Alright, let’s start with a simple review:
MRKH (Mayer Rokitansky Kuster Hauser) Syndrome is a congenital form of infertility where all or part of the reproductive tract does not form correctly. It affects approximately 1 in 4500 women world wide. It isn’t caused by some medication taken during pregnancy. It isn’t caused by a glass of wine, or drinking caffeine during pregnancy. You can’t do anything to cause it, and you can’t completely cure it either. You ARE a woman, and you ARE as normal as the next person. You just develop slightly differently and you have to learn to adapt. You are NOT a freak. You are NOT being punished. You are NOT cursed. You are beautiful. You are loved.
For links to information and support for MRKH, please visit www.beautifulyoumrkh.org They are LIFE CHANGERS.
Now, MRKH has 2 types identified. Type 1 is simply reproductive tract development – missing all or part of uterus, cervix, and vaginal canal. It varies widely from woman to woman how much is affected and in what way. Type 2 includes the reproductive tract development anomalies, but also includes renal, spinal, heart, and ear anomalies – again varying widely from woman to woman.
In 1989, I was diagnosed with MRKH Type 2. I was born without a uterus, cervix, and the upper 2/3rds of my vaginal canal. I also have a pelvic kidney, and a mild curvature in my spine. Over the course of my life I have been treated for a variety of joint issues and injuries, which when combined with my MRKH diagnosis paint a clearer picture of life with MRKH Type 2. I have injured both knees at different times with strains/sprains but none that have required surgery. I have had both of my shoulders reconstructed to correct damage from joint instability and nerve impingement. I have had problems with my feet with joint deterioration which resulted in a fusion in my left foot, and a surgery on my right foot to realign bones and clean up the bone spurs and torn cartilage. I’ve been down the gauntlet of back injuries as well – muscles strained, pulled, and torn. Visits with Chiropractors, Osteopathic Doctors, Physical Therapists, Massage Therapists, etc. to treat any variety of symptoms with my back over the years. I’ve done all kinds of things to keep me more comfortable including spinal injections, acupuncture, supplements, medications, adjustments, massage, nerve stimulators, heating pads, ice packs, exercises, you name it – I’ve probably tried it. All in an effort to not let my life be dictated by pain.
This spring at my annual physical I spoke at length with my doctor about health as a 47 year old woman with MRKH. We talked about menopause, deteriorating eye sight, health and weight in general, my exercise routine of yoga and my exercise bike, and about my aches and pain level. The result of this conversation had me referred all over for a variety of tests some that needed insurance pre-approval. My blood work shows I’m healthy and bodily functions are working as they should. No kidney issues, no liver issues, no heart issues, no thyroid issues, no blood sugar/insulin issues. My mammogram was clear, my bone density is normal, and I have options to consider as my hormones walk me through this next transition in life (hi there night sweats!). My left foot earned me a visit back to the podiatrist who kindly shoved a needle into the joint and injected steroids in there to calm it down and suggested I get some more supportive shoes and insoles to keep my foot more comfortable.
It was the MRI results that led to additional conversations with my doctor and choices to make. I’ve been going to the same doctor for the last 14 years, and this is not the first MRI of my back she has ordered. She spoke candidly with me when she got the results. She could refer me to physical therapy – but I already do yoga regularly and we’ve done the physical therapy routine before for different injuries. She could refer me to the pain clinic for epidural spinal injections – but we’ve done those with minimal improvement before – and frankly, my MRI shows a lot more damage than the last one they did. She thinks it’s time to visit with a spine doctor/Neurosurgeon.
This began another round of insurance pre-approvals. I thankfully have great insurance, but you still are required to get most things out of the “normal everyday visits” pre-approved. It took about 2 weeks to get the approval to make an appointment with the spine doctor, and another 10 days before I could get an appointment. But that did give me time to get a copy of the MRI results and think through questions I might have – and to do some research. I knew what the conservative approach might look like (shots and therapy), and I knew what the surgical approach might be. It all would depend on the interpretation of the MRI by the doctor.
I met with the spine doctor and his team. They gave me a laundry list of diagnosis – Spinal Stenosis (narrowing of the space where the spinal cord and nerves travels protected by the vertebrae), Spondylolisthesis (displacement of the vertebrae), Degenerative Disc Disease, and Scoliosis. When all those things come together is when trouble brews. Each of those things combine to pinch nerves and cause trouble – and pain. Generalized pain in my spine itself, nerve pain across my hips and down my leg into my toes, and muscle spasms to name the most obvious. I’m only as mobile as I am because I refuse to let pain control me everyday. I do yoga because my physical therapist says, “motion is lotion” and “use it or lose it”.
So there is both good news and bad news after my visit to the spine doctor. He referred me back to physical therapy (more to check in with her and satisfy the insurance company, than because he thinks that it will offer me any long term relief). He also put in for a pre-approval for surgery. The bad news is my spine is jacked up – between the disc degeneration and the scoliosis, there is a LOT of arthritis in my vertebrae. The Stenosis is the result of both, as is the Spondylolisthesis. No amount of physical therapy or spinal injections is going to un-pinch the nerves or make my discs spontaneously repair themselves. The good news is that he is confident that with surgery he can decompress the discs, open up the channel for my nerves to run, and stabilize my spine to prevent further damage and reduce my nerve pain. He has an excellent success rate (80%) and high patient and medical peer reviews, and the hospital has very low infection rates and excellent patient care and reviews as well. If I have to have surgery, this seems the best I could hope for going in.
So let’s review: I have MRKH Type 2, I have no uterus or cervix, I have a pelvic kidney, and I have spine issues that are progressively getting worse the older I get. After my MRI, I visited with a spine doctor who is recommending physical therapy and ultimately surgery. I have an appointment for physical therapy next week. And I am waiting to hear if my insurance approves surgery. That’s pretty much all I know today.
As I’m preparing to embark on this next part of my journey, I’m so thankful for the blessing of friends and family near and far who are supporting me with prayers and a listening ear – reminding me to trust God fully, and to know that no matter what comes next, I don’t journey alone.
Joshua 1:9 Be strong and courageous. Do not be afraid; do not be discouraged for the Lord your God is with you wherever you go.
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