Copyright Sisters For Love MRKH Foundation.
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Dear My Sister,
It has taken me a while to get here, but I am now ready to share with you some of what has been my story. I hope your journey is not too painful, but with my words you may find some comfort that you are not alone. Here goes…….
Not everyone with MRKH is affected in exactly the same way. I am now 46 years old and until June of 2014, I did not know I was 1 in 5000, I thought I was THE only one.
I will start from the beginning. As a child, when I was about seven, I had to have a physical exam. One of the results of the lab work, showed too much protein in my urine, which is a sign of kidney failure. I was admitted into the hospital for further testing. I remember one test, even for a seven year old was very embarrassing, they catheterized me and
filled my bladder with saline solution. The doctor told me to let him know when my bladder felt full, then he told me to hold it as long as I could (I think they must have been getting their equipment ready). Then he said “okay”, and at that point I remember trying to get up to go to the bathroom. Immediately, I heard “NO, we want you to lay there and pee, so we can see what you are kidneys are doing."
I remember peeing everywhere. I could hear it hitting the floor onto a bedpan they had under the table. I also remember getting pee on my night gown and as a consequence, I had to collect urine every year for them to test it. I always did and still do have too much protein in my urine and my keratin clearance is not the best. My nephrologists says I have stage 2/3 kidney disease.That is all they found when I was 7, kidney problems. It was when I was thirteen or fourteen, I started having stomach aches along with a low grade fever. During the school year when I was not feeling well, the nurse would take my temperature, if it was at all above 99 she would call my mom (it was usually higher than 99 but lower than 101). When mom would come pick me up because of my ‘kidney thing’, she would take me to the doctor, who often replied, “I can’t find anything wrong with this child.” I think my mom and dad thought I was trying to get out of something at school, or on the farm. This went on until I was fifteen or so.
I twisted my knee and the doctor thought I had torn the cartilage, so I had outpatient surgery. After the surgery, the anaesthesiologist told my mom to keep an eye on me for the next twenty-four to forty-eight hours. I think it was three or four days later I had one of my stomach aches (by this time, they were getting worse, I would be doubled over in bed for about two days), so my mom wrote it on the calendar and called the doctor the next day.
I am not sure why no one noticed the short time between visits before, but by my next stomach ache; mom looked back at the calendar. My next physical was just a couple of weeks away so mom waited until then to question the doctor. She told him I had not yet started my period, and that she had started around the age thirteen and wondered if that could have anything to do with my stomach aches. The doctor said “well, let’s wait until she is 16 to do a pelvic exam”, (it was only a couple of months or so before my sixteenth birthday). So, next came the pelvic exam by my family doctor. I will never forget that day.
I got undressed and put on the dreaded gown, then doctor and nurse came in, they let my mom stay. The doctor asked the nurse for forceps, and then I remember he asked for the small forceps, and then I heard him say “hell, get me a Q-tip.” Then he jumped up off the stool and left the room, as if his shoes were on fire.
Mom and I looked at each other but, before we could say anything he came back in as quickly as he had left carrying a large medical book. He opened the book and showed my mom something and said it was an imperforate hymen and that it would be a simple 'X marks the spot' but that he wanted to put me in the hospital to do the surgery so he could ‘put me out’, so I would not be so embarrassed.
I remember it was a Saturday in April; I was supposed to be going on a hiking trip with my Girl Scout troop that weekend and was very disappointed that I did not get to go. The surgery was supposed to be a fifteen minute surgery, which turned into two hours. Mom said that no one came out to tell her anything and that she was getting very worried.
From what I understand, after the doctor indicated where “X marks the spot” , there was no opening behind it, therefore, he called a gynaecologist in I heard “off the lake”, his holiday spot. So the GYN came in and between both doctors, decided I had adhesions in my vagina, so they went cutting up through what they thought were the adhesions. I stayed in the hospital for a couple of days and they sent me home with some burn cream they wanted me to put in what they thought was my vagina to keep it from growing back together. They told my mom to take me to a female oncologist about six hours away; he was closest one to where we were and also while I was there, would see my kidney specialist.
