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A long journey to MRKH - Val's Story

Let me introduce myself real quick. My name is Val, I was born on the 27th of February, 1997 in Nancy (North-East of France). From the beginning, my birth was precarious: I was born 2 month prior to my due date. The pregnancy was pretty hard on my mother. Three years prior, she lost her first baby because he had no kidneys. My parents feared for my life because it was obvious early on that I had only one kidney.

You might not know, but the kidneys grow approximately at the same time as the genital organs, so the doctors told us right away there was a big chance that my puberty would be problematic.


Now I'm 11 years old and approximately every month, I have a sharp pain in my lower belly, sometimes on the right side, sometimes on the left. It is weird, the pain is horrendous and I’m terrified, but it usually goes away after a few days. The intensity varies a lot: sometimes I’m crying and screaming on the floor for nearly an hour, feeling like someone is burning me with a red-hot iron from the inside, and sometimes it is barely noticeable. After a few instances of this unknown pain, an ultrasound scan is prescribed, but they find nothing weird. It is the first of my medical problems which has no answer, the doctors just brush it off like it’s nothing.



Now almost 16, I’m starting to question why I have not yet had my period. I mean, I have boobs, I have hair, everything seems normal for a girl my age but there’s one thing bugging me: I don’t bleed. I go to see my referring physician and he prescribes a blood test to see my haematologic profiles and a hormone check-up. Once again, everything seems fine. But brace yourself, this is where the story really begins.

My physician also prescribed an ultrasound scan, so I go back to the place I went several years ago. After examining me, he said the sentence which will stick with me for years : “I see nothing”. No reassurance, no diplomacy, nothing. He just stares at me as I am still wiping the gel off of myself, still undressed. The doctor who said several years ago that there was nothing odd with me has the audacity to just say that he sees nothing. I’m frozen on the spot, unable to understand what he means. My mother asks for more details and he finally states that he indeed sees nothing: no vagina, no uterus, no ovaries. Nothing.


One month after this horrific news and still lost, I have an appointment to have an MRI. I’m not scared, I feel safe in hospitals, and I trust the doctors. The verdict after the MRI is quite surprising: no uterus, but I have a vagina and ovaries (or so it seems for now).


My first appointment with a gynaecologist. I’m scared but I want answers. We talk a bit, she seems nice, she also wants to find the answer to my problem. She tries to do a basic vaginal examination but as she does, I suddenly feel a sharp pain as she enters her finger in my vagina. I scream immediately and she stops. She seems concerned, and intrigued. One of her assumptions is that maybe I have vaginismus, so she won’t be able to do an examination herself. She asks to see the MRI, to reread it, and also asks for new hormonal and karyotype checks.

Meanwhile, I’m still in school and I try to solve the mystery on my own. I get on quite well with my natural science teacher so I tell her point blank about what I’m dealing with, and between us, we try to find a hypothesis. One of the most plausible (both from my symptoms and what the gynaecologist has prescribed) seems to be MRKH syndrome. It is a malformation of the female genital organs. It can be different from person to person (no uterus, no vagina, just one of them, a very small one, etc). The allele responsible for this can be found in the karyotype, which is why it seems likely.


A new appointment with my gynaecologist. The MRI has been re-read and it appears that I have neither a uterus nor a vagina (just external vulva) but do have ovaries.

She agrees that it must be a MRKH syndrome and so sends me to see a specialist of this syndrome, Pr. PANIEL, in Créteil (near Paris).


My first consultation with Pr. PANIEL. He’s very nice and caring. He’s been a specialist of MRKH syndrome for many years now and has assisted many patients. He confirms the diagnosis of MRKH and gives a lot of information about it. Between all the information he gives, and all the questions he answers, he finally gives me an answer to the odd pain I have had since I was 11 years old. This “odd pain” is nothing more than my ovule trying to find its path. Since I have no uterus or fallopian tubes, my ovule just wanders around trying to find where to land. Finally an answer to this mystery.

He also gives me all the information about the different options I have if I want to have a “normal” vagina. He insists that I don’t have to do it if I don’t want to, that the choice is mine only. He ends the appointment by saying to me “I gave you all the information I could, now the choice is yours. Take your time, read everything carefully, write to me or call me if you have more questions. If after reading everything you still want me to help you, reach me. And let’s be clear on that: YOU reach me. Not your parents, you. The choice is yours, not theirs. I won’t do anything if it’s them who give me an answer.”

So for several months I just read what he gave me. Once again, I sought help from my natural science teacher and she was pleased to help me understand the medical jargon. In April, I reached out to Pr. PANIEL by mail to say that I’m ready for him to help me.



My second consultation with Pr. PANIEL, we talk a lot, he shows me all the surgical and non-surgical possibilities to give me a vagina and we choose the option that suits me and my body the most. We choose a date and I sign my consent for the procedure.


I’m admitted to hospital on the 23rd. My operation is scheduled for the 24th. It is a “coloplastie sigmoïde” which basically means that they take a small piece of my colon to create a vagina. The operation takes about 5 hours. A couple days later I came back to surgery because of a complication; a little bubble of lymph has formed around where they stitched. It is quite normal but my body reacted how it wanted and created a very large bubble. It is very painful and it takes two days to convince the nurses that I am indeed in great pain and that something isn’t right. After this surgery, my recovery is pretty standard. But it is disturbing to have a sensation that you never had before and to feel an organ that wasn’t there before. I struggle to understand my pain, I’m really scared. And this is when Pr. PANIEL has a brilliant idea: after admitting to me that there are answers he doesn’t have because he has experienced what I am living, he introduces me to Rose, one of his most recent patients, who had the same surgery as me nearly a year ago. She reassures me, that she understands what I’m going through. It is the most relieved I have felt since I had the surgery. After that, I’m calmer. I know my recovery is going to take a lot of time and energy so I have to be patient and learn to listen to my body.

Present Day

Now nearly 25 years old, 8 years after all that, I feel like I’m at peace with it. I’m finally living in my body. Because to be honest, the first few months after mysurgery, I kind of dissociated from my body. My vagina was just something I had to treat to hope that one day it would be normal. My sexual life was weird at the beginning. I had this fear that I had missed opportunities because of this (what a load of crap) so I was eager to have sex, going with people I didn’t really like. I also had my fair share of douchebags who felt compelled to tell me that I was not normal, that it was disgusting, that maybe I wasn’t supposed to be a woman, that they didn’t want to touch me because it was weird. I hated my body for a long time, neglecting it. And finally, I found people who loved me for what I was and it was fabulous.

Nowadays, I practically forget that I had surgery and that my vagina is not “natural”. It has been a long journey to come here today but I’m glad I did it. And I wouldn’t have it any other way.

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