Endo returning 2 yrs after lap? - Endometriosis UK

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Endo returning 2 yrs after lap?

PandoraPenguin profile image
7 Replies

Sorry if this is long but I'm wondering if anyone has had endo come back after a lap..

Potted history.

I had a lap in Nov 2015 following a year of serious abdo pain, mostly left sided. Endo was removed, inc from Pouch of Douglas, adhesions were removed from bowel. Left ovary had cysts and was removed along with the fallopian tube and a vein that supplied it as that was damaged and causing pelvic congestion. My right fallopian tube was severed, something along the lines of it was a bit of a mess and it was accidentally cut when cleaning up (no probs as my family is complete) A previous lap found no endo (not a specialist) but did remove adhesions to my bowel.

I had several progesterone only pills following the op which caused issues with painful periods, acne, mood swings etc. I had a few months on Dianette to deal with the bad acne and my GP and I knew I had used it with no probs before to clear up my skin. I came off that when I burst an ovarian cyst on a flight last summer. I have now found a progesterone only pill which works for me. I get irregular periods but they are chronically painful.

Cut to now

I have begun to develop sporadic painful abdominal pain. This is cramping across my left side (bowel related), heavy feelings in my pelvis and a new pain in my lower right abdomen and right rib cage. Tracking back over the past few months I have had a number of spells of abdo pains but each time I put it down to poor diet choices, bugs picked up at work etc. My current issues seem to have exacerbated following an incredibly painful and bloody smear and a lot of walking over Easter (10 miles a day). I am starting to worry this is endo coming back as I seem to be settling in to the pattern of bowel spasms following from cramping pain elsewhere in the abdomen.

Has anyone else experience this?

I have a GP appointment booked but it takes almost 2 weeks to be seen when you need an out of work hours appointment!

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PandoraPenguin
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7 Replies
Lyz1224 profile image
Lyz1224

I've just posted something similar, I had my diagnostic lap in May 2017.they found a small amount and got rid of it. Afterwards I felt great and finally felt normal.... However since February this year the pain has come back tenfold and I am feeling like it has come back with a vengeance! My legs numb a lot and the pain in my lower back is constant and sometimes unbearable. Get back to your gp xxx

Tonii profile image
Tonii

I’m 24 years old, and this year will be having my 3rd lap- the Endo has come back each time despite specialists saying “in all their time, they’ve never seen it happen” I went for a second opinion and there was plenty to remove. 🤷🏼‍♀️

Clover123 profile image
Clover123

I had lap in August and went back to gynaecologist Monday he said in most cases it can return within one to two years but there is pros and cons to surgery as you’re making more adhesions each time which the endo can attach itself to after surgery!

PandoraPenguin profile image
PandoraPenguin

Glad it's just not me. It feels awful how this has kind of crept up on me with occasional flares I put down to other things (denial) and now it's starting to be a daily occurrence.

elliebean1016 profile image
elliebean1016

This is probably not the answer that you were hoping for but I am 19 and have had 4 laparoscopic surgeries for endometriosis. They found and removed endo each time. My best recommendations are to continue to see your GP as needed and invest in a TENS Unit (I find it super helpful)

PandoraPenguin profile image
PandoraPenguin

UPDATE

Saw my GP, a newish one at the practice who I have seen a few times. He said ongoing recurrent abdo pain was not good so he told me he would refer me straight back to the Consultant. He explained that this has to go through a peer review at the Surgery before it is actioned but as there is no other way to deal with endo that there should be no problem with it going forward. It was interesting that he knew that endo was a "horrible thing that has a tendency to creep back". Prescriptions were issued for Cocodamol and Tramadol to allow me pain management flexibility. So nice to be seen, believed, reassured and helped.

The 30/500 cocodamol are fab as half a one is the same as the OTC strength so I can start with that and add more if needed. Pain is still up and down and is definitely linked to bowels once again. It has settled to the old phase of waking up every day feeling like I did a mega pilates class yesterday and have pulled muscles and then it goes from there.

Thanks to you all for the info and support.

in reply to PandoraPenguin

Sorry to hear of your pain and symptoms. Endometriosis is truly awful. I’m glad your GP was knowledgeable and supportive; that can be so rare with GPS.

My endometriosis grew back within months of the first lap and I’m awaiting my third Lap but this time with a endometriosis specialist as it’s been left on my rectum. I know how awful it is for it to return ☹️

Hope the painkillers help keep you pain free till your lap xoxo

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