Testimonies

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"Hello, Roki Friends. I like the term "friends" because even though we don't know each other, we are connected by similar experiences and feelings generated by the existence of Rokitansky Syndrome. For this reason, I would like to share a little bit of my story with you... Like most women, I learned about the syndrome during adolescence due to the absence of menstruation. I went to the gynecologist when I was 14, but I spent almost two years taking hormone medications, undergoing exams and consultations with various specialists, since my first ultrasound showed a childlike uterus. Only when I changed doctors, Dr. J.M. was able to identify and diagnose the syndrome, and consequently the absence of the uterus. This was very shocking news for my parents, especially for my mother, who anticipated all the possible suffering that I could have and felt it for me in advance. Both my parents and Dr. J.M. were very caring when discussing the diagnosis, which made a big difference in how I processed the news. In fact, I didn't feel a very big impact; with my faith, I had the certainty that something was reserved for me, either adoption, a happy life without a child, or something special. It would be a lie to say that I didn't feel or cry over the years that followed, because occasionally feelings of inadequacy and inferiority would visit me at night. But I decided to face these feelings alone with the thought that the inability to conceive was a condition that was part of me and that would not change. Either I looked at the possibilities and realized myself with what was possible, or I would feel inadequate and unhappy for something that was out of my control. I understood that I was the only one who could change the way I faced the situation and that no one else needed to suffer for it. For many years I avoided talking about the subject, thinking that I could prevent more suffering on the part of my parents, and I pretended to be strong, even when I wasn't, so as not to bring up the "elephant in the room." Whenever the subject came up, I would dodge it by saying that God knows what he's doing and that I wouldn't suffer in advance for something that wasn't yet surfacing in me, which was the desire to be a mother. After the diagnosis, I ended a relationship and unconsciously closed myself off to relationships because I didn't know the size of my canal, if I could have a normal sexual relationship, and I couldn't imagine when would be the right time to tell someone who was with me; we would have to give up the dream of having a biological child. At 19, I started psychotherapy, which helped me a lot in my self-awareness and maturation, changing the way I related to myself and the people around me. It allowed me to understand that if I accepted myself and was well with myself, I could serve as a role model for others.
At 21, I met someone, who was supposed to be just for a few meetings, but it turned into something real, during which I discovered the absence of the vaginal canal and decided to tell the truth. This person's response to the news of the syndrome was one of the most special and remarkable moments of my life, the certainty of the doubt that had been haunting me for so long: is there really something special waiting for me?
At that moment, I knew that even if that relationship didn't work out, I was enough and complete, and that other people could see that too. This made me lose my fear of talking about the subject, allowing me to embrace who I am and openly discuss Rokitansky Syndrome and the impossibility of carrying a child.
My boyfriend and I worked through the possibilities, in case we ever got married and wanted a child. This way, both of us felt comfortable expressing our dreams and desires without embarrassment, restrictions, shame or judgment.
At 23, I decided to undergo the surgery for the construction of a canal, not for my boyfriend, but for my well-being. Everything went according to plan, and the result was a perfectly functional canal.
At 24, I married the same man who understood me and helped me understand that I am a woman like any other, but also special in his eyes.
I went through physical pain, embarrassment with doctors and exams, uncomfortable and sad feelings, moments of doubt, and many other things. But in the face of all of them, I chose to believe that I was much more than Rokitansky Syndrome, and that it influenced my emotional and professional growth, making me who I am today.
Who doesn't go through difficult times? Who doesn't have their limitations? Who is perfect?
