My daughter was diagnosed in December 2018 aged 17.
Was referred for tests from our GP to see a gynaecologist. Ultrasounds and blood tests and an MRI.
MRKH was diagnosed and we were then referred to Queen Charlottes in London. We got an appointment relatively quickly at QCCH. We saw the specialist gynaecologist, the nurse specialist and my daughter saw the psychologist. They were brilliant and explained everything, drew diagrams to answer our questions, although no treatment was needed my daughter remains on their patient list and we can get a referral from our GP at any time to go back and see them if we have questions in the future or a need for anything . They linked us to support groups and their conference/information days lists and my daughter has attended one so far in person and taken part in one via zoom.
Her diagnosis was hard to hear…I did the classic “was it something I did in my pregnancy that caused this?”..i guess every mum does, but know this is not the case. I researched loads and read everything I could. I started collecting articles and put them in a folder for my daughter…we talked loads, she told her sisters, grandparents, aunts and uncles and her closest friends…we are very open about it, that’s how our family rolls. I personally have a step father, a wonderful man, married to my mother for 40yrs, and my 4th and youngest daughter is not by birth, so we are not fazed by the possibility of surrogacy or adoption or ivf, or any other way she should choose to have a family…I feel this is a big factor in how our family has dealt with this. Our daughter has handled it very well, I am very proud of her. We are aware that she may need more support later down the track, when her friends from babies start having families, but together we will support her any way she needs. We chat about new research and discoveries, if I see a good article I send it to her, sometimes we discuss it sometimes she just reads it.
On a personal level as a mum…I did not have my children to guarantee I have grandchildren, so do not feel any loss in that regard, I have 4 daughters, one older and 2 younger than my daughter with MRKH…and if any of them choose not to have children, or have fertility issues, or choose different ways to be mothers, become step mothers or foster etc…its all fine by me. I will support their choices, see them through difficult decisions and challenges and maybe sadness and despair. Share their journeys and their joys and successes.
Having MRKH is not what defines my daughter. Being a sassy young woman does.
Mum of an MRKHer