Vaginismus, Vulvodynia, Endometriosis And Uterus Didelphys – An Incredibly Tough Reality

Trigger warning: Mention of rape.

Vaginismus is usually defined as pain related to a psychological reaction in which the woman associates sexual activity with pain and fear.

There’s a so-called phobia of any penetration or in some cases, anything going near the vagina.

Just the thought of penetration, or any attempted penetration, gives involuntary muscle spasms around the vaginal opening.

Why some women develop vaginismus and others do not is still unknown.

In some cases, the condition may occur after a period of pain in the vagina – for whatever reason that may be, or it can be due to many attempted and failed painful intercourses as mentioned above.

Physical abuse or sexual abuse can also lead to vaginismus.

The same is true for traumatic medical procedures experienced in childhood, painful first intercourse, fears that the vagina is too small, problems in relationships, and fear of pregnancy.

So here is my story of what vaginismus has been like for me and how it has affected my life.

I have never had normal intercourse. Meaning sex for me has always been very painful.

My situation is more complex since I also have 3 other diagnoses on top of vaginismus – vulvodynia, endometriosis and I was also born with a double uterus, double cervix and a double vagina – also called uterus didelphys.

When I was a child I experienced a lot of stomach ache and pain “down-there” but it went undiagnosed for many many years.

The doctors couldn’t explain why I had such severe flares but I always knew there was something different about me.

I couldn’t explain it either but I knew there was something unusual with my body.

When I was 15 years old a boy I knew and liked
tried to rape me but because of my condition
(double vagina) he didn’t succeed.

But he caused major damage to my septum and when I got home after the incident and ran into the shower I saw small pieces of skin/flesh covered in blood running down my thighs.

This is when I realized that I indeed was different. I never told anyone about this. I just went to bed and hoped everything would go away the next day.

Fast forward to when I was 21 I met a young man who would become my boyfriend and fiancé for almost a year.

He was physically abusive…

And so I thought the reason why I couldn’t have sex with him was because my body maybe rejected him because our relationship was so toxic.

So I went to see a gynaecologist to see what was wrong since it was impossible for him to penetrate me.

It felt like he was hitting a wall and it was so painful.

She asked me to lie down and put my legs on the stirrups and before I knew it, before she even asked me about my previous history and with no anesthetics – only local numbing crème – she just started “cutting me open”.

She said something about two vaginas and that she had removed parts of my septum but I was in so much pain that I think I fainted and never really understood what had happened.

I was put in a taxi and sent home where I just laid in bed for weeks and couldn’t move.

I was told to have sex after two days after the procedure to avoid the wound closing together.

So I did. And the saying “a part of me died that day…” suddenly made so much sense – only for me so many parts did.

My vaginismus diagnosis came after years of suffering.

I’ve never been able to use a tampon, go through
a gynecological exam, or even touch myself
down there to either clean or lubricate
or for whatever reason.

I ́ve always had to find alternative ways to do these things.

And then there is sex. Which has been extremely painful EVERY TIME – MY WHOLE LIFE.

I have tried every treatment available. Nothing has ever worked.

I still have the same pain as I had 20 years ago. I mean, other people get awards for such long-standing and consistent results..

But I’ve been through the entire palette of emotions with this.

At first there was curiosity because I was young and wanted to know what was going on.

Then came desperation because nobody wanted to listen to me and said “you’re fine work on your mental issues”.

Years went by and then I found relief because I finally got my diagnosis.

But nothing happened after that so again there was frustration because even though I had my diagnosis and doctors acknowledging my pain and suffering…

There was NOTHING that helped the physical pain.

I had relationship after relationship fail until I stopped and convinced myself that I wasn’t woman enough to be with a man since I couldn’t satisfy him sexually.

Then 10 years ago I met my husband who in the beginning seemed like prince charming – handsome, successful, strong and compassionate.

That was the first 3 months of our relationship until we got married.

Then came the blame and mental abuse with me not being woman enough or good enough. It went on for years with mental abuse and forcing me to have intercourse even though it was so extremely painful…

But as he said “it was my duty as a wife and sometimes we all do things we don’t like for the other person”.

This was his justification for why I had to endure such suffering. So he could get what he wanted. And I did it and cried after. But it became so normal at some point that I stopped crying.

And I did it and cried after. But it became so normal at some point that I stopped crying.

I felt nothing. It was just part of being alive. So it continued like this for a really long time.

Right now I am on my 110th round of both physical and phycological therapy.

I’ve been doing my kegel exercises for many years but a year ago my physical therapist told me to stop because it might have the opposite effect.

It’s really hard to understand my own body sometimes because when my therapist tells me to relax I feel like I’m completely relaxed… But she says that she feels only a tiny bit of change in muscle relaxation and she still cannot insert the tip of the smallest dilators or her pinky finger.

But I continue going to therapy, both physical and working on my mental health because I will never give up hope.

I might just wake up one day and it will help me.

Sometimes when I write these stories I can’t believe they are my own personal life-experiences.

Some of them are not something I could have prevented…

But others, like my relationships, I often think are my own fault.

Because I chose these men and even though that’s the truth, I don’t believe anyone chooses to have bad things done to them.

So I’ve decided that for me my story is tough and there is a lot of suffering – but in there is also a lot of is strength to be found…

There are a lot of lessons and a whole lot of teachings I can hopefully use to make someone else’s life a little easier.

I have chosen to share my story so that other women coming from a culture like mine where women’s sexuality is taboo and sex in general is never talked about can find understanding and a voice.

A community where we all have a voice and
can share our thoughts and feelings
without being judged.

A place where we all can make a difference and help others overcome the challenges of being born into this world. In which for some, being heard may be a great privilege not to be taken for granted.

– Anonymous (40 years old, Copenhagen, Denmark)

P.S. I am working to raise awareness especially amongst women from Muslim communities because sex and women’s health are so taboo in these groups!