Fighting an invisible disease for more than half my life!

Endometriosis.
The painful disease that is not taken seriously enough around the world.
A disease that causes excruciating pain and depression. 
A disease misunderstood and woman not listened to.

I started my period at age 12.(1996) I remember that day so well. It was the day that I became a woman. I remember how excited my mom was and how she told me about the birds and the bee’s.

Mom did warn me that it could be painful. But that I just have to hang in there, cause it’s part of being a woman. Mom also battled with excruciating painful periods. So she thought it was normal.

(1997) mom ends up hospital because of very bad period pain. She has to have laparoscopy says the Dr.  That evening mom was diagnosed with Endometriosis.  The Dr told her that it’s a miracle she even had kids. Back then the doctors believed that a historectomy cures Endometriosis.  So mom had one.

There was not a lot of info on Endometriosis available those years. So we believed everything the doctors said… I mean why wouldn’t we. Dr’s know best don’t they.

1998- (14 years old)the year all my problems began.
I had such bad periods.  It felt like someone was ripping my uterus and ovaries apart while pulling barbed wire around them.

We finally went to a Gynaecologist.  He suspected Endometriosis but played it down as a hormonal imbalance because I am to young to have endo and besides I was not even sexually active then.  He put me on a birth control pill. Yes someone who was not sexually active was put on a birth control pill. The side effects was horrific but I tried to hold out.

The inside on the Emergency room knew me very well.

2001 (17 years old) – after being on birth control pills for 3 years, you would think that it was going better with me. Nope. Not the case at all. It was only after I collapsed for the 4th time in one week and my mom fighting and demanding further investigation that the gynecologist agreed to do a laparoscopy.   Well low and behold, I was diagnosed with Endometriosis. I remember the Dr saying that I might have trouble conceiving one day. But hell.  I was only 17 years old and I did not even think about having kids then. I was still a virgin, and did not even have a boyfriend.
After the lap (laparoscopy) I was put on birth control again. But this time it just did not work for me. The Dr then prescribed the depo provera injection.
Now… If you a young girl or don’t have kids yet. This is probably the worst thing for you. Yes it is known the help manage endometriosis.  But it does not always help everyone. It is supposed to stop your cycle. Mine it just kept going. I had a full blown period for 9 months. To a point where I looked like a ghost with big black circles around my eyes.

I was then prescribed premarin to stop the bleeding. Thank goodness it worked.

I am 30 years old. I have had 8 operations for Endo.  My last one was 25 th June 2014. A laparotomy(open surgery).  My bowel was stuck to the left pelvic wall. I had endo on the colon that had to be excised.

This disease is the reason why we don’t have kids yet. The emotional trauma it puts you through is so hard to explain to anyone who has not walked this road.

This is just me sharing my story. But keep an eye on this page. We are trying to raise awareness in South Africa.

And I will not stop fighting until we have done that.

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http://www.endpain.co.za, a wonderful up to date website with information about this terrible disease.

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6 thoughts on “Fighting an invisible disease for more than half my life!

  1. I’m 27 had 3 surgery’s also heavy pain since 17 didn’t know I had it until 22 also my reasons for no kids:'(:'( and it’s really bad cause if you tell people they will react like it’s just another story* but the pain is understandable and can not be described! Sucks !!! Thanks for your story* I always feel you and any one else with Endo’s pain. . Good luck! !

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  2. I’m a 39 yr old women & my period pains are unbearable making me feel like running away from my own body. I wish there help even to us who can’t afford expensive surgeries.

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  3. Please, please don’t go for a historectomy unless it is really needed!!! I got one when I was 26…. and I still wonder till today what if…. Your stomach will never be the same ( unless you are blessed with good genes ) I look like I’m at least 4 mnths pregnant, there is no return for my stomach.. I hope all goes well for you. Maybe it’s Gods will, I know it was for me….. today I have a wonderful little boy, I adopted, who needed a loving Mommy and Daddy , at least I can say thank you Lord for giving me a chance to be a Mother.

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  4. I am 34 and go in tomorrow for my fourth laparoscopy. Gap between them is down to just nine months now. So nice to know I am not alone!!

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