Tag Archives: 1989

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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.

 

 

 

 

 

 

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The year was 1989

There was no internet.

There was no cell phone – just a phone on the wall in the kitchen with a cord to stretch across the room.

If we wanted to see a movie, we saw it in the theater or we rented a VCR and a tape and hooked it up to our 19 inch color TV to watch.

I was a high school senior.

I had some great close friends in my high school Junior ROTC program.

I was participating in our regional Skills Center program, spending half my high school day learning about working in a medical office and meeting lots of other 18 year old girls from other high schools.

I had an fiancé in the Marine Corps.

I had hopes and dreams…plans for the future.   I had a pretty clear sense of who I was and who I wanted to be.  I knew how I was going to do it and what the path looked like that I was going to follow.  I was a planner…and I had it all neatly planned out.

There was just this one niggling detail that was keeping things from falling neatly into place for me – I hadn’t had my period yet.  I was 18 years old and had not started my period.  Something about me was different, but what??? I had all the other signs of puberty – heck I’d been wearing a bra since 4th grade – I had hair in all the usual places and a razor to take care of the hairs I didn’t want in some places – and problematic acne-prone skin.   But no period.  Nothing to tip me over the scale from girl to woman.

And so it all began.  I turned 18, and an appointment was made with the family doctor.  After a brief physical exam with my panties still on, “Well, you seem to have developed normally, let’s try a round of hormones and see if we can jump start things.  Are you sexually active?”  Me – (mortified with my mother in the room) – NO!   “Ok, let’s start the hormones and see what happens. We can make a plan from there.”  Me, silently thankful that no more sex talk was involved, put my clothes back on and we filled the prescription on our way home.

So, a week of hormones and nothing.  Back to the family doctor.  “Still no period?  Hmm, that’s strange.  Ok, let’s do an initial pelvic exam then, shall we?”  “Ok, that wasn’t so bad now, was it?” (am I supposed to answer that? I decide not as I sit back up)  “I think we should refer you to a gynecologist.  I wasn’t able to find your cervix, but you have very little depth at all, which could be just your hymen in tact.  The gynecologist will be able to determine more.  I’m also going to order a pelvic ultrasound for you, you’ll have that done before you meet with the gynecologist.  Any questions?”  Nope, just let me get the heck out of here.

So the day of the ultrasound came.  I drank lots of water as I was instructed to do.  My mom drove me to this appointment as she had the others.  Into the office and slip into the gown as instructed and then the tech came in.  Cold gel on my belly and start looking around.  I’m ticklish and I’ve got to pee…so I’m not having a great time.  The tech let me go relieve myself and then back on the exam table.  She had gone and gotten another tech while I was out of the room.  They are looking, moving the wand, pointing and discussing.  “Well, Heidi, we aren’t quite sure what we are seeing here.  You appear to have an unidentifiable pelvic mass that is obstructing our view of your full reproductive tract.  We will have our radiologist review the images and send them along to your doctor.  You will probably hear from them in a few days.”  I think my mom asked a couple questions, but I was just numb.

An unidentifiable pelvic mass….what did that mean?  Did I have a tumor?  Is that why I didn’t have my period?  Was I going to die?  All these questions floating around in my brain, and no one to talk to about it.  I would have to wait for my next appointment I guess.

This time my appointment was with a gynecologist.  We sat in the office waiting for instructions. The doctor came in and talked about the previous appointments, the family doctor, the hormones, the ultrasound.  I changed into a gown for my second pelvic exam.  It was blessedly quick.  “Our next step is to schedule you for a diagnostic laparoscopy.  This is a simple surgery where we will insert a camera into your abdomen and have a look around.  We’ll identify just what your biology and anatomy is, confirm the nature of the pelvic mass they saw on the ultrasounds and then make a plan from there based on what we find.  Any questions?”  My mom may have asked a couple, I don’t really remember.  I was just numb.

A day and time was scheduled for the surgery.  I had to be at the hospital at 5 in the morning. My mom had a couple hours of farm chores to do every morning and wasn’t a morning person to begin with, so I made arrangements for a friend of mine from the Skills Center to drive me to the hospital.    Janine picked me up and together we made it to the hospital and got me checked in.  Who knows what we talked about while we waited…with teenage girls who knows!  I suspect it was boyfriends/fiancés and wedding plans and upcoming graduations for both of us.  I was taken to the back and Janine waited in the assigned waiting room.

The next thing I remember is waking up groggy in the recovery room.  My mom was there.  I asked her point blank, “What are you doing here?”  “I’m your mother.  I’m here to take you home.”  “Janine is here.  She drove me down here and she was supposed to drive me home.”  “I will take you home.”

How much of this was drug induced grogginess, and how much was just the general state of the relationship between my mom and I?  I don’t honestly know, but I was angry with her, and embarrassed for my friend.

