? Endo back after lap

[KatyT1984]

I had a lap 12 months ago for deep infiltrating endo (it was in my uterus, pelvis, bladder, bowel and rectum). I’ve got a coil in situ to try and keep things at bay. I was put on hormone tablets for 6 months after surgery which stopped in may of this year. The past few months I’ve been getting sharp pains in my lower right side of my abdomen, lower back pain, pains down for legs, problems with my bowels and upper right sided abdo pain, bloating and feeling sick. I’ve had to take time off work coz it’s been that bad. Has anyone had it come back after a year and needed treatment again?

[Moon_maiden]

Hi

It’s worth getting checked out to make sure it’s nothing else as well. I had gallbladder and appendix out after Endo ops. It could be Endo, be careful other things aren’t missed.

[KatyT1984 in reply to Moon_maiden]

Thanks for your reply. I’ve actually just had a uss and mri to rule out gallstones as that’s where the pain started again a few months ago (which wasn’t my typical endo pain) and gallstones run in my family but scan all clear so at least that is ruled out.

[Moon_maiden in reply to KatyT1984]

That’s good 🙂 good to have ruled it out. My gallbladder showed up two weeks after bowel adhesions removed and check for Endo, so they either missed it or didn’t look that far up.

Hope you get some answers soon 🙂

[KatyT1984 in reply to Moon_maiden]

Thank you, can I ask..when did u have your endo op? Have u been fine since?

[Moon_maiden in reply to KatyT1984]

I’m not a good case to go by, I wasn’t diagnosed until 51, although I’d always had painful periods I just put up with it so I have damage from too many years. I wouldn’t recommend anyone leave getting the right care. I’ve had five ops since Feb 2020 with lap and treatment, then hysterectomy and lots more Endo removed. Bowel adhesions, then gallbladder and adhesions and then appendix and adhesions. I asked them to remove appendix but it did help some of the pain.

Sorry probably not much help. Please ask anything, happy to answer

[PaintToughTed]

I had to have follow surgery 10 months after due to adhesions having formed that were causing pain, they found two new spots of regrowth, so can definitely happen in that time frame x

[KatyT1984 in reply to PaintToughTed]

Thank you for your reply, can I ask if your doctor offered you anything else to try and stop the regrowth? Have you got a longer term management plan?

[PaintToughTed in reply to KatyT1984]

I had a full hysterectomy so wasn't felt necessary x

[KatyT1984 in reply to PaintToughTed]

Thank you for sharing x

[G3miniStar]

I have some back after 5 months ☹️ confirmed on a scan after my consultant told me it wasn't possible. It can definitely be back. I really hope not for you though, remember adhesions can also cause similar pain. Can you get an MRI with someone who knows what they're looking at? x

[KatyT1984 in reply to G3miniStar]

Thank you for your reply, I am seeing my gynaecologist this week. I wasn’t due for follow up till next year but can’t wait that long so having to pay for a private consultation with him even though he is my consultant 🤷‍♀️. Everyone kept saying to me surely it can’t come back within a year but I know my own body and it’s just the same symptoms. I had to take a year off work the first time round Battling with getting diagnosed and treatment and I don’t want to do that again x

[Hidden]

Hi Katy,

Sorry to hear you got symptoms come back I have had it come back within a year they put me on hormone injections prostap for another 6 months while I waited for surgery. Make sure you get them to take you seriously at your appointment and good luck 😉 xx

[KatyT1984 in reply to Hidden]

Hi, thank you for reply…my consultant is lovely and was amazing last time and did exactly that, put me on prostap whilst I waited for surgery, although the side effects were awful the pain went away so I cud cope. Can I ask..have you got anything more long term to manage it coming back? We’re you offered anything else, I don’t want to b needing surgery every year or so 😢 x

[Hidden in reply to KatyT1984]

Ya the side effects aren’t great like hot flushes and mood swings but that’s better than the pain. I had my ovaries and falliopin tubes removed last October and had a mirena coil. I already had 2 surgeries and didn’t want to keep have a lap every couple of years or keep being put on prostap. I don’t want children anymore so decided to remove ovaries. I don’t have pain just adjusting to surgical menopause now x

[KatyT1984 in reply to Hidden]

Thanks for sharing your story. I saw the consultant on Friday and he thinks it’s back so waiting for an mri, started back on hormone tablets so hoping they help in the mean time. I’m the same, don’t want any more children so think that might eventually b an option for me as a long term plan

[Cleo45]

Hi Katy, I have exact same symptoms as yourself.. I have had 3 ops and unfortunately it has grown back each time. I had bowel attachment to womb and got detached on the last surgery but latest MRI scan shows it has attached again. Trying to hold off for another op. It is horrendous pain isn't it? I hope you are OK and gives you comfort someone else is going through the same.

[KatyT1984]

hi Cleo, thanks so much for your reply, I’m sorry you are going through this but it really is comforting knowing I’m not alone. My family and friends think I’m crazy and say surely it can’t be back but I just know that these symptoms can’t be anything else. People just think it’s ‘heavy periods’ and it’s so much more than that, so debilitating and stopping me working. I’m seeing my consultant tomorrow so hopefully I can get a plan going forward x

[No-one1]

Hi. I had a second lap a year later to remove more endo. I was told it was back but I think it was also possible they missed some as I haven’t had any endo pain since then. Some of your symptoms sound like the side effects I suffered from the Mirena coil. It gave me bloating, stabbing abdominal pains and pains down my legs. They told me it couldn’t be the coil but when I had it removed those symptoms stopped (although be warned that resulted in heavy bleeding and cramping). I didn’t get it after the last lap and have been much better. Of course everyone is different. I hope you get a plan soon x

[KatyT1984 in reply to No-one1]

Thanks so much for your reply, I’ve actually been pretty good with coils, this is my second one. The first one really helped for the first couple of years to control my symptoms and I had no bleeding which was a huge bonus. I think I might b the same, possibly missed some with last lap as it was all through my entire bowel and he did say he couldn’t guarantee he had got it all or that it wouldn’t come back