Stages

In the MRKH community, we talk a lot about stages.  Not stand up on a stage and perform to an audience type of stages, but stages of acceptance, grief, treatment, development, healing, etc.  We also talk a lot about our journey as it relates to these stages.

From a purely physical perspective, MRKH affects us all a little differently.  It’s a genetics thing, and while Amy could explain all the science behind it, just know that every attribute about us as a human is controlled by our genetic makeup, and when there are little bumps in the road, different things happen.  We didn’t get MRKH because of something our mothers did or consumed, it’s not recognized as a side effect of some medication, and there aren’t any definitive environmental links either; it is simply that at a particular moment in development of the embryo, a specific gene didn’t get the message it was supposed to create a cervix, or uterus, or vaginal canal.  Generally speaking, women diagnosed with MRKH have an incomplete reproductive system – the organs just don’t form correctly or are missing entirely.  Often, there are also related complications with the renal system (kidneys), skeletal/spine issues, and other things.  In my case, I have both ovaries, fallopian tubes, and some uterine tissue – but the news never made it to the correct gene to fuse those tissues together for a functional uterus, create a cervix, and make my vaginal canal of typical length.  Apparently, my kidneys got a corrupted message too – my right one decided to just stay and hang out in my pelvis, since I wasn’t going to get a uterus in there.  I did however get a bit of a head start on the vaginal canal – a whole centimeter of depth!  As it turns out, that was quite handy for me in the “treatment” stage.

Again, because we all have MRKH a little differently, our treatment for the physical anomalies varies as well.  It even varies greatly by country and culture.  I’m in the USA, so I’ll just speak about options here – but if you are in other parts of the world, sometimes you have very different approaches to treatment.  Additionally, because medical biotechnology advances constantly, what treatments are widely used will vary as well from generation to generation.  I was diagnosed at 18 years old, and it was 1989.  It was a time of many advancements in medicine, with procedures changing as technology advanced.  It was also during a time when “test tube babies” and treatments for infertility were getting some news time.  But I was 18 and my primary concern was “how do I stretch out the vagina so I can have a more or less normal sexual relationship?”.  Well, my doctor said that because I already had a start at some vaginal depth, it would be pretty easy to stretch it out.  I could use plastic molds to do this, or I could just attempt sexual intercourse with a gentle and patient partner and stretch naturally.  I had a fiancé, I had a trip planned after I graduated high school, and you know, I was planning to lose my virginity…so…I went with the stretch naturally method.  It was much less embarrassing to me, and as it turned out – worked just fine to get me “custom fit” for my fiancé.  Other women in the USA chose to have a vagina created surgically.  There are several procedures offered to created, and generationally and regionally they vary.  McIndoe, Vechetti, and Davydov seem to be the most popular surgical options.  I really haven’t had or needed any other treatment for MRKH.  I get regular medical care and gynecological exams, and since I still enjoy an active sex life, my vaginal depth has been maintained.  I did go to a fertility clinic at one point to discuss options of IVF and surrogacy, but again, it was in the early 1990s, and not all the states had the same laws about it, and it was not generally covered by insurance, and with the estimation of costs – the option to pursue it was taken off the table pretty quickly.

So those are the physical stages of diagnosis and treatment for me.  I found out I had MRKH, I created a vagina, I couldn’t afford to pursue IVF and surrogacy, so my treatment was basically complete.  Clean and simple, right?

But the emotional side of things has a habit of sneaking in every now and then and shaking things up…again!  So I’m sure you’ve seen the 5 stages on the road to acceptance before:  Denial.  Anger.  Bargaining.  Depression. Acceptance.  Maybe you’ve even been able to apply them to areas in your own life.  But looking through the lens of MRKH and our lifelong journey, it is not just one loss or trauma we are dealing with, but many that are intertwined.  The trauma of diagnosis; the reality of infertility; the shame in being “not normal”; the sheer nature of creating a vagina – through dilation or surgery; the grieving for children you will never have; the effect infertility has on relationships; and I’m sure the list will continue to grow.  Many times I feel like I do the 2 steps forward, and 1 step back thing.  Different things set me off, and different things have bothered me over the years.  I’m well past the denial stage, and most often I sit at the acceptance end of the stages…but then I see a meth head youngster who is pregnant and destroying the child growing inside her – and I get MAD.  Or I see a beautiful and healthy young mother who is pregnant with her 7th beautiful healthy child (yeah…this is a true story), and I get a little depressed – happy for her, but yearning for the ease of pregnancy and wondering if she’s ever had a miscarriage and could maybe understand the struggle of an infertile woman.  I don’t usually linger in these thoughts for long…but they do come up from time to time and catch me off guard.  I try and get firmly back into the acceptance stage – because it’s here where I can be the best me!

When I am in the acceptance stage, I am strong and positive.  I’ve learned from my experiences, and I’ve healed…just a little bit more each time.  I can spend my energy doing what I can to make a difference.  To mentor.  To guide.  I can talk to a young woman considering treatment options, and give her the best advice I have.  I can be happy for the healthy pregnant mom of 7.  I can enjoy the adorable pictures of miracle surrogacy babies.  I can be strong and encouraging for my MRKH sisters around the world.  I can work hard and help to raise awareness and reduce the shame of having been born with MRKH.  I can talk about not having a uterus and having to “make my own” vagina to random strangers.  And I know that I am strong enough to not let MRKH dictate my life, and to get my butt back to acceptance as quickly as possible.   The more actively I work to promote MRKH, the more healing I do not only for myself, but as an example for all my warrior sisters!

