Could my endo be back so soon?

[Sammyh54]

Hi all,

I had my first laparoscopy on 7th December last year to diagnose and treat endometriosis. As far as I gather it was mild but I had a lot of it in various places. I had a post op follow up in March this year and my surgeon asked how I was and I said I was still experiencing symptoms around my period but he said it was my body getting back to normal and that was ok. We are now 6 months on and the pain is getting progressively worse. He did say after the op that there was some old Endo that he’d left as it wasn’t inflamed, however I am wondering if the removal of the other Endo has caused this to flare up? I am so fed up as I seem to have had pain every day since my last period 3 weeks ago now so it’s not just restricted to once a month. I thought the op would remove my pain but it’s getting worse now!! Could the endo be back already or could the old endo flaring up? Would appreciate any advice. Thanks 🙏

[BendyClare]

Yes! They may have missed some in your laparoscopy. One thing I’ve picked up in all my reading since diagnosis is that there is not a standard time period for symptoms to reoccur. And the standard response of “it can’t have grown back yet” from specialists is seemingly incorrect and very dismissive. Be your own advocate! If you are having symptoms and the Dr who performed your Lap is dismissing you, get a second opinion. Good luck! x

[BendyClare in reply to BendyClare]

Also, find a new specialist who is more versed In Endometriosis. There is no such thing as inactive endometriosis and he should have removed everything. Join Nancy’s Nook on facebook and use the search bar for this, so much information.

[E-ZEE]

The answer is yes!! They can miss the old tissues and it will come back again quickly , its time to change your surgeon ,pls go to BSGC hospital and find endo specialist,hope u get rid of this mess soon. GOOD LUCK XX

[Chrysta123]

They claim to gave got all of mine (half of it was adhesions caused by the endo rather than endo itself) and I have felt a massive difference my first period was horrific but after that the pain was so mild paracetamol and ibuprofen twice a day done the trick! I just struggle with nausea now and thats it so the fact you still have symptoms makes me feel like they did miss some and I agree with the others that you should get a second opinion! The doctor who spoke to me after my surgery and also my consultant both said to me that even if they did get it all that it can start to grow back about 6 months after my operation, how true that is I don’t really know but if your getting worse at the 6 month mark maybe more is growing back? Good luck x

[Sammyh54]

Thank you for your comments, believe it or not he was an endo specialist I saw and apparently highly regarded. My pain is not horrendous like some describe, but it’s a constant ache and throbbing which get me down a bit but I’m not as bad as some. I will research more specialists as I felt a bit like he didn’t really explain anything at my follow up appointment. I was in and out in 5 minutes and most of that was him dictating my discharge letter on his dictaphone.

[StefaniaJW]

Sounds like not all endometriosis was removed in the first place and it was just an explorative laparoscopy. You will need another laparoscopy with an experienced endo surgeon with extensive experience and low recurrence rates.

I am so sorry your first was not successful, but oftentimes that's what happens with an explorative surgery instead of a planned laparoscopy that is aimed at removing all endo in one sitting, where normally an a neurosurgeon, a urologist and a bowel surgeon are present too to make sure nerves, bladder, urethers, kidneys and bowel are all clear too.

TO ALL LADIES WHO ARE ABOUT TO HAVE THEIR FIRST LAPAROSCOPY PERFORMED: GET IT RIGHT THE FIRST TIME!