Ingvild sharing her MRKH experience

ingvildMy name is Ingvild Johansen, born and raised in Ballangen, a small city in Ofoten, Norway.

I was born in the Easter 1973, unaware of what the future would bring me..

I was born with MRKH syndrome.

A warm spring day in 1986 started what would become a long and painful nightmare. It was the first time I knew something was wrong. Menstruation never came, but I had some pain that was so cruel that it can not be explained.

My mum suspected something was wrong and got me to the doctor, but there was not much understanding to get, they sent me home with a packet of paracetamol and with the claim that menstruation would come, but it never did. Finally my mom put her foot down and got me to a gynecologist in Narvik.

The tests showed that I was not created in the same way as the other girls, but this was an unknown phenomenon, yet he made an effort to find cavities in the vagina without success, drained uterus of old blood and sent me to Rikshospitalet. There I was warmly greeted by Dr Sverre Stray Pedersen, but because of lack of knowledge of this so far unknown phenomenon, he sent me on to another professor.

It was my first encounter with Professor Knut Jahr Bjøro, a wonderful doctor who was Daddy No. 2 for me.

I was his first case of Vaginal agenesis (MRKH) He had previously had patients who were born with absolutely nothing, but never received patients who were born with the uterus, but no birth canal.

To learn more about Vaginal agenesis he took my journal with him and traveled to Germany and came back with a little more knowledge about the syndrome and then started a painful and long nightmare. I have no figures on how many doctors and medical students who have stood there and looked me between the legs, half  of Norway … I think. The psychological pressure was so great that the medical students did not attend before I was fast asleep.

I was often hospitalized and transportet in a  hurry with ambulance laying on a stretcher in an airliner, because of the immense pain I got.

It was performed ultrasound and CT and it showed that the uterus was normal, but small in size. I got diagnosed with Vaginal agenesis. It was laid up drain so that the uterus could get emptied during each menstruation, but the body rejected it and again I was operated. I was sent home with hormone injections that would postpone menstruation and this worked fine. We were lucky to have a nurse as a neighbor who could put the syringes in me until one day she was away and I had to go down to the doctor’s office to get the syringe, but it was easier said than done. There I met a doctor who refused to inject because there was not written anything in my journal about what was wrong with me.

Because of previous mistakes from my doctors at home they never informed that I had MRKH and therefore the doctor refused to inject me. This led to menstruation starting again and I was again sent to the hospital in a hurry. I can say that the doctor who refused to inject me, quickly lost his position at the doctor’s office ….

I was more at Rikshospitalet than I was at home and I lost a lot of adolescence and the years of primary school and I still live with a bad conscience that neither I nor my dad could attend the graduation of my youngest sister.

When everything finally began to appear bright, I was at the hospital to dilate and for routine control, when I suddenly became ill and got a very high fever. It turned out that I had been infected by E- Coli bacteria  in the sore vagina and my uterus. I was immediately placed in solitary confinement and they drove in with Flagyl antibiotics, but I got worse and worse. My mom and my oldest sister watched over me 24 hours a day and the doctors did not understand why I was worse when I got strong antibiotics and eventually they had to just give up and the message was given that there was no more they could do, it was now up to me to fight. It was just coincidence that they found out that there were antibiotics that was the reason, I could not tolerate it. They started giving me milder Antibiotics and slowly but surely I came back to the real world.

When I was 100% again, I got the message that I had to make a choice. It was life or uterus and of course I chose life, 17 years old and had to take such a big choice, it was not easy … .My mom was almost forcibly sent to the south to get to relaxed a little, my doctor canseled his grouse hunt, so when the message came, I only had dad there with me.

My biggest dream was shattered because of MRKH and I wish so much that it did not exist, but … ..

I was sure I was all alone with this in the big world and it is only by chance that I tumbled over MRKH. When I read about the symptoms and others diagnoses I realized that I was born with MRKH syndrome. It was a relief for mom, after all these years that she had blamed herself for this. She tumbled down the loft stairs when she was pregnant with me and was sure it was the cause even though the professor tried to comfort her that this was not correct.

I got a lot of physical attention, but it was worse with the mental part. I Imagine that my mom had it tough with a 17-year-old daughter who struggled mentally because of MRKH ….

Today I have a good life. I have a great understanding partner, but unfortunately no children, but I have a great hairy daughter with 4 legs. 🙂

It has not been easy to put my story on paper and there was a lot that I did not even remembered, so I had to rip up any wounds both with me and with my mum, but at the same time it has done me good to talk about it …

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