I can say that I am none of these, but that I am unique. I am happy to have people who love me and even more so, to have realized early on, that my faith and self-love are the most important things I can have. I am not fulfilled DESPITE the Syndrome, I am fulfilled BECAUSE I am Rokitansky! "

" Hello ladies! I want to share a part of my story with you. Since childhood and early adolescence, I never dreamed of marriage or motherhood. My only life goal was to study and conquer the world through education! But like most girls, when I turned 14, my mother took me to the doctor to investigate the absence of menstruation. During a second consultation, I received the diagnosis of Rokitansky Syndrome in the worst possible way. While I was in the bathroom, the doctor spoke with my mother, and I found out about the absence of my uterus and the reduction of my vaginal canal behind the door! At that moment, I had the worst feelings anyone could imagine, and I wished I could stay in that bathroom forever. I was advised to have surgery to reconstruct my vaginal canal, but I chose to have it after finishing high school in 2009, so it wouldn't affect my last year in school. I believe that the lack of information about my condition weighed heavily on my process, which consequently had a major impact on my perception of myself and my acceptance as a woman. After all, culture teaches us that a woman "needs" to have a husband and be a mother! And then came the questions... Why did this happen to me? Whose fault is it that I'm going through all of this? Will any man ever like me this way? among other self-judgments that were very cruel to me. For a long time, I found it very difficult to talk about it, even with people I trusted, for fear of the judgments and prejudices I might face. Over time, I learned to manage my condition, but most importantly, my emotions, and that was crucial! My degree in psychology and the real relationships I built during my five years of study contributed a lot to this process. And from my own experience, I can tell you that when our internal relationship is good, it reverberates in everything and consequently affects the people around us. I started to relate better to myself during this period, I began to relate to other people better, I met someone very special, and he has been a great partner in my life. It all started with my own acceptance, and from the moment I delved into my self-discovery process, I was able to take ownership of myself. And after 12 years of discovering the syndrome, if you ask me how I deal with it daily, I answer: First, I don't need a man or a child to recognize myself as a woman. Second, I deal with myself every day, meeting my needs, focusing my energy on what is possible for me at the moment, and recognizing that my story is unique and that I am the great love of my life! I would like to make it clear that this is my story with the syndrome, and that it serves as inspiration, but never as a way to compare or diminish your own story, okay? I hope my story can touch you in some way and encourage you to see yourself as a woman full of potential. Big kiss! " "

" I am a teenager with Rokitansky Syndrome and one of the creators of the Roki Institute. When I received my diagnosis at the age of 13, I felt a pain like I had never felt before, as if that news had ripped a part of me away. My unconscious mind believed that my life path was going to be like the norm: lose my virginity, meet someone special, get married and have children. After all, that's what's expected of us nowadays. The strangest thing was discovering something so big about myself that had always been there, and I just didn't know it, as if I had lived my whole life with a lie about who I believed I was. I went through a period of anger right after my diagnosis. Why me? What did I do to deserve this? What will people think of me if they find out? No one knew how to deal with it, and even worse, no one knew what it was. For a long time, I felt completely lost, didn't know who to turn to, and didn't know who I could trust to tell this newfound discovery. As the years went by and I matured, I began to accept myself little by little. One thing that went through my mind was, will anyone ever be able to love me because of this? Five years have passed since my diagnosis, and nowadays, I can finally answer that question. The first person who has to love me is myself, and in this way, I will be able to be loved. For a long time, all I wanted was not to have been born this way, but nowadays, I can say with conviction that this is a part of me, a part of my story, a part of who I am, and most importantly, it has given me the opportunity to help you who are as lost and broken as I was. You are not alone, we are a very large group of warriors and we will get through all of this together! "

" Hello! My name is Camila, I'm 23 years old and I'm going to tell you a little bit of my story regarding the syndrome! So... everything happened when I was 15 years old. Due to the absence of my period, my mother took me to the doctor. I had an ultrasound and during the exam, the doctor couldn't see my uterus, but he could see my ovaries, so he ordered an MRI. Through the MRI, the real reason for that would be clearer. When I went to do the MRI, the nurse inserted the probe to put the some gel inside (gel through the vagina canal is necessary to facilitate the exam visualization), and I felt a lot of pain. She found it strange and called another girl, I think it was a doctor. She also tried to insert it and I kept feeling pain until she gave up and I went for the exam.
A few days later, I went with my mother to get the exam results. When we arrived, the gynecologist said that besides the absence of the uterus, I also didn't have a vaginal canal. That is, I could not get pregnant. And for the canal, surgery would be required. At that moment, my world fell apart. Many negative feelings started to emerge inside of me. My mother started going to various hospitals in Rio de Janeiro. Some had never heard of this problem, let alone having a specialist who could perform the surgery. We spent years searching, and the search was very frustrating when we arrived at a hospital and simply couldn't find what we were looking for. Not until 2016, when we found a specialist at the Federal Hospital of State Servants.