While I was still in the recovery room, the doctor came in to see me.  He said that the mass they had seen on ultrasound was in fact my kidney, and they were unable to locate my uterus.  He would like to see us back in his office in 7 days and they would remove my stitches and talk more to us.  Wait, what?!?!?  I had stitches…but no uterus?  How is that possible???

I asked them to bring Janine back to see me.  They made me get up and go pee first.  Yep, I had stitches – and 2 band aids.  One in my belly button, and one at my bikini line.  Janine was waiting when they brought me back to the bed.  I was totally embarrassed as I explained to her my mom was here and she would be taking me home, but thank you so much for bring me down here.  We left to go home a short time later.

I went back to school the next day – very sore with bruises around my belly button, stitches and band aides that itched.

At the follow up appointment the next week, my mom and I waited for the doctor.  He removed the stitches, said all looked fine and then began his speech to us.

“Your surgery went much as we expected.  You have a rare condition called Mayer Rokitansky Kuster Hauser Syndrome.  You have both ovaries and fallopian tubes, but no uterus, no cervix, and a very shallow vaginal canal.  The mass we saw on the ultrasound, was in fact your right kidney.  You see, when a fetus develops in it’s mother’s womb, the kidneys, bladder and urinary system develops in the pelvic region and as the fetus continues to grow, the kidneys move up and to the rear which then allows more space for the reproductive tract to develop.  Your left kidney moved as expected, but your right kidney stayed in the pelvic region, and your reproductive tract never developed.  Your right kidney is enlarged, but healthy.  The ureters going to the bladder are quite short.  You will never get a period, and you will never be able to carry a child.”

“She can’t get pregnant?”

“No, she will never carry a child. If she chooses to become a parent, she will need to adopt.  Approximately 1 in every 10 couples in the United States struggles with some form of infertility, but your daughter does not have a uterus, she will never get pregnant.”

“So…I don’t have a uterus, I can’t get pregnant. <pause>   Here’s the deal – I’m about to graduate in a few weeks, and I’m moving out, I won’t have medical insurance then.  I’m getting married this fall.  What else do I need to know about this Mayer Roki-whatever you called it?  How rare is it? What do I need to do?  Do I have to take some medication or anything like that?  What does this mean for pretty much the rest of my life?”  – I was very matter of fact.  I had already told my fiancé that the surgery showed I didn’t have a uterus and couldn’t get pregnant.  But I wanted to know what else I needed to know, and how quickly I could be treated and be done with this – considering the insurance thing and all that.

“Well, there are a few things we need to discuss, and it’s good to know what your immediate plans are.  Again, you have Mayer Rokitansky Kuster Hauser Syndrome.  It is quite rare, you are the first case I have ever encountered and had to do some consulting with colleagues to confirm the diagnosis.  There is no cure for it, and there is no required treatment.  You will most likely live your life normally without much interference.  Obviously, because you don’t have a uterus, you will not be able to get pregnant or carry a child.  But you do have the ovaries, and that’s what regulates your hormones and it’s what allowed you to develop breasts and pubic hair.  You likely will cycle every month like a normal woman does, complete with ovulation – but the eggs will just be reabsorbed by your body – having no place to go.  What we do need to talk about is the depth of your vaginal canal. ”

“Ok, what about it? Is something wrong with me?”

“When we did your initial pelvic examination, we noted that your vaginal canal was quite shallow.  This was the first indication that something was amiss.  We also did not see a cervix.  In order for you to have normal sexual intercourse, your vaginal canal will need to be stretched.”

“What???? How??? Why???”

“Yes, you have a very shallow vaginal canal.  In order for you to have a normal sexual relationship with your fiancé, your vagina will need to be stretched out. ”

Oh my….did he just say….with my MOM in the room?!?!?  I was mortified.

“The most common treatment is to use plastic molds of various sizes and insert them into the vaginal opening and leave them in place for a time and gradually work up in sizes until a normal size is achieved.”

I was so embarrassed.  Put things…in there…leave them….stretch out…  Oh…. with my MOM in the room.  We didn’t talk about these kinds of things….not ever….no sex talk.  Too embarrassing.  She didn’t like my boyfriend…she didn’t approve.  Put something in there….  I just …..mom there….uh….no.

“And what other options are there?” I managed to squeak out.

“Well, you do have a bit of depth already, with a slow and gentle partner, you are likely to be able to stretch naturally through sexual intercourse.  But you must be patient and he must be gentle.”

Whew… “Ok, that is what I will try.  I can’t…I won’t….no…I will try that first.”

“I know this must be a lot for you to take in.  Why don’t you and your mother go home now.  If you have more questions or would like to discuss treatment options further, please don’t hesitate to call and make an appointment.”

My mind was reeling on the drive home.  Information overload….and EMBARRASING information.  With my MOTHER in the room….he had said put mold in there…stretch out….sexual intercourse.   I slammed that mental door shut.  I just couldn’t go there.

Numb.

Shattered.

Mortified.