I would like to say, that there is everything fine with me, and it is even better than never! I have a new boyfriend and he cured all my worries about sexual intercourse things. I am not bleeding anymore, I do not need to wear phantom anymore!(I haven't use it in about 4 months now) And I experienced vaginal orgasm!!! Isn't this just like a miracle? I am so happy!
You and your team did perfect job, helped me a lot and my new partner just finished what you have started to make me feel the perfect woman with no worries and my female confidence is as high as women who did not have that problem. I feel so lucky I found your website, that I chose you, and that I found that man who accept my body and loves it too :)
I do not have much contact with patience with MRKH syndrome, and I am sure they have lots of fears about the life after operation, and I wish to give them the hope and confidence, that they can live a perfectly normal life after, all they need is patience and positive attitude :)
Ms KS, 36 years old, writes:
I would like to take this opportunity of thanking you, Dr Brucker, and your team for the fantastic way you looked after me while I was in your hospital. I also felt very much at ease during the follow-up examinations. Your treatment gave me back my self-confidence and I am now able to believe in myself as a person again. I am eternally grateful to you for this. The only thing I regret is that I waited so long before doing anything about it. But maybe thatís just how it was meant to be
Detailed report by a patient
Question from a patient:
Dear Dr Brucker,
Well. I was operated on in 1988. They used sigmoid tissue in my case. And I was never able to use it. One the one hand, it was very narrow, and it was painful, and on the other, I had a discharge the whole time. The doctors took a biopsy and found that I had a chronic infection. Then I was treated with sol. Vagothyl and douches, but this didnít help, unfortunately. Can a chronic infection like this have any long-term consequences?
Then I had a prolapse. And couldnít even walk around because of the continuous bleeding. Then I was operated on again, but just vaginally, no abdominal incision because of adhesions. How long can you live with adhesions? I know that this is not an easy question, but it would be great if someone could give me an answer. I have never had a satisfactory answer to this question.
I also have problems with my ovaries. Iíve had a cyst twice. Once, it was operated on, but not the second time. I couldnít stand the thought of another operation. The cyst now measures about 22 mm. I have no pain. The doctors did hormone investigations, but didnít say anything about them.
My hormone results are:
What is the menopausal period and osteoporosis like for women with MRKH?
Sorry to ask so many questions, but I has been a long time since I have found anyone I can trust.
I have often been disappointed with doctors.
Thank you very much in advance for your answers.
Response from Dr Sara Brucker
These are exactly the problems that are known when sigmoid tissue is used to create a neovagina: continuous unpleasant smelling secretions, vaginal prolapse, intestinal obstruction or pain in the lower abdomen due to adhesions, and a large scar.
This is why we no longer ever recommend this operation to create a neovagina in women with MRKH syndrome.
Unfortunately, infections are a recurrent problem. In the worst case, constant infection can result in a Ďhole í in the vagina, which joins up with the intestine or bladder (called a fistula). It is also very difficult to treat this type of chronic infection.
And, as I said, prolapse is also a familiar complication. I have recently seen three women with a prolapsed sigmoid vagina who had been operated on several times in different hospitals, sometime via the vagina, sometimes by cutting open the abdomen again. And one of the consequences of this are more and more adhesions.
Basically, you can live with adhesions, but they can lead to intestinal obstructions which means that the abdomen has to be opened up again and again in an emergency and, in the worst case, sometimes a piece of the intestine has to be removed. I expect you probably have a lot of adhesions, and this is why other doctors will not just want to Ď open upí the abdomen again. And the risk of damaging the intestine during a laparoscopy is very high. So you will probably just have to go on living with them.
If the cyst looks harmless at ultrasound examinations and is not growing quickly and is not bothering you, then a cyst of 2Ė3 cm can just be left alone. Sometimes they disappear of their own accord , and it was just a functional cyst (i.e. caused by ovulation).
Iím afraid I canít comment on the hormone levels as I would need the units of measurement. Under normal circumstances in patients with MRKH syndrome, all these levels should be normal. And you ovulate every month (the egg produced just drops into the abdominal space and is reabsorbed there).
This means that osteoporosis is not a problem, since you will be producing oestrogen (hormone) for as long as any other woman, and this protects you from osteoporosis (also milk, calcium and exercise or sport).
When you are older (about 50), the hormones can be determined again to see whether the levels are high enough.
I hope what I had to say has been of some help to you.
Dr Sara Brucker.
