Gunn’s experience – 5 years since I was diagnosed with MRKH

GunnToday I am turning 21 years and on this day five years ago is the first time I was taken into the women’s clinic in Kristiansand.
Two years before this I had seeked help about my pain and cramping around the ovaries but were not taken seriously. In two years I was bedridden several times a year but not regularly. I fussed much about getting an doctors appointment and got it finally on my 16’teen birthday.

Here it was determined that something was not right and that I had to be checked out right away. MR images were taken and I was diagnosed with MRKH. When I got this diagnosis I was not sorry but frustrated, why did they wait so long before I got checked out, and when was I getting help with the spasms that occurred once in a while?
The day I was diagnosed, I was sent home without answers, and no time to let things sink in. Usually when you are diagnosed with anything one is entitled to a month’s free or sick leave. But I did not because it seems to the doctors that I handeled it to good that it should be needed.

With months to come I had not achieved anything other than an hour appoitment in Oslo hospital around Easter and the questions and everything was wrapped in my head, who would I talk to and what should I say? Was I not normal even tough I felt I was, something was wrong with me? What about the pain why I had the pain?
Finally Easter came and I was in Oslo, where I was greeted by a specialist that is similar to most specialists, they have no sense of humor nor so much sympathy for patients. I was talked about over my head like I was not there and I got very upset  because I got the feeling that I would not get the help I needed.

I get a message that I’ve been operated on, and that I am not allowed to touch it. Operated ??

The day after I was sent to be examin and I was told that I would be put under general anesthesia so that I would not interfere with their investigation of my body. It sounded reasonable and I agreed to it.
I woke up in a room with many other beds, I am quite tender and dizzy after the anesthetic but something feels a bit strange, I look down between my legs and find both blood and bandage, I am totally shocked and begins to take out the bandage. And while im doing this a specialist comes running and are mad at me, he finds a glove and pushes the bandage back in place. I get a message that I’ve been operated on, and that I am not allowed to touch it. Operated ?? I could hardly believe it and while im laying there my mother arrives and asks how the examin has gone and I ask her what they have done to me. But she has not been told anything. And I’m being wheeled off to a room where I shall spend the night without understanding anything.
I’m exhausted, I have pain and I’m confused. I constantly ask about getting more pain sets and it finally gets me to sleep.
The sun is coming in the window and tickle me in the eye, im on the wrong side of the bed and it feels like I’ve crashed into a wall, and there’s a man in a chair in the corner of the room … ?? I see visions even now? The man sitting in the corner takes up a pen and start writing something on a paper and asks if I’m awake. Sure I’m probably is I mumble.
There he sits and talks about something I do not remember, the head was not fully in place by the bizarre day before. There may be questions I was asked but I do not remember.
Im then told to go back to Kristiansand to be treated there and I go home with no idea what really happened. The next week I was in and out of the hospital and put under general anesthesia for several days in a row to replace bandage in the abdomen, by different physicians and some students. I think this was inappropriate but since my specialist in Kristiansand was at Easter holiday others had to take over his job.

 I ask several times to get psychological help but it is rejected by the doctor and things are really going down from that point.


I go back to Oslo to be checked up and get a final answer to what really happened. The specialist had managed to make a hole in my vagina by adding a large enough pressure with his thumb, pushed in with some hormone cream and bandage and categorized it as a neo-vagina, I was told to keep it open using medical dilators  and that I have to keep myself sexually active, if not it will grow together and if that happen they will not help me again. I’m being sent home confused, uncertain and ends up with depression and anxiety that makes me drop out of school. I ask several times to get psychological help but it is rejected by the doctor and things are really going down from that point. Im starting to think that I’m not worth anything and that the only thing what makes me a woman or normal is that I can have a normal sexual relations with men and it all takes a big toll on my psyche. Is all I’m worth that I can satisfy a man?

I still have pain and im trying to get help, but every time I put my foot into the specialists office they try to get down my pants to see and touch on my vagina, although it is not related to pain. I get uncomfortable and no longer wants to go to them, and spend time and effort to find out what is causing the pain. I already know that it is menstrual cramps but why is mine so much more painful than in any other woman?
I get my hormones tested and it turns out that I have too much testosterone in the body. But I do not get any treatment for this, because then I have to visit the specialists. And by this time I will not visit them because of the way they treated me in the past.

I have now concluded that I will no longer call me a woman because of all the stress I have suffered in pursuit of becoming more womanly.

I could no longer manage the school, and never finished my graduation, I spent all my time trying to find myself and try to get back on my feet feet mentally, and I have finally managed that.

I am now 21 years old and have now got my life back togethere, although I have not completed upper secondary school I got a job at the nation’s largest and most reputable tattoo studio.
I have now concluded that I will no longer call me a woman because of all the stress I have suffered in pursuit of becoming more feminine. So I have adopted intersex as my identity, this is something anyone with a DSD (disorder of sex development) can use if they are not comfortable with either women or men as their sexual identity. This has relieved all my gender pressures that I have experienced and I have found many people I can relate to as well that have been tampered with by doctors.
It has been an stressful and painful journey but I’m feeling ready to put it behind me, I still have much pain but this is something I’m trying to fix by changing the diet.

I believe in all of you out there who have had a rocky road, because of all we have to go through to get us where we want. Remember that you are who you are and you are who you will be, no one is better than you and you are allowed to show it to everyone.

Gunn T

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