Rokitansky syndrome - Alexandra's story

Alexandra's story begins even before her birth.

In the seventh month of her fetal development, doctors discovered abnormalities incompatible with life and told her parents that she would not be born alive. But she shows everyone they were wrong and is born. After her birth, she was transported to a multidisciplinary hospital where the first surgeries were performed. The next 7 months she spent in hospitals, surgery after surgery, before going home to her family.

At the beginning of May 2023 when Alex is 13 years old, it is found by MRI that she has two uteruses and functioning ovaries, but no vagina. Because of the functioning ovaries, she has a cycle, but menstrual blood cannot leave her body due to the lack of a vagina. A balloon full of menstrual blood has formed in her body and needs to be surgically removed urgently.

In Bulgaria, doctors refer the family for treatment abroad. They contacted ZIC Medical Karadži for help and we referred them to one of the best specialists in this field in Turkey - Dr. Shakir Volkan Erdogan - a specialist in obstetrics and gynecology. After a detailed examination, tests and discussion by a committee specially convened to make the best decision for the patient, the team of doctors proceeded with the planned complex surgery. All details were discussed with the family and approved by them.

Read the short interview of our manager Ms. Zvezdelina Lutfi, who coordinated Alex's case with Dr. Volkan Erdogan about his expectations and the further development of her condition.

синдром на Рокитански

Stars:

Dr. Volkan tell us a little more about Alexandra's case?

Dr. Volkan Erdogan:

On the outside of Alexandra's body was a closed vagina. We made a new vagina to allow blood flow from the uterus to the outside of the body. We did this with part of the ileum (small intestine). The advantage of the small intestine is that its cells can be transformed into vaginal cells, so in 1 to 3 years when we do an examination of the inner wall of the vagina we will see a normal female vagina, not the cells of the intestine. There is no cervix in Alexandra. We have tried to make a new cervix with a few stitches to the uterus to make it firmer, but we cannot know if we have been successful or not. When she grows up and starts to have a sex life we will know if a cervix has formed.

Stars:

And what about the two uteruses? One of them was removed, right?

Dr. Volkan Erdogan:

Yes, she had two uteruses. One was rudimentary- just a fetus and we removed it. She has two functioning ovaries, one uterus, but a small one that doesn't have a cervix yet and already has a vagina.

Stars:

So we expect to see an absolutely normal vagina in her in the next 1-2-3 years?

Dr. Volkan Erdogan:

Yes, exactly! At her next check-up visit I will perform a special diagnostic test- vaginoscopy. I will use a camera to view the inside of her vagina to see if the transformation has started or not. I will then be able to say, yes, her cells have started to transform into normal vaginal cells.

ZIC Medical Karaj continues to coordinate Alexandra's case and to assist her and her family in the process of her full recovery.

The diagnosis of Mayer-Rokitansky-Kuster-Hauser syndrome sounds scary to any young woman faced with it. At ZIC Medical Carragee, we can help improve lives with Rokitansky syndrome. Contact us for more information on 0895 770 869 and 0879 977 402.

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