how long does it take for endo to grow back? - Endometriosis UK

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how long does it take for endo to grow back?

tar2017 profile image
7 Replies

hi everyone, i posted before and just wanted some experiences, time frames and how long it took for symptoms to come back or worsen after a lap. I had one in march and since the onset of my symptoms a year ago, still get horrible lower back pains and the odd upper right and left abdominal pains and since my last period, cramping just before menstruation, which i never had before. my gp sent me for an upper abdominal ultrasound to exclude gallstones, everything fine, and i'm back for another appointment tomorrow. i'm not with a gyn consultant at the moment, right after my lap my pains severely decreased and they discharged me. there's just weird pains here and there on the increase. i only had a lap in march, so it doesn't seem like a long time at all. everyone at the hospital was quite good but i haven't really been given a lot of info regarding where it was found, it was primarily my right ovary as it became enlarged and was removed and i was told it was stuck to my pelvis. they said mild to moderate endo. so now i'm wondering whether some was missed or whether it may have grown back in a relatively short amount of time?

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tar2017
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7 Replies
Sludge78 profile image
Sludge78

The first time I had open surgery to remove endo it was back within 3 months with a vengeance, though took almost 2yrs before anything else was done. First doctor wanted to dismiss me with IBS (despite me having that most of my life...."oh well it can change"). Second doctor felt the lump in my stomach and knew something not quite right!

tar2017 profile image
tar2017 in reply to Sludge78

i'm also having some bowel symptoms at the moment and at my last appointment ibs was mentioned too. i've had to do a calprotectin stool test and i'm waiting for a gastro referral at the moment

bbholloway88 profile image
bbholloway88

Hi there, your predicament sounds a little similar to mine. I had a diagnostic lap (my first) done in February this year and they removed some endo as well as freeing adhesions and drilling both ovaries (I also have PCOS) and said I was stage 2 but that it shouldn't return any time soon.

I had about 3 good almost symptom free months after that, but since then the pain has returned and it feels like it did before my lap which is very disheartening.

When I saw my gynae in July for a follow up he wanted to discharge me and told me it couldn't have returned and that I needed to do more exercise to help any adhesions post surgery (I'm not overweight and whilst I walk 1-2 hours daily anything above this is too painful and on some days I can't even get to work).

Thankfully I asked to stay on his books and I've booked to see him again next month to discuss further as this pain isn't going anywhere soon.

Most research I've done says for the majority of women, the endo doesn't return until at least two years post lap. But I don't think that's too accurate, as certainly looking through this forum, it seems to return a lot sooner.

I would visit your gynae again or get a second opinion. If it doesn't feel right, chances are it's not right.

tar2017 profile image
tar2017 in reply to bbholloway88

same here, the sort of pains i'm having now are very much like prior to lap. it seems my gp is trying to rule out other things before considering endo. prior to my lap, no endo was seen on ultrasound but i was fast tracked to a gyn consultant as i had an enlarged ovary inclusive of a liquid/solid mass - which turned out to be inflammation caused by endo. i don't know how much endo was found where, i only know that they considered it mild to moderate and i know of the right side as my ovary had attached to my pelvis. so i'm assuming this is where the majority was or rather this is where they were concentrating on. i'm just wondering in general whether it grows back after having periods or whether they don't check certain parts or miss some.

CJR99 profile image
CJR99

Sadly it was within weeks for me but,I’m incredibly estrogen sensitive...I have also had a complete hysterectomy/removal of ovaries in June 2017 for suspected ovarian cancer.

In September 2018 I had a diagnostic lap where they suspected after a clear mri nothing would be found...Active Endometriosis conformed after biopsy on pelvic wall and bowel...cysts also...

Please,please rest assured that I am a very,very unusual case.

There are many women who have a hysterectomy and excision surgery and continue to do very well...

I’m so sorry that you’re suffering🤗this disease is bloody relentless!

I’ve recently been medically retired as cabin crew and I’m only 46!

Please please keep shouting you need to be under the care of the gynae team at a specialist centre your GP should be able to refer you back...

Please feel free to message me for ask me any questions.

I’ll be very happy to support you in anyway I can.

Best wishes,Clare xx

tar2017 profile image
tar2017 in reply to CJR99

Clare, i can't imagine what you've been through. how are you doing now?? i was told by my consultant that in time, if i developed severe symptoms we could talk about removing the other ovary. i just assumed that once both ovaries were out that'd be the end of it. it seems like gps or rather mine is reluctant to refer me back to gyn consultant. my pains are sort of to the side where my ribs are and tend to happen when i'm slouching or in a funny position, also tends to be worse before and during my period but gp said it's not likely that endo goes up that far.

tar2017 profile image
tar2017

thanks so much for all your responses. it's very interesting and comforting at the same time to hear from others. my gp has now referred me to a gastro specialist as i've developed some bowel symptoms alongside my upper right sided pains and back pain. also, i've been given destogestrel to try but she believes that my pains and bowel symptoms are unrelated. so she said when everything else is excluded or nothing else is found, we can consider endo. this is all fairly new to me because prior to last year, i never had any symptoms as such, no overly painful periods or trouble conceiving ect... it was literally a very sudden onset of symptoms, a strange bleeding after i had already finished a period and sudden bad back pain.

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