As we took so long to find the specialist, I had to redo all the exams. I had some consultations, got to know more about the syndrome through the doctor, and on April 11, 2018, the hospital called me to be hospitalized the next day and undergo surgery. The surgery was a success. I was very well treated at the hospital and was discharged on April 24th. Although at first, I was very scared, which is normal, my recovery was very smooth, and in 2 months everything was okay. When we're going to have surgery, we get scared, that's normal! Before the surgery and everything else, I had some bad moments of depression, self-harm and bad thoughts about my body. At a certain point, I thought I had overcome those depressing feelings, but a few months after the surgery, I had a crisis with suicidal thoughts. I felt very sad, and just wanted to stop feeling what I was feeling. One day, I made the worst decision. But that same day, I had the biggest spiritual experience of my life, and then everything changed: I learned to see the true meaning of everything, I learned how much my family loves me and I learned to understand God; today I say to you, "it's okay not to feel well at first." Today, I understand that life is much more than being born, growing up, reproducing, and dying. Today, I accept and love myself as I am. I believe that everything has a purpose, we don't have to fit into standards. Because we'll only be able to be happy when we learn to be who we really are and to love ourselves that way!
I know how difficult it is to receive a diagnosis. We feel lost, we don't understand why, we don't know what to do. Girls, this is normal! But we can't give up! If I had given up, how many girls could be encouraged to give up too? So, girls, I'm available to help any of you! I know that sometimes we need to vent, I am here to cry and smile with you, help in any way I can, and I know that there is a group of girls who also need you! It has been 2 years since I had the surgery. And girls, everything I went through has helped me evolve. Not just as a person, but as a human being. Don't be afraid to be different! Remember, "no one is the same as anyone else, each of us is unique"! "

" My story started similarly to many girls, waiting for my first period that never came. At 13 years old, I was diagnosed with the absence of a uterus. I remember the sadness of explaining to my dolls that they couldn't be born from my womb (yes, at 13 years old I still played with dolls, hidden from my siblings, of course! After all, I was almost a young lady! We were in the 80s). I was pushed into a mature adolescence, started to dream different dreams. I tried to focus on being a mother, thinking of other ways to take care of myself and be happy. I didn't know that the worst part was yet to come. At 20 years old, during my first real sexual experience, I noticed that something was worse than I had imagined. In a gynecological consultation, I received the news that I had Rokitansky syndrome, with malformation of the vaginal canal, spine, and kidney. I would have to choose between surgical treatment or dilation, for the construction of the vaginal canal.. All together, on the same day, too many pieces of information to understand. I was a patient and a second-year medical student, with much to learn and deal with. I underwent dilation for almost 2 years, I was not very disciplined, but my boyfriend helped me with natural dilation. It was very painful, but love helped me alleviate the pain. I used a dilator available in Brazil in the 90s, with a single size, and I believe that was the reason for my painful and difficult dilation. Several times I thought about giving up both the dilation and the medical school. Despite the great sadness, feeling of strangeness and pain, I counted on the support of my family, boyfriend, friends, and good health professionals. I went through the first difficult phase of the construction of the vaginal canal and began feeling like a better woman. Today, with progressive size dilators and more information available, I believe I would have had a better dilation process. Anyway, I am sure I chose the ideal treatment method at the time. But other phases of challenges came up: doubts about possible forms of motherhood - adoption, surrogacy, or maybe not being a mother - back crises, pelvic floor care, repairing surgeries, physiotherapy, and other battles to balance physiological functions and cardiac alterations. I remember I have type 2 syndrome. A lot of energy is necessary to deal with so many details. Until I was 45, despite so many health challenges, I had intense personal and professional lives, full of achievements: without children, but close to my family, with friends, husbands, sports, trips, studies, masters, PhD, and a lot of work filled with love and joy. Always with energy and projects, maybe with so much excitement, in order to escape from the deepest encounter with myself. But after some cardiac complications, directly and indirectly related to the syndrome, I was forced to slow down, look at life from another angle, get in touch with my fragilities, and reinvent myself. Now I am aware that my health challenges have somehow "polished" me, leading me through paths of overcoming difficulties, and thus, making me a better person. Until recently, I didn't know anyone with the syndrome and had a strange feeling of being the only one. Then, I met two beautiful warriors, a mother and her daughter with the syndrome, and we created the Roki Institute. Today, I share experiences and I am ready to welcome women like me. After this encounter, I have found new meaning for my life. "

" I have discovered that I was a woman throughout my life... My journey was intense in the search of my real self as a woman in my soul, not in my body; being a woman goes far beyond that. I am Rejane Penteado, 45 years old, a psychologist, with a carrier in Rokitansky syndrome. I have always felt being a different person, somehow I did not fit easily into groups of girls at school. At 15 years old, during a consultation to investigate the reason for the absence of menstruation, I found out I could not have children because of having no uterus. That was the only information I got from the doctor. I was left with that strong feeling of being different, but I did not realize how much different. When he gave me the news, I was still lying on the ultrasound table, and my sister, who was there, said "One day I'll be your surrogate womb." I felt a little sad at the moment. For a few days, I tried not to think too much about the subject and did not share it with my friends. On the other hand, not having menstruation was something that pleased me somehow.
