Endo- Wuh?! (derived from Endowhat ®)- An Introduction: Part I
By Julia Mandeville
I’m an educator by profession and sometimes I like to have a little Q&A session in class.
So let’s try having one right now. Here are the questions:
Did you know that there was a chronic condition affecting approximately 176 million of women worldwide with an associated USD 22 billion in treatment costs?
This condition, along with causing painful periods, pain on ovulation, infertility, internal bleeding and scarring it is also associated with ovarian, other types of cancers and other syndromes like fibromyalgia and chronic fatigue syndrome?
Did you know that there is no known cause or cure for this condition i.e. it’s chronic and it’s debilitating?
And after knowing all of this, it’s still not a widely discussed or recognized condition within the Caribbean and most people don’t even know its name?
You’d say that’s not true or practically impossible, right?
Surely a condition that has such a significant impact on women and society in general should be well known in all communities! Its effects would not only be felt by the woman who has it but her family, friends and society as a whole.
I’d say you’d be right- it should be well known.
And then you ask my what it is and I say the word-
Initially, you’d (probably) give me a blank stare and mouth…Endo-wuh?!
And you’d not be the first to do so.
This generally has been the automatic response I’ve gotten when I told persons I was diagnosed with Endometriosis. My own mother, who (God bless her, has been around for quite some time) only knew of such a condition upon MY diagnosis.
Endometriosis is gynaecological condition that occurs when there is displaced endometrial tissue- this can be found in several places including the pelvic cavity (affecting the ovaries and fallopian tube) bladder, large intestines, rectum, etc.
Why is this so bad? Well, the endometrium (uterine lining) responds to hormone levels in the body and build up and breaks down during the female menstrual cycle. During menstruation (as we’ve all learnt in high school biology), this lining sheds and exits the body…
Or so we thought.
The displaced cells ALSO respond to the hormones and try to exit the body, however, where these cells are located there is nowhere for them to go. So they remain in the area either: eliciting an inflammatory response, causing scaring, adhesions, disrupting normal functions of the organs they are on/ around or all of the above.
Remarkably even with all the medical and technological advances to date, no one has found a single definitive cause/ reason why it occurs. There are several theories: from retrograde menstruation (backwards menstruation- blood flows back into the fallopian tubes and in to the pelvic cavity rather than leaving through the vagina), migration of endometrial cells via the blood stream to other locations, metaplastic cells in regions other than the uterus can change to endometrial cells, but these are all still just theories.
Unfortunately, there is currently no cure for this condition.
Suggested treatments include excision surgeries to remove the endometrial cells and adhesions, hormone treatment- either birth control pills or GnRH antagonists, becoming pregnant or having a hysterectomy. They all sound quite dire huh?
The question I’ve asked myself a million times after my initial diagnosis was, why am I only NOW learning of this condition? If so many women are estimated to have it, why does it seem like there a huge gap in knowledge, particularly in the Caribbean? I was taught (I feel like it was indoctrination to be honest) that pain associated with menstruation is “normal” and that it is just my lot in life. This made me suffer horrible pain in silence for what I considered too long of a time. This then leads to the question- is this how we as Caribbean women are made to feel?
That our pain(s) and concerns are invalid? Are we just really to grin and bear it in silence? How dangerous, how demoralizing is that?
We as a Caribbean people boast of how far we’ve come and how much we’ve accomplished. To be honest, with our resources, when compared to the more developed regions, we have indeed made tremendous strides and that should never be discounted, however, it still seems taboo to discuss “womanly conditions and issues”.
We need to seriously consider the negative impact this and other conditions have had, and will have if the persons with them are not advocated for.