I am 27 years old and have known since I was 16 ĺ that I have MRKH. When I found out, my own little perfect world collapsed around me. After 6 years of not having periods and going to gynaecologist after gynaecologist, I went to the specialist I was seeing at that time and we tried a stretching method without surgery. This didnít work properly after a certain point and since I didnít have a great deal of trust in the doctor anyway, I decided to forget the whole thing for a while. My gynaecologist referred me to the Department of Obstetrics and Gynaecology in TŁbingen for a second opinion. I was really pleased with the way the people there dealt with me, and all the mental and physical problems you have when you have this syndrome. I was finally operated on when I was 26. This was 9 months ago and since then I have been completely pleased with the result. I imagined that the time in intensive care would be worse than it was. I was really well prepared by Frau Brucker and thanks to psychotherapeutic support throughout the whole period, I managed everything very well. The few days I spent on the ward and the anxiety I had about going home was much worse Ė everything was so new Ė but my friends and my sister gave me a lot of help. People who know me tell me that I have a lot more self confidence now that Iíve had the operation. I am also not so reserved about men and am therefore much friendlier towards them. Finally, I can just tell everybody reading this and who is suffering from the same condition, and doesnít know what to do, to do one thing: Donít rush anything, and if you think you need time, take time. I think the fact that everything went so well in my case was mainly because it was my very own decision on when and where the operation was performed. And I had the whole team around me who helped me very much to turn this into a positive experience. Thanks very much to everyone. If you would like to get in touch with me and hear more, you can get my E-Mail address from Frau Brucker.
I found out when I was 16 that I had MRKH Syndrome, when I went to the gynaecologist because I hadnít started to have periods. He thought straightaway that I had no vagina and no uterus and referred me for further treatment to the Obstetrics and Gynaecology Department in TŁbingen. I was very shocked of course and was also very anxious because I had no idea what I was going to have to go through. But the doctors at the hospital were very understanding and explained everything to me in great detail. The days in intensive care after the operation were the most difficult. It really was emotionally and physically very stressful, and I did have some pain. But looking back, I can say that Iím very happy with the results and I donít regret having decided to have the operation because it really has been worthwhile. I lost a lot of self confidence when I got the diagnosis. My biggest worry was that I would never be able to have children and that I would never find a partner who accepts it because I didnít have a steady boyfriend at the time. It took quite a few months before I managed to get back to my old-self again with the help of my family and friends and I was very grateful that the doctors at the hospital also gave me a lot of support after the operation. Now I feel like a complete woman again and feel confident approaching men. And at the very latest since I got to know my boyfriend, I know that even if I canít have any children, it is still possible to find a man who loves you as you are. Iím sure Iíll still find it difficult at times to accept that I can have no children because the thought is always there but I know I can look forward to having children in different ways, for example by adopting a child then I will actually have a family. I recommend having the operation to any women affected because afterwards nobody notices that you didnít used to have a vagina. You just feel much better as a complete woman and it gives you much more strength to face everyday life.
I had an operation on my abdomen when I was 15 and the doctors found out that I had no uterus. In the same year, I had already been to my gynaecologist because I hadnít started to have periods and she said that everything was OK with me and that in some women, periods didnít start until later. And then suddenly I had to live with the fact that I had been told that I had no uterus and that my vagina wasnít properly formed. I never went back to this gynaecologist because I had completely lost trust in her. I am lucky to have a very caring family and they looked after me and encouraged me throughout this difficult period. Especially my mother helped me to find out a lot of information about my illness and came with me to all my doctorís appointments. They did lots of investigations and this is necessary because sometimes women with MRKH Syndrome often have changes in their bones or kidneys. I was lucky that this wasnít the case with me. Exactly at that time, I got to know my present boyfriend. Right after I had just found out that I couldnít have sexual intercourse and never have children. Whenever the conversation moved onto this topic, I had no idea what to say and got desperate and invented all sorts of excuses. This is what actually made me have the operation. I wanted to be able to have a partnership with my friend like any other woman. Before the operation in the Department of Obstetrics and Gynaecology in TŁbingen, the doctors informed me very well about what would happen and I knew that quite a few women with the same syndrome had already been operated on there. That made me feel a lot more confident. I told my friend that I was going to have some gynaecological surgery. I had decided to tell him everything after it was all over. I found the time in the hospital very difficult although everything went very well and the doctors and nurses were very pleasant. I had some pain and didnít want anyone to touch the traction device on my stomach. I was very pleased when the traction device was removed and I got out of intensive care. Anyway, I managed to get through everything well and was able to have sex with my friend as early as 5 weeks after the operation and for both of us, it was a wonderful experience. Now I feel much better and have much more self confidence. And my family and my boyfriend have commented on this too.
When I cam back to the Department of Obstetrics and Gynaecology in TŁbingen for a follow-up examination, they gave me an amazing questionnaire to fill out. I read through all the questions and it really took me back. I was immediately reminded of how much support I had from so many people, my parents, friends, the doctors, nurses and other staff at a time when I even doubted myself if I could carry on, and had suicidal thoughts. All these people helped me, consciously or subconsciously. I am very grateful for that. If they hadnít been there for me and hadnít encouraged me so much, I donít know if I would still be here now.