From 15 to 22 years old, I dated, but nothing serious. I was very afraid of sexual relationships, so I did not let boys go too far and tried to preserve myself. But I was not aware that, in fact, I would not be able to have a sexual relationship even if I wanted to. At that time, I was obese; just now, I understand that it was my own way to avoid relating to myself and to others. In college, I gradually started wanting to have a sexual life, but it never crossed my mind that I did not have a vaginal canal. Having relationships that were starting to heat up, I realized that it was going to happen soon, and that is when I decided to go alone to a gynecologist. It was during that consultation that, after a clinical examination, the gynecologist Dr. Anjo (I call him that) realized that I did not know about the syndrome, so he explained it to me; with an illustration of the female reproductive system and pelvic region, he showed me what a normal anatomy was like and what mine was like. He mentioned that at the university hospital in the city, a doctor was performing experimental surgeries and asked if I was interested in undergoing surgery. I did not think twice and said yes! He prescribed some more detailed exams and referred me to Dr. Anja (whose name I also do not remember). My practical side said, "Great, let's solve this," and my emotional side had some questions: "Why wasn't I told before? Am I the only one born with this? Will my sex life be normal?" But I focused on the outcome of the surgery, and a week later, I was in the operating room ready for surgery; however, it was postponed due to an internal problem. I was quite sad because I had prepared myself psychologically for that day. But very soon, a month later, I underwent surgery, and everything went well. I had a lot of support from my mother, who had never told me because she also did not know about that. On the following days, I felt pain, which is common for that kind of surgery, but the first and very intense pain was at the removal of the mold, during the next visit to the doctor. The following months were routines of self-care and special hygiene, as I needed to use the mold daily for bathing and doing basic needs.
"I quickly adapted to the routine, doing everything normally and using a practical mold; I only thought about the result. About 3 months later, I had my first sexual relationship. I felt some normal pain from adapting to the size of the penis to my vagina. I didn't have pleasure right away. But I learned and realized what I felt, how my body and my pleasure worked, and I gradually became more comfortable and normal! At first, only very close people who followed my process knew that I had the syndrome. I didn't like to tell people because I didn't want them to feel sorry for me. I never saw myself as a victim and always believed that happiness and pleasure depended on other issues, apart from the vagina. I had various relationships, until I got married. And then my sister reminded me of the promise and wanted to do surrogacy. We tried 3 procedures and they did not work. I understood that it was not meant to be and decided to accept it. Of course, I had moments of sadness, but I did not want to live with this sadness, nurturing it. I have always believed that life is meant to be happy, and it is our responsibility to do so.
