Tag Archives: Missing Pieces

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Awkward Conversations

I talk about having MRKH often, and so I’m no stranger to awkward conversations.  I mean seriously, I’m talking about myself…and missing body parts…and vaginas…that’s bound to make nearly anyone cringe a little bit.  Sometimes it even makes me cringe – but I’m determined to reduce the shame, to empower my MRKH sisters, and make it just a teensy bit less awkward if possible.

I’ve been thanked, and I think admired, by people for speaking so openly about MRKH and my experiences.  And you know what…that feels kind of awkward sometimes to me.  I’m not doing this for a form of self promotion.  I’m not doing this in hopes that an article is written about me, or an invitation comes from some talk show host to appear on a TV show to sensationalize MRKH.  I’m doing this for the love of my MRKH family, and to give hope and encouragement to young women who have just been told the name of their condition.  I want to both celebrate and empower us.  To show the beauty in the imperfections.  To encourage them in the face of what feels very much like tragedy.

Sometimes I forget that by quietly speaking out and speaking openly, that I might gather more attention than I was intending.  Allowing my quiet strength and confidence to show might create some intrigue into just who I am.  As you get to know me you notice other things too, that add to the intrigue.  My choice of eye wear – to me it’s functional, but is it also “sexy smart girl” fashion?  My choice to have visible tattoos – to me it’s self expression, remembrances, and healing, but is it also “rebel bad girl” statements?  My choice in business casual and comfortable clothing seems practical to me and fits with my everyday life – but does it lend itself to a “when she’s good she’s good, but when she’s bad she’s better” air of mystique?    I don’t really know the answer to these questions, but it does make me wonder a little bit about how I am perceived, and am I portraying my “true self”.

I love to watch people and their interactions.  While traveling for work the last few weeks I’ve had plenty of time for gawking and watching.  I’ve seen things I just can’t un-see, and I’ve seen things that have moved me to tears (hush, peanut gallery!!!).  I’ve had some interesting conversations, and observed some interesting interactions.  I had that weird moment on the plane that I wrote about, and I’ve had the opportunity to brighten someone’s day.

Indulge me while I tell another story that really raised some questions in my own mind about perceptions and potential misunderstandings, and am I really projecting my authentic self.  I was at a casual social event/mixer that was a blend of co-workers and spouses and friends.  Lots of conversations happening all around the room, talking about work projects, the weather, upcoming summer projects, and all manner of things.  There were adult beverages being consumed, music playing, and just generally a good time was being had.  In situations like this, I’m generally a bit of a wall flower.  I sit back and just watch people interact, engage in light conversations with people I know fairly well, and generally just try to enjoy the event for the politically correct amount of time before suggesting that it might be time to leave.  As I’m sitting there this particular evening, a gentleman who I’ve known for a while comes up along side of me and starts a conversation.  I know him on both a business and a casual friend basis, so conversation is easy and friendly banter.  But I can’t exactly hear everything he’s saying, but I’m nodding politely, smiling and shrugging as seems to fit the blah, blah, blah kind of conversation.  As the conversation continues, I’m catching more and more of the words and starting to catch the drift of what’s actually being said.  And I’m flustered.  Caught of guard.  Shocked even.  And then scrambling to find the correct responses.   You see, what started as friendly banter had turned to flirting, and then to pretty decisive hitting on me.

This certainly was not the first time I have been flirted with or hit on at some kind of event – but it was the first time in a very long time that it has happened when my husband has been in the same room, AND the “flirter” knows us both as a married couple.  It was shocking to me, and awkward, and honestly kind of funny too.  I was wracking my brain to figure out how to respond.  I excused myself and went to the bathroom.  As I locked myself into the stall, and sat down I said a little prayer to God asking for some guidance and strength, to give me the right words to say, to intervene in my brain, to help me get through the  interaction without making it any more awkward than necessary, and to help me to come to terms with the whole thing – sort out my true feelings, and to figure out what to say to my husband – if anything, and to not make this any more of the cluster-muck it was quickly becoming.

As I left the bathroom, I stopped and chatted with a couple different groups before returning to my previous spot where I had left my stuff.  He was still there, and I was determined to be polite but firm in turning down his advances.  He continued in the flirtatious banter, telling me he had been attracted to me for a while.  And while he knew I was married, he didn’t know if we maybe had an open relationship, or if he should be concerned that he was about to get decked for coming on to me.  I laughed awkwardly and told him honestly, look I’m flattered, but it’s not going to happen.

And I was flattered.  I mean really, who doesn’t want to hear that someone finds you attractive and desirable?  It’s the ego-boost that every woman needs from time to time.  But I also felt guilty for being flattered, and I started the non-stop, 10,000 thoughts per day, inner turmoil of what did my reaction to his compliment really mean?  And what if he didn’t take the hint and drop it?  And would I tell my husband of the interaction?  And would it be totally awkward the next time I saw him in public?  And what had I done, or said, or worn that might have given the impression that I would be available or interested in a fling?  Was I sending out mixed signals?  Was I letting my authentic self shine brightly?  Had I brought this on myself?  I was so conflicted…

The flirtations and suggestions continued, and I politely told him again that while I was flattered, it’s just not going to happen.  About that time I gathered my coat and purse and headed for the best defense I could offer – my husband.  We said our good-nights to everyone, the flirt included, and headed out.  I still wasn’t sure if I should tell my husband what had happened, not sure how he would respond to it all.  As we walked to our car I said another silent prayer to God for guidance and clarity about the whole situation.  When we were on the road, he asked me if I had a good time, and a nice visit with…..  I laughed awkwardly and said well, yeah I suppose – but he was totally hitting on me (and I held my breath waiting for his reaction) .  Hubby laughed and we talked it out on the way home.  He was not spitting mad and prepared to defend my honor with testosterone fueled fists, instead he found the whole thing kind of funny, but also a confirmation of some hints/feelings he had about this guy over the last few months.  I told hubby that I was afraid it would be awkward the next time we saw him, but he doesn’t think it will be.  I hope he is right.

In the mean time, I’ve had plenty of time to think through my feelings about the situation.  I’m flattered, and yet I feel guilty for being flattered (insert eye roll here!).  I think that sometimes I do inadvertently send out mixed messages.  I dress somewhat conservatively, am generally quite and reserved, I am intelligent and driven.  I also have tattoos, drink whiskey, and enjoy dancing to live music with my husband.  I know that my quiet strength and confidence, along with the glimpses of my inner rebel, has the potential create intrigue.  But acknowledging that, I did NOTHING to provoke this, it’s all on him.  I like and respect this man as a person, and I’m not really offended by his flirtation and hitting on me – surprised, but not offended. It has made me think about and reaffirm who I believe myself to be, and if I am truly sharing my authentic self with the world.

It’s approaching the time of year when I once again put myself out in the public eye and openly promote and talk about MRKH and my Courageous Project.  I hope that these recent experiences will better prepare me for raising my voice, speaking out, and celebrating and empowering women with MRKH.

 

Perhaps this is the moment for which you have been created – Esther 4:14

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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!

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Dusty Boxes

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

Corpus?

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.