Alade Omowumi, 31, a Guidance and Counselling graduate of Adekunle Ajasin University, tells TEMITOPE ADETUNJI about living with a congenital reproductive condition, years of pain and multiple surgeries, and appeals for financial support to complete treatment and realise the dream of marriage and motherhood
When did you realise that something was wrong with your reproductive health?
I was 15 when I started experiencing abdominal pain that lasted about four to five days every month. The pain occurred regularly, and I endured it for about three years before seeking medical attention.
When I eventually went to the hospital, the doctor asked if I had started menstruating. I explained that I had never seen my period, even though I experienced monthly abdominal pain.
I was referred to a general hospital, where I was told that I was menstruating internally but that the menstrual blood could not flow out. The doctor explained that the trapped blood was causing the pain.
What did the doctors recommend after discovering the problem?
The doctor asked if I had ever had sexual intercourse, and I said no. I was told that I needed surgery to address the menstrual problem. I was also told that the procedure would mean I would no longer be a virgin, but I did not mind because all I wanted was to get better.
At 18, I went for surgery. However, when the doctors examined me, they discovered that my vaginal canal was absent. This was not what they had expected, so they could not proceed with the operation as originally planned. I was subsequently scheduled for another surgery to create a vaginal opening.
Can you explain your condition to people who may not understand it?
I have an opening through which I urinate and another through which I pass stool. The opening that is absent is the vaginal opening through which a woman would normally have sexual intercourse.
Some people assume that I have no openings at all, but that is not the case. I can urinate and pass stool. It is the vaginal opening that is missing.
What happened when you eventually underwent surgery to create a vaginal opening?
I was asked to return to the hospital towards the end of September, and the surgery was scheduled for October 2, 2014.
The doctors created a vaginal opening, but it later became narrow. I cannot say it closed completely because I can still insert my finger, but penetration would not be possible. I believe this happened because I could not use the dilator after the surgery due to the severe pain I was experiencing.
After the operation, I also began having difficulty controlling my urine. When the catheter was removed, urine started leaking, and I could not hold it in. I had not experienced this problem before the surgery, so I believe it developed afterwards.
I was instructed to undergo vaginal dilation, but the pain made it difficult, and I was not recovering as expected. The urine leakage also continued.
Eventually, my mother asked that I be discharged because the hospital bills were accumulating, and I could not remain there indefinitely. We were told that I could return for follow-up appointments, so I was discharged with a urine bag.
Did the surgery resolve the problem with your menstrual flow?
No. After the surgery, my menstrual blood still did not flow out normally. It came out occasionally for a few months and then stopped, while the urine leakage continued.
On a few occasions, I sat on the toilet to urinate and noticed blood coming out. It would flow briefly and then stop. This happened about two or three times, but it never became regular.
Eventually, I stopped seeing the blood altogether. It continued to accumulate internally, causing my abdomen to swell. Whenever I went to the hospital, the doctors would drain the accumulated blood.
There were plans for me to undergo another surgery at the same hospital, but I was dissatisfied with the outcome of the previous procedure and was afraid to return there.
Does this mean you still menstruate internally?
Yes. This has been going on for about 14 or 15 years.
Did the doctors say there is a treatment for your condition?
Yes. After visiting another hospital, I was told that there was a solution. The doctors explained that my bladder needed to be repaired and that they would also have to create a vaginal opening. The aim is to allow my menstrual blood to flow out normally and enable me to have sexual intercourse.
However, the treatment has to be carried out in stages because of the complications I experienced after the earlier surgery.
The most recent surgery, which I underwent in September this year, was intended to address my urinary problem and help me urinate properly.
The remaining surgery is to enable me to menstruate normally and have sexual intercourse. That is the procedure for which I am currently seeking financial assistance.
How has this condition affected you?
It has not been easy. I have lived with this condition for so many years, and there are things I would like to experience as a woman but can’t.
I once tried to have sexual intercourse, but it was painful. I could not bear the pain, so I stopped. At the time, I did not understand why it was so painful.
I lived with this condition for years without fully understanding everything that was happening to my body. It has been a very difficult experience.
What role has your mother played in helping you cope with the condition?
