hi all, just wondering if anyone has experienced this…I had excision surgery 5 weeks ago, my symptoms pre op were daily low level pain, pain during sex and without contraception my periods would have been unbearable. During surgery they found and removed superficial and non superficial endo from pelvis, and around bowel. They found some in the bowel but did not remove.
since the surgery ive been making progress until about a week ago where my pre-op daily pain returned worse than ever and unrelenting. No pain killers make a difference. I feel worried and Im scared that either something else is wrong or surgery made it eorse.
Has anyone experienced anything like this? Just want to feel im not alone. ❤️
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PinkPrimrose
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Ive recently had surgery too and was told something by my endo nurse that may help you relax a smidge. Endometriosis is a chronic LIFE LONG condition that has NO CURE. Yes surgery can help REDUCE symptoms, but it often doesn't completely get rid of all of them. Some symptoms may be life long unfortunately, depending on where the endo was, how long it was left untreated and a range of other factors. The aim for me is about making my quality of life better, so my focus is on reducing the pain to a point where painkillers help and i can function enough not to be bed ridden. But it certainly hasn't gone. One line on my discharge letter was very stark....Endometriosis has a tendency to recur, 2 in 5 people will need further surgery within 5 years.
So in short, yes it can come back. If they haven't completely removed everything then you will likely still have pain from what they left behind. Have you had your post op appointment yet? Make sure your gynae knows that you're still having pain, they may need to try something else (non surgical). Also, was your surgery done by a BSGE centre? Especially with your endo involving your bowel! Xxx
thanks for your reply, that’s helpful. Not had my post op appt yet, our hospital seem a bit all over the place and i had to push to even get one! But its due in next month or so. I dont think so, as they werent aware it was in the bowel until they looked inside to excise the tissue xx
Gosh! Inside the bowel or on the bowel? Either way you will need a proper BSGE center, if you go onto the BSGE website you can enter your post code and find your nearest hospital who is accredited. Severe endo requires a specialist. Once you've found one go to your GP and ask for a referral there, or you could ask your current gynae for a referral from them to the specialist. A general gynae can't deal with bowel endo, it is outside their knowledge.
Absolutely no problem. Endometriosis truly is an awful condition, which has so much that is unknown! The lack of research is responsible for the lack of decent treatments and effective non surgical intervention. Most people believe that if they have surgery this will cure their pain, but often it just "improves" symptoms. Xxx
thank you! It was on and in the bowel, they removed it from the outside but left the oart inside as as you said a specialist bowel surgeon would be needed. Thank you for that info, very useful and your message certainly makes me feel less alone xx
Gosh you were very unlucky then! The gynae SHOULD refer you themselves, that is the NICE guidance anyway with severe endo. So in theory they should discuss the referral with you at your post op appointment, if they don't then make sure you bring it up because they can't just leave you under a general gynae with complex bowel endo. It would be dangerous and irresponsible for a general gynae to make decisions about such a complex case. If you go to endometriosis-uk.org then they have some fab advice on severe endo. It is the uk charity so all the information is reliable read up as much as you can about your endo, because you might need to advocate for yourself regardless of the diagnosis, sadly some doctors may continue to be dismissive just because they think endo is a "period problem". So more you know the better!
You're certainly not alone you're officially one of the 1 in 10 who has endometriosis in the UK. A condition just as common as diabetes, yet more misunderstood than most conditions. So it isn't a nice club to be part of lol but we all have the pain in common, we can all understand the frustration and the gaslighting from medical doctors. So you've definitely got people here who have your back, even if we all hate the reason we're all here lol xxx
glad i could help! I accidentally put the wrong website in so I've edited my comment to change the web link it should now take you to the correct endometriosis uk charity. They have so so so much info, it really does help to be as knowledgeable as possible about it all. Xxx
Excision is a big operation especially if the bowel was involved. To be honest they shouln't have done anything to the bowel without a specialist bowel surgeon. But on the other hand 5 weeks is a very short time, I had to have very strong painkillers for about 6 months aftre my op before the pain from the healing subsided. My surgeon said it takes about 8 months to see if the op has been successful and for all the healing to take place.So with time it might get much better. My pain hasn't gone but it is much lower level than before.I think some surgeons and even some endo advocates give the impression excision is a miracle cure and everythng will be better but it's a lot more hit and miss than that. BUt give it more time tell your surgeon you are still in pain, see if he/she can give you something for the pain while you heal.
this is super helpful!!! My gp doesn’t believe I’m in pain and that I should be taken off of pain medication. Since my labs look ok and “I shouldn’t be in this much pain”. I feel like I’m CRAZY!
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read up as much as you can about your endo, because you might need to advocate for yourself regardless of the diagnosis, sadly some doctors may continue to be dismissive just because they think endo is a "period problem". So more you know the better! 
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