Endometriosis UK
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is endo back?

I have been having pains in my groin all week and today has just been horrendous, I am stuck in bed with a hot water bottle. I currently have the IUD and due to this I do not have any periods which is great however my pain are starting to creep back again and I was just wondering if endometriosis can grow without menstrual bleeding?

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I don’t know but I’m sorry to hear you are suffering.

My situation is different; I had a lap after ttc for many years; endo was found and removed last June ( afterwards conceived but miscarried) and to cut a long story short short; the endometriosis returned and I had another lap last month ;same spot pod and bowel and as it returned so quickly afterwards and it’s on my bowel I’ve been referred to a endometriosis specialist who I am seeing this Wednesday.

After the surgery the gynae told me that either taking drugs to introduce a false menopause state or try to become pregnant to stop endo growing.

I know periods can make symptoms worse; Mine is at its worse during my period.

When did you have the lap? Did the surgeon remove all the endo? Did they lazer or use excision ?

Unfortunately endo can and does sometimes does regrow back; I’m prone to recurrence 🤦🏼‍♀️ hopefully you’re not 😘 I hope one of the ladies can answer your question a bit better.

I hope the pain eases up xoxo

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They found it on my pod, pelvis, bowel and my ovaries. And they removed it through a rectal shave.

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They removed it all then? That’s good coz they didn’t with me( it needs an endo specialist and bowel surgeon present to).

Was it long ago? Could it be things settling after the surgery? Do you have a follow up appointment? xoxo

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I only had a specialist present and not a bowel surgeon. I had this done last july. X

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I am not to sure if they removed all of it he said he took out what he could. X

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That seems odd to remove endo from a bowel without a bowel surgeon. I thought a bowel surgeon had to be there.

Maybe contact the surgeons secretary and list your concerns over pain/symptoms. How has it been since the surgery? Is this the first recurrence of pain? Definitely keep a pain diary; if its regular then maybe you need to have an appointment with the specialist? xoxo

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The pain is most definitely back, I have found an app to keep track of my symptoms which is really handy. I also have bladder issues as well and I went to my gp and she is concerned that I might have endo on my bladder.

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Your GP can refer you to a endo specialist; you will need one as if it’s on the bladder it’s complex endo and general gynaecologist cannot treat it. Ask for a referral if you’re no longer under a specialist. The fact it’s causing symptoms and pain means it needs to be dealt with again. Sadly it can regrow xoxo

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I saw a general gynaecologist and they referred me to urology x

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I had surgery in December to remove endo on my pelvis and bowel. I have since started suffering with horrific pain and just assumed that it was my adenomiosis but went back to the consultant to be sure and he said that when you have quite a lot of endo removed it’s common that adhesions can be left (scar tissue) which can cause pain, they also think that my ovaries have become attached in my pelvis and my bowl may be attached to my uterus but apparently this is quite common after surgery and I’m just waiting for a scan to see if this is what’s happening. Maybe this could be the same for you? X

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It can grow back without periods sadly 😞 I discovered the same thing a few years ago after having the mirena and no periods I assumed it wouldn’t grow. The growth rate has been less and my last surgery was not as invasive as the first two but I do still suffer. Sometimes when I ovulate on my right side it’s incredibly painful as it is twisted and probes to cysts. I hope you have some relief soon. Having endo is draining

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Thank you so much for your reply these are the exact same problems which I have been getting.

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