you found?
Honestly, yes. I talked a lot about it to my mom at the time but I would describe it as every website copying and pasting the information they had about it from one source. I probably read 50 different websites or articles from blogs to medical journals that all said the same things about it. I remember specifically one website that crushed my heart. It read “vaginismus is nothing to be ashamed of and not your fault but will affect your relationships and potentially your quality of life”. It changed everything I had thought about what I was going through.
When the media does talk about vaginismus, do you think they do it correctly?
Lily in “Sex Education” is the one and only time I had seen the media describe or talk about vaginismus. While everyone’s story is different, I do think Sex Education reflected some of the problems I faced with vaginismus and the self-confidence issues I had at the time. One of the reasons I posted my youtube video was to let people know that they weren’t going through it alone and that they weren’t “weird” or anything because it’s not something people want to open up to on their own. It feels embarrassing.
“It’s not you, it’s me. I have something called vaginismus. My vagina’s like a Venus flytrap.” - Lily’s response after screaming “Ow!” while engaging in intercourse. See Season 2, Episode 7 of Sex Education on Netflix to watch the full episode.
Have you ever met another person with vaginismus?
Weirdly enough, my best friend also has vaginismus. She was not my best friend when we found out we both had it but I think it made us closer. She watched the youtube video that I posted and told me at work she was going through the same thing. It was a really weird coincidence because I have never met anyone else with it other than women who have reached out to me online.
Do you believe the current menstrual products available (pads, liners, tampons, cups etc.) are inclusive to all females despite the conditions they may have?
Have you tried any of the treatment options available for women with vaginismus? If so, what is your experience with them?
I have not tried any professional treatment options - primarily out of fear - but I have used silicone dilators and they have helped me a bunch!
What is your advice to other individuals that have been diagnosed with vaginismus?
Keep pushing through. There is always a light at the end of the tunnel and there is always someone that will help you get there. Your self worth does not lie in how your body functions and it does not make you any less of a woman WHATSOEVER.
Be patient, be kind to your body, do what is right for you, and you will get through it.
We want to thank Michelle and Hannah for answering our questions and being so open. You can find a pelvic health physiotherapist in Canada here: Pelvic Health Solutions
Articles for additional information:
By Katrin with Love | Medium (Nov 21, 2019)
By Alexa Tsoulis-Reay| Medium (April 21, 2015)
Pelvic Health & Rehabilitation Center (April 19, 2018)