My experience
with MRKH
Submitted Feb 2007
When I was 13 a girl in my class said to me do you want kids? Do you know you can’t have kids without your periods? What if you never get you periods? I just ignored these childish comments and thought that’s not even possible of course I will get periods I thought….little did I know one day it would all come true! I was 14, when my mum started getting worried about me not starting my period and took me to the GP. I was not worried at all after all I had ‘developed’ in all the right places at the average age. My mum started her periods when she was 15, so I thought I was just a late bloomer and would follow in the same footsteps. I got sent for a blood test- but my GP just thought I was a late bloomer too and said not to worry. The blood test did not really show anything was wrong After a few months of waiting, just hoping my periods would come I returned to my GP who again just sent me for a blood test, however this time I was told I have PCOS, so was told all I need to do is lose some weight and my periods would come and that’s the reason I am not getting my periods because I have PCOS.
After a couple of months I went back to my
GP for the third time, I was 14 ½ and time was ticking until my 15th and I still
had not started my periods. This time instead of a blood test
my GP referred me to Queen Charlotte and
At my first appointment my gynaecologist took my history, talked about PCOS since I was told I have it and was examined a bit. My breasts were examined and my gynaecologist pressed under my stomach and asked if it hurts and I was like no. It was so embarrassing but I was quite sure I would get full gynaecological exam however I never did. A psychologist was also present in the room and I was told by my gynaecologist she works with her and I thought to myself why? I got sent for another blood test and got sent to make an appointment for an ultrasound.
For my second appointment I had an ultrasound, I have had many ultrasounds before but this one was the longest one I had ever had. I just wanted it to end so much as having a full bladder and having a scanner pressed over your stomach is really uncomfortable. From the longest ultrasound I have ever had I could sense something was not right, although nothing yet was discussed. Right away after the ultrasound I saw my gynaecologist to discuss the results for the ultrasound I had. I was told I don’t have PCOS and my hormones are fine but they can’t see a womb, she started explaining that this is usually linked with the vagina not being formed properly, she was explaining MRKH but I was not given a name yet and was told to make sure I have to have an MIR scan. Although I was not given proper diagnoses at this stage when I got home I cried so much and could not stop that I developed a headache. I kept praying and hoping everything will just be ok and this would all wash away! I did not want to accept something was wrong. I tried sleeping my upset feeling off but could not get to sleep! My uncle could read my facial expressions like a book and came around that evening and he is like have you been crying? Is everything ok? I replied no I have not been crying and everything fine but he sure could tell something up because he is like are you sure? He always sees me in a really happy and jolly mood but this time I was not, I said I was fine even though I was wrecked from inside.
At my 3rd appointment I just had an MIR scan, since they already started explaining MRKH but I was not yet given a name, while I was having the MIR, I felt like bursting into tears so much, feeling really terrible- but just kept it all inside.
My 4th and final appointment was the longest one, almost 2 hrs long, where my medical sister and mum went along. 6th of January 2004 was the worst day in my life! My gynaecologist like I’m afraid we got some bad news and said I had MRKH. I felt so much like bursting into tears right at moment but pretended I was ok, this may sound dumb but I got a physical pain and felt so numb. Having my own kids was what I had always dreamt of, I could not even have sex without dilation treatment (using dilators to widen the part of vaginal dimple that is already present) or periods. I did not even feel women and felt so incomplete, different and broken into tiny pieces. I next saw the psychologist who first asked me how I was and I just said I am fine even though I was not and felt like bursting into tears so much but held it inside. Next I saw the nurse who explained dilation (treatment to create a vagina) and showed me dilators. I was a shy girl that never talked about these sort of topics with anyone and now I was being made to talk about it. It made me feel so embarrassed; MRKH did not even make me feel like I was a woman anymore. My feeling for needing to cry kept growing and I just wanted to go home. While waiting for the bus home I looked at my mum and sister faces and still remember there expression very vividly- they looked like they were going to cry too. I was holding my tears tightly in, when I stepped home I could not hold it in any longer and cried buckets full, I broke down. I had told two close mates that I had been having appointments so they both rang me to see what I was told. I told one everything was ok and I would tell her what the doctor told me tomorrow, the other one I also told her the same but she like is everything ok and I am like no. She sounded really worried, I told her not to worry and I told her I would tell her the next day.
