Long-term results after neovagina creation in MRKH syndrome by Vecchietti’s operation.

March 31, 2010 at 10:54 pm (Psychological Research (including research on support, long term effects etc.), Surgery.)

This article focusses on the psychosexual and clinical outcomes of this procedure.

Long term results after neovagina creation in MRKH by Vecchietti’s operation

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Upcoming plans.

March 30, 2010 at 10:33 am (Housekeeping: General blog info)

Just a brief note to all of you who have been following this blog, I know that I have focussed a lot on surrogacy as an option for having children. However, in the future (when school lets up on me a bit), I will continue to do some research on the adoption option and when I do I will make sure it is available to you. I just thought I would make you all aware that my objective here is to present all options and be as open as possible to every different perspective. I love you all for coming and supporting (whether you are a silent supporter or a vocal supporter, regular or not…you are all equally important to me!)! I will continue to keep you posted!

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Experience of IVF surrogacy in Finland.

March 30, 2010 at 10:27 am (Cross Cultural Perspective of MRKH., Fertility/Surrogacy Research)

Five cases of MRKH in this study.

Experience of IVF surrogacy in Finland

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Surrogacy journey!

March 29, 2010 at 9:08 pm (Other MRKH Blogs)

This blog is a success story…

http://andbabymakesfive.wordpress.com/

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Simplifying ovulation induction for surrogacy in women with Mayer- Rokitansky-Kuster-Hauser syndrome

March 29, 2010 at 8:52 pm (Fertility/Surrogacy Research)

FYI: This one is short but very informative for those contemplating this option.

Simplifying ovulation induction for surrogacy in women with MRKH syndrome

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Experimental Uterus Transplantation

March 29, 2010 at 8:47 pm (Uterus Transplantation Research)

Really recent.

Experimental uterus transplantation

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Educating the doctors of tomorrow.

March 28, 2010 at 7:27 pm (Just wondering...)

I recently went for my physical and was given the opportunity to speak to a up-and-coming doctor about my experience with MRKH. My regular doctor (who is wonderful by the way) is very much aware of my aim in creating this blog and my goal to empower MRKH women through education, so she asked me if I was comfortable talking to her intern. It was interesting because I was excited but also a little unsure how to approach the situation. Anyways, after shaking hands with him (yes, him) and formal introductions, I told him the basics which went something like this: “My name is so-and-so and I was diagnosed with MRKH at 15.” Before I assumed that he knew what this all meant, I asked him if he was familiar with the condition. He mumbled “yes” and flipped through my file (avoiding eye contact), clearly uncomfortable with the situation. I found this to be interesting. Was it up to me to put him at ease? Who was the professional here? I asked him if there was anything in particular he wanted to know about MRKH or my experience with it. I followed up with a comment about how difficult it can be for a young girl to realize that she is not like most girls. He nervously nodded, smiled and continued to flip through my file, mumbling something about needing to see more. In other words, he seemed completely uninterested in how you deal psychologically with MRKH. I thought it interesting and decided not to pursue it further. So I waited as he shifted papers and continued to avoid eye contact. I could not help but wonder that if knowing what he did, did he see me as different or abnormal? It is funny how after all this time, this thought continues to pop into my head. After waiting patiently for some curiousity to peak his interest, I was grossly disappointed when he finally came out with: “I see you have had a few UTI’s (urinary tract infections) in the past, have you had any recently?” He continued to ask me questions about my urinary output. I just thought: Typical, it is all about the body. The few routine questions he had to ask he asked and seeming satisfied, he got up (without inviting me to ask questions or say anymore) and said nonchalantly, “Well, thank you for sharing,” as if I was a six year old at show-and-tell. This may seem a little bit harsh* but I had hoped that a future doctor would have some interest in how he/she would go about delivering the diagnosis to new patients or what aspects to address when diagnosing or what is most comforting to someone who has been diagnosed (etc.). No such luck. Perhaps, I should have been more forthcoming in telling my story but I think when you get the feeling someone is just not interested then you tend to back off a bit.

I guess my point in sharing this experience was to say that not only do we, as MRKH women, need to be educated but I also think the physicians of tomorrow (and today for that matter!) need to be educated in how to diagnose congenital anomalies. The experience is uncomfortable as it is, without having someone in the room be unsympathetic. We are people too. Maybe this is something that the medical community should try and keep in mind when dealing with sensitive issues such as this?

*(Please note that I am not trying to attack anyone. I am simply stating an opinion!)

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The MRKH syndrome: an analysis of its morphology and embryology.

March 28, 2010 at 12:52 pm (Medical Research (the heavy stuff))

This article is pretty heavy but it is still interesting.

The MRKH syndrome – an analysis of its morphology and embryology

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Dilation as treatment for vaginal agenesis and hypoplasia: A pilot exploration of benefits and barriers as percieved by patients.

March 28, 2010 at 11:39 am (Dilation therapy.)

I like this article because it ways the costs and benefits to dilation therapy. It also reports the patients feelings, which as you know is my main focus. Also, just a sidenote, not only does this deal with MRKH but it also reports on CAH and other congenital anomalies.

Dilation as treatment for vaginal agenesis and hypoplasia- a pilot exploration of benefits and barriers as percieved by patients

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The Black Hole.

March 27, 2010 at 3:29 pm (My Story.)

I’m going to backtrack a little in my story. Sometimes it can be hard to recall memories that you buried deep, so aspects of my diagnosis that I tried to forget are now what I will reveal to you. The following is the story of how I found out.

I remember being 15, scared and confused. Before being diagnosed with anything, I was sent for an ultrasound to see what was going on down there. I had drank a lot of liquids so the image would be clearer. I was dying to pee but I had to wait. She applied the gel and proceeded to scan me. The monitor was turned away from me. I was scared but curious to see what she saw so I watched her expression change from neutral to confused. I asked her what it was she saw but she did not answer me right away. She could not seem to peel her eyes away from the monitor. I asked her to turn it so I could see too. I was panicking, thinking something really must be wrong. She turned the monitor and a giant black hole stared back at me. It was like it was confirming how I felt. Empty.  I asked her again to tell me what she saw. She told me she could not tell me and that she had to get another opinion. She left me on that table, like some kind of lab rat. Alone, confused and most of all, scared. I continued to stare at the image of a black hole in the monitor, trying to make sense of it. But it just stared right back with a big, fat nothing.

After what seemed like an hour (but what was probably something more like five minutes), she returned with a man in a white coat. She turned the monitor away from me again and they spoke in hushed voices, whispering to each other. One shook their head while the other spoke, both intrigued and confused (it seemed). I continued to try and read their expressions but it was all in vain, they would give nothing away. The man left shortly thereafter and again, I asked her what this all meant. She only replied (coldly) that the results would be sent to my family doctor (who had referred me) and that it was my doctor’s job to tell me what was going on. I was close to tears: Was I going to die? Was I a freak? What the hell was going on and why wouldn’t anyone tell me? It was my body after all!

I later got a response from my doctor who told me I either had parts missing or I had a grossly underdeveloped uterus. I prayed that I was just underdeveloped but you all know how this part of the story ends. My experience in that room was awful. The silence is what killed me. I can remember thinking back, after my diagnosis, how ironic it was that expectant mothers are usually overjoyed to see a new life growing inside them and how I had gone to find out that I myself would never feel that new life inside me.

Fig 1: This image shows the absence of uterus in an MRKH woman (No, this is not me!).

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