MRKH Type 2

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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Thoughts on Strength

 

Physical strength is the power of physics at work – the ability to exert or resist force.  That one is simple.  You have the strength to life an object, or to hold a door shut while someone pushes from the other side.  It’s arm wrestling at its finest!

Mental strength is a bit hard to quantify, but it is still the ability to exert or resist force isn’t it?  It’s pulling your tired self out of bed in the morning, resisting that strong pull of your pillow and warm blankets.  It’s the ability to keep silent when you REALLY want to comment on the color of that teenager’s hair.    It’s the ability to stand up in front of people and make a presentation.  And it’s also the ability to quietly say…I need help.

Strength is another of those buzzwords in my life, and yes, another of the words I included in my latest tattoo.  I think that I’ve evolved into a strong woman, and that many people see my strength but don’t stop and think about where it comes from.  Physical strength comes from gradually building up muscles to exert and resist force.  Mental strength is the result of that same gradual build up.  You rush past the easy stuff, you work a little harder at some things, and then there are times you have to dig really deep to get through it.  But you do get through it…stronger.  When I talked about Courage last month, I said that “Mental courage is the strength it takes to be brave, the faith it takes to believe, and the willingness to see it through.”  Huh…so mental courage and mental strength are pretty similar…what do you know?  But really, without that inner strength – it’s hard to muster up the courage.

I’ve had lots of experiences that have built up my mental strength characteristics.  MRKH for sure, but before that too.  I was bullied as a kid – probably most of us have been in some form or another.  I was teased for being poor, for puberty acne, for being a farm kid, for my haircut, and for being friends with the less popular kids.  But through the teasing and bullying, I learned compassion and empathy, and I stuck up for others, and sometimes even myself. I had to learn to be strong even when I didn’t feel like it.  When our dog died, and I still had to go to school.  When my grandfather died, and I still had to go to school. When a girl in our school was a victim of a murder, and I came home from school and NO ONE WAS HOME. When my brother got drunk at a rock concert, and he still had to go to school the next day.  When my other brother crashed head first into a mail box post while sledding, ending up in the hospital with a fractured skull, yep, I still had to go to school.   And when I knew I was different, because I never got my period…but waited another 3 years before finding out it was MRKH, and yep – I still went to school the next day!  🙂

I do see myself as a strong woman now, but  in choosing the words for my tattoo, I chose ones that would remind me of my journey and be a continual source of encouragement.  And it’s a vehicle for me to talk about my MRKH journey with others when they see my tattoo.  They can see and understand the words, but they may not recognize the BYMRKH flower logo.  I take any and all opportunities to show off my ink, and of course to talk about MRKH.

Always remember, you have within you the strength, the patience, and the passion to reach for the stars to change the world.  ~ Harriet Tubman

Philippians 4:13  I can do all this through him who gives me strength.

Psalm 118:14  The LORD is my strength and my defense; he has become my salvation.

Thoughts on Courage

Websters says Courage is mental or moral strength to venture, persevere, and withstand danger, fear, or difficulty.

Wikipedia says Courage (also called bravery or valor) is the choice and willingness to confront agony, pain, danger, uncertainty or intimidation. It goes on to say that physical courage is bravery in the face of physical pain, hardship, death or threat of death, while moral courage is the ability to act rightly in the face of popular opposition, shame, scandal, discouragement, or personal loss.

Urban Dictionary says that Courage is the ability to confront pain, fear, humiliation, or anything else a person would naturally stay away from. Can be divided into Mental and Physical courage. Mental Courage encompasses threats, attacks, and discomfort of the mind. Physical Courage is pain, hardship, torture, and death.

So there seem to be 2 categories, right?  Mental and Physical.  Makes sense, I guess.  With both mental and physical courage, it is the ability/choice/willingness to confront something.  Just do it according to Nike.  Get ‘R Done if you ask Larry.  I think it’s pretty clear in my mind about physical courage.  You just take a deep breath and do it – trusting the outcome you are conditioned for.  Rip the band aid off – knowing it will rip the hairs out, but quickly.  Jump in the pool, knowing the water will be cool and refreshing.  Stumble through the dark to flip the light switch.  To me physical courage is bravery, but talking about mental courage – that’s a different animal all together in my mind.  Mental courage is the strength it takes to be brave, the faith it takes to believe, and the willingness to see it through.

Courage is obviously a buzz word in my life.  I have it tattooed on my arm.  I used it in naming my blog.  I use it as a brand for my Courageous project with the Beautiful You MRKH Foundation. It’s a word I easily identify with, and in many ways it’s how I approach my life.  Websters says courage is the mental strength to venture and persevere.  If you had asked me about courage a few years ago, I might not have given it much thought.  I probably wouldn’t have thought that my actions or choices could be viewed as courageous.  I wouldn’t have felt like I could be an inspiration to anyone, or that people would think I was brave and strong.  I was pretty comfortable with myself and my life, but I hadn’t found my niche. I was quietly searching – but for what, I didn’t know.   Always curious (it’s a sign of intelligence they say!), I was wandering around the internet when I found the Beautiful You MRKH pages.  I started reading, and I started making connections, and I was inspired by the bravery and the strength of these women who were publicly talking about MRKH.  The more I read, the more I started to comment – and as I did, I could instantly see the effect of sharing my experiences helped.  I grew more comfortable talking about my own journey, and naturally I began really digging back through my own history.  As I reflected on my own life, and the choices I have made all along – I recognized my own strength, resilience, and the way I faced each challenge was saturated with courage.    The courage to be strong and brave – without knowing the outcome.

I have the courage to talk openly about MRKH and it’s roll in my life.  I will answer any honest question, even the embarrassing ones.  I will use terms that might make you blush, but I do this  knowing that knowledge is power.  I will tell you that I talk so openly in an effort to educate, but more importantly to reduce the shame many women feel when they receive their diagnosis.  I want to empower and celebrate women with MRKH.

MRKH shaped my own life, in many ways I don’t even fully understand all the implications it has, as they seem to change as the years go by.   As a teen, MRKH made me feel like an outsider, a freak.  I never got initiated into the world of periods and staining white pants, needing a pad or a tampon in my purse.  And then there is the whole stretch your vagina in order to be able to have sex…yeah, not one of my friends could have related to that!  That was a quiet and personal shameful journey I had to take completely on my own.  As a young woman, MRKH made me a medical oddity, a freak.  I had to jump through all kinds of hoops just to join the Army – not to mention exploring options for starting a family.  It came to a point where I pretty much just put MRKH on a shelf, and refused to give it any attention at all – because it was just too painful – but putting it on a shelf didn’t solve anything.  In fact, the avoidance tactic just made things worse in the long run.

As I have said many times, when I do take the time to sit back and reflect on my life, I see that I really did have a lot of strength and resilience.  I got through a whole slew of challenges with just blind faith…wait, that’s Courage.

The word courage evokes quite an image for me.  I see strength, honor, dignity.  I see brave men and women fighting in our armed forces.  I see brave men and women fleeing war-torn countries.  I see people taking a stand for what they believe in.  I see proud hard working people achieving their dreams of a better life for themselves and their families.

I will leave you with my all-time favorite courage quote from the incomparable Amelia Earhart:

Courage is the price that life exacts for granting peace.