After more than 2 miserable years of infertility in spite of good sperm, normal hormone levels, and good timing I was, at my request and my reproductive endocrinologist’s agreement, booked to have an investigative laparoscopy, dye studies and hysteroscopy. With this being my first real surgery and having a fear of needles I was terrified. I also feared the worst – that my doctor would open me up to find horrible deformities. One never actually expects these “irrational” fears to actually happen.
When I woke in recovery my reproductive endocrinologist’s assistant broke the news to me as gently as she could – I had severe endometriosis and only half of my reproductive organs. I especially remember the reference to my half-uterus. I sobbed, absolutely sobbed, and the doctor told me that she was sorry. Then my reproductive endocrinologist came to see me, something he doesn’t usually do, so I knew I was special. He repeated the news, and I cried again. He told me the nurses would arrange for an MRI to be done to try to get a better idea of what was going on in there. I was devastated, absolutely devastated, and asked him about my chances for pregnancy. He was confident that I could get there with IVF.
I had the nurses call my friend who lived nearby. She had told me she’d be available for me should I need anything, and I was grateful for that. She arrived after I had been moved to the recovery lounge, and sat with me for several hours while I waited for the MRI appointment.
Knowing how afraid and upset I was, the staff left my drip in so that I could be sedated for the MRI if needed. However, by the time of my appointment it was too late for a doctor to come down to do that, so I was left to attempt to allow an MRI to be done on my extremely claustrophobic self. I tried to relax as I lay on the MRI table and was strapped in, with a heavy plate across my recently-operated-upon abdomen. As soon as they put me into the machine I panicked and had to be let out. They tried again, and I barely got my head in before panicking. It was decided that I would get a Valium prescription from my GP and come back the following week.
I did this, and after taking the maximum 4 tablets the pharmacist would allow, I made it through the MRI, and a few days later had my follow up appointment with my reproductive endocrinologist.
He made me look at photos from the surgery, in spite of my squeamishness. I have a Mullerian Anomaly – a random birth defect occurring when the Mullerian Ducts (which become the female reproductive system) are forming at around 6 weeks gestation. I have a right unicornuate uterus, a right ovary, a patent right tube, and a very crooked cervix that made the hysteroscopy impossible. The endometriosis was probably caused by retrograde menstruation due to my crooked cervix.
I was sent for a renal ultrasound as kidney anomalies are often seen with Mullerian Anomalies, due to them forming at the same time. I was not the least bit surprised to learn that my left kidney, ureter and adrenal gland were completely absent.
My reproductive endocrinologist was confident that I could fall pregnant via IVF and carry almost to term. The biggest challenge would be to try to straighten up my cervix enough for a normal embryo transfer. This was successfully attempted, along with resection of the endometriosis, in August 2006.
I have been fortunate in finding a wonderful internet support group for women with Mullerian Anomalies. I have received and continue to receive such wonderful support and information there. I have even become friends with a woman with uterus didelphys (double uterus) who lives nearby.
The group has been most helpful in learning about my condition, as there is so little good information available. I certainly didn’t receive a Mullerian Anomalies handout at the hospital.
Receiving my unicornuate uterus diagnosis has been a crushing blow, and very difficult emotionally. It is an unusual condition, so I feel like something of a freak. I feel defective, deformed, as though I am half a woman, and the infertility side of things certainly doesn’t help alleviate these feelings. The impact on my self esteem and body image has also been awful, I feel so ashamed to have this imperfect “half-woman” body. I am so lucky to have the girls in the internet support group to rely upon, as they really understand.
I am shocked that it has taken 29 years to receive this diagnosis. I have ultrasound pictures from over a decade ago that show a “left renal area” and “right kidney” but make no mention of the absent left kidney. I also have many pelvic ultrasounds that proclaim my uterus to be “of normal volume and contour”, which, of course, simply is not true. I even have an ultrasound report counting the follicles on my left ovary – the one that does not exist!
If I am lucky enough to get pregnant in the future, I know that I will face risks due to my unicornuate uterus such as increased risks of premature labour, incompetent cervix, breech presentation, caesarean section, intra-uterine growth retardation, and late trimester loss. While I’m not glad to have these risks, I am very glad to know about them so that I can insist on being monitored closely.
I encourage anyone with a Mullerian Anomaly to educate themselves and seek support from other women with similar conditions.