Has endo grown back already?

[GemmaLou3]

Hi all, hope everyone's doing well... I had my lap at UCLH in November and they found endo on my womb, ovaries, bowel, nerve endings- basically i was covered. They did do a fantastic job i've been so much better until the last few weeks the bowel pain and horrific pain in my right ovary is back as well as the numbness in my thighs. Can it really grow back this quick? Do i re-refer myself or just go back to my GP for pain meds and put up with it? I'm only 24 and my career is just starting to really take off. Has anyone experienced endo growing back following surgery?? xxx

[Faithhope16]

Hi unfortunately yes it can grow bk quick. I had my ovary removed and tube and my other ovary and tube was completely fine that was in April 2014 then in Nov they found a new cyst and blockage in my tube aswell as a mass in my bowel. I'm due for surgery on Monday to drain cyst but they did tell me in a matter of months this will grow again. So I would get this seen to asap your health is the most important thing and once your feeling well and hopefully pain free your career will follow. I hope it hasn't grown bl for you but just go and get it checked.

[GemmaLou3 in reply to Faithhope16]

Thank you you are right i will go back to see my Doctor i was seen in London and dishcharged so will now have to go through the whole referral process & 6 months waiting list for another op. I hope your operation goes well

[Hidden]

Sadly mine grew back super fast as well. I just had another surgery in April because I was still in horrific pain a month after my Jan 2014 surgery. I think it also has a lot to do with if the dr. burns it or cuts the endo out.

[GemmaLou3 in reply to Hidden]

It's as if the pain went and now its back as if it never left its so strange its as bad as it was in November prior to my op i think they cut and burnt some so it probably is likely to have grown back. We know our symptoms dont we so i doubt im mistaken Hope you're okay!

[Hidden in reply to GemmaLou3]

Yeah, it's super sad we go through all that misery and surgery with the hope that we will have some relief, and we don't. No, I am about 7 weeks post op and I have noticed the pain about 2 weeks post op. I am really hoping it's healing pain and not endo pain.

[Tboag]

Hi, I had my op in March, diagnosed with endo and adeno, I didn't get any releif but my surgeon thinks it's the adeno that's causing me my pain, he excised the endo, so fingers crossed for me that it dosnt grow back, due to have hysterectomy 18th July, for adeno, but ive heard that the endo can 1) grow back if burned, lasered off, but also if excised, as it isn't curable it can grow in new places, such a horrid condition, and not predictable!!!

Good luck, with the waiting times, hopefully you will be seen wuicker as you already have the diagnosis,

Xxx

[GemmaLou3 in reply to Tboag]

Hi, I have adeno too so maybe thats whats causing the pain- Ive been back in touch with the Nurse at UCLH hopefully she can give me some advice and the best course of action. Guess ive been lucky to get 5/6 months more or less pain free really! xxx

[Lilo915]

Sounds similar to my experience.. My bowel pain went away but returned about 4 months post op, and nearly a year on it's even worse now than it was before the excision lap! Spoke to my consultant and she said surgeons can do all they can to remove it and prevent it but eventually endo will keep growing back as there really isn't any definitive cure. and the risk of having frequent surgery to remove it is that scar tissue and adhesions may form and actually cause you more pain than the endo itself.. I would recommend going back to the GP and asking for a referral though, there's no need to suffer without an explanation x

[GemmaLou3 in reply to Lilo915]

Yeah you're right its just a vicious circle i guess. At least i know now it is possible for it to have grown back in just 5/6 months and im not going mad! xx

[GemmaLou3]

I'm not sure what a BSGE centre is sorry i haven't had any pain questionnaires or any contact since i was discharged in March. I have contacted the head nurse though and she's looking into it for me... Just have to wait and see what she says i guess!

[moomoo8]

Lindle can you please explain where you get the 5 years pain free after surgery figure from? I have not seen that mentioned before and am unsure of the expectations. Thanks.