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How do I know I have Rokitansky syndrome?

In most cases the absence of the uterus and vagina is confirmed at puberty. There is normal breast development and pubic hair, but menarche (the first menstrual period) does not arrive. This is due to the fact that the ovaries produce female hormones that allow normal development of sexual characteristics, but since the uterus is absent menstruation will not occur. Most women will be diagnosed around 15 to 16 years of age, while others will wait until later, when they will experience problems having sex during the first times, since vaginal penetration is not possible. Since all these symptoms are common to other conditions or diseases, it is always best to see your gynaecologist in order to have the correct diagnosis.

 

What kind of problems does Rokitansky syndrome cause?

The absence of the uterus does not allow a pregnancy to be carried nor menstruation to occur, but such will not cause health problems. The absence of a vagina does not allow vaginal penetration during sexual intercourse.

 

I have been diagnosed with Rokitanksy syndrome—now what should I expect?

The following exams are very important in order to study each patient’s specific situation, because there are slight anatomic differences between each patient.

 

  • A blood sample for chromosome analysis (kariotype)

  • A pelvic ultrasound an magnetic resonance scan ( MRI) to confirm diagnosis and better evaluation of the pelvic anatomy in each patient, especially in view of surgery.

  • Urinary ultrasound scan, since it is common for women with Rokitansky syndrome to have renal anomalies.

 

 

 

The vaginal canal can be recreated through nonsurgical or surgical treatments that allow to obtain a normal vagina and normal vaginal intercourse. The absence of the uterus cannot be corrected through these treatments, therefore the absence of menstrual period and infertility will not change. At the moment there are no existing treatments for the absence of the uterus, while uterus transplantation is currently undergoing experimentation.

 

As for all women, it is very important to do regular check-ups at your gynaecologist or at our Center, where we will welcome you with discretion and expertise.

 

 

After the treatment, will I be able to have a normal sexual life?

 

Sexual activity with your partner is a very personal and intimate experience. There is no reason why your sexual life will be different from that of any other couple. Once the vaginal canal has been recreated, you will be able to have normal vaginal penetration along with experiencing sexual pleasure and orgasm.

Remember that, as for all women, it is very important that you use a condom to protect yourself from sexually transmitted diseases (STDs), such as herpes, genital warts, hepatitis B, hepatitis C, HIV, syphilis, etc.

 

Will I be able to have children?

As mentioned above, these treatments cannot recover the menstrual period nor the possibility to carry a pregnancy. Infertility is a very common condition that affects about 1 in 5 couples and that is due to different causes, one of which is Rokitansky syndrome. Many couples have decided to adopt a child. Regarding the option of in vitro fertilisation and surrogate maternity, this option is legally not allowed, while in the USA and in some European countries (UK, Greece, etc) it has been available since many years.

 

Is it normal to feel angry and depressed?

Yes. In the beginning, many girls and their parents find it very difficult to accept this condition. Most of the girls are shocked and feels angry, depressed, alone and rejected, and most parents feel a heavy sense of guilt.

Psychological support is very important, especially in this first phase, in order to help you and your family to understand and live with these difficult feelings.

 

In our Center we offer a psychological support service, that can listen to your feelings and can help you as well as your family. You can contact us via phone or email (i.e. Contact Us section) for more information or to visit our Center.