View Full Version : Wondering
I been wondering why no one post in this forum.
I am MRK and went through part of what I needed at 15 years old with the exception of no uterus.
It would be nice to hear from some others who are MRK...
Have a nice day !!
Hello Jolinn,
Good question! I think that there are two reasons: 1) many women with MRK don’t like the word ‘intersex’, so they don’t feel very at home at BLO and 2) there are dedicated MRK groups.
The AIS forum at BLO is also very quiet and I think it is for the same reasons I mentioned above. Here, at BLO, I try to write about the issues AIS women have to deal with. Yet, when I want to talk with others about problems I encounter myself (and I mean typical AIS problems and questions) I prefer to do this in dedicated AIS groups.
I’ve met great, beautiful, nice and understanding people here. But I don’t feel they can fully understand what it means to have AIS.
Groeten, Miriam
Hi Miriam,
Thanks for the reply, I suppose your right as to the lack of postings. I have been on some of the MRK sites, that is how I came to know more about the way I am and the fact that their is many others with the same or similar condition I have found some folks don`t like to express what their conditon really is ( if they even know). Birth defects of ones body or intersex in my opinion is about the same even though I have seen some say that they were not intersex as that is a inbetween state of genders which they were not. Maybe its just a denial on there part. I think of my condition like my Mom said, "your special" accept it as it is. I was born with a shallow vagina no uterus and only one fallopian tube. The vagina was taken care of by the skin graft method.
The only thing that gets to me at times is never being able to have a baby, but then I think about all the others that are not able to for what ever reason. For most part I am a very happy person, life has been good to me (at least so far ).
Have a fine day !!
snoflake241
01-25-05, 11:38 AM
Hi Jolinn,
My name is Samantha and I also have MRKH. I think that Miriam is right. I don't usually post at BLO because I belong to a mail group that is dedicated to MRKH. Actually, I belong to 3 of them, but only one is very active. I would start posting here more often, if there are others here also. If anyone would like the names of different MRKH groups, feel free to email me at snoflake241@<hidden>.
About myself, I am 27 and was diagnosed with MRKH at age 17. It has been very hard for me because I always wanted children. I know that adoption is an option, but right now I don't have the money to consider it. I get depressed about it sometimes, but then I look at my life (I am in college and we are on a very tight budget) and I realize that now is not a good time for a baby. When I do adopt, I will be ready and will be at a place in my life where everything is in order and I think that will make me able to be a better mother. In a way it is a good thing, because I see so many teenagers who get pregnant and give the child away and regret it later, or who raise the baby but always resent that they lost their freedom.
I am also very grateful for all the wonderful women I have found on the mailing lists who are going through the same thing that I am.
Good luck to you Jolinn, and I hope to hear from you again soon!
Hi snowflake,
Thanks for posting, I was starting to feel like the odd person out.
I was on a mail list couple of years ago but it shut down because no one was posting. I am 35 yrs old and very content with myself & accepted things for what they are, as I know nothing else can be done. Yes going to college can make things tight in the budget along with some stress. I remember how it was when I was going to school. Adoption is something that is always open, as for me I don`t even have a steady right now & with my career schedule its not easy to be able to really get the time for much in the way of a relationship with someone. Things do change with time though & perhaps some one special will show up.
Have a fine day with lots of *smiles*
Caitlin
02-24-05, 04:38 PM
I am also another person here with MRKH. I don't post here too often. I tend to stop by and read through on occasion, and I am trying to check the boards more regularly. I am pretty active around intersex issues, mostly doing workshops about my personal experiences and intersex 101 type stuff. I also just joined the board of BLO, which I am pretty excited about.
I have encountered a lot of bigoted responses from various MRKH "support" groups because of my identity as intersex as well as my queer identity. I was actually kicked off of an email list that I joined because of these issues and got some pretty hateful and personally directed emails. There are definitely intersex identified MRKHers out there, but it seems, in my experience, that a lot of folks with MRKH shy from the label. I completely respect everyone's right to self-identify, it just makes me sad that they don't necessarily respect mine.
Anyway, I just wanted to put in my two cents and to let you know I am here too. :)
Caitlin
nimo6211
03-01-05, 02:13 AM
Hi Jollin, Miriam, Snowflake and Caitlin.
