The questions…

I’m already so sick and tired of people asking me if I’ve considered getting a hysterectomy or a laparoscopy to “cure” the endometriosis.

I’m tired of explaining that to say I have endo means I’ve had the laparoscopy to diagnose it. I’m tired of having to explain that I have endo on the bladder, so a hysto would be useless. I’m so tired of explaining further that endo grows back if left on other organs even after a hysto. I’m tired of having to explain that I react badly to hormonal treatments and that a hysto would mean I’d have to be on HRT for the rest of my life. I’m so tired of having to relay the story of how I became suicidal on hormones, of how I’ve gone through this twice in my life, of how I’m not willing to put myself in that danger again just to prove to disbelievers and doctors that hormonal treatments are NOT the answer for me. I’m tired of having to explain what tradeoffs and side effects mean.

Lately, I’m getting tired of having to explain the difference in the type of laparoscopy a woman undergoes – that is to say, that some doctors prefer electrocoagulation type laparoscopy and some doctors prefer excision type laparoscopy. Since I just found all this out myself, I haven’t yet blogged about it on the main Living With Endometriosis website.
But I’m already burnt out. I’m already tired of explaining how so many women have no idea what to ask for in diagnostic surgery, and that they (myself included) think a laparoscopy is a laparoscopy, and that the doctor WILL remove whatever endometriosis is found at time of laparoscopy. This is all false, from what I’ve found by personal experience and have read on the endo forums and have read from surgeons’ websites.

I’m getting these questions once a month, sometimes once every few days. At last count I was asked about hysterectomy alone on March 9th, March 14th, and March 16th.

I’m asked by well-meaning people, often times it’s people who have not found my blog, my facebook page or any of that. And these people have never read up on endometriosis – why would they if they don’t have it?
So of course it’s a logical question to them. I need to keep remembering to answer the questions for the millionth time with the same even look on my face as I would have answered the first time. I need to remember not to launch into a tirade about “what if you were asking a person who DID want to have children? How do you think that would make them feel?” Because I already know the answer would be, “well you could always adopt…”

How do I, a person who does not want to have children, convey to someone purporting hysterectomy and adoption to just any woman with endometriosis, convey that for those women who DO want to have children but who also suffer with endometriosis – it’s not an option to get the hysterectomy, because they want to bear their own flesh and blood, their own genes…they want to go through the pregnancy experience. How do I get it across to someone that to deny a woman the right to this when she’s not terminally ill is like forced sterilisation and punishment – how do you convey that to someone who just doesn’t get it?

You might be asking right about now, “why is that any of your responsibility, since you don’t want children at all?”

It’s the point of the matter. I need to be out there educating people about endometriosis. It doesn’t matter whether or not I want children. To make a blanket statement that one should “try hysterectomy” to “cure” the endo is completely out of place, and people need to know why it’s not cool to suggest such a thing.

I also have to continue to not be put off when I lose peoples’ interest immediately upon my reply. I know that people lose interest the moment they feel their suggestion won’t be met with, “oh wow, gee thanks! Sure! I’ll give that a go!”

Though sometimes I wonder if I should just say that.

The problem is, they’ll keep on talking ignorance and well, I’ll just get upset.

People say I shouldn’t let endo be my life. Even people who have experienced endo and who found relief from it have said this to me. “Don’t let the disease become your life.”

Well I got news for ya. It IS my life. I was born with it. It’s a stated fact as of January, 2009. I didn’t catch it. I didn’t come down with it. I’ve always had it. I always will. Even excising the hell out of it – it grows back. There is no cure. There is pain management. Gaining relief from symptoms through surgery and pain management is not curing the problem. Endometriosis is incurable. I hope for the day when a cure is found, but until then, I for one am acknowledging the fact that I have an incurable illness, and I’m taking steps to find what works best for me on the path of pain management.

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