Reoccurrence of endo after surgery?

[RachelAnn18]

Hi all,

I’m a newbie here but was hoping for some advice from you lovely lot.

About 18 months ago I had surgery to remove a large fibroid and during the surgery they found endo too which they removed. I was told in follow up appointment about 6 months later that I should go on the pill to reduce chances of it coming back, which I did for 6 months but I reacted really badly to it. I came off and was then told to have Mirena Coil fitted instead, but have been waiting for months for appointment for this as I have retroverted uterus so my consultant wanted someone he knew to do it because it would be tricky.

Anyway, I’m just freaking out a bit about whether endo could have come back in these times without any hormonal treatment. I’m symptom free but panicking about possible impact on fertility.

So questions to you all - can endo come back after surgery to remove it? If so, how quickly? Can it come back in a different place or would it just regrow in same spot? Will the coil stop it returning?

I know there are a lot of unknowns too but any info on impact on fertility of mild endo would be great too. Might sound silly but I’m worried that the delays in pill/coil would mean I could have increased chances of having fertility problems...

So many worries - why are bodies so complicated eh?

Thanks

Rachel

[Lovisa]

Can endo come back after surgery - Yes, how quickly differs from women to women. It can come back in the same spot or it can come back in a different area, the coil would reduce it and slow growth down or like others and my self it would continue to grow. Everyone is different.

Could have increased chances of having fertility problems, depends where your endo was in the first place, not all endo affects fertility.

I also have retroverted uterus which made my coil fitting experience not very pleasant so I hope it goes well for you.

[RachelAnn18 in reply to Lovisa]

Thanks so much for your reply Lovisa. My endo was in ‘pouch of douglas’ - didn’t even know that existed! So perhaps less likely to affect fertility?

Has coil not worked out for you? I had one before but it was fitted badly and caused me lots of pain and eventually it was expelled - very reluctant to do it again but feel like I don’t have much choice ...

[Lovisa in reply to RachelAnn18]

I would talk to a GP or consultant about fertility stuff

The coil was great for a while but soon as my periods stopped that's when I started getting new pains, plus the mood swings etc so I had it for 1.5 years then removed it my self. I've never done hormonal treatment (part from one prostap sr injection)

[Hidden in reply to RachelAnn18]

Hey hun my endo is located pod and rectum 🤢.

I had a lap last June by fertility specialist ; I conceived but miscarried ( first time in six years of ttc ) by removing it from pod can definitely improve fertility 🙌🏻

Unfortunately my endo symptoms returned and to cut what is a very long story short I had my second lap last month thanks to fertility specialist taking my concerns seriously. Yes it did re grow back to the pod and on my rectum. The gynaecologist removed all from pod but again they couldn’t remove the endo in my rectum.

My fertility specialist is concerned by how fast it returned; apparently I’m prone to recurring endo 🤦🏼‍♀️ I don’t know if it’s because some was left both times. I’ve now been referred to a endometriosis specialist 😀

If are worried about symptoms returning do back your gut instincts; you do know your body better than any doctor 😘 I was told by some it couldn’t return that quickly but I knew it had 🙄

The gynaecologist advises me to stop it growing either drugs that put you in a menopausal state or a pregnancy; those are the only things that can prevent growth.

I hope the symptoms ease up and you feel better

[Starry]

Hi xx

This article reviews the research on recurrence rate and risk factors. It has been reported that the average two-year recurrence rate is 19.1% (from 23 studies), though this varies massively depending on study criteria. ncbi.nlm.nih.gov/pmc/articl...

Endo is considered benign not malignant like cancer in that an implant does not return once completely excised. However it is considered chronic, so the condition will cause more implants to form. The different types and severities of endo can behave quite differently (some are hormone resistant) , and some types seem more likely to reoccur than others. Some people seem to have it come back quicker than others while others appear to recover completely. The reports I read suggested with expert surgery it's rare for it to return in the same spot but also that it can sometimes be difficult to remove it entirely due to its tiny size, varied appearance or sometimes its awkward location.

This endo treatment guide may also be worth a read.

eshre.eu/guidelines-and-leg...

[Catness]

Hello

I was told after my first lap that I could expect to be symptom free for on average for around 11 months and I’m stage 4 with widespread endo but mainly in bladder and bowel. I’ve got my fifth lap coming up in a few months and have had the mirena coil in for 4 years now. In my case I’m not sure the coil stopped the endo growing or slowed it down as if it did I wouldn’t be having another lap. All of my laps have been for excision surgery too and I’m under one of the most experienced consultants in the country :/ perhaps I’m just one of the really unlucky ones xxx