Two years ago, a few weeks before my emigration, I was examined by an Endometriosis Expert. During the ultrasound he examined the endometrioma on the right ovary and frowned. "Actually," he said,
"when it comes to Endometrioma the decision should always be pro surgery!" And he explained to me how - in order to avoid another abdominal incision - he could go in endoscopically over the
ribcage. Aha, the MacGyver of Gynaecology, I thought. Pretty much all the doctors before advised me against another operation. The last one told me that if I had another operation, I would have a
99% chance of getting out with a stoma, because the endometrioma was probably fused with the intestine.
So what did I prefer - a stoma or an endometriosis cyst that might burst or might turn into cancer?
At home I sat in front of an Excel spreadsheet, made two columns with "plus" and "minus" and thought about what I could enter in which column. After all, this approach had helped me to decide on my last smartphone ...
Too many Unknowns
Unfortunately, the decision matrix fails with the two most frequently asked questions for an Endo women:
"Should I have an operation?"
"Should I take the hormones?"
Why does the decision matrix fail? - Because you don't see answers but only unknowns in front of you. You may remember:
a + x - y : z = ????
- Will I tolerate the hormones?
- Will the hormones hold back the endo or rather shoot a thrombosis into my leg?
- Do I even have a hormone-dependent form of endometriosis?
- Will I be pain-free after the operation?
- Will the endo come back after the operation?
- Will the operation contribute to the endo growing back even faster?
- Will they not injure my organs or nerves during the operation?
The knowledge of others
In the next step one tries to ask others about their experiences in order to replace the unknowns with knowledge. Unfortunately, after a while you notice that they remain unknowns:
"I tolerate the hormones well. Since then it's better with the pain."
"Go away with the hormones! The pain has become even worse".
"The hormones did help with the pain, but I couldn't stand the side effects after a while."
"The operation went well. Thank God I've been painless ever since."
"The operation went well. After that I was even pain-free for a few weeks. But then the pain unfortunately came back."
"After the operation the endo grew back even faster"
You try to trick yourself out of the responsibility of decision making and ask people: "If you were me, would you have an operation?" But that won´t help with the decision. So you read scientific articles about endometriosis to find out that the bottom line is: "More research is needed to give definitive answers".
When thinking doesn't help
At some point you realize, "Bollocks! I can't get any further with contemplating".
Unfortunately, you usually don't notice that until you've already broken your head and are a nervous wreck. People around you start nagging: "Jesus, then just take the hormones", or "Have the operation"! They don't understand your fear. The fear of making a decision with consequences you may have to bear for the rest of your life. And then they come up with the saying: "Dr. XY said that..." But Dr. XY didn't study "fortune-telling" during his medical studies either. Above all, he/she doesn't have to live with the consequences. In the end you have to bear them all by yourself.
How do you get out of this dilemma? Honestly: Not at all!
As strange as it may sound, but the kind of decision with so many unknowns has to be "lived" more than "considered". It is beside the information, which one must and should obtain from doctors and other affected persons, above all the sum of the own experiences that leads to your personal decision. And not so much questions you ask experts and others but yourself:
"What is my goal?"
"What is a realistic goal?"
"Why is it my goal?"
"What would be an improvement?"
"What has helped me so far?"
"What hasn't helped me at all?"
"Are there any consequences that would limit me more than endometriosis?"
"Is there a consequence that for me personally would be worse than the symptoms?
"How high is the risk of this consequence?"
"How would I deal with this consequence?"
"What experience have I had so far with operations?"
"Are there alternatives that I could try out beforehand?
"What would be the worst case?
"How would I cope with the worst case?
"How have I dealt with crises so far?"
"What would catch me?"
"How important is it to me to maintain my physical integrity?"
"Why is the preservation of physical integrity important to me?
"To what do I associate physical integrity?"
"How much do I combine physical integrity with attractiveness?"
"Are all these things important to me"
"Why are these things important to me?"
"How much do I define myself about all these things?"
"If I can't define myself about that anymore, what can I define myself about?"
"How could I compensate for certain limitations?"
"What was my life plan so far?"
"How could I adapt my life plan to certain consequences?"
"How have I tolerated hormones so far?"
"Am I prone to depression and anxiety?"
"Do I feel strong enough just now?"
And so on, and so forth ...
And in the end all that remains is: "How does the decision feel?"
I think one thing is quite normal: No matter how you decide - you are never ready AND there will always be doubts!
One thing is particularly important to me at this point: If you make your own decision on the way with endometriosis to a negative consequence, you should free yourself from the feeling of guilt! Because with so many unknowns, you simply could not have known better.
Take your time with the respective decision!
With so many unknowns, emotions and experiences play just as important a role as reason.
Never ask others to make the decision for you! No doctor and no self-help group can take the decision away from us.
And above all: We always bear the responsibility for our decisions with endometriosis - but never the blame!