Ugh! Questionable advice from surgeon about endo returning post excision surgery

[Nikneja]

Hello lovelies,

Just went for an appointment at the hospital with the endo specialist/ surgeon where I live and just feeling so meh!

I had excision surgery in November 2019 and had extensive endo on my abdomen, pelvis, bowel, ligaments and ovaries which was removed after 15 years of doctors appointments and being told I had IBS.

I was pain free for a year after surgery but now feel like my ovary is going to explode every month and have the worst pain down my legs for about two weeks every month plus endo flare ups - all of which make me cry because the pain is so bad and I’m so fed up with it.

I saw an endometriosis nurse last month who said she thinks it’s returned and transferred me to the surgeon. He said he doesn’t think it’s endo related but wants to give me more hormones to shut my cycle down completely (already have the mirena coil), he said it might adenomyosis and he even said he’s not sure if any one of my previous symptoms were due to the endo despite them all vanishing after my op and that they were all text book endo symptoms plus kept talking about bloody IBS - I’m so frustrated with him! He said he removed it all and it wouldn’t return within five years! I know lots of women have had it return within a year and read that it could be growing at a level that is not visible to the naked eye. My GP didn’t want me to just take more pain killers/ more hormones without knowing what the cause was but the surgeon has basically ruled out any possibility of finding out what is going on with my right ovary which was clear on a recent scan. I hate this disease so much! Anyone had a similar situation?! I’m just rambling really but feeling frustrated with it all!

[Bettybloo]

Hi Nikneja,hope you're doing ok today in spite of all the flare-up issues. Your initial story sounds pretty similar to mine and yes it is certainly possible to have endo return less than 5 years after surgery - I'm surprised (but, y'know, also not surprised) that the specialist would say that.

Would you definitely not want to try temporarily shutting the hormones down to see if that changes anything? I'm afraid I don't have any specific advice, but it's worth thinking about what you would like to happen in an ideal world (e.g. more surgery, pain management approach, further non-invasive investigations, etc.) then maybe going back to the consultant or the nurse. There doesn't seem to be a set treatment path for people whose endo returns quickly, but I guess that's partly because every case is different. They should be able to discuss options, though.

Come back and rant whenever you want! Take care x

[Lily1986]

This is almost identical to me!I’ve had a few surgeries but two major excision for significant stage 4 endo and adeno pretty much everywhere inside and removal of one ovary and both tubes. Each time the disease has returned within a year.

Also each time I’ve been dismissed and told it can’t possibly be but later had it confirmed by mri. It took at least 3 follow up appointments of complaining of returned pain for the consultant to actually take further action and investigate. Think he took it as some sort of failure on his part that it had returned so quickly.

I also had mirena coil and had to have that horrible chemical menopause. Not something I will be doing again.

I’ve recently had mirena removed as it stopped helping after first year.

I’ve been given degesterol (I’m trying to get Visanne privately) to take instead only allowed one more surgery which will be hysterectomy and colostomy bag which I’m trying to delay.

Sorry not much help there really apart from being persistent as we know are own bodies far better than they do. We know what endo pain feels like. Best wishes xxx

[EndoJaz]

Yes of course it can return, I had a hysterectomy then had to fight for 3 yrs before I had another lap and had further excision. I was told IBS, imagined, go download a calm app. It was so frustrating. It’s only a quick internal scan to check your ovaries and I have this done at a regular gynae check up as they are monitoring my mass on my ovary. Why can’t they just ever listen to us who know our own bodies and we know when something isn’t right. I can only advise u keep pushing for help and eventually you will get there. It’s so tough xx