WIDLIMS podcast ep #18 – Painful penetration with the Vaginismus Network
In this week's episode, I was delighted to have Natalie, a volunteer from the Vaginismus Network, come and speak to me. We talk about...
- What vaginismus is, how it is classified and how it is diagnosed
- Research on vaginismus and painful sex (or lack thereof)
- Theories about why women’s pain and pleasure is rarely in focus.
- Personal experiences of people with vaginismus
- How healthcare professionals can do better
DISCLAIMER: nothing in this episode is intended as individual medical advice. The information in this podcast and in the blog post below is for educational and entertainment purposes only. While there is a lot of useful information for healthcare professionals, I would recommend that patients also seek medical advice if they are concerned about anything raised in this episode. Natalie also wanted me to stress that she can only speak from her own experience, and is also not giving medical advice or suggestions.
CONTENT WARNING: sex, sexual assault, painful sex, genital surgery
Mentioned in the episode
- Vaginismus network socials: Instagram Website
- Natalie’s testimonial blog post on the Vaginismus Network – CLICK HERE
- Kate Lloyd in the Guardian ”It destroys lives’: why the razor-blade pain of vaginismus is so misunderstood” – CLICK HERE
- Scientific article by Binik – CLICK HERE
- Lili Loofbourow article in The Week – CLICK HERE
- Bustle articles – references 17,18&20 linked below.
- Research with statistics from UK women and painful sex – CLICK HERE
- NHS page on Vaginismus – CLICK HERE
- I would very highly recommend THIS ARTICLE FOR HEALTHCARE PROFESSIONALS AND MEDICAL STUDENTS. It is by the BMJ, and very good and concise but with sensible recommendations and research. It is not open access, but you should be able to log in via your institution.
Background Article – Vaginismus
No health issue should be too taboo to address, and yet, many suffer in silence with painful sex. This disproportionately affects people with vaginas, as both their pleasure and pain is often dismissed, and not as centred as that of cis men (men who were assigned male at birth and still live their life as males). I have known about vaginismus for a while, but was surprised when neither my gynaecology teaching, nor my psychiatry teaching covered the condition at all. I had seen it mentioned in Netflix shows such as Unorthodox and Sex Education, but not discussed at medical school – how are healthcare professionals expected to know about this condition, and counsel patients on it?
I reached out to the Vaginismus Network, asking them for an interview. I also came across some heart-breaking yet inspiring testimonials on their website, including that of Natalie, who I ended up speaking to, who referred to an article by Lili Loofbourow (1,2).
Women have spent decades politely ignoring their own discomfort and pain to give men maximal pleasure. They’ve gamely pursued love and sexual fulfillment despite tearing and bleeding and other symptoms of “bad sex.” They’ve worked in industries where their objectification and harassment was normalized, and chased love and sexual fulfillment despite painful conditions no one, especially not their doctors, took seriously.
Lili Loofbourow, The Week
What is vaginismus?
Vaginismus is a condition which causes painful vaginal penetration at entry point, and is often described as involuntary spasms of muscles (3,4). However, the condition is not truly understood, nor is the proposed spasm/muscle tightening mechanism. The NHS page on the condition is very brief and concise, and information is scarce (3). New criteria for diagnosis and understanding it have been proposed: essentially, vaginismus is when a person is mostly unable to achieve penetration when they would like to (whether the penetration is sexual in nature or not) (5,6). Vaginismus is in fact now grouped together with dyspareunia in the latest DSM (a medical diagnostic manual). It is called genito-pelvic pain/penetration disorder (7,8).
While there likely is a physical element to vaginismus, it affects people in many more ways than not being able to physically achieve penetration.
- sex – affects relationships, being intimate
- infertility – there is a risk of not being able to get pregnant
- menstruation – insertion of tampons, menstrual cups etc may be difficult or impossible
- smear tests – missing out on these carries health risks
- tips on how to manage can be found here: https://www.thevaginismusnetwork.com/smear-tests
Who does it affect?
Causes of vaginismus can be primary or secondary and include (4,9,10):
- trauma, such as sexual abuse
- cultural ideals: shame, fear of sex etc.
