Living with vaginismus: More than muscle contractions

Vaginism is a sexual dysfunction or pain disorder that is not often talked about nor explained enough. However, Leonie wants to change this with her anonymous Instagram account ‘vaginismus.hilfe’. In her bio she writes ‘Hi, I have vaginismus. My life, healing and sex with pelvic floor dysfunction. I put the fun in sexual dysfunction’. In our interview Leonie gives us insights into living with vaginismus. Thank you dear Leonie for your important educational work and openness around the topic!

How has your vaginismus story been unfolding? 

In retrospect, it already started with the use of tampons. I got my period quite early and could not insert a tampon. I couldn’t find the entrance of the vagina and the more I looked the more uncomfortable it became. But some of my friends found tampons uncomfortable – so I didn’t think anything of it at first. Later, when I wanted to have my “first time” with my then and first boyfriend, his penis only touched the entrance of my vagina and it hurt so much that nothing else worked. Even then I thought that it was normal that it hurt and so we kept trying, but it didn’t get better – on the contrary.

Diagnose: Leben mit Vaginismus

I then googled a lot and found nothing for a long time until I finally read about vaginismus and felt seen for the first time. Until then I thought I was the only freak in the world with this embarrassing problem. The diagnosis was later confirmed by a doctor.

What are your experiences with doctors?

The first gynecologist I went to with my problem, without knowing the name vaginismus at that time, unfortunately did not know what it was. When I sat on the chair with my legs apart, she said ‘You have to relax now, I can’t examine you like this and you shouldn’t be surprised that no penis is going in there’. In the end I got the tip to insert a mini tampon with lubricant. That wasn’t even the worst advice compared to what other patients hear from their doctors – like ‘have a glass of wine’. Nevertheless, her rude nature and lack of understanding got me so upset that for a long time I simply ignored my problem.

Even the specialist wasn’t able to help

Later I found a supposed specialist. He prescribed me some lotions and a balloon that you insert and inflate – actually intended for pregnant women to prepare for giving birth. At that time I couldn’t even get a little finger inside my vagina. So his method of treatment did not work, but he could not offer me an alternative either.

Which symptoms do you have?

Inserting something into my vagina usually does not work at all or only under severe pain. Penetrating sex is still not possible, I stay away from specula during my gynaecology visit and I do not even think about tampons. However, I have already made progress and can now introduce the third of five dilators.

Which treatment options have you already given a try? 

Dilators, physiotherapy and psychotherapy help me. Dilators are dildo’s that are scaled according to size, which you insert yourself and thus practice getting the vagina used to a painless penetration. This can also be called circlusion, which I like even better as a term because it focuses on actively enclosing or taking up the vagina instead of being passive. With dilators, it is helpful to use a mirror to see the entrance of the vagina and combine it with relaxing things like meditation, a hot bath or masturbation. Then you slowly work your way up to the next size, but this should never hurt, because you want to break the cycle of pain. In vaginismus, a connection of penetration=pain has been established in the body. By experiencing more and more often a painless penetration, this connection is overwritten in the pain memory. 

Living with vaginismus: Dilators, physiotherapy & psychotherapy

Additionally it is helpful for me to learn in physiotherapy how the pelvic floor works and how to relax it. In psychotherapy I talk about the mental side, i.e. the effects on my mind and also about possible triggers. 

Photo Credits: Leonie

How has your life changed since you learned that you have vaginismus?

I was absolutely relieved to find out that there is a name for this strange and terrible pain. From then on I was able to look for help and I also found some things I am now making progress with.
My boyfriend, my mother and some very good girlfriends know about it. Otherwise I keep a low profile. For one thing, because I don’t necessarily talk about sex in general with other people, but also because it is still very stigmatized.

How does living with vaginismus influence your everyday life?

I haven’t been to a gynaecologist for a very long time because I have had bad experiences and I haven’t let any speculum near me until now. Otherwise I still can’t have penetrating sex and so I find other ways to have fun with my boyfriend. But this also has its good sides. I have learned to communicate boundaries and to become creative. My therapist once said “People with sexual dysfunction are better in bed”. 

Why did you decide to start your Instagram account? 

I learned most of what I know from other people having vaginismus through an English speaking Facebook group. Unfortunately, there are very few sources or information in German. Therefore I eventually decided to do it myself. Although I can’t show anyone the queen’s way of healing (which doesn’t exist either), I can show what it feels like for me and that no one is alone with vaginismus.

Do you have any tips on how friends or family can help you with vaginismus?

The best thing to do is just listen to what I have to say and do not give any tips. When you tell loved ones about a problem, their first impulse is often to find a solution. But when living with vaginismus this is very difficult and also individual. A dear friend once suggested that I try it anyway, even if it hurts. But this is totally counterproductive with vaginismus – although I know that she meant it well and wanted to help me. Therefore it is better to ask the person what he/she needs and offer to accompany me to a medical appointment. 

Talking about living with vaginismus

And I think that it is great when people tell me that I am welcome welcome to talk and write about it. Most people affected talk about their vaginismus with very few people and therefore it is good to have someone to lean on. Or to know that I can message this specific person when I have reached a new dilator size and they will not find it strange but will celebrate me for it. 

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October 20, 2020
Britta Wiebe ist die Co-Gründerin von Vulvani. Am liebsten recherchiert, schreibt und konzipiert sie den ganzen Tag neue Artikel oder innovative Bildungsformate rund um Menstruation. Wenn sie nicht in der weiten Welt unterwegs ist, genießt sie ihre Zeit mit lieben Menschen im schönen Hamburg. | Facebook | Instagram | LinkedIn | Twitter

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