Sylvia Savai, also known as Senje, experienced her first menstrual period at the age of fourteen, which was accompanied by intense pain. At the time, she believed this pain to be a normal part of the menstrual cycle and hoped it would diminish as she got older.
However, the pain has still been part of her, years later.
“I have had this struggle for twenty years, ever since I was I primary school. Every moth I missed school for a whole week because of my periods,” she says.
According to the comedian, the pain has cost her many jobs as she losses one week of the month to periods. Relationships are also hard for her to maintain.
“Imagine being married and not able to perform your wifely duty and yet you can not medically explain what is happening to you. I mostly resorted to hiding my pain from people,” she says.
Endometriosis is highly misunderstood. The entertainer notes that most of her former employers thought she was making excuses not to show up to work.
“People noticed I was in pain but they did not know what was happening, I did not know what was happening to me also. I would experience intense pain and partial paralysis especially on my legs and lower abdomen,” she said.
“Back then people did not know about endometriosis, in fact I used to compare myself to other women within my circle and think that I was abnormal. It scared most of my friends away, Luckly my parents have been very supportive.”
Her journey to diagnosis was long, she recalls appointment with different doctors, multiple tests, different treatment regiments which were all unsuccessful.
The doctors earlier informed her that she had Polycystic Ovary Syndrome (PCOS), which was treated but did not get better.
“With each new gynecologist I saw, I remember hoping that the next one would give me a magic pill and everything would be ok, I’d have my life back again. I even tried herbal medicines and prayers but nothing worked,” she says.
Endometriosis is a chronic gynecological illness that can affect anyone with a uterus. When a person has endometriosis, the endometrial cells that line their uterus implant in parts outside the uterus, such as the ovaries, fallopian tubes and the lining of the abdomen.
At the end of each menstrual cycle, the uterus sheds its lining, which exits the body via the cervix and vagina. The misplanted endometrial cells also shed, but they have no place to go resulting in internal bleeding, inflammation and pain.
The comedian who has had two miscarriages because of the condition was later referred to a specialist at Aga Khan University hospital where the endometriosis diagnosis was revealed to her. By then, her left ovary, bowel and appendix had been severely affected.
“I was shocked, I had been going to hospital and the doctors told me that I would be okay once I give birth. By the time I was getting the right diagnosis my condition was bad so I was put under treatment immediately,” she recalls.
According to Senje, endometriosis has taken over her life, accompanied with very dark days. She describes it as a very lonely condition with need for support.
“I cant go to work, I stay indoors most of the time and I have to effectively overdose on painkillers just to do basic things. It gets worse during my periods and I get prescribed morphine by the doctor to help with the pain.”
“I have had horrific days mentally. I have experienced pain and loss and got through it, and I think of myself as as a strong lady, but endometriosis has a way of getting hold of you mentally and physically,” she says.
The comedian plans a trip to the United states for further treatment and although her visa was denied the first time she hopes that the second application will be successful.
“I am working on proper documents to prove that I have ties back at home so that I can be granted the Visa. My surgery was supposed to be next week and although I am behind schedule. I believe I will be granted the visa and seek proper medical help.”
“I need Ksh.12,000,000 for the treatment, any help whether small or big will be appreciated. I also want to thank those who have supported me,” she adds.
Endometriosis is becoming a more visible illness, thanks in part to celebrities who share their experiences.