I’ve recently received a provisional diagnosis of bladder and bowel endometriosis. Immediately after I went on the pill. This massively helped with general period pain but not much with the endo specific pain.
My gynaecologist has said that I should opt for laparoscopy when the standard pain management options no longer work. At what point do most people go for a lap? Is it immediate typically after the diagnosis or do people try to hold off as long as possible till the pain is unbearable?
I’ve slight hesitations as I’m young and never had a surgery before.
Thanks
M
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Meg_M
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Hi Meg, sorry to hear you’re also suffering. Everyone is so different & has such different experiences do I don’t think there’s an exact right answer. You will only get a formal diagnosis from a lap so it is worth considering so you know exactly what the diagnosis is. I opted to go for mine as soon as possible and it did slightly ease the pain but I’m now awaiting my 2nd one. Good luck x
It’s completely understandable to feel nervous of it. At least a lap will give you answers but everyone is so different so you have to do what’s right for you x
A difficult decision to make and my only advise would be when you can no longer deal with your symptoms or if you feel it's interfering with your life too much.
A lap is the only way for a proper diagnosis but unfortunately it's not normally the only op you'll have if endo is found. You'll need a specialist endo surgeon to deal with that
If you do decide to have op the staff at the hospitals are brilliant and will put you at ease so don't be worrying about that just concentrate on controlling your symptoms for now.
I understand its daunting but if you wait, for example, till its unbearable you may have a long wait after being referred for the op. For example the wait at my trust pre covid was 9 months for an op and now its a year. That's a long time to live with miserable symptoms
Given you have multiple organ involvement its also important to think about controlling the disease. Its not just about whether the symptoms are controlled. I don't want to scare you but its important to understand that too.
Is your endometriosis on the outside of the bowel? Or has it gone all the way through? Is it in the muscle of the bladder or on the urethra? Its really important to catch and excise the endo before it gets into either organ. Take that into consideration before you make your decision.
As the pill isn't helping with the other pain (which doesn't surprise me) it might be worth adding yourself to the op list and making a call 4 weeks before the op date. That way someone else can take your slot.
Heya, for my initial appointments with specialists I went private as it was during the first lockdown. I haven’t decided whether to go private or with NHS for the surgery yet.
Thank you for your questions, I guess I’ve never really thought about how much it might be spreading to other organs and that definitely prompts me to consider surgery more. I’ll definitely speak to my doc again.
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