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


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.







Soapy Goodness

I got up extra early this morning, and for those that know me on Facebook, or in person, know that mornings are NOT my thing.  I require a large quantity of coffee in the morning before I’m suitable for public interaction.  Anyway, I got up early this morning so that I could load my craft show trailer before work.  I left more or less on time and drove to work.  When I got to campus, I parked in one of the outlying lots and proceeded to trek across campus to my building.  This evening I’ll trek back to my car and trailer and will head out to set up for my next craft show.

Earlier this week I spent an evening making a fresh batch of Courageous Lotion, and a batch of Orange EO Lotion too.  I probably should have spent an hour or two packing up some more soap too, but I just didn’t get that far.  But I’m prepared, more or less for the show.  Tonight I’ll set up my tables, and get most of the product set up.  While doing that, I’ll make a list of what I need to priority restock in the morning.  I know Courageous soap is on the list, and Honey Almond too.  But I should be able to get everything fairly well set in an hour or so, and then I can head home for the night to do chores, make dinner, pack the soap restock I need, get all the winery stock I need for tomorrow, and hopefully fall into bed before 11.

I’ll be up extra early tomorrow so that I can make it to the show when the doors open at 7.  A bit more set up and then I should be ready to start selling stuff when they open the doors to the public.  This show is a chance for me to represent my own soap business of course, but also to sell wine for the winery my husband and I also own.  Oh…and raise awareness about MRKH too!  Thankfully it’s only a one day show…because I have a feeling I’m going to be REALLY tired by the time I get back home tomorrow night.

I enjoy putting MRKH on display for the public.  The Beautiful You MRKH logo is so stunning, it catches your eye when you see the banners, and people generally are inclined to help support a “cause” especially around the holidays.  I’ll be working hard to raise awareness and empower all women, but especially my fellow MRKH warrior sisters!  If you are local to Moscow, Idaho – stop by and say hi!

Tattoo Stories

I’m no stranger to tattoos.  My sister in law has a zillion of them – well, maybe not a zillion, but she is an impressive walking art canvas.  She is married to my younger brother who also has an expansive collection.  My older brother and his wife both have a couple small tattoos.  I got my first tattoo about 7 years ago, and my second tattoo about 4 years ago, and so it was about time for me to think about another one.  Actually, I’ve been thinking about more all along, but I didn’t want to prematurely upset the beast (aka my loving and mostly tolerant husband), so have been putting it off for a while.

So my first tattoo honors my husband.   We met at a country music bar, on my birthday, and I was pretty well buzzed.  We danced a few dances, flirted a bit, and went our separate ways after a few spins around the dance floor.  Over the course of a few weekends at the same bar, we flirted more and eventually went on a couple of dates.  I had been in and out of a couple dating relationships in the last few months, and let’s just say that I was getting tired of the game.  I was NOT looking for a quick hook up or even a new boyfriend.  I was decidedly NOT LOOKING for love.  But dating him was refreshing, and he was much more down to earth than the rest of the guys I’d been dating before.  I was completely honest with him about MRKH and that I couldn’t have children, and that I was NOT looking for anything permanent.  But he was persistent.  Dinner, movies, dancing, horseback rides, diner lunches, it was a good time – but I was keeping him at arms length.  I was NOT looking to fall in love again.  Apparently at some point I mentioned to him that I was thinking about buying a new belt buckle, so imagine my surprise when one evening as he stopped to pick me up for our regular dinner and trip to the dance hall/bar, he presented me with a lovely new silver belt buckle.  Awwww, how sweet, exactly what I had been wanting.  And then I turned it over.  Darned if this cowboy hadn’t had the dang thing engraved?!?!?!?  Two hearts together forever.  buckle  Admittedly, it was a sweet gesture, but honestly…tattooit scared the beegeezus out of me!  I was NOT ready to fall in love, to BE in love.  And furthermore, I wasn’t WORTHY of love.  He deserved someone who could bear him children and provide him with a legacy.  Not me…I wasn’t the right
one for him.  I gave up fighting it after a while, and eventually later that year when he asked me to marry him, I said yes.

