Has endo grown back already?

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

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  • 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.

  • 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:)

  • 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.

  • 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!

  • 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.

  • 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

  • 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

  • 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

  • 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

  • A BSGE centre should be following you up because they have to send results to the BSGE for audit of recurrence rates. Have they said they won't see you without a fresh referral as surely that that can't be right so soon after. I was still getting pain questionnaires for 3 years after my surgery at a centre. I think the last one said I would need a new referral if I wanted to be seen again but 6 months seems so soon.

  • 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!

  • Hi Gemma - sorry a BSGE centre is an endocentre that has been accredited by the British Society of Gynaecological Endoscopy and UCLH is one. However, if you find they might not have treated you thoroughly you can ask for referral to a different one. You should expect to be pain free for 5 years after a thorough lap unless they give you reasons to believe there is a reason why not.

    bsge.org.uk/ec-BSGE-accredi...

  • 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.

  • Hi - when the list was set up in 2010 the first endocentres had already started to be set up in 2008 and a national database established for recording all women who had rectovaginal endo excised and for monitoring outcomes based on recurrence within a time period. The number of such surgeries carried out each year is recorded on the BSGE website but the outcomes in terms of recurrence are presumably on their database since this is the only means of judging success rates. I know from recollection that the timescale was 5 years on which they were and presumably still are judged in order to remain accredited. But this requires questionnaires to be sent out to patients each year and I'm not entire;y sure this is happening and should perhaps be taken up with the BSGE since success in terms of low recurrence rates is the only way to judge how thorough they are. I have a list of questions to put to them so will add this to it.

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