My mother has been a tremendous source of support throughout this experience. My father is late, so my mother has been the one standing by me through the difficult times.
I am deeply grateful to her for everything she has done for me. For a long time, I kept what I was going through private. Even people in my neighbourhood did not know about my condition. It has been a very painful experience.
Why did you decide to speak publicly about your condition now?
I was tired. I reached a point where I felt I could no longer continue living this way without seeking help.
I was almost giving up. Sometimes, I would ask myself why I have to live like this and whether things would ever get better. I became so frustrated that I felt there was nothing to lose by speaking out. I thank God that I was able to complete my education before the pain started again.
Eventually, I told myself that I had to speak out and ask for help. I knew people would talk, but I also knew that if something happened to me, people might ask why I did not ask for help when I had the chance. I decided to speak up even though I knew it would mean revealing a very private part of my life. I need help.
Since your story became public, have you received any help?
It has been difficult. I mostly stay indoors because of the things people have been saying.
I have read very painful comments. I am trying not to let them overwhelm me. I believe that, in time, I will be able to go out again without being afraid of what people might say.
I know I cannot control people’s opinions, but I need help, and that is why I am speaking out.
What has been the reaction of your long-term friends?
Many of them were shocked. Some told me they had known me for five or six years without knowing that I was going through something like this.
They wondered how I managed to cope for so long without telling them. Many expressed sympathy and encouraged me.
I understand their surprise because I kept the condition private for many years. I did not want people to know what I was going through.
Did you ever feel that the condition was something you had to hide due to stigma?
I kept it private for a long time, and very few people knew about it. It was not something I could easily discuss.
Speaking publicly about it was difficult because I knew people would have different opinions. However, I eventually realised that I needed to ask for help, regardless of what people might say.
I cannot continue to suffer in silence simply because I am afraid of people’s reactions.
Did the doctors tell you what caused the condition?
I was told that the condition developed while I was in my mother’s womb. However, it was not discovered when I was born.
I did not know I had the condition until I started experiencing monthly abdominal pain and went to the hospital.
Were there signs you noticed while growing up that made you suspect something was wrong?
I started developing physically at an early age compared with some of my peers. By the time I was in Primary Six, my breasts had started sprouting, and I was becoming physically mature. However, I did not understand what was happening to my body.
I did not know I had a medical condition. I only began to suspect that something was wrong when I started experiencing monthly pain but did not see my period.
Before then, I had no reason to think that anything was different about my body.
Were you told how much further treatment will cost?
I recently underwent another surgery to address my urinary problem. I was discharged from the hospital about one or two weeks ago.
The doctors told me that I cannot undergo the next surgery immediately because the area that had just been operated on needed time to heal properly. They have to ensure that the urinary problem has been addressed and that the area has healed before proceeding with the next stage of treatment to create a vaginal opening.
The doctors explained that the procedure would take place later, making it difficult to give me an accurate estimate so far in advance.
The cost of treatment can change over time, especially in Nigeria. If I am given a particular amount now and return several months later, the cost might have changed.
Apart from surgery, were there other treatment options discussed with you?
From what the doctors have told me, surgery is the treatment option available for my condition.
The immediate concern is to allow the area operated on recently to heal properly. After that, the doctors can proceed with the next stage of treatment.
Are you currently raising money for the surgery?
A foundation was helping me before my recent surgery.
After the procedure, the woman in charge sent me the remaining N500,000 for post-surgery treatment.
That is the money I currently have. However, I have not received many new contributions recently, and I still need support to continue with my treatment.
I do not yet have a definite figure for the next surgery, so I am hoping that further medical assessments will help establish how much I need.
What kind of support do you need from Nigerians?
I want Nigerians to please help me. I want to live a normal life, get married and have children of my own.
I have lived with this condition for many years, and I do not want to continue suffering. I want to receive the treatment I need so that I can move forward with my life.
I am appealing to Nigerians to support me financially and remember me in their prayers. I need all the help I can get because I cannot do this alone.
What are your hopes for the future, beyond getting the treatment you need?
My dream is to get married and have children. I am appealing to Nigerians to help me achieve that dream through their support, prayers and any other assistance they can provide. I believe that, with the necessary treatment and support, I can have a better future.