Yes, It is rather hard for people to share their conditions because we live in a world from the beginning where "peer pressure" is the norm...being like the Joneses, going with the flow, being with the in-crowd...no one wants to be left out and we all want to be "part of the norm" or at least what society dictates as "the norm".
Anyway, to some extent, I am like that only because I am ashamed that I would be made fun of. I do not like conflicts and like to maintain a low profile not attrating attention to myself...rather going with the flow....more than ever now knowing after reading various websites on "intersex" and finally putting a name to my "freakiness" (that is what I have been calling myself all these years (I am now 42). I think I may have AIS and I have yet to see an endocrinologist and have been making enquiries for specialists who are aware of "intersex" conditions and the least expensive.
Most importantly I really would like to meet and talk with others with my condition and maybe compare notes. So, please feel free to email me ninaamoreno@<hidden> and we could either chat (IM) or send emails back and forth and if anyone is in CA would love to meet with you. In the meantime, I hope we can continue to keep this thread alive and discuss issues openly that affect us and offer each other moral support.
By the way what exactly does MRKH stand for? Thanks again.
snoflake241
03-01-05, 11:00 AM
MRKH stands for Mayer-Rotintansky-Kusher-Hauser Syndrome. It is a condition in which a woman with normal 46XX chromosome is born without a uterus, cervix, and the upper 2/3 of the vagina. They may also have abnormalities (missing, not fully developed, or unusual placement) of the ovaries, fallopian tubes and kidneys. They may or may not have uterine remnants (small underdeveloped uterus also referred to as uterine horns).
For more information, you can visit www.mrkh.org.
nimo6211
03-01-05, 02:32 PM
Wow! I am more confused than ever! Thank you snowflakes. It sounds like me except I think I have XY karyotype and I thought I fit into the category of AIS from the info. I got on the ISNA and AIS (UK) websites. I was born with a shorter than normal vagina, normal looking clitoris with a slightly larger than normal hood (but not gross enough to warrant surgery), underdeveloped ovaries and uterus. Never menstruated and no development of breasts (had breast implants in Australia in 1984). Here is my story if anyone is interested.
Hi:
My name is Nina Moreno. I was born on the 11th of November, 1962 in a little town called Savusavu in the North Island of Vanua Levu, Fiji Islands. I grew up a female. I was born illegitimate and never knew my biological father. When I was 7 years old, my mother married my stepfather and I have three sisters and one brother. Florence is 41, Patricia is 35, Jane is 31, and Michael is 24.
I grew up in a society where sex or anything to do with sex was either taboo or shameful and was a subject never discussed openly. Even relationships with a boy and girl were also shameful.
When I was in high school, I noticed that other girls my age were developing breasts and menstruating, including my sister Florence but I was not. I was skinny and my mother who did not really want to discuss it or explore it further would say that I was a late bloomer and need not worry about it. However, I was ashamed of being different and tried to act as “normal” as possible. My friends did not openly mention it but they were curious. I did not want to appear different and to avoid the embarrassing questions would just bury myself in books and not mix with the other “normal” girls who were “liking boys”, having boyfriends and doing all the “normal” things teenagers do. I was attracted to boys too but because of my “condition” could only like them from a distance but not do anything about it. I did not have many guys who were attracted to me anyway. So, I ended up being used as either the gooseberry or the go-in-between. I became rebellious and because I was not “normal” tried harder than everybody else to fit in.
I remember when I was in year 10 at a home economics class, I asked my teacher if the reason I was not menstruating was because I had this gaping hole in my navel. She said I was talking nonsense and the next thing I knew (I went to a catholic school)….the school started a special segregated “birds and the bees” class.
When I turned 16, I decided to sneak to several gynecologists and tried to read as much as possible to find out how I could “fix my condition”. The doctors were very helpful, did all kinds of blood tests but not very knowledgeable. They all concluded that I was a “late bloomer”. A couple of doctors gave me hormones “the contraceptive pill” to try and get my breasts to grow but the side-effects were so unbearable, I stopped. When I turned 19, a gynecologist decided to do a laparoscopy and diagnosed that I had malformed ovaries and uterus and kindly told me I would not be able to have children or even menstruate and I just had to accept that. However, that was not what I wanted and decided to keep pursuing it. I used to wear bras stuffed with toilet paper and tissue because I wanted to appear normal and because I was ashamed. My mother told me I had to accept it because it was just the way God made me but I did not want to. I was certain that I could be made normal.