We went to Little Rock and met with Dr. Barclay who informed us that he did not think that I had a vagina, and that my uterus was partially formed. Dr Barclay explained that I had been having my periods and the blood which was travelling up my fallopian tubes was now sitting in my stomach cavity until my body could reabsorb it, which explains all those years of agony and stomach pains.
We scheduled surgery for about a month out, because I wanted to go to Girl Scout camp for the summer and I think I remember Dr Barclay saying something about his own vacation.
After camp I had my partially formed uterus taken out. I was still 16 and it was kind of
embarrassing. I remember coming into the Hospital and going to my room, which I shared with an older woman. As I walked in, she asked what was wrong with me; that I looked perfectly healthy. My mom went on to explain to her that I would not be so chipper the next morning as I was having my (partially formed) uterus taken out and why I had been admitted in the first place. I was in the hospital about a week, I think. I also saw Dr. Hughes whilst in Little rock, he was a kidney specialist. I remember he said I had one kidney which was the size of a baby’s kidney and had some scar tissue, but it still functioned, just leaked protein.
When I went back for a check-up about six weeks later, we discussed the operation to have my vagina fixed. I thought I was a freak of nature, that I was the only one in the world that had this condition, and I wanted to "be fixed” as soon as possible.
The doctor explained to my mom he wanted to wait until I was old enough and responsible enough (about 21) because it takes a lot of work and discipline to keep up with the after surgery routine. I went back to school afraid someone might find out that I was different, in my mind ‘a freak’. I felt very alone, and that not even my mom could understand how I felt… I would never have children. I had the vaginal reconstruction surgery when I was about 21.
They took a piece of skin off the back of my right leg, put it around a form, placed it in the opening that was made and sewed everything together, and I mean everything. I had a tube coming out of my skin just above the pelvic bone for my catheter, I am guessing so I would not get urine on the open wounds and cause infection.
After the surgery, the doctor gave me an egg shaped form with a small straw like opening on one end and just a small hole on the other. I was to coat the form with a cream he gave me and push it up into the newly formed vagina and leave it there only taking it out long enough to wash and rinse it then recoat it with the cream, once in the morning and once at night… every day for about 6 months. Then I went back to see the doctor and he gave me a very hard plastic dildo type form that I was to coat with cream push and hold in my vagina for I believe it was 15 minutes every morning and night for another 6 months. The doctor mentioned once that he saw a few girls a year with this ‘defect’.
After surgery, I went on with my life thinking that I was almost the only one that had this problem, there was no one to talk to, and not really a diagnosis. Then June of 2014 I switched doctors again, and this doctor was very different. I had a medical history appointment, all he wanted to do during that first appointment was find out about my medical history… and boy did he ever… he wanted to see me back in 3 months, so when I came back for my next visit he asked if anyone had ever mentioned Mayer-Rokitansky-Küster-Hauser…to which I replied, “Uh, no, why?”. He said, “I believe that is what you have consistent with the female abnormalities that you present with. This is something I briefly studied in medical school. After your first visit, I went and researched it. I believe you have MRKH”.
Why hadn’t anyone ever told me ‘it’ had a name? I asked a few questions after which, he went onto to say there are a number of support groups online and there are other women who have MRKH, that you can chat with… my little pea brain was going 100 miles an hour…. I’m not alone? I am not a freak? Others like me? I am thankful for my new doctor as knowing is half the battle. There was such a weight lifted off my shoulders that I had been carrying alone and now I have others to help me shoulder that weight…. I only wish it hadn’t taken 30 years to find out there were others… I am so glad for the girls/women of today that have these resources to help them cope…if I had known, if there had been support groups or if someone had even suggested to my mom that I might need counselling, I would have probably been more self-confident, I might have not had such a low self esteem…
but none of that matters now, the past cannot be changed.
I don’t want anyone else to go through the same thing I went through. I want all
girls and women that have MRKH to know they are not alone and that there are
many of us and we know what they are going through. If all they need is someone
to talk to that will understand, like really understand.
...... With Love,