Returning endometriosis / Adenomysosis

[Soph903]

Hi everyone!!
Just looking for some advice please. I was diagnosed with stage 3 endometriosis and ademyenyosis in June 2021. I had it all removed (mostly thick adhesions, some on bowel, ovaries etc) and had the mirena coil put in at the same time.

I suffered with really bad symptoms after my surgery so decided after 6 months to get the coil removed in December 2021. I had a couple of weeks pain free but now all of my symptoms have returned worse than before!! I am fairly convinced that it has returned but is it even possible for it to have come back so quickly especially as I was on the coil (didn't have any periods just spotting)???
I feel so low and don't know what else to do as I was really hoping my symptoms would improve, I'm 19 and not able to go out with freinds etc because of my illness.

Thankyou xxx

Hi, I’m so sorry to hear this. I was warned by my surgeon that my endo would come back one day and I had stage 4 removed from everywhere (big operation). Also have adeno.
I have yet to stop taking the pill since the operation but would worry that I would be back to square one again.
Could you see your previous consultant again?
Also I was told by a bladder specialist for another condition to go gluten free. As gluten is inflammatory and adds to the inflammation
as endometriosis is inflammatory tissue. In case this helps.
The only other thing I would say is explore other conditions. For example I also have a bladder condition (interstitial cystitis) which causes significant pain. I also
Have mast cell activation syndrome and postural tachycardia syndrome both of which can cause pain too. So Poss worth seeing if any other linked medical issues.
I’m so sorry this is happening though- endometriosis and adenomyosis are awful.

Hi,
Thankyou so much for your reply I really appreciate it!! Unfortunately I can't see my previous consultant as I went private (had to pay for it as don't have insurance) as my gp wouldnt refer me, I'm 19 so quite young for adenomysosis and endometriosis too so they didn't believe me. I also didn't have a very good experience either as the specialist I went with missed a cyst and two days after my laproscosy i had internal bleeding from it. Sorry to hear you've got alot of conditions I hope youve been able to get some help/treatment. I've had a alot of tests recently as I was losing lots of weight but nothing has showed up apart from the fact that I get urinary tract infections ALOT! My symptoms are exactly the same as I had before just worse I'm just so fed up with it. I'll definitely try gluten free, thankyou X

Going gluten free is not going to cut it here in the long run

I would see if you can get your GP practice to refer you to one of these specialist endometriosis centres listed below. At the very least contact one of these centres directly. And at 19 you were never too young either to develop endometriosis, my problems with endometriosis started on onset of menses at 14.

www.bsge.org.uk/centre/