In 1984, a gynecologist who got his medical degree from Australia arranged for me to have breast augmentation in Australia which made a whole lot of difference, because then I could pretend to be normal and not have to wear those uncomfortable bras stuffed with tissue. In the meantime, I kept thinking of myself as a freak and would experiment with sex and did not have trouble and even enjoyed it except that I did not naturally lubricate. I wanted to get married and have a family, but nobody proposed. I even had an infatuation with a catholic priest but he was also married….to the church and would not give me the light of day……I had few sex partners, I can even count them……four (including my estranged husband)…….I fell in love with my first sexual encounter, but he was just interested in the sexual act. I then fell in love with a married man (did not find out till 8 months later that he was married), but he did not love me enough to leave his wife, so I dumped him and vowed never to get involved with another married man, then I met another guy who lied to me he was not married but in actual fact was….when I found out, I dumped him too before I got attached. I used to convince myself that because I was a one-man woman, it scared the guys away who just wanted casual sexual encounters and that maybe, my condition somehow did not allow me to become the type of person someone would want to marry. I also believed that because I was not normal I could never be attractive enough to a man that he “would worship the ground I walked on”. I also felt that my smaller phallus and teeny weeny nipples and the fact that I did not lubricate naturally made them think I was a freak and was only good for being used as a sex object. I came to the USA in 2001 and met my husband. We have been separated since 2003.
In the year 2000, a blood test was performed by a gynecologist who was educated in the US and he performed a chromosome test. He told me I was born without the “X” chromosome which determined fertility and tried to reassure me that I was not a “freak” and that my condition was rare but not uncommon and incurable. Unfortunately, I lost that report which I carried around with me in the separation as my husband basically left with everything except the clothes on my back whilst I was at work. I emailed this gynecologist but he never responded.
In 2001, whilst checking out the internet for any information on my condition and if there was any hope of correcting my problem, I found out about Turner’s syndrome and have been thinking since then that was my problem. However, I was 6ft (then) and did not have a webbed neck. In fact I looked like a normal female (thanks to my fake breasts) and, except for my height (6’0”). Last year after a medical check they told me I had shrunk to 5’ 10”. I am not complaining except that I think I have a hump on the back of my used to be otherwise straight long neck.
Last week, I was curious about “homosexuality” because my religion preaches against homosexuality, but I did not feel I was homophobic and really like homosexuals. I somehow believed (because the bible says so) that they were humans too but the only thing wrong about them was their sexual orientation (as it was not the conventional acceptable kind that society seems to have accepted as norm…funny, that coming from a freak like me ) but somehow I wanted to educate myself further on “homosexuality” so that whatever my final conclusion would be, it would be based on an “informed decision”. I did want to explore the “medical anomaly in the genes” theory which was the motivating factor in my searching the internet for anything with regards to this theory. It was in the course of doing such research on the internet that I came across websites on “intersex”. It was as if a tube light that was flickering finally revved up and shone like nobody’s business. At first I was devastated and it caught my breath so that I could actually hear my heavy breathing and felt such tightness in my chest. I could not believe that the personal experiences I read were like a “mirror image” of me. I did however feel a sense of relief that I could actually point a finger at my condition. My case fitted the AIS syndrome. I also came across several websites and am amazed at the wealth of resources available. What helped even more was that it was not as uncommon as my doctors told me and that there were more people like me and kinda gave me hope.
I am still coming to grips with this new revelation and at first could not accept that “it was official, I am a bloody freak”. I believed that I was one of nature’s bad jokes and rather cruel. However, after getting over the wallowing in self-pity and reading more, I realized that there were worst cases than mine and even thankful that I have the use of my limbs, brain etc and that there were many who had more depressing condition than me. So, I decided to explore this further, and maybe even consult an endocrinologist to determine exactly what category I fit in because it would appear that there are several. I hope to also get involved with my local community and maybe assist those who are still hiding in the closet to try to work with the organizations that are trying to remove the stigma of shame that I and the rest of us have had to live with which deprived me totally of a good portion of my experiencing a rich rewarding life. I regret I had not known this sooner and I regret that had I known sooner, my life would not have been so messed up and I could have grown up different….then again who is to know that would have been the case. Thank you for giving me this opportunity to share this and thank you for caring about us minorities and giving us some ways in which we could learn to accept who we are and live a rich and full life (at least what’s left of it).
