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. 

Britta Wiebe, period education, Vulvani
Britta 
Co-Foun­der Vulvani | britta@vulvani.com | Web­site | + posts

Britta Wiebe is the co-foun­der of Vul­vani. She loves rese­ar­ching, wri­ting and designing new arti­cles or inno­va­tive edu­ca­tio­nal con­cepts about mens­trua­tion all day long. When she is not tra­vel­ling the world, she enjoys spen­ding time with her loved ones in the beau­ti­ful city of Ham­burg in Germany.