How soon can endo return after being remo... - Endometriosis UK

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How soon can endo return after being removed?

jess1981
jess1981
17 Replies

Hi ladies.

I am sorry to post so much.

I had a laparoscopy in June- my gp dismissed my chronic pain but luckily my fertility consultant took the pain seriously and arranged a lap to rule endo out- he thought it was bowel related.

Endo was found in my pouch of Douglas and some was excisied by the back of my uterus the endo near my rectum was lazered.

I became pregnant in July but lost the baby at 4 and a half weeks.

Since then I think my endo has come back.

My periods are super heavy- despite using pads and tampons I'm flooding- it feels like a gush and the clots are huge and I mean massive. The cramps are awful and have me up through the night. I have to get up and change tampons and pads through the night on heavier days. I only wear dark trousers whilst on my period - fear of flooding. I have on occasions had to phone in sick to work- it makes me feel unreliable.

My bowels are terrible- despite cutting gluten and lactose out and my vegetarian diet. 2 occasions I have had stools leave my front end.

My lady dr has been supportive and has requested an urgent scan. She wants me back regardless of what the scan shows- even if it's normal. She thinks my rectum is experiencing spasms which is causing this to happen- could this be endo I wonder? The dr also wants me to see my gynae soon too. I had a disappointing appointment with his assistant which my concerns were brushed over. So I was advised by a dr to write to him with my concerns- Monday it'll be 3 weeks ago and he's not bothered replying.

has anyone had any similar experience to this? X

17 Replies
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3caramel7

Have you seen a gastroenterologist yet?

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jess1981
jess1981
in reply to 3caramel7

No- I saw a lady dr yesterday and she examined me and thinks it's caused by spasms in my rectum. She has referred me for an urgent scan- she couldn't see any tears but wants a scan to confirm this. After my scan I see her again and hopefully she'll send me to my gynae to assess me xoxo thank you for replying xoxo

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3caramel7

Have you seen a Gastroenterologist yet? Have you had a MRI yet? Results?

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3caramel7

Keep those in mind.

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jess1981
jess1981
in reply to 3caramel7

I will discuss the way forward with my gp after my scan which hopefully will confirm no tear there. Thank you for the advice I really appreciate it x

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3caramel7

No probs.

1 like
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Heloo85

Within weeks. Mine did! Xx

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jess1981
jess1981
in reply to Heloo85

Oh I’m sorry to hear your endo has returned so quickly.

Thank you for replying xoxo

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Kerry_M
Kerry_M
in reply to Heloo85

Heloo85: I had a laparoscopy in Sept ‘17 and today (Jan ‘18) was told the pain I’ve had all this week is highly likely due to endo returning - following ultrasound scans, swabs, examinations by gynae doctor and gynae registrar who say nothing else is showing. Am gutted. It’s only been a few months. Almost hard to believe.

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Heloo85
Heloo85
in reply to Kerry_M

Mine was literally weeks. First period after lap was painful. Second was a killer. I was put on my knees three times just getting out my car. Constipation so bad i was passing out. First follow up appointment i was put on the combined pill back to back. I just bled. Second follow gynae agreed endo was back, was put on Zoladex for 4 months. After was given an ultrasound that showed active endo. Ive had a further 4 months to get zoladex out my system and i start a new line of treatment at end of this month. Gutting cuz i got 0 relief. I spent the first few weeks healing from surgery, so wasnt painfree, and since suffering from endo! .. I hope you find a treatment that works! Xx

1 like
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Kerry_M
Kerry_M
in reply to Heloo85

Heloo85: That sounds terrible! You poor thing. And so disappointing for you that neither the combined pill or Zoladex did the trick. It’s the constant pain that gets me, just makes everything hard, and takes away any happiness. How can you be happy when you’re in pain?!!?

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Heloo85
Heloo85
in reply to Kerry_M

No idea. Its a terrible disease. So far ive tried everything. Mini pill continuous, failed. Zoladex twice, failed. Excision surgery, failed. Combined pill continuous and that failed. Im starting aromatase inhibitor this month, its meant to be really good, but doesnt come for free. It has the same side effects as Zoladex. Been told further surgery isnt an option for me atm. My surgeon just doesnt want to do more surgery. I try get on with things the best i can. I applied for PIP and got it, which helps me loads (an option for you). Just cant let this stupid disease win i suppose! Xx

1 like
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Laura_T

I was great after a few months after first operation then worsened after a few months. I had second operation after mirena coil failed. I think it will always come back unfortunately.

1 like
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jess1981
jess1981
in reply to Laura_T

I’m sorry your endo returned so quickly. I think you’re right i think it does come back hopefully I’ll get mine sorted. Thank you for replying xoxo

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Emma5397

3weeks after my lap, I stared to get all my symptoms back, it can grow back whenever so it may have come back...make sure you push for a gynaecologist cause I left i to the doctors and wasted 9months and have only just been referred to see my gynaecologist again, have my appointment next month

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jess1981
jess1981
in reply to Emma5397

I’m sorry yours came back soon- and you’ve had such a long wait to go back.

I will go back to my gp after the scan and she said she’ll sort an appointment then xoxo

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Kerry_M
Kerry_M
in reply to Emma5397

Emma5397: Gosh, that’s so quick.😧 I thought it would be a year or two before it came back. But have had so much pain this last week, worse than before. And after scans today, gynae doc says she thinks is very likely it’s endo returning.😪 What did they recommend for you at your appointment?

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