My fight with endometriosis has made me a champion for other sufferers

“I got my first period when I was nine years old. It went away after that, then came back when I was 11. The painful periods started when I was 15, in a boarding school. I’d see the school nurse every month and she’d always do the same thing: sketch the uterus on a piece of paper, explain to me how periods work, give me two Paracetamol tablets for the pain and send me back to class. I took the Paracetamols until my body built resistance to them. Everybody in my class knew me as the girl who fell sick when she got her painful period. I felt judged, lonely and misunderstood. I told my mum about the pain and she said it was normal for every girl to have pain during her periods. This pain wasn’t normal, though. In retrospect, it was the first sign my body was sending me that there was something amiss with my uterus.

“The pain became more excruciating as I grew older and joined college. It would come in sharp, angry bursts. So sharp I couldn’t even walk sometimes. An area to my left side – right above my pelvic bone – would get inflamed and hot to touch, and protrude like there was a bowl pushing it from inside. I looked like I’d grown an extra belly.

“My periods were not only painful and irregular but the period blood itself was thick and lumpy. Yet another warning sign I ignored. It consisted of more clots than blood – I’d get about 20 clots on each of the five days of the periods. The clots were as large as marbles and had the deep red colour of ox liver. I once got a clot that was as big as a lemon. I could always feel the clots travelling down through my cervix to my vagina and onto the sanitary pad. It was very uncomfortable. Because of the clots, I used pads during my periods, not tampons.

“I always soiled my clothes and bed sheets. When I was ovulating, I could feel the released egg inching its way out of my fallopian tube and into my uterus. I was constantly constipated I also had severe acne on my face. I should have listened to all these warning signs my body was sending me.

“I first saw a gynaecologist in 2009, when I was 18. He put me on cocktail of drugs including Buscopan Plus and Ponstan. The drugs helped manage the pain but I later developed a urinary tract infection. The UTI worsened to the point where I urinated blood as thick as syrup. The gynaecologist put me on a drug to alkanise the urine and I drank cranberry juice for many months after. It helped.

“I later saw a urologist and he performed a procedure called a cystoscopy, which is exploratory surgery that looks inside your bladder. He picked tissue from there to find out what was causing the infections and concluded that it was chronic cystosis. The diagnosis didn’t tell me anything more than what I already knew. The pain and infections still didn’t go away. Everyone advised me to get pregnant.

“I had a laporoscopy three months later. The gynaecologist found endometrial tissue between my large intestine and my left ovary. This tissue is what had been causing the pain, the inflammation and the protruding belly during my periods. He diagnosed me with endometriosis. Endometriosis (endo) is a condition where tissue similar to the lining of the uterus is found outside the uterus cavity. During your periods, the one inside the uterus bleeds and the sites where there is endo also bleed.

WALKING IN THE DARK

“I was glad to finally put a name to this condition. The doctor put me on hormonal therapy for six months. It worked but it sent my body into early menopause: I got hot flashes and added five kilos in a short span of time. I became depressed. My boyfriend was present and supportive through it all; he responded maturely to my emotional roller coasters.

“Early the next year, in 2010, I burst my appendix while exercising in the gym. It was a stroke of bad luck. I recovered then got on a new regimen of hormones plus a contraceptive. I also developed ovarian cysts.

“I married in 2012 and relocated to Mombasa. We got pregnant with our first daughter towards the end of 2014. It was a surprisingly easy pregnancy. I didn’t have any morning sickness and I didn’t throw up. I added a lot of weight though, and had severe acne on my face, chest and arms. I wanted to have a natural vaginal birth but I wasn’t able to fully dilate during labour. I eventually had an emergency C-section. I fell into post-natal depression, probably because of the yo-yoing of my hormones from the drug therapy.

“I got my second daughter in October 2016. This pregnancy was as smooth as the first, but I had a planned C-section because my placenta was wilting earlier than my due date. I didn’t fall into depression again.

“I am now managing the effects of endo through my diet. I keep a food diary and period diary. I also supplemented my diet with magnesium tablets. Being aware of what I’m eating has helped manage the discomforts of endo a great deal.”