Surgery experiences

[animallover94]

I would love some experience of surgery for endometriosis. I've had ultra scan and an MRI and nothing has come up but there are times when I'm woken up with the pain and doubled over it hurts so much. I had a positive consultation before my MRI which I felt listened too. And the medical professional who gave me the results made me feel like I shouldn't get the surgery as there was too many risks to it. So I would like some experiences from other people please

[ClaudiaGrace]

It is my understanding that surgery is about balancing those risks against the severity of your symptoms and your quality of life. So the question you might want to ask yourself is, is it worth the risk? If you do have surgery and you only have surface level endometriosis I don’t think there is very good evidence to suggest that this will reduce your symptoms, from searching the evidence base that’s available in the public domain. I have also been told this by consultants. My personal experience of this was that it reduced my symptoms for about 6 months, they then returned and years later are much worse. Whether or not they would be even worse without surgery who knows! Your scan could also be wrong and you may have deeper infiltrating endo for which the surgery has a better evidence base, that having been said it will also carry more risk if more work is needed. One option could be to pay for a specialist scan, I paid to see a highly specialist sonographer who did a super thorough ultrasound and that helped me to make my decision about my second surgery.

[animallover94 in reply to ClaudiaGrace]

Thank you for sharing, that's really helpful and insightful! It's really hard to know what the best decision is when there's so much unknown isn't there!

[ClaudiaGrace in reply to animallover94]

Yeah it’s so frustrating and unnerving, I’ve decided not to have the surgery again for now and it’s taken a long time to feel comfortable with that decision.

[Reethi19]

Hi, thank you for posting this. Have you got anything to help you manage the symptoms? I am in a slightly similar position, awaiting surgery but I’m not sure I want to have it either. I am scared it could make it worse, currently managing symptoms quite well on the depo provera injected every 10 weeks. The difference is I had a scan with a specialist radiographer which found endo but it was over 10 years ago. It sounds like you have been very thoughtful and it’s not an easy decision. I’m interested to hearing people’s thoughts and experiences too x