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.

 

 

 

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