Stage 1 endo burnt out and still hurting! Why?

[er1980]

Hey

I wonder if I could get a bit of perspective from those who have been through the mill with endo.

When I awoke from my laparoscopy over 19 days now, my consultant said that he only found a small area of active endo and an old bit of endo and got rid of both with diathermy and that by the time he had finished there was no endo left.

Have since seen my consultant twice as the pain has been pretty intense, some days I am more or less bound to the sofa. He said that maybe my initial pain didn’t come from the endo because stage 1 endo can’t produce this much pain (it was found on the uterosacral ligament)... so he has now referred me for a CT scan to check inside my bowels to see if this is what is creating the pain... but the pain doesn’t feel like a bowel pain at all... it feels like one of my ovaries is being scraped out...

Any wisdom out there? Could my consultant be wrong?

I am a photographer and need to be back on my feet soonish as things are re-opening and at the moment, the only way I am going to make it through a shoot is with a large amount of codeine...

Thank you xx

[Adeno2020]

Hello sorry to hear that to my knowledge pain isn’t dependant on the stage of endo as it wffects everyone differently x

[er1980 in reply to Adeno2020]

Thank you! Am worried my consultant doesn’t know all that much about endo 🙄

[kelsbels88]

Hi

I know this may not be want you want to hear but a second opinion may be good.

Endo pain isnt about how much you have per se. You can have a tiny bit in the wrong plane and be in excruciating pain or have loads and loads and not really know you have it all because of placement and as the previous person said some people handle pain differently. My consultant wasn’t sure how I had been coping when I came out of my surgery that’s how bad it was but I had just been getting on with it obliviously because that what I had to do.

I know from my 1st surgery that lasering it off can cause scar tissue or adhesions which can also cause pain.

Keep pushing I hope you get some answers soon and if not see if you can find a bgse register centre who deal with this condition day in day out.

Good luck

Kelly xxx

[er1980 in reply to kelsbels88]

Thank you so much Kelly for taking the time to reply like this. ❤️

[FluffyPink in reply to er1980]

I totally agree. My surgeon told me that the Stage of endo bears no relationship to the amount of pain. Also, I’ve been told that recovery from Stage 1 can sometimes be more painful as you are lasering so closely. But you shouldn’t be in this much pain 3 weeks after surgery. Completely agree - get a referral if you can to someone who specialises in endometriosis. xx

[er1980 in reply to FluffyPink]

Thank you fluffy pink 🥰

[FluffyPink in reply to er1980]

Really hope you find a surgeon who understands. On a different note, I listened to a good podcast with Emma Barnett who talks about having to work (e.g. interviewing Margaret Thatcher) while doubled in pain - not that any of us should ever have to do this but it was inspirational 🙂 Would be better if we could just get referred to the right people & treated quicker! x

podcasts.apple.com/ie/podca...

[er1980 in reply to FluffyPink]

Oh I will look that up! Thank you!!

[FluffyPink in reply to er1980]

Elizabeth Day is great too (the presenter). She talks v openly re her fertility struggles. Mind yourself. x

[Brambledoggy]

I think I very much unfortunately fit into the category of been round the mill....if you click on my profile and read my experience it might/might not help...I’m 50 and had endo all my life. Buy some books, read like crazy, inform yourself and learn to trust your gut instinct. Even “some” so called expert gynaecological surgeons don’t always know how to remove endo sufficiently so it doesn’t come back. Most GP’s know less than most sufferers. I have a red flag warning reading your post because endo can be minute and tiny lesions and excruciating for that woman or scattered all over the pelvis, bowel, bladder with hardly any pain for another. The endo symptom:pain spectrum is hugely varied and your surgeon should know this, the very basic information. Some surgeries do more harm than good and I say this from experience. If I knew at 17, what I know now, my life would have been very different and that makes me incredibly sad. If I can help, I will, but I’m not a medic, just my own story. Lots of help out there and on here but not all of it necessarily the best for another individual. Get back in touch if you like. P.S in a past life I lived in London as a fashion magazine stylist for teenage mags, so know all about dealing with endo, and dealing with a big shoot! Good luck. X

[HerbM in reply to Brambledoggy]

There are a couple of very good private groups on FB with loads of top notch info if you want to know more. I found them very helpful. Particularly 'Endometriosis Guidance and Information'.

[er1980 in reply to Brambledoggy]

Thank you so much for your reply! So helpful! Yes there are things he said even before the operation that made me question whether he actually knew anything about endo, like “you being bloated would have nothing to do with endometriosis”...uhhhh really?!But thank you for your encouraging message. I’ll deffo get in touch for advice on how to get by with such an active job. First shoot this Monday so we will see how I fare! Xxx

[er1980]

Thank you!!