It’s the holiday season, so I think we can all relate to that stack of dusty boxes in the loft that waits for me every year. Lights, decorations, ornaments, Christmas CDs, the fake tree, and all that entails preparing for the holidays.
This year as I headed up the stairs to the loft, flashlight in hand, I was also looking for another box that had stuff from high school in it. I was actually looking for the old hymnal my grandmother had given me when her church bought a new set. I’m not sure why exactly I was looking for the hymnal, it just seemed like a good idea.
I found the Christmas boxes, and specifically the box with ornaments and CDs in it. I set that one aside, and rummaged through the other boxes to make sure there wasn’t some treasure I needed from them. Nope, I had what I wanted. I started looking around to see if the high school box was near by and readily identifiable. Shifted a few things around and SCORE!!!! There it was.
I cleared out a spot, and popped the top off….anxious to take this little walk down memory lane in search of my hymnal. Sure enough, there were the expected Madonna and Cyndi Lauper albums (yes, vinyl….), Phil Collins of course, Air Supply, Twisted Sister, and some others – I had a wide range in musical tastes. The box of dominos was in there, a few things from the Class of 89 after party that my BFF gave me. Some much loved books – the Little House on the Prairie series, my I, Monty book, the infamous No Flying in the House book from second grade (I “borrowed it” from my teachers library…but in my defense when I got in touch with her about 10 years ago, she said I didn’t have to return it!) , a few paperback romances, JrROTC text books, my child’s bible from Vacation Bible School, but sadly….no hymnal. A little disappointed, I started flipping through some other folders and paperwork that was also in that box from my time in the military. Promotion certificates, award honors, and that sort of thing. And then I found a copy of my medical records from when I was in the Army. I kept a copy of it all since I had so much trouble with my shoulders and needed to have accurate records before the VA took over my file.
I started looking through the medical records, and then thought….hmmm…I wonder if my MRKH stuff is in there too? I know I had to get copies of much of it before I joined…so maybe…. Sure enough, towards the back I did find copies of some things. I kind of took a deep breath, and sat down to read it more carefully. I hadn’t seen this paperwork in 25 years.
Wednesday, Feb 22, 1989
Pelvic Ultrasound: Real time examination of the pelvis demonstrates a pelvic right kidney which is otherwise unremarkable. Left kidney is normally positioned and also unremarkable. I can identify no uterus or ovaries. I do not see a normal-appearing vaginal canal. No fluid or mass is seen in the pelvis. It is possible that very tiny structures are present and are not within the resolution of the sonographic examination. Other means of evaluation should be made. If a cervical os is visible on pelvic examination then hysterosalpingography may be of further use in identifying and delineating the uterus. Clinical correlation recommended.
Conclusion: No uterus or ovaries are identified at sonographic exam. See above comments.
(note: Hysterosalpingography (HSG) is a radiologic procedure to investigate the shape of the uterine cavity and the shape and patency of the fallopian tubes. It entails the injection of a radio-opaque material into the cervical canal and usually fluoroscopy with image intensification. I did NOT have this done.)
March 27, 1989 – Dr. L’s office, OBGYN
18yo F amenorrhea, concerned.
Bloodwork done – seen without chart!
US – Small uterus – ovaries not seen – according to mom
Exam: Breast: Nl development
Abd: Soft no masses
Pelvic: Vulva – virginal Bas – 0
Vagina – short, 1 1/2 cm no cx
cx – not seen ? felt
RV ? uterus & ovaries small if present
Imp: R-K-H Syndrome (Rokitansky – Kuster-Hauser)
Plan: FSH, LH, Prolactin, DHEA, Serum T, Thyroid Panel. Will need diagnostic laparoscopy to confirm.
Operation Report: 5/16/89 Dr. L
Preoperative diagnosis: Mullerian agenesis; primary amenoorrhea
Postoperative diagnosis: Same; the syndrome is called the Mayer – Rokitansky-Hauser syndrome.
Operation: Diagnostic laparoscopy
Surgeon: Dr L.
Description of the Operation: Under general anesthesia the patient was prepped and draped in the usual manner. Examination of the patient’s genitalia showed normal-appearing external genitalia, but indeed the vagina did end in a blind pouch approximately 1cm in length, with no communication that could be seen with any other structures at the end of this pouch. Attention was then turned to the abdomen, where a 1 cm periumbilical skin incision was made. A Verres needle was inserted, and a pneumoperitoneum was created for three liters of carbon dioxide. A secondary puncture was placed in order to place a probe into the abdomen to allow better maneuvering of pelvic organs. It could be immediately seen that there was no normal-appearing uterus. The bladder was seen. There was no evidence of endometriosis or adhesions. Attention was turned to the right side. Along the right sidewall one could see a normal-appearing ovary with some evidence of old corpus luteum, a normal-appearing tube and what was thought to be a very small rudimentary horn of the uterus. This was smaller than the uterus and had no communication with the vagina. Attention was turned to the opposite side, where again along the sidewall was the left ovary, along with a normal-appearing tube and again a very small rudimentary horn of the uterus. These two horns were not connected, nor were they connected to the vagina in any way. This fits the classic syndrome of Rokitansky-Kuster-Hauser syndrome. The remainder of the pelvis and upper abdomen were inspected. The appendix appeared normal. There was bulge where I though very possibly the right pelvic kidney was seen. The liver and gallbladder appeared normal, as did the upper dome of the diaphragm. No other abnormalities were seen, and with this the procedure was terminated. The patient was taken to the Recovery Room in satisfactory condition.
And just like that. I was diagnosed with MRKH. As I’ve posted before, I met with the doctor a week or so later and we discussed my diagnosis and “treatment plan” as it were.
There were a few other pages in my medical records that discussed fertility and that sort of thing, but nothing with much detail. IVF and surrogacy were still so new in the early 90s that it wasn’t really an option we could have considered – especially since I was active duty military, and my marriage kind of blew apart at about that same time. I think the chart note reads, “just exploring options for childbearing and will probably pursue adoption since surrogacy isn’t widely available.” Pretty much sums up my infertility treatment while I was in the Army. It was probably about this same time that I blew out my shoulders, and the next 100+ pages of my medical record details all of that.
It was interesting to me to see these early MRKH records of mine. Morbid curiosity as much as anything, and I was wondering what the date of my surgery was. That was the day that I remember vividly hearing that for sure I did not have a uterus. I don’t think he told me the MRKH syndrome part until my follow up appointment, but I knew the day of my surgery that I would never carry a child. I’m not sure why I feel better knowing what day that happened. I don’t know if it was the relief of the knowledge/confirmation, or the start of the grieving/loss associated with knowing for sure. Either way, I now know that May 16th was the day my life changed forever…at least in that respect.