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Kefilwe’s Fight Like a Girl Story (Endometriosis)

Hi, my name is Kefilwe. I am 39-years-old from South Africa.

I was diagnosed with endometriosis in 2010 at age 32, 15+ years after going from one doctor to another with absolutely zero help. My journey started when I was around 16/17 years of age with heavy periods that I’d have twice or thrice in a month. I was lucky enough not to have much pain at that stage. When I was 18, I woke up in the middle of the night to horrible pain, bleeding heavily with lots of clots. I managed to get to the doctor the next morning and was given pain killers and sent home with a three months’ supply of Triphasil. I was told that would stop my pain. Unfortunately, that was not the case, as my pain continued. It actually worsened with the years. I used Triphasil for the next 5 years and finally decided to quit it.

Around 2002, my pain got worse, and even when I went to different gynaes, I got no help. All I was given was different painkillers and different birth control pills. I did scans, and now thinking back, many times when cysts were observed on the scans, I was told it was “leftover blood” from the period before, hence I was in pain and at times with a horrible smell down there. In fact, thinking back now, I ruptured countless cysts which gave me horrible infections, and I would actually swell up from the inside down to my feet and hands. Still, no doctor could give me a diagnosis. As a matter of fact, I was once accused by one doctor of having had an abortion. Seriously??? I wasn’t even sexually active then, given the pain during and after sex, the bleeding, the smell. That put me off sex completely. And to be told I’d HAD an abortion was just a total insult in my side.

Sometime in 2009, I had one of those ruptured cyst moments. My ovaries were so swollen, my tummy swollen, and my feet swollen so bad I could barely walk. I went to one GP who actually did a pap smear. Results came back with no cancer cells, but ruptured/overgrown cells. He urged me to go see a gynae straight away after giving me a dosage of antibiotics to clear the infection and pain medication. I was reluctant to go see a gynae to be honest, given the fact that I have been to countless gynae with zero help. Finally I dragged myself to a gynae after thorough research and found a women’s hospital in a town close by. God bless the day I went through the doors of that hospital, equipped with the pap smear report and a referral letter from the GP. My journey to a better quality life began.

I was later diagnosed there, after I had my first laparoscopy in 2010. I have since had three laparascopies and one myomectomy. Last year, after my myomectomy, I was diagnosed with POF (premature ovarian failure). That sort of put me in “menopause.” Symptoms come and go, hot flashes, mood swings, nausea, fatigue, insomnia, increased appetite, and high blood pressure are just some of the things I got used to living with. At age 39, with no kids and staring menopause in the face. I just did my FSH and AMH yesterday and am waiting for results. Hopefully I can try one more time for a baby before I hit the big 40. It’s now 02:44 and I’ve been up since 00:20 with no sign of falling asleep, and yet have to wake up in the morning, get ready for work and function during the day. ??

South Africa
Submitted 06/26/2017

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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  1. Jessie

    Hi kefilew, my name is Jessie and I can relate on some level to what you have gone through. The years of going to drs,hospitals, specialists, all to be turned away told it is a “bad period” to be put on meds and hormones.. 18 years went by before I was officially diagnosed with endometriosis. That was 2 years ago. I just had a 2nd surgery this past Monday and now diagnosed with interstitial cystitis as well . I don’t know where my journey will go now. I hope for you some form of treatment works !! We all respond yo treatments differently . Keep us updated if you can!

    • Kefilwe

      Hi sis. It is very frustrating to have to go that long before we get help/diagnosis. Hope you are found well now xxx

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