What happens now? Post laparoscopy

[hollywenonah]

Good Morning!

I had my laparoscopy nearly 2 weeks ago now, the surgeons discovered endo on both of my ovaries and removed as much endo as they could (but one was too dangerous to remove entirely). Apart from them telling me this after they woke me up, they didn’t really tell me what I’m supposed to do next, and yet I have so many questions.

Once you’re diagnosed with endo, does that mean it’s a permanant condition?

If the endo is still on my ovary does that mean it could start to spread again?

Will the hospital send me a written review of my surgery?

Sorry for so many questions, I’m reluctant to contact my GP as they were so unhelpful before I was diagnosed, they firstly told me that it was ‘just painful periods’ and that I ‘wouldnt be diagnosed with endo’ and that ‘if you just get pregnant the pain would go away’

Thank you for reading,

Holly xxx

[princessk09]

Hey, did you get a discharge letter? Mine said what the surgeon had found.

You’ll have a post op appointment in a few months. Endo can grow back but for some women it doesn’t. Mainly hormone treatment can prevent it growing back. Xx

[luthien]

Hey, you should have a follow up appointment to discuss all of your concerns and what happened / found during your op. I had mine at two weeks, I know some women have it at 4 months. If possible see if you can see your specialist - just call the secretary and say it's a follow up appt post op. If you can't then see your GP (if you don't like your current one then change), they will at least or should have your notes about your op so they can just read those out. I had mine CC'd to me in the post at home.

Endometriosis is permanent, it doesn't go, even if all of it were removed at a visual level, cells still remain and that's enough to start it again. Your endo on your ovaries can cause endo to regrow. But it's important to note not all women have regrowth at the same rate as previously for some it's less for others it's more and some don't even notice, it doesn't always regrow in the same places, your symptoms may be different so it could be easier to manage. It's also different for different women; some have lots of endo and a little pain, some have little endo and lots of pain.

Hormones can slow down endo regrowth but it still grows, so it can help in-between surgeries or when you just aren't ready for it, or can manage, or don't want to think about it just yet. Ultimately surgery and additional ones will be required to remove endo and it's regrowth. If it's left with no surgeries some women can manage but then realise it starts to affect other things like bladder and bowel potentially resulting in more invasive and risky surgery. For some, all they need is one surgery then they can just be themselves again with manageable symptoms.

My specialist was always realistic and got me to think about how much pain / symptoms I could healthily manage to get on with my life post op; no one can guarantee all the symptoms will go so I said I would be happy with half the pain levels, then see where to go from there.

Hope that helps xx

[hollywenonah in reply to luthien]

Thank you so much for your reply, this information is so helpful! The hospital were very persistent on the fact that I should have the marina coil, but I’ve been on the pill in the past and the hormones it creates was giving me really severe anxiety, so I am reluctant to go down that path again. Also, I felt that if I did have the coil, I wouldn’t be experiencing the symptoms of endo, therefore it could spread without me even realising!

I will definitely look into lifestyle changes, I do eat healthy and excercise 4 times a week, but I will put forward your advise to the doctor when they call me in for a review.

Many thanks

Holly xxxx