Decisions and Choices

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Yes, it's really me! I'm back from hospital early, because there was no surgery after all.

I went in on Monday morning and left on Tuesday midday. It felt very weird yesterday - being home when I should have been in a hospital ward for at least four more days! The reasons behind it are complicated. I've needed a day or so to get my brain together enough to come here and explain what happened,so my apologies to everyone who has had to wait till now to hear how I'm doing.

Life sometimes sends you challenging decisions and choices. This week I had to deal with a big one. I knew already that my gynaecologist (from here on the "gynae" as it is easier to type!) had reservations about this surgery, but it wasn't until Monday that we had a chance to sit down together and discuss all the pros and cons fully. On Monday I spent a full hour talking to the gynae and then another long talk later in the afternoon with the surgeon. They both were of a similar opinion about my surgery.

To put it simply the hernia is easy to do and will be rescheduled for some time in the future. The hysterectomy and organ clearance are not at all easy or simple. To ease any female reading this and feeling anxious - I am not the average case. My gynae once described me as the worst case of endometriosis he'd ever experienced. Lots of women have hysterectomies and feel loads better for having the surgery. Women with endometriosis are more at risk having surgery, but still can find surgery very helpful, I'm just not going to be one of them. Of course surgery always carries risks, but in my case the risks are most likely higher than the possible positive outcomes.

If I were to try to put it into percentages I'd say it would look like this:
20% chance this surgery would be successful in easing my pain,
40% chance this surgery would accomplish nothing,
40% chance this surgery could be dangerous and/or damaging to other internal organs.

Added to that I would have had to have an extra epidural for pain control on top of the normal anaesthetic. Put that way the whole idea of surgery started to look a lot more scary! My gynae admitted that he was unsure whether he would be helping me or making things worse. He was clearly very worried, although he tried very hard to be soothing and optimistic. The surgeon was even more honest and direct. He said (more or less) that my worries were both sensible and justified. This surgery, given my own personal state of health, is serious and very difficult. He suggested I talk to my family and then make my decision. He said something that helped enormously. He said I had no reason to feel embarrassed or stressed if I wanted to say "No, I don't want this surgery." He said I could even wait till I was being wheeled into the operating room and say "no!" and he'd be perfectly happy to stop right there.

He said that it makes no sense to him that in life we always have choice and yet when it comes to something as vital as our own bodies we tend to feel we are helpless.

Choices and decisions... not easy things ever, but even harder when they relate to something as complicated at this! I did a LOT of thinking. If I said no to surgery it meant accepting the fact that my health issues are here to stay - I can manage them and ease them, but I cannot cure them. I spoke to my family, explained what could go wrong as well as what could go right, and they all agreed with the decision I'd made - to not have the hysterectomy and organ clearance.

On Tuesday the surgeon took time out of his very busy schedule to come see how I was. I told him my decision... and he smiled. He told me he would come back once I'd spoken to the gynae. I had a wait of an hour or so before then. A very loooong wait it felt too! When my gynae arrived and I told him he just burst into this BIG smile. It was very obvious he was very worried about this operation and that he felt I had made the right choice. I suspect that he always hoped I'd opt for no surgery, but had not wanted to sway me either way. He had simply given me all the facts and then waited for me to decide. His last comment was to the effect that the medical profession is starting to realise that endometriosis is a chronic illness that needs to be managed rather than something that can be cured or fixed with surgery.

I am very lucky - I had two extremely conscientious medical professionals who truly wanted what was best for me, but also wanted me to be the one who had power over my own body. They told me all I needed to know, they gave their opinions, but ultimately they let me decide what was right for me. I was told everything I needed to know and always treated as if my opinion was as important as theirs - as it should be considering it is my life and my body.

Not everyone is so fortunate. The last time I was in hospital I met a woman whose doctor never told her the negative side-effects her surgery would have. She is happy with her choice to have surgery, but still angry that she was never prepared for the major life changes she had to face after her surgery.

Coming home still felt very strange. I have been bracing myself for this for months, also giving myself "pep talks" on the benefits this surgery could have for me. Now everything is changed and nothing is changed. I have made one of the biggest decisions of my life and the result of that is I am home exactly as I was before. Everything altered by not being altered. It feels rather surreal, but good. I have absolutely no doubt I made the right choice.
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