But back to the tattoo story – after we had been married for 14 years, and I wanted a tattoo, I made plans with my sister in law to get my first tattoo. She went with me, and this is what I got.  It’s on my right shoulder blade.


A few years later, and I was itching to get another tattoo.  While I loved the one I had, I couldn’t SEE it everyday.  I still can’t see it unless I look in a mirror.  So I thought about it long and hard.  I thought about what kind of a design I wanted and where.  I wanted something I could see everyday, and something that was again very symbolic about my life.  Ultimately I kept coming back to an idea.  I have known my BFF since what seems like forever, but was actually just middle tattoo-earringsschool, but she’s been a constant in my life, and I in hers.  On one visit “back home” while I was in the military, we got together for a day of shopping, dinner, and drinks.  At one of the antique stores we went through, I saw and pointed out a beautiful pair of earrings.  Swirls of antiqued silver and gleaming moonstones.  matching
They were beautiful.  That night when she dropped me back at my parent’s house, she handed me the pair of earrings.  My heart melted…they were perfect, and such a beautiful gift from a beautiful friend.  I wore them and cherished them for years.  I still wear them frequently, they are dainty and timeless and go with everything.  So I called her and I told her, “Hey, you know that pair of earrings you gave me a million years ago from that antique shop?  Well, I think I want to get a tattoo of them.  I love them so much, and every time I wear them I think of you and our enduring friendship.”   We talked about it, and ultimately that became my next tattoo. She eventually came for a visit and got the matching tattoo…because, yes in fact, we are that connected.


So my first tattoos are both deeply personal and honor important people in my life.  I have several dream tattoos on my “want list”, but I tend to prioritize them and think about where and when to get them.  To be completely honest with you, I hadn’t really thought about doing an MRKH tattoo before finding the online support groups, and specifically the Beautiful You MRKH Foundation.  But the more involved I became, the more I truly recognized how my life had been shaped by my diagnosis, and how it has truly been a journey my whole life.  The more I connected with other women and embraced the sisterhood that is full of MRKH women around the world, the more I wanted raise awareness and empower women with MRKH.  I didn’t just want to get the BYMRKH flower slapped on my body, I wanted there to be more symbolism, and have it be more personal.  I wanted to show the beauty of the flower, but also to embody my own journey.  I had a good idea in my head of what I wanted to incorporate, so I just had to take the plunge and visit with an artist to see what we could come up with, and figure out how much it might cost.  I wanted it bold, but feminine; powerful, but delicate; symbolic, but personal.  After a lovely visit with Cera from Swan Family Ink, I set an appointment, and asked my friend Karen if she would come with me.

On the day of my appointment, after a lovely lunch with Karen, we headed to the tattoo shop to get started.  Cera and I talked some more, I gave her some reference material, and a few minutes later she called me to her station to get started.  She used stencils for the BYMRKH flowers, and for the text portions, got them all applied and then pulled out a bic marker and started drawing directly on my skin all of the scroll work.  We had discussed that it would likely be a multiple sittings type tattoo, with hours of work in it.  After about an hour of Cera drawing on me, we started in on the process of getting the initial line work done.  She began at my wrist, and worked her way up and around my arm methodically.  The first word she completed for me was Faith.  And then 2 flowers, and back around to the front for Strength.  Another series of scroll work and 2 flowers and she had worked her way around to Courage.  And finally she finished with the BYMRKH flower at the top of my arm.  It was 4+ hours of incredible line work.  I was blown away, it was so much more than I had expected, yet entirely perfectly right.  I have 2 more sittings with Cera.  One for more detail and artistic effect in the line work, adding depth and artistry to the scrolls and lettering.  The third and final sitting will be to complete the color.  But for now, I’m focusing on the healing part – keeping it clean and moisturized.  It’s just beginning the tightening and itching phase, but because it’s just line work at this point, it won’t likely peel so dramatically like fish food flakes!  Here are a progression of pictures from design work to what we got finished this first sitting.  Enjoy!

stencils freehand-scrolls more-scrolls final-freehand-work faith strength forearm inner-arm upper-arm