The answer is no. No one, except your doctor, can determine that you were born with an incomplete vagina. After treatment with dilators or surgery, your sexual partner will not be able to feel any difference.

Your doctor should ask questions such as "When did your body change (breasts, hips, appearance of hair)?" and "Do you feel any pain or other changes?" It will be important for you to tell him / her everything that bothers you! Next, you should be examined: your doctor will gently evaluate your external genitalia and check your vagina through a manual exam or using a small speculum. It is normal to feel embarrassed and fearful, but the exam is quick and discomfort will be minimized if you can relax. Your doctor will likely request an imaging test called an ultrasound or MRI. These tests do not hurt and are similar to an X-ray. Usually, your doctor will refer you to a specialist (gynecologist or pediatrician) who has experience with Rokitansky syndrome.

A pelvic ultrasound or magnetic resonance imaging (MRI) can show various aspects of your reproductive anatomy. A pelvic ultrasound is usually the first exam to check if your uterus is present and what size it is. A very small uterus is called a "infantile uterus" or "uterine remnant". This exam can also confirm if you have normal ovaries and kidneys. You may need an MRI so that your doctor can see your internal female organs in more detail. MRI can show the extent of vaginal and uterine tissue, as well as any abnormalities in the reproductive system.

Dilation is the most commonly used and recommended method by specialists. You will be the one who performs the treatment, daily or a few times a week, for a few minutes up to half an hour per session. Progressive-sized dilators are used. The complete duration of the treatment can last for months up to 1-2 years, depending on your choice. The beginning can be more painful, so you may use vaginal creams to facilitate the process, and as the sessions progress, the discomfort will decrease. Surgery may seem easier and faster, but complications can occur, as with any surgical procedure. Your doctor will provide further details.

If you have vaginal intercourse before creating a vagina using dilators or surgery, sex will likely be quite painful. You must be careful not to cause trauma or bleeding. Creating a vagina through sexual intercourse can be done, but it is important to be aware of it and gentle to avoid risks and discomfort. However, there are other ways in which couples can be sexually intimate that do not involve vaginal penetration. When your vagina is ready, you can have normal sexual activity and pleasure, like any other woman.

Keep in mind that every woman, regardless of her age or anatomical features, experiences sexual stimulation and pleasure in different ways. Discovering what you like sexually is an evolving process for all women throughout their lives. Exploring your sexuality with yourself and with your partner is important to find comfortable and pleasurable movements and positions.

If you were born with an incomplete vagina but have a normal-sized uterus, it's likely that you'll be able to get pregnant and have a baby. If you were born without a uterus or with a small uterus, you won't be able to have a natural pregnancy. Since your ovaries should produce eggs normally, you can have a baby carried by another person, called a surrogate. Adoption can also be a choice for you.

Someone like your sister, friend, or another person can have a pregnancy for you. You will hear beautiful stories of surrogacy. This child will be generated from your egg and your partner's or a donor's sperm, so you will be the biological mother. Your baby will have your genetics and grow for 9 months in a "borrowed" womb.

This is a surgery that was first performed in Sweden in 2014 with a living donor, and in Brazil in 2016 with a deceased donor. The process is complex, with many steps and carried out in large medical centers. The first step is the in vitro fertilization procedure, in which eggs and sperm are harvested, embryos are created and frozen for later use in the transplanted uterus (so far the same process as surrogacy). Next, it is necessary to find a living or deceased uterine donor. The donor must be compatible, and thus the transplant surgery is performed. It is necessary to wait for months or up to a year using immunosuppressive medications, and then the embryo is implanted in the transplanted uterus. Immunosuppressive drugs must be taken so that the body does not reject the transplanted uterus while it has the organ. Some complications may occur, but if everything goes well, a cesarean section is performed at the time of birth. After the baby is born, you will have the option to keep the donated uterus for a second pregnancy or have it removed immediately after delivery. In the world, there are already some babies born to women who underwent uterine transplant, as well as cases of failure with complications during the process. Currently, the procedure is performed on an experimental basis and indicated only for women who have not undergone prior surgical neovaginoplasty. Science and the search for fertility options are evolving. When you are ready to have children, other options should be available.

In general, some women feel some discomfort or a twinge in their lower belly when they ovulate each month. Most of the time, this pain is mild and nothing to worry about, as it is caused by normal ovulation. Some women with Rokitansky syndrome may have a small uterus, not enough to carry a baby, but sometimes it can cause cramps if there is a small amount of bleeding in the pelvic cavity. Your gynecologist will be able to tell if you have a small uterus and if it needs to be treated. If you have belly pain, it is important to tell the medical team

Most young women need privacy when using dilators. When sharing a room with siblings or roommates, it can be uncomfortable to ask for some time alone, especially if you don't want to share details of your diagnosis and treatment. There are many reasons why people need might time alone: to meditate, study, nap, pray, shower, etc. It's always best to plan your routine and talk to your roommates to figure out when you can have more privacy to use your dilator.

Many young women diagnosed with Rokitansky syndrome feel thrust into a world of new information and experiences. It's perfectly normal to have a range of emotions: sadness and anger, hope and worry, fear and embarrassment, all of which can be part of the experience. Talk to your doctor, share what is bothering you, as he may be able to refer you to other healthcare professionals who can help. You may want interaction and information in appointments or just be as brief and to-the-point as possible. Let your doctor know what way you feel most comfortable.

An essential part of growing up is becoming more independent and establishing some boundaries between you and your parents. When there is a medical issue that requires many appointments and tests, it can be difficult to have privacy. The syndrome involves you and your parents thinking about you as a sexual person, so the level of distress in the family can be very high. For many young people and their parents, conversations about their body can be uncomfortable or even felt as an invasion of their privacy. But remember, parents always want the best for their children. At the same time, just as you have had to get used to this diagnosis and everything that it involves, your parents have too. They are probably worried about you and how you are coping with this new information. Many parents show this by asking a lot of questions. So it is important for you to be honest with them about what you need, including respectfully letting them know when you do not feel like talking. Your parents may find it necessary to talk to other family members, such as an aunt or a grandparent, but you should be included in that decision about who will be informed of your diagnosis. Your parents may also find it helpful to read the Family Information Guide, where we answer some frequently asked questions and help clarify doubts. You can also talk to your doctor to help communicate with your parents.

Some women find it helpful to talk to other family members, while others prefer to talk to a close friend. Sharing your experiences and emotions with other women with the syndrome can be empowering. The Roki Institute is here to talk and connect you with other young women.

Once you have created your vagina, it should not shrink if you have vaginal intercourse or use the dilator once a week for 15-20 minutes.

Yes. It is common for girls to wonder if they are "really a woman" when they receive the news that they were born with an incomplete vagina and/or without a uterus. If you have asked yourself this question, you are not alone. However, it is very important to understand that you are a woman. Your doctor can order a test that can confirm that you are a genetic woman and have 46,XX chromosomes.

The choice of whether and when to undergo treatment is up to you! Like any important decision in life, it is essential that you gather all the information to make the best decision possible. Talking to other women with the syndrome will help you mature your decision. You are in control of your body. You should never be forced or pressured by your parents, partner, or medical team to undergo treatment. Instead, they should support you during the treatment process only when you decide that it is the right time. The medical team should inform and clarify all your doubts so that you can make safe decisions. Your parents should offer support, seek medical care, and ensure privacy if you opt for treatment with dilators. And we will be here to help and support you whenever you need us. You are not alone on this journey! Everything will be alright.