Emotional Battles

There are a lot of battles going on in the world today.  Religious battles, political battles, legal battles.  Battles that involve nasty words and media campaigns.  Battles that involve border disputes.  Battles that are violent and bloody with innocent lives lost.  Battles stuck in the court system with no reasonable outcome in site.  But today, I want to talk about emotional battles.

A couple of weeks ago, I wrote a post about Patterns of Behavior.  I talked about some of my struggles, and how I go about getting to the bottom of what is really bothering me.  Last week, I talked about buzz words and how they can spark strong emotions, and strong desires to Pay It Forward and make a difference. In case you can’t really see the obvious here, I’ll just say it simply – I’ve been fighting some emotional battles lately, and trying to figure out just where these feelings are really coming from.  While I didn’t sit down and actually journal it all out, I did spend some time in focused thinking about what exactly was going on.  Pondering, searching for the answer – or at least the identity of what I was feeling.  Usually, once I figure it out, I can find a way to work through it all.  Yesterday it finally became clear….like an obnoxious flashing neon sign… and me saying “why didn’t I see this before?!?!?!”

Guilt.

Ugh…face palm moment – truly.  When I finally figured it out, I texted Chel as I often do…and when she asked “Guilt???” I emailed her a list:

I feel guilty about spending money on a new tattoo
I feel guilty about not spending the money on bills
I feel guilty about not taking any time for ME.
I feel guilty about taking time for me.
I feel guilty about not cleaning the house, doing the laundry.
I feel guilty about not spending time at the winery
I feel guilty about spending too much time at the winery.
I feel guilty about not eating right.
I feel guilty about wasting food when I do rotations and leftovers don’t get eaten
I feel guilty for doing things that make me happy.
I feel guilty about not doing “enough”
I feel guilty for stuffing my face with comfort food.
I feel guilty for being a bad daughter.
Her response…”OMG Its almost like I wrote it….ugh…the question is how to let go of the guilt, especially the contradictory ones?”  And that’s why I love Chel…we totally get each other! So back to the focused thinking I went.  Dissecting why I was feeling guilty, and what I might be able to do about it.  I had a conversation with Google about it too…and learned that often guilt is grounded in feelings of inadequacy and shame.  Yup, yup, and yup.  Long standing issues with me, and ones I have to tackle from time to time.  Also pair it up with acts of selfishness for good measure.  Sheesh…I’m a mess!
Ok…so picking apart my list…the main themes are money, time, and taking care of myself.
Money:  there is never quite enough, but gentle reminders to myself to live within my means, stick to reasonable budgets, and make do with what you have.  Take care of mandatory bills, keep food on the table, and if you want something not normally in the budget – save for it.
Time:  that one is harder, as you can’t make more time exist.  But make lists, prioritize what needs to be done, and sometimes it’s ok to say NO.
Taking care of myself:  the hardest battle of all…but can be manageable if I prioritize and say NO sometimes.    The trick here is to find the balance, and not induce more guilt, inadequacy, or shame.
Apparently, I need to be more assertive.  Make my own needs known if they are valid.  I have to take care of my own well being.
I need to not measure myself against others, and especially I need to not chastise myself for accomplishing less than – or more than whomever it is I’m comparing myself to.
And I need to just let stuff go.  I’m one woman, capable of doing the work of one woman.  I can’t MAKE time, but I can manage and prioritize my time.  I need to not feel guilty when I make a choice to take care of myself.  I need to ensure that I am well and whole and at my best in order to be of service to others.
As I’ve mentioned before, in the past few months I’ve walked a path to more thoroughly explore and engage my faith.  I’ve made a commitment to go back to church and have some wonderful women (and men) in my life and in the congregation that have embraced me with loving open arms.  In this journey I’ve spent quite a bit of time with my nose in my Bible searching for inspiration and contemplating what I find.  I’ve also returned to an active practice of prayer.  Not just asking for guidance in my times of greatest need, but in counting my blessings and praising what is good and right in my world.  God doesn’t just want to hear what I need help with, he wants to celebrate my joys too.  Through this process I am learning that through open dialogue I can embrace a more peace filled life.  While I used to only talk to myself, and ask myself for answers to my questions – now I ask and listen to what God might have to say about things.  Knowing I don’t have to fight this battle alone…well, that leads to a sense of comfort and protection I haven’t felt in a long time.
So, on Friday I’ll be spending some time with one of my dearest friends and doing what at first felt like a very selfish thing and induced some guilt.  I am scheduled to get my next tattoo.  This tattoo will symbolize my MRKH journey and how it’s wrapped itself around my life as a whole – and it will also serve as a reminder of all that I’ve been through and the Courage, Strength, and Faith that I’ve found.  Stay tuned for pictures of course – and probably some whining about pain and itching and lack of quality sleep.  😉