Had lap but endo tissue remains

[pjallday]

Hey all!

I’m wondering if anyone could shed some light on my situation.I had a laparoscopy about 3 months ago. I didn’t really know what had happened until my follow up about a month ago and I’m left confused.My surgeon said he found endo on the uterus and removed it, however he also said that he found some near the bowl on the pouch of Douglas but could not remove this as he said it would require another specialist (bowel) to be present.

All fair enough I suppose except the pain is still present pretty much everyday and I guess it’s cos there’s still endo there. He said to wait 12 months to see if it improves and then call my gp if it doesn’t. I’m so sad that the advice is just to wait a year while my pain hasn’t improved and I know that there’s still a lot of endo in there. 

When I asked what more I could do he wasn’t very helpful. He suggested the mirena coil which I’ve already had for a year and doesn’t seem to have helped at all.

Should I just go to my GP now? I despair at the thought of just starting all over again but I don’t know what else to do

[Crazycatladyjones]

Maybe I wrong but I thought if there is further endo they cant deal with they should refer you to an endo speacilists centre as they have the colonrectal surgeons? Maybe ask if he can do that? If not hin then GP x i think why wait a year if its there its there its going to cause problems it needs sorting! Even if the coil helped then its still there! Glad you had your lap done tho take care xxx

[pjallday in reply to Crazycatladyjones]

Thank you for this this is exactly the kind of thing I was hoping to hear. I will try and ask him to do this cos he didn’t mention anything like this to me after the surgery… Like you said I don’t want to wait unnecessarily.

Thanks so much for your response it’s really helped xxx

[BattyForBats]

Hey, sorry to hear your situation. I am in the same boat as you. I also tried the coil and I was in more pain than with the endo so had it taken out. I was then put on the mini pill but after four months I was still having pain so went back and discussed it with the doctor who said I could try to have the implant at the same time. Something I didn't really want but felt like I had no choice but to try it. We I had thr implant put in two weeks ago and felt really spacy and not quite myself so I talked to a pharmacist who told me to give it another week and if it doesn't settle down to gp back to the doctor who will probably either take the mini pill off me or give me something to settle the hormones down.

[pjallday in reply to BattyForBats]

Ah I’m so sorry to hear that! I find it so frustrating that they often just get you to try all sorts of hormonal contraceptives which have all sorts of side effects etc. and no real effort is made to treat it with an alternative. Same here, mirena coil made it worse for a good 6 months, now I would say it’s settled but it’s still as bad as it was and they tell me to just carry on with it. We can’t win sometimes

Have you asked for a laparoscopy? If you wanted one (it’s up to you and your situation) I would ask to be put on the waiting list asap as it can take a really long time for it to come through!

Hope you find something that works for you ❤️

Xxx

[BattyForBats in reply to pjallday]

Had my lap last year. They took as much endo away as they could but wouldn't touch the endo on my bowel

[pjallday in reply to BattyForBats]

Oh I see now, you said that but I misread. It’s awful isn’t it. I’m gunna push to be referred to a endo bowel specialist I think, hopefully they can help me if I manage to see one 😫

[BattyForBats in reply to pjallday]

Don't be afraid to stamp your feet. You are the expert on you, even if they start to make you feel like your not. It may take some time but it'll be worth it in the end.

[A5555]

I also still get the same pains after my surgery than I did before my surgery and I supposedly had all my endometriosis removed. I’m also questioning whether it’s a bad sign that I still get the pains or whether it’s normal to get the pains even without the tissue there

[pjallday in reply to A5555]

Ah that’s awful. Sorry to hear that. If you’re like me, you’ll be so disappointed as I really thought a lap would be the answer, at least temporarily, to having some pain relief but it hasn’t worked out that way. So disheartening.

Have you followed up with your surgeon about what they think can be causing the pain? Mine mentioned there could be some nerve damage which causes pain but I said I knew that this pain was the same as before, so I’m guessing your in the same boat!

Hope you find your answer xxxx

[A5555 in reply to pjallday]

I went private to get my surgery done so I’d have to pay to have a follow up. I told them I had pains still in my final appointment with them but it was only 6weeks after my surgery so they just said it was because of that and that hopefully it’ll get better. It never got better and I don’t wanna have to pay for another appointment with them as it’s been 8 months since :/

[pjallday in reply to A5555]

It’s so annoying how they’ll just palm you off and say ah it’ll get better. Like hello we’ve all been in pain for years and years here 😫