- after surgery, traumatic childbirth, underlying medical condition
- infection
- no known cause
Statistics vary and are likely unaccurate due to the nature of the condition: some figures include that is thought to affect 1 in 500 in the UK, about 1% in the community – but little research is conducted into it (2,11-13).
Research on vaginismus
There are some good articles written on vaginismus, but I had to dig a little in order to find them. You will find them as references at the bottom of this article, and some were referred to during the podcast episode. A particularly good article is this BMJ article, as well as this literature review.
This is what I found when I went to have some searches on PubMed.
- “vaginismus” yielded about 800 results, of which 300 articles were open-access
- narrowing the search to papers with “vaginismus” in the title = 19 papers, up to 28 when widening to “vaginismus” mentioned in abstract
- “dyspareunia” yielded about about 3,500 results
- down to 380 when narrowing to papers with “dyspareunia” in the abstract
- erectile dysfunction yielded over 9000 results – more than ten times that of vaginismus, and more than double that of dyspareunia
This is not the most scientific method to demonstrate my point perhaps. But there is no question that it is underresearched. Even the Cochrane review looking for evidence about the best interventions to recommend for treating vaginismus states that the available research has small sample sizes and is of poor quality (2,13).
Painful sex
Vaginismus is not only about painful sex, but it is usually part of the problem. Painful sex is called dyspareunia in medical terms, and may have various causes. One study published in 2017 found that 7.5% of women in UK experience painful sex, dyspareunia (14,15). About 2% experienced ‘morbid‘ pain which was defined as very often/always occurring, leaving them distressed or lasting at least 6 months. I find it shocking that there even is a classification of morbid pain, with such a definition!
There also is a different term given to pain in the genital are that is not quite internal, and it is called vulvodynia and also covered in an NHS information page (16),
But should sex even hurt? Should the area ‘down below’ ever hurt? No!
It is pretty much socially accepted to dismiss women’s pain, and to assume that penis-in-vagina sex is supposed to hurt. Sex should not hurt, that narrative is harmful, and it also ignores how there is other types of sex than penis in vagina, or involving penetration at all (17,18). Queer people can struggle with painful sex, as shown on Sex Education (19,20).
Treating vaginismus
There are many things that can be done in order to manage and even overcome problems associated with vaginismus. Widely used techniques include desensitisation with dilators, psychological therapy and biofeedback (9,21). As Natalie says in the episode, there are many different things that work for different people, and results can happen fairly quickly though not overnight, rather than waiting and suffering for years.
Tying it all together
So, we do know a little bit about vaginismus, and painful sex in general. There is some research, but it is not easy to find or accessible to everyone. That is why organisations such as the Vaginismus Network are so important, as personal narratives and sharing stories can be incredibly powerful. I would highly recommend reading the references linked below, or focusing on those linked at the top of the post.
Resources for HCPs
- BMJ article on causes, diagnosis, investigations and management of vaginismus https://www.bmj.com/content/338/bmj.b2284.long
- COSRT https://www.cosrt.org.uk/about-cosrt/
- IPM https://www.ipm.org.uk/
- Specialist knowledge needed for HCPs, talking about how using dilaters isn’t as easy as it may seem https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4475318/
For patients/general public
- The Vaginismus Network https://www.thevaginismusnetwork.com/ – community, guides, partnering up service
