another surgery just 6 months after my first!

[merlin-mimi]

I had my first laparoscopy in June 2023 where I was diagnosed with endo. Since my surgery, my pain has been worse than before, particularly when passing urine. This was a new symptom for me as I never had any issues with passing urine before surgery. Now it hurts to hold my wee and sometimes I retain it and can’t go despite feeling desperate. I had another scan which came back normal apart from blood around one of my ovaries, but I wasn’t told what this was? I’m now having surgery in 2 days to see if I have endo on my bladder. Is it possible for it to regrow this quickly? I’m worried I won’t get any answers for my pain.

[Moon_maiden]

It could be the Endo was already on the bladder before your first surgery and not removed. If it was and other removed then that could have taken over and started causing the pain and issues. They know so little about the behaviour of Endo.

I hope surgery goes well and helps symptoms. Let us know how you get on

[Lily1986]

unfortunately it can reoccur very quickly, I have stage 4 and each time I have excision surgery the disease comes back within months. The last surgery left me in constant pain which I wasn’t in before. Best wishes to you I hope you get some relief from this horrible disease x

[megiiva in reply to Lily1986]

Hi Lily1986,

Happy New Year I am in the same situation, had surgery last April and the found stage 4 endo,cut everything they can see out,but not only the pain never went away but I had Sibo,BV,Trash, Ureplasma, Streptococcus B and constant problems with my bladder. Dont have endo inside the bladder, but they found on the surface along with some im my bowel, which they only remove by laser. My surgeon said that if the Endo is aggressive and yiu have dysbiosis, which seems to be my case,plus I'm in late stage of perimenopause and hormonal unbalance is so high, Endo simptoms can not only return, but you may not have releive.Now I'm trying to see if I can do Full Hysterectomy as this is the only option now since don't want to have more kids and I'm 44.The doctors know so little about this disease it is shocking as has been around forever. Wishing you all the best and hopefully the pain can be reduced and Endo is not returned so quickly. Please Merlin-mimi do share the outcome and how you feel after the surgery.Sending xx

[merlin-mimi in reply to megiiva]

I am so sorry to hear that you had to go through that! It’s awful that so little is known about such a common disease! I do hope that you get some relief from your symptoms soon!

That was the same as me in my last surgery- they found endo on the outside surface near my bladder and bowel, but not directly on it with adhesiolysis. But now the pain is worse than before and it does concern me that the bladder pain is new since my surgery. I’m only 23 and fear I won’t be able to have kids, especially since they found blood around my ovary.

Thank you for the kind words xx

[megiiva in reply to merlin-mimi]

Wishing you all the best,maybe there's a hope,don't give up.Im using lots of natural remedies too,so maybe try them while you are waiting they will definitely help with the symptoms xxx

[merlin-mimi in reply to Lily1986]

I’m so sorry to hear this! I do hope they find something to help you! Thank you for such kind words! I had no idea it could reoccur so quickly!

[KlP28]

Hi, so sorry to hear you’re in pain. Was it a specialist endo surgeon that your under? And that did your operation?

I was in more pain after my laparoscopy too. My specialist surgeon put it down to scar tissue and nerve ending pain, rather than the endo returning.

It took about 6 months to see any benefit from the op. And I now also take 2 amitriptyline every night which has massively helped with my pain level.

I’m surprised they’re doing surgery so quick after your last. But if it does go ahead, I wish you luck and really hope it helps x

[merlin-mimi in reply to KlP28]

I was seen by a specialist but it wasn’t the specialist who performed my surgery, it was someone who worked under his team. I decided this time to pay to see a private specialist with money I’d saved up since I wasn’t getting anywhere with the NHS and I was having to take several days off work due to the pain, and fainting and vomiting from the pain. It was this new specialist who recommended she checks my bladder to see if anything was missed and to put the coil in to see if that helps (though I am sceptical about it all).

[KlP28 in reply to merlin-mimi]

I had the coil fitted during surgery 2 years ago. It took about 6-9 months for my periods to stop, but now only have the occasional spotting. Less bleeding equals less build up of endo is the theory. Good luck! Take care x