When I turned 19, a gynecologist decided to do a laparoscopy and diagnosed that I had malformed ovaries and uterus
Helo Nina,
Welcome at BLO!
Many women with AIS were told that they have "malformed ovaries". But with AIS those "ovaries" are testes. BUT... if you really have an uturus you certainly don't have AIS. Also, most women with AIS have an excellent breast development.
Some other conditions (like pure and mixed gonadal dysgenesis, leydig cell hypoplasia, 17BHSD and 5ARD) are quite similar to AIS. For that reason the peer support groups for women with AIS are also open to women with those other conditions. That doesn't mean that all those conditions are the same because only with AIS you are insensitive to androgens. That means that NOT removing the gonads with, lets say, 17BHSD would result in virilization as soon as the body starts to make more androgens in puberty.
In other words: a reliable diagnosis is extremely important.
I really hope that you will find a doctor who can help you to get a correct diagnosis. If you have an uturus you possibly have pure or mixed gonadal dysgenesis, but I'm not a doctor so don't take my word for it.
You can find tons of information about AIS at the AISSG-UK peer support group: http://www.medhelp.org/www/ais/
Have you already contacted the US AIS support group?
Met vriendelijke groeten (that's Dutch..)
Miriam
nimo6211
03-01-05, 04:08 PM
Hi Miriam:
Thanks for the welcome. Yes I have discovered the AIS website. It has some excellent personal stories but not very up to date with recommended clinicians. I tried looking up the clinicians but they were no longer at those addresses.
It hink it is becoming much clearer to me having found the various very similar conditions with various names that I consult an endocrinologist (intersex savvy) to determine exactly what category I fit in. So far I have one from John Hopkins hospital and another from UCSF. I live in CA and UCSF seems a more convenient choice for me. I have however seen so many doctors in the past 30 years who diagnosed all kinds of things that I am going to be choosy this time and find someone that will actually tell me like it is. Thanks again.
Hello Snowflake, Caitlin, Nina,
Welcome to BLO Nina, I`m sure you`ll enjoy it and reap lots of information, there are many folks here with knowledge of different conditions.
I`m a believer in that we are "very special",....
Have a fine day (smile)...
nimo6211
03-01-05, 06:42 PM
Thank you Jolinn. I am just catching up on the postings in this forum. Have a nice day. Nina
Luckyme
04-06-05, 05:11 PM
Hi, I just joined the BLO board and even though I have a different diagnosis, I'm very excited to be here.
I am MRKH also. I am 31 and have known I had mrkh since I was about 15. I have a lot of accompanying health issues that come w/mrkh, but after reading some others' stories, I am not going to complain. I will say that I have been in denial about it. As a teen and young adult, I was very ashamed and lied to friends, even my current husband about why I cannot have children and why I don't have a period. I can't take it anymore. I was (no longer) angry at Mom and God about it. It's not my Mother's fault and it could have been worse on so many different levels. So, I thank Him for that. I am so much more than my "anomalities". At the same time, I am still very self concious about it. The most hurt I have is not being able to have children, but again, there are so many worse things that can happen to me, so I digress.
I am searching for support groups or a message board for MRKHers desperately. I came across this website while searching for support.
Snowflake, I emailed you and hope that you don't mind. I am requesting support. Am in need of it terribly.
It is nice to "meet" you all.
Hello Luckyme & Welcome to the BLO board !
I have mrkh also, but have managed to work past the various issues of dealing with it. I tried several different mrk groups but wasn`t very happy with them as there was always lots of moaning and groaning going on rather than trying to see the positive side of the condition. As for having babies we all go through the feelings of being left out, however their is the adoption route one can always take. I was lucky that my mom told me about the condition when a was about 10 and we started doing what we could to resolve issues surrounding it. plus Mom always told me I was "special", and that noone else could tell anything different about me, which I found to be true. I`m not married so haven`t had to face that but always felt I would just say that due to a female problem it wasn`t possible for me to have a baby, which really isn`t all that usual in this day & age of things.
