Liv­ing with vagin­is­mus: More than mus­cle contractions

von Britta
Leben mit Vaginismus, Diagnose Vaginismus, vaginismus.hilfe, Vaginismus, Schmerzen beim Sex, Scheidenkrampf, Schmerz und Sexualität, Erfahrungsbericht Vaginismus, kein Sex wegen Schmerzen, Dilator, Dilatoren, Vulvani

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.

Diag­no­sis: Liv­ing with 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. 

Leben mit Vaginismus, Diagnose Vaginismus, vaginismus.hilfe, Vaginismus, Schmerzen beim Sex, Scheidenkrampf, Schmerz und Sexualität, Erfahrungsbericht Vaginismus, kein Sex wegen Schmerzen, Dilator, Dilatoren, Vulvani

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. 

Veröffentlicht am 20. October 2020
Von Britta
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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