When I think back, Iíd actually like to go around them all and thank them individually. The cleaning staff who ensure that the hospital is kept hygienic, the cooks in the kitchen, who almost always managed to make good meals, the patients I was in hospital with, who encouraged me and sympathised with me all the time, the staff on the intensive care ward and all the other nurses, anaesthetists, doctors, Professor Wallwiener and Dr Brucker, who looked after me during that time so well, etc. etc.
I have nothing but enormous praise for the whole team. They always had time for me and I still find that very important today.
When I got all these thoughts, it occurred to me that we live in an interdependent situation. Everybody needs everybody else and we often forget this. I am also part of this interdependent situation, even if I had first to learn that this is the case, and I am grateful for learning that too.
Once, when I had terrible migraine while I was in hospital, one of the doctors gave me a reflex zone massage on my feet. Thatís something Iíll never forget.
When all is said and done, you are basically hugely responsible for the fact that I have much more self-confidence and show all my talents at work Ė and that I have such a great boyfriend, and that we love each other very much.
Even if it sounds very strange Ė I would do it all again. The amount of information you gave me was fantastic and the whole time I had the feeling of not being alone Ė especially at time when it would be possible to feel completely isolated.
I would like to tell you about how everything went for me, to help you in taking your own decision. I had my first boyfriend at the age of 17 and when we wanted to sleep together after a short time, it didnít work out. This made us both very insecure, and since I hadnít started having periods by then, I decided to go to the gynaecologist. This was very unpleasant for me because I had no idea what to expect. The gynaecologist was very pleasant and examined me very gently. I was devastated when he told me that my vagina and my uterus were not properly formed. But he did say that these days there are lots of different ways of treating this and he recommended that I go to the Department of Obstetrics and Gynaecology in TŁbingen. This is where they diagnosed MRKH Syndrome. I was very pleased that my boyfriend was with me during this time and gave me so much support. He was the one who gave me so much self confidence and courage to face up to the fact that I have this syndrome but am still able to feel like a complete woman. The most difficult thing for me to accept was that I would never be able to have my own children. I am extremely grateful for the excellent care I received in hospital in TŁbingen. I was able to get every question off my chest and they informed me in great detail about all the possible treatments. After a few months, I decided to have the operation to create a new vagina. The operation only took 90 minutes, and after that, with the traction device, I had a new vagina in 4 days. I had a bit of a difficult time during those 4 days and had repeated episodes of pain. But Iím really glad that I had the strength to get through everything and am very happy with the result. My self confidence has improved tremendously and at last I can enjoy a ďnormalĒ relationship with my partner. If you have any questions, you can leave me a message under the name ďAnneĒ in the forum.
I had the operation two years ago in the Department of Obstetrics and Gynaecology in TŁbingen and now I am a very different, much more self-confident person and I enjoy life much more. Iíd like to tell you about my experiences.
I was twenty before I went to my motherís gynaecologist because I hadnít had any periods until then. I didnít want to go at all, but my mother convinced me to go and also came with me. The gynaecologist wasnít able to make a firm diagnosis at that time and she referred me to the Department of Obstetrics and Gynaecology in TŁbingen. They immediately diagnosed MRKH syndrome (they see lots of patients with this syndrome). I had never heard of the syndrome before and looked up everything on the Internet. I found lots of information and I was surprised that so many other women are affected. I read about their experiences and the different types of surgery. But somehow I wasnít able to bring my self to have the operation. I hadnít had a boyfriend by then, and it didnít look as if I would have a partner in the near future.
So at first I just sort of blocked everything out and tried not to think about it. It was like this for a couple of years. During this time I was very unsure about how to deal with men, partly because I didnít feel like a Ďcomplete womaní. I was also lacking in self-confidence and so I started to look at the different treatment options again and went back to the Department of Obstetrics and Gynaecology in TŁbingen. It was mainly thanks to the fantastic advice from Dr Brucker that I was able to being my self to have the surgery this time. She was always there to offer support the whole time, and of course, all the other doctors and nurses were very helpful too. I can only recommend the Department of Obstetrics and Gynaecology in TŁbingen to everybody else.
I have a lot more self-confidence since I had the operation. I have got a better job and I can handle situations with men much better. I still donít have a partner, but now it could happen any time. Since I donít have a partner, I have to wear the dummy most of the time so that my neovagina doesnít shorten. At the beginning it wasnít very pleasant, but now Iím used to it and I can assure you that nobody notices that I am wearing it.
I wish you all the best.