Tag Archives: Surrogacy

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Social Media Woes

The past couple of weeks, months really, social media has been a virtual minefield!  Be it the great political divide, or the latest sports team winning or losing, or the announcement of yet another famous person who has died…it’s all been there on social media – the good, the bad, and certainly the ugly.

I generally try to self-moderate what I post on social media – not something everyone does.  I’m a professional, and 99% of what I post on social media I post publicly.  I use the rule of thumb that if I wouldn’t want my grandmother to know it, I shouldn’t post it.  At some point I know that my employer might “look me up”, and so I don’t gripe about my job or the people I work with.  In that same light, my neighbors and community members might look me up – so I don’t post about the funny or annoying things I see or overhear from my property.  I’m also a business owner – actually 2 businesses – and so my customers might look me up, and so I don’t post anything negative about my “competitors”.  If you follow me on Facebook, then you know that I post and share darn near anything related to coffee, many posts about positive, uplifting, empowering sentiments, cute animals, lovely pictures of things in nature, and sometimes things that are just plain hilarious.  I post pictures of my own animals, my family, and my tattoos.  I post a lot of information about MRKH.  And I post about God and prayer.

Remember, my rule of thumb is “would I want my grandmother to know about it”.  Does she know about my tattoos, MRKH, and my belief in God?  Sure, she does.  Yet, somehow…on social media, those are controversial somehow.  They make some people uncomfortable.

I get how tattoos are not for everyone, and the fact that I have ANY tattoos in the first place surprises some people.  Some might even go so far as to say that I’ve violated some sacred rule by getting a tattoo – your body is a temple and all that.  Don’t get me started about piercings! Both are personal expressions, and choices I’ve deliberately made.  Ok, fine, so you don’t like tattoos or piercings, does that mean that now you don’t like ME?  Apparently, for some, yes.

I totally understand how my talk of MRKH can make people uncomfortable.  After all, I talk about “private parts” in public (gasp!).  I use anatomically correct names like vagina, uterus, ovaries, kidneys in regular conversations.  If people start asking questions I go so far as to talk about vaginal dilation, vaginal depth, and sexual intercourse.  Yep, I talk about all those things in public while I’m talking about MRKH, and it makes people uncomfortable – but I also talk about raising awareness, reducing shame, educating our medical providers, and empowering women.

In the past few months, I’ve also posted more openly about my faith – God, Prayer, Forgiveness, and even posted pictures of my own Baptism.  Apparently this also makes people uncomfortable.

I will not apologize for posting things that might make you feel uncomfortable, although it makes me sad to see that some of the people I enjoy seeing in my news feed have now disappeared through the use of the “unfriend” button.  In fact, I find it rather ironic actually.  I self moderate, and intentionally don’t post things I think are likely to stir up an argument.

I don’t post about politics – it’s a topic I dislike discussing.  I’ll not tell you how I voted, or how I feel about the outcome of the elections.  I’ll not forward on memes making fun of or showing blatant disrespect for any politician.  I probably won’t even like a post…even if I find it hilarious or spot on accurate…if I think it will associate me one way or the other to a side of a debate I don’t want to have.  Don’t get me wrong, I have my opinions – I just don’t use social media as an outlet to debate them.

Here are the things I will tell you, knowing full well you may disagree with me on any of them, and THAT’S OK with me!

  • I am a Christian, and believe that Jesus died for me on that cross, and someday he will come back for me.
  • I believe in equal rights for all humans, genders, races, cultures, religions, and sexual orientations.
  • I believe in marriage and the commitment and fidelity it implies – no matter who you love.
  • I believe in the right to have an abortion if you feel justified.
  • I believe that couples who struggle with any form of infertility should have access to treatments including IVF, Surrogacy, and Transplants when medically necessary – and it shouldn’t cost the proverbial arm and a leg for it!
  • I believe our country needs quality, comprehensive, and accessible healthcare for everyone regardless of income level.
  • I believe our country needs quality, comprehensive, and accessible education for everyone regardless of income level.
  • I believe in responsible gun ownership, and the ability to both protect and provide for yourself and your family.
  • I believe everyone should be conscientious stewards of our planet and our natural resources.
  • I believe everyone is entitled to their opinions, and their right to share them publicly if they choose to do so.

Bottom line, I am a strong and independent woman.  I self identify as a happily married, tattooed and pierced, heterosexual woman, a Christian, a gun owner, an Army veteran, an MRKH warrior, a business owner, a coffee and wine lover, an animal lover, and an advocate for others just like – or very different – from me!

Don’t be afraid to stand up for what you believe in – just do it with dignity, respect, and love.  Wouldn’t our world be a better place if we all did it this way?

 

 

 

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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.