Last year, my sister passed away and left behind a legacy of immense love and two beautiful nieces. One of them is my goddaughter who says I am the best substitute mommy she could have. This makes me so happy! I also tried adoption, until I have decided to get divorced. I realized that I needed to seek my own happiness, as I was not living fully as a woman in my marriage. That is when I discovered myself as a great woman: I have a career I am proud of, I have achieved my independence, I have learned so much, lived love affairs, a separation, I have overcome the pain of irreparable losses, taken risks and dared always more. Today, I feel I am a fulfilled woman, happy with my history, my body, and my achievements. That's why I always say, Rokitansky does not set limits on you. Every woman has the ability to transform herself, through the love that is within each one of us. That is our greatest power!" "

" I found out when I was 15 years old. It was when I had my first boyfriend, my first sexual experience, and still no sign of my first menstruation. Full of doubts, my mother decided to take me to a gynecologist. An intravaginal ultrasound was prescribed as well as a kidney ultrasound, since I frequently experienced discomfort in the renal region. The results showed the absence of my uterus, fallopian tubes, and left kidney. Immediately, the doctor referred me to USP for further investigation. When the doctor told me "you will not be able to have a child," my world simply collapsed! All the necessary investigation exams were done at HC-USP, and the diagnosis was Rokitansky Syndrome. What was that? What are the variations of the syndrome? I had never heard of it before. I felt like a fish out of water. But the possibility of having a normal life without undergoing surgery to construct a vagina made me less sad, which was what I feared the most. My vagina is half the "normal" size. I decided not to use molds since I had sexual intercourse without discomfort. But my dream of becoming a mother had been destroyed in a matter of seconds. The doubts and uncertainties were enormous. Whenever I saw a pregnant woman I knew I would never feel that sensation. Slowly, I got used to it and "accepted" the situation. Almost 10 years later, I don not mind telling my story to anyone! It does not make me better or worse than any other woman. Occasionally, the question "why me?" still surrounds me. But there is a purpose for everything under heaven. God wanted it this way, and so it shall be. My dream of becoming a mother today is a doubt that comes and goes. Is it my destiny? Still full of doubts, I sometimes spend nights researching, reading, and learning more about the case. I did not even know that I have type 2 syndrome. Almost 10 years later, only now have I become aware of it, thanks to the insight I had, discovering the Institute's Instagram. I know that all things work for the best, for those who believe in God. If it is His will, I will have a surrogate mother! If not, I will be a voice and shoulder for girls like me and other women who want to know our story, the Rokitansky story! " "

" Hello! My name is Mayla, I'm 28 years old and I have Rokitansky Syndrome. I've always felt like a different person, like something was "missing" inside me. I have a twin sister, and when she got her first period at age 11, my mother took us both to a gynecologist, who performed an ultrasound and said everything was fine and that I could start menstruating at 16.
But when I turned 16, like all girls with the syndrome, my first period did not come. So my mother took me to another gynecologist to investigate. At the first appointment, the doctor did an ultrasound and informed me that I did not have a uterus and was probably a carrier of the syndrome. After more specific tests, he confirmed the diagnosis, which made me question the previous exams performed by the other doctor.
Dr. Elier Mauch Pereira was very attentive and careful in explaining about the syndrome and the need to evaluate the vaginal canal. At the time, I was very young and overwhelmed with so much information all at once, so I did not allow the evaluation to be done.
The day of the diagnosis was the most difficult one for me and my parents. Nobody knew what to do or what to say. My first reaction was to pretend that everything was okay and that nothing had happened. I was referred to the HC in Ribeirão Preto, where they performed an evaluation and found that I had 2.5 cm of vaginal canal and needed to use a dilator.
For me, it was the hardest day, a feeling of abuse and invasion of my body. The doctors gave me a PVC pipe and explained that I had to use it, otherwise I would lose the vaginal canal and have to undergo surgery. A mixture of feelings overwhelmed me - fear, terror, and uncertainty. I couldn't accept the dilator, and at each appointment, I cried and felt desperate.
I started treatment with a psychologist at HC in my hometown, in order to overcome the trauma caused by the diagnosis, and later with a physiotherapist who provided full support. These people had the utmost importance. But still in mourning and denial, I made excuses not to undergo treatment. I lived with my parents and my two brothers, sharing a room with my sister, and did not feel comfortable doing the treatment in the room. There were several attempts in various ways, and eventually I discovered my own relaxing way to use the dilator: the shower water calmed me down, and there I felt no one would disturb me or "think" about what I was doing. Because as a woman, it was considered "wrong" to know your body intimately.
I soon started my sexual life, but at first, I did not feel comfortable and the traumas caused by the diagnosis reappeared. It was a painful and distressing process for me. But over time and with acceptance, I realized that with the frequency of using the dilator, I started gaining more depth and elasticity, and I managed to feel pleasure during sex.
In a new evaluation of the vaginal canal, they gave me a larger dilator that would help in the process of elasticity. Today, I have an active sex life like any other woman, and I use the dilator less frequently just to avoid discomfort during sex.
After 12 years of discovery and much denial, I can say that I am now living the best phase of my life. My sister introduced me to the Institute due to the anxiety attacks I was experiencing. From then on, I have no longer felt alone in the world, different or inferior to any other woman. I am learning to know myself, love myself, and accept myself as I am. The syndrome is just a condition, it does not define me as a woman.
"Every day I thank God for so many blessings in my life and for the people he has placed on my path. My message to the Roki women, “It is a waste to be born different and spend your whole life trying to be like others." Be yourself, love yourself, and believe that there is always something good reserved for us." "