I hope you find the support/ answers that your looking for....
Jolinn...
prince....ss?
04-06-05, 08:46 PM
I am not MRKH but that is not really important. I just wanted to say hello and welcome. There are a lot of great people here at BLO. Everyone here has some piece of the puzzle that will give you what you need for help and support. All you have to do is ask.
I am also unable to have children. When I was in my early 20’s my sisters offered me their eggs being that I did not have any ovaries. I wonder how far my mother would have let that go before she told me the truth.
I hope you find your answers.
Prince….ss?
snoflake241
04-07-05, 10:48 AM
OF course I don't mind you emailing me! If there is anyone out there who needs to talk about MRKH, whether you are waiting to be approved onto one of the support groups, looking for information, or just want to talk one on one with someone, please email me!! I was in the very same situation only a year ago, and I would be more than happy to talk with anyone who wants to!
My email is snoflake241@<hidden>
Blessing to you all!
Snoflake
snoflake241
04-07-05, 11:24 AM
I also wanted to say that you can im me on yahoo im, my id is snoflake241 also. if you do email or im me, please write that it is mrkh related, so i know it's not spam. :D
filmvixen
06-24-05, 04:51 PM
MRKH stands for Mayer-Rotintansky-Kusher-Hauser Syndrome. It is a condition in which a woman with normal 46XX chromosome is born without a uterus, cervix, and the upper 2/3 of the vagina. They may also have abnormalities (missing, not fully developed, or unusual placement) of the ovaries, fallopian tubes and kidneys. They may or may not have uterine remnants (small underdeveloped uterus also referred to as uterine horns).
For more information, you can visit www.mrkh.org.
Hello Everyone-
I'm new to this group, I found out i had MRKH when i was 15 and was Diagnosed with it at the age of 17. I was told i only have 2/3 of the vagina, one kidney, from what i remember what my doctor told me i dont have a full uterus. That's all the information i know of what i have so far, i haven't seen a doctor about my problem since i was 18. (lack of medical insurance, not able to afford doctors etc) So it's been really stressful a couple of years now. I am now 23 years old and still a full time college student, lol :P So i'm hoping to find a full time job with a good medical packedge so i can get a check up on my MRKH problem.. I find the hardest part is to keep a relationship because most of the guy's i've been with have been to the point of the relationship wanting to be sexualy active and i'm not able to so i have to break up with them. (not telling them about MRKH because i'd be afriad of what the reaction would be) I've been through alot of relationships. good ones and had to break up with the gentleman. It's really hard and it's stressful at times... I just now started to find all these great groups like this one so i'm really greatful to find ohter women in my situation, at least i know i'm not alone in this world with this problem. :) My question is, i'm aware that this MRKH can be corrective and i can have a full vagina so i would be able to have intercourse regularly with my boyfriend(of 1 year and 10 months, been really sweet about the whole thing) How does that work for someone like me who is in a situation that is not able to afford surgery or anything like that? I've been doing alot of research on this and it's hard to find any solutions. Anyways it would be great to talk to everyone you can feel free to IM me on aol at filmvixen. and also email me at filmvixen@<hidden> .. i would love to chat with all of you and maybe we can pass notes and share experiences that we have had with MRKH. Okay well i'm going to browse some more and get more information, i hope to hear from some of you soon. Thank you so much. :)
Love
Mar- :star:
Hello & Welcome Vixen,
In answer to your question, without enough in funds or insurance it creates a big problem, as your aware of everything now days revolves around the mighty dollar. Yes the vagina problem can be fixed through surgery. I had my surgery at the university of Oregon medical school and it was quite a ordeal to go through but I feel was well worth it. I was 15 yrs old at the time and was very scared but knew it had to be done. I have no uterus and only one tube, so babies are out of the question. As for sex, surgery will help make a difference *s* .
I have been on several MRK groups but didn`t find them to be very good with decent information. These days using the internet does help in finding out lots of information.
There are several people on here that are also MRK (besides me)
Here on BLO is a pretty good group of people that are willing to sharing information on various conditions & issues. Get involved some with the group and you`ll learn lots..Feel free to contact me at will...
Hugs....Jolinn
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