Monday, 16 March 2015

Endometriosis Awareness - Kefilwe's story

Kefilwe Ntshabele is another of the wonderful ladies I met through the Endometriosis Warriors Facebook group. She was kind enough to volunteer her story as part of my Endometriosis Awareness blog series.

I have been so amazed by the strength and fighting spirit of every one of the ladies who I have been so blessed to meet! I can't say enough how much of a help it has been to me to be able to share my experiences with ladies who are going through the same things I am. 

1.       Please tell my readers a little bit more about yourself, your family, career etc?

My name is Kefilwe Ntshabele, from Letlhabile (Brits) – originally from Swartklip. Born on the 2nd June 1978. I’m the youngest of 9 children, 5 sisters and 3 brothers. I did my primary and middle school studies in the rural areas of the then Bophuthatswana (1984 – 1992), then went to a Girls Convent School (St Anne’s High 1993-1995).I’m a Biotechnologist by profession, having completed my NDip at Tshwane University of Technology in 2006, but I’m currently working in a petrochemistry consulting laboratory in Kempton Park.

2.       At what age where you diagnosed with Endometriosis and what initial symptoms prompted you to seek medical advice?
I was diagnosed with endometriosis at age 32, +/-16 years after suffering from around age 15/16 with heavy, painful and irregular periods, painful intercourse, swollen ovaries and legs which were of course painful.

3.       Do you have any other medical issues which complicate your Endometriosis diagnosis (eg. PCOS, IBS)?
I haven’t been officially diagnosed with IBS, but my physician suspected when I went for a check-up last year (2014).

4.       Have you shared your diagnosis with others? If so, what reactions have you encountered on sharing your story and diagnosis with others?  If not, what has stopped you from talking about it?
I have shared my diagnosis with family, friends and colleagues, most of them still believed it was just a bad case of period pains. Some have shown interest in learning more about endometriosis, some just brush off the topic, and others still believe in the “panado” scenario which will make all the pain disappear. Some went to an extent of recommending a traditional healer who’d cure me in a bit.

5.       Have you been for surgery? What other avenues of treatment have you explored?
I have done 3 laparascopies so far - June 2010, November 2010, and the last one June 2014. I have tried homeopathic remedies which helped to an extent and I dropped that due to financial constraints. This is one form of medication I still would love to explore further once I can afford.

6.       How would you say living with Endometriosis affects your daily life, including work and relationships?
Negatively I’d say. I broke up with a guy in 2009 because of this horrible disease. We fought too many time as he clearly thought it was either in my head or an excuse for being lazy. Not that I would blame him because I was going from one doctor to the next and none could “see” anything wrong but horrible periods, not to mention the countless infections I had. Somehow I think my then boyfriend thought I was cheating and being plain careless when it came to infections. I also lost interest in being intimate because of the horror of pain and bleeding almost every time I had sex.

7.       What is one thing you wish you knew about Endometriosis when you were first diagnosed?
The fact that I would have cysts that would rupture once in a while, causing all the pain and infections.

8.       How would you describe what it feels like living with Endometriosis?
Being locked in a secluded space, away from the world and everybody else. People do not understand when you cancel on commitments, and don’t eat some of the foods as well as not being involved in other activities they know I grew up loving L

9.       What advice do you have for other ladies suffering from Endometriosis?
Insist on a relevant medical treatment and not allow to be told it is “normal” for periods to be painful.

10.   What have you learnt about yourself while living with Endometriosis?
I got to understand my body better, and I got to better my relationship with my Creator.

11.   What are your fears regarding your future living with Endometriosis?
Not being able to have a normal social life like everybody else. And the fact that I might not be able to be a mother L

12.   What is your one message for the community, regarding Endometriosis and living with the disease?
We’re not asking for anyone to fix anything in particular but we just want to feel cared for, understood better and supported.

13.   Anything else you would like to share?
No one has to travel this journey alone any longer. There is so many forms of information available, support groups and endo sisters willing to help. It is important to equip yourself with information, that way doctors will not take advantage and just take your money and send you away with a pack of panados. Research is important, make sure you find out as much information as possible about a doctor before consulting. Hysterectomy is not, and never has been a cure for endometriosis, as much as falling pregnant. Endometriosis is treatable, but not yet curable. Never let anyone tell you otherwise.

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