Next day was a ‘normal’ day at school-everything was just the same but I felt a different person. My mate who I told something was wrong whispered that to my other mate also. I did not want to tell them, the diagnoses devastated me. However they both seemed so concerned so I told them everything. I am glad I never cried and got a nice hug but what hurted me was one of them is like your lucky you don’t get periods! I just felt like saying I am not lucky and don’t mind if I get cramps I just want my periods so bad- to me that was what made me a complete women but without it I felt so ‘incomplete’. I was told the day I was diagnoses to keep a daily diary of emotions and after a week of being diagnosed with MRKH I seem to be dealing ok with it all, it did not really upset me and I just got on with life like ‘normal’, like nothing had changed. On a daily bases after I was diagnosed with MRKH I would do a lot of research about MRKH and went into ‘learning mode’ trying to learn as much as possible about it! I came across MRKH grrls a online yahoo support group, a few months before that I met with some MRKH women at the UK’s national centre for MRKH, support group meetings and it was good to meet people who could relate because before I felt so ‘alone’. I was coping ok with it all or at least that’s what I thought. However a clever teacher that noticed a change, I had changed although I did not realise it. On parents evening my chemistry teacher’s says to my mum I have been acting different, has something happened in the last couple of months? I always use to get A’s and B’s but when I got diagnosed my grades fell dramatically. My mum told her I was born without a womb and not to tell anyone and she like my lips are sealed.
I was in denial for about 1 year or so but then in 2005, near GCSE time my dad was diagnosed with cancer (leukaemia) and MRKH was really upsetting me too, I started cry on a daily bases – more then once a day, I use to lock myself in the toilet and cry because my family thought I was coping fine and I did not want to tell them how upset I was feeling. This really effected me badly and I could not revise properly for any of my GCSE’S- I was too upset, a complete wreck! After my GCSE had finished although I had so much fun everyday I could not stop crying, thinking about it just hurt me so much. I then thought maybe seeing a psychologist would help so made an appointment. I really loved going to see my psychologist because she would make me feel so much better about myself and she gave me ideas to distract myself from thinking about it too much, just after 2 appointments I stopped going because I did not think I needed anymore, the daily crying had stopped completely- infact I stopped crying about it altogether. The impact the 2 appointments with the psychologist made was brilliant and for about 7 months after I felt really brilliant and not sad at all.
Since April 2006 again I been feeling really down again. Just when I thought I was completely fine it all it started to upset me lots again! Each night time I use to think so much and this started to make me worry lots which go me into a state, made me feel so sad and could not sleep until late! I am so glad to have awesome friends support, they are helping me pull through lots but it really was starting to upset me on a daily bases so then I thought it’s time to make more appointments with the psychologist as the two appointments last year really helped me! I ended my appointments with psychologist August 2006- I had 4 on a weekly bases and the reason why I stopped was because I felt I did not need more, I am not even sure it helped this time! Talking about MRKH just made me so sad and each appointment just made me feel like crying but I never did, just held it in me! After the first initial appointment I felt so down, cried and could not concentrate on my work I felt so terrible and felt like doing nothing! However although each appointment made me feel all ‘emotional’ things did improve and I would not end up crying and feeling so terrible after each but I don’t know I don’t think it was going far! However friend’s noticed a mark improvement and said to me I am the best since I known them and that made me happy because sometimes I feel like I am improving and then I get into a really upset state and I think I am not really moving forward with MRKH and I am just going around in circles and that I am back at square one!
I find MRKH made me a more sensitive person! Last year I had a teacher whenever she got happy or sad she would cry and would find that ‘dumb’ now I find I am just the same and get more emotional quickly too! One night recently all my sister said was being pregnant is horrible and oh my god it made me so upset! I could not concentrate and had coursework due in the next day and could not concentrate and do that! Thank god I got a friend who is always online late she was there to cheer me up which helped me get my coursework done- I am so grateful to have mates like her but still that night I could not sleep until past 4 in the morning because I was too upset! Talking to women going through the same thing helps so much and meeting them, I advise you all with MRKH women to go out and meet fellow MRKH buddies if you have not because it helped me a great deal with coping with MRKH!
I still have crappy days and moments and I guess I always will but as long as I got support I know I can get through it. I am determined to not let anything upset me too long.
Having MRKH sometimes use to make me wish I was ‘normal’ but I am coming to realise there are so many variations, we all are different is so many different ways and there is no ‘normal’. I know MRKH will always upset me in different times in my life again but I am determined not to let anything upset me for too long, just as long as I have awesome support I know I can pull through anything. Everything happens for the best and MRKH happened to me for a good reason even if I can’t see it and it seems unfair I know it’s for the best and there is some special reason behind it! I have heard many times but it’s so true MRKH is a very small part of me and does not define me and deep down the same foundations of me that have always been there are there only just got crumbled with my diagnoses ‘you can be changed by what happens to you but I refuse to be reduced by it’! I certainly will not let MRKH reduce me!