hi,
I have had confirmed endo since 2008. Iv he’s many treatments since including 2 excisions. I am due to have another excision any time. This time tho they are wanting to do a bowel resection too.
was wondering if anyone has had this too? And what the risks are etc and possibly ending up with a stoma?
Hi! I had an emergency bowel resection due to a blockage caused by endo. Fortunately, I didn’t need a stoma. My bowel and incisions healed really well without any major trouble. It’s my understanding that the risk of stoma depends on which part of the bowel needs to be removed and how much of it. Also, I hear that sometimes patients are given a temporary stoma while everything heals, rather than needing one permanently.Mine was on my colon, around the appendix.
Good luck with your next op xxx
Thanks for sharing your experience. I am undecided wether to let them go ahead with it 😬
I would have a chat with your gyne consultant who is doing the surgery, or your endo nurse if you have one? They will be able to explain any risks you could have, and the likelihood of them etc. Then you can weigh up your options. I would also ask what the risks are if you choose not to have the op, because obviously leaving bowel issues could have its own risks. I'm not a doctor and wouldn't ever advise someone to do surgery they don't want, but please keep in mind that your consultant wouldnt just suggest something like that if there wasn't a very good reason. Endometriosis uk has some really fab advice on surgery risks, that might be a good place to look. But definitely call your endo team, they know you best and will ease any worries you have. Xxx
Thank you for your comments etc. i have requested an appt with the Gynae consultant and have found out today it’s on the 18 this month. I have also emailed the endo nurse too so hopefully I get more information and can weigh things up
That's brilliant timing, I think after speaking with the gyne team properly you'll feel better about your choices. I did a similar thing with the GnRH injections, I wanted to weigh up all the pros and cons before I made any kind of decision. My husband didn't understand why I wouldn't just jump on the chance to try something. But for me, I knew that the side effects of the injection could be just as bad or even worse than the symptoms of the endo. So it was a case of see which I felt was the better solution. In the end I chose the treatment, and whilst I've had awful hot flushes and my PTSD has flared badly, it has been nice having a reduction in pain! I was glad to have a super understanding consultant and endo nurse, they both understood me having LOTS of questions haha and have tripped over themselves to put mind at ease. So don't feel bad about asking your team stuff, they are there to help! Write down everything so you don't forget, I have a habit of walking into my appointment and I forget everything hahaha.
hi hidden, I'm in a similar situation, just wondered what you ended up decided? To resect or not? X
Hi, I hope you don’t mind me asking but I’m currently waiting for a surgery date for excision and bowel resection due to endometriosis. I’m really worried that I may be developing a blockage, if you don’t mind me asking at what point did you know it had turned in to an emergency xx
Hi Shellbell 🙂 no problem at all, happy to share. I wish I’d talked more/known more many years ago!
There was a long lead-up to my bowel emergency, involving many years of pain and constipation with periods, which gradually developed into constipation which hardly improved between periods. With this, I experienced virtually constant indigestion, discomfort and wind at both ends plus vomiting on the first two days of bleeding when the constipation was at it’s worst. This evolved further into constipation that wouldn’t shift at all and lots more pain. During this, I was using senna and tried stool softener, all the time assuming the constipation was my fault for not eating well, not drinking enough, not getting enough exercise, etc. I saw a private gynae consultant, as endo was suspected, and he told me the vomiting was probably psychosomatic due to the pain and the stress of failed IVF… So, I continued to blame myself and try to resolve the constipation on my own, but when I started losing loads of weight due to being unable to keep barely anything down at all, I went to my GP. He gave me Movicol to try and get things moving, which was agony but did clean me out. Unfortunately, it blocked straight back up again, so I went back to the GP, who warned me that it could be quite serious if I was completely blocked, and the sign to look out for was nasty brown vomit with black flecks in. Eventually, after many sleepless nights with very loud gurgling intestines and awful pain, it got to the point where I was rolling on the floor in agony and the dreaded brown vomit arrived. The pain was so bad I was breathless and could barely speak to the woman on the 111 line, who advised me to get straight to A&E.
I definitely waited too long for help & I recommend avoiding the final stage if at all possible! I’m sure it could have been avoided if I’d had a detailed scan with an expert much earlier in my journey. (I was on the private guy’s waiting list for a diagnostic lap when it all went Pete Tong.) I didn’t know that endo could actually be growing on my bowel and obviously never thought that my bowel could just stop working or realise how dangerous it could be. Anyway, sorry for the long story! Hope it helps in some way. Are your symptoms getting to be unmanageable? Are you in contact with your GP? xxxxx
Thank you so much for your reply and I’m so sorry that you had to go through that ❤️🩹. Your story literally mirrors mine. I’m at the stage of constantly taking senna and stool softener but it’s no longer working. I’ve now been prescribed Movical and a liquid diet for 3 days. I really feel like things have progressed since my last mri a year ago but no one seems to be listening. I guess I’ll have to see which comes first.. my operation date for my bowel resection or the brown vomit 😭. Again, thank you so much for sharing, I don’t feel so alone or like it’s something I’m doing or all in my head xx
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