- Vaginismus.com https://www.vaginismus.com/ – lots of information about vaginismus and dilators
- Sex and U – lots and lots of resources, Lgbt friendly https://www.sexandu.ca/
REFERENCES
1) The Vaginismus Network. My experience with vaginismus, by Natalie. https://www.thevaginismusnetwork.com/blog/2019/12/9/guest-blog-my-experience-with-vaginismus-by-natalie
2) Loofbourow, Lili. The female price of male pleasure. In The Week, 2018. https://theweek.com/articles/749978/female-price-male-pleasure
3) NHS UK. Vaginismus. https://www.nhs.uk/conditions/vaginismus/
4) Vaginismus.com. Vaginismus definitions. https://www.vaginismus.com/vaginismus-definition
5) Binik, Y.M. The DSM Diagnostic Criteria for Vaginismus. Arch Sex Behav 39, 278–291 (2010). https://doi.org/10.1007/s10508-009-9560-0
6) Table with new proposed criteria, corresponding to Binik’s article above. https://link.springer.com/article/10.1007/s10508-009-9560-0/tables/1
7) Psychology Today. Genito-Pelvic Pain or Penetration Disorder (Sexual Pain Disorder). https://www.psychologytoday.com/intl/conditions/genito-pelvic-pain-or-penetration-disorder-sexual-pain-disorder
8) IsHak, MD, FAPA, Waguih & Tobia, Gabriel. (2013). DSM-5 Changes in Diagnostic Criteria of Sexual Dysfunctions. Reprod Sys Sexual Disorders. 2. 122. 10.4172/2161-038X.1000122. https://www.longdom.org/open-access/dsm-5-changes-in-diagnostic-criteria-of-sexual-dysfunctions-2161-038X.1000122.pdf
9) Crowley Tessa, Goldmeier David, Hiller Janice. Diagnosing and managing vaginismus BMJ 2009; 338 :b2284 https://www.bmj.com/content/338/bmj.b2284.long
10) Lahaie MA, Boyer SC, Amsel R, Khalifé S, Binik YM. Vaginismus: a review of the literature on the classification/diagnosis, etiology and treatment. Womens Health (Lond). 2010 Sep;6(5):705-19. doi: 10.2217/whe.10.46. PMID: 20887170. https://journals.sagepub.com/doi/pdf/10.2217/WHE.10.46
11) Simons JS, Carey MP. Prevalence of sexual dysfunctions: results from a decade of research. Arch Sex Behav. 2001;30(2):177-219. doi:10.1023/a:1002729318254 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2426773/
12) https://www.evidentlycochrane.net/vaginismus-ruining-sex/
13) Melnik T, Hawton K, McGuire H. Interventions for vaginismus. Cochrane Database of Systematic Reviews 2012, Issue 12. Art. No.: CD001760. DOI: 10.1002/14651858.CD001760.pub2 https://www.cochrane.org/CD001760/DEPRESSN_interventions-for-vaginismus
15) Mitchell, KR, Geary, R, Graham, CA, Datta, J, Wellings, K, Sonnenberg, P, Field, N, D, Nunns, Bancroft, J, Jones, KG, Johnson, AM, Mercer, CH. Painful sex (dyspareunia) in women: prevalence and associated factors in a British population probability survey. BJOG 2017; 124: 1689– 1697. https://obgyn.onlinelibrary.wiley.com/doi/full/10.1111/1471-0528.14518 PDF found here: https://obgyn.onlinelibrary.wiley.com/doi/pdf/10.1111/1471-0528.14518
16). NHS. Vulvodynia. https://www.nhs.uk/conditions/vulvodynia/
17) Weiss, Suzannah. Here’s Exactly How to Make Sure Sex Doesn’t Hurt The First Time, According To A Sexologist. Bustle. https://www.bustle.com/p/should-it-hurt-the-first-time-you-have-sex-heres-exactly-how-to-make-sure-it-doesnt-according-to-a-sexologist-8481512
18) McGowan, Emma. Painful Sex Is Physical & Psychological. Here’s How We Stop It. Bustle. https://www.bustle.com/p/why-is-painful-sex-so-hard-to-treat-ask-our-culture-19268597
19) Lauren. How I learned to navigate vaginismus as a lesbian- personal story https://www.autostraddle.com/how-i-learned-to-navigate-vaginsmus-as-a-lesbian-399788/
20) McGowan, Emma. We Need To Talk About Having Painful Sex As A Queer Person. Bustle. https://www.bustle.com/p/pain-during-sex-for-queer-people-needs-to-be-talked-about-19448080
21) Macey K, Gregory A, Nunns D, das Nair R. Women’s experiences of using vaginal trainers (dilators) to treat vaginal penetration difficulties diagnosed as vaginismus: a qualitative interview study. BMC Womens Health. 2015;15:49. Published 2015 Jun 20. doi:10.1186/s12905-015-0201-6 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4475318/
