Bowel surgery next year and not coping

[FairFacedFairy]

Hi Everyone,

Not posted or been on for a little while but I'm feeling like it's all finally become real and I'm finding myself getting really emotional all the time.

My background is that I had my diagnosis lap in August where they found severe endo covering my bladder, bowels, left ovary and pelvic wall. They couldn't do anything because the bowel endometriosis looked to be deep infiltrating so my surgeon and chosen team will be doing as much as possible in my next lap.

i have just had my MRI to see how deep my bowel endo is and all of a sudden just hit me how scary this is. When I first had pains I had no idea that it would come to this. Everyone thinks I'm being really brave as it's all been a bit of a blur this year but I'm starting to panic and I'm scared to tell anyone.

Can anyone with Bowel involvement - however small or big - tell me about their experience?

Would be a big help.

xxx

[Shehulk]

Hi, I had a lap 4 weeks ago to excise severe endo from many places , including my bowel. My bowel was stuck to my uterus and I had a large endo nodule pushing into my bowel. When I was first told about this a was really scared about the op, as time went by, my symtoms got so bad that I actually started looking forward to the op. The op was quite long, almost 6 hours but the manged to remove most of the endo, including all the endo outside my bowel. While the first few days after the op were quite hard, I have found the recovery a lot better than expected, and just days after the op I was already taking less pain relifief than before . Now 4 weeks after the op, I am feeling quite well, still recovering and get tired quickly but feeling very positive. Please feel free to message me if you have any questions x

[Alina_Mihaela]

Hi,

I was diagnosed with endo for the last 4 years and I was on and of treatments. I went in October for a left ovary endo and when I woke up I had 3 more. I suffered with bowel for years and now I still have symptoms.

Be brave until the end, pain will ease and in some areas may disseaper as well.

Good luck

[mierran]

I have deeply infiltrating stage 4 endo and have had several operations where rectovaginal nodulea were removed. One I had to sign consent form for a stoma bag as they thought I may need one but fortunately they managed to stitch the ends together ok.

they used to give bowel preps pre surgery where you had to stay in overnight and drink several large jugs of disgusting liquid to clear your out. However, that is now not used so much as they found it increased the risk of post op infection.

I would advise buy yourself some peppermint oil capsules and also stock up on a good probiotic for post op as it took my bowels a while to return to normal.

I now have either ibs or ibd but whther that is linked to all the surgery, who can tell. But I can say I couldn't continue in the pain I was in - I couldn't function.

You will have two teams of surgeons - gynae and colorectal - working together

Think about the alternatives. What will happen if you don't have the op? Probably not a pleasant thought

good luck, and quick recovery. Tho be aware -my midline op it took me 3 months to recover from and my laparoscopies about 6 to 8 weeks. I did have, lots of endo removed and adhesions broken down so ops several hours long each time. 1st treatment lap they thought they were going to have to cancel the other patients as my op took so long.

[JuCeb]

Hi there. No wonder your head's in a spin from all that.

I have stage 4 endo, diagnosed 4 years ago, and just recovering from my second lap where my left ovary had to be removed as it was obliterated by large endometriomas. I have patches of endo on my bladder and bowel, and it appears that my uterus is stuck to my bowel as there is no space in the Pouch of Douglas, so it maybe I need a larger op further down the line as you describe. However, what I have found is that since being on progesterone prior to my lap and now having had a Mirena fitted, it basically puts any remaining endo to sleep thus has radically improved my bowel movements and bladder function, although I still suffer from the occasional interstitial cystitis flareup. I'm also taking a low dose of Endep, not sure if you have this in the UK but no doubt something similar (I'm in Australia) that has also helped with these issues.

Hang on in there, I'm sure you will feel much better after the op x

[SLDRWFE]

During a laproscopy in 2000 they found endometrial tissue on my bowel, my right ovary and I forgot where the 3rd spot was. If you can get try to have it removed laproscopally. If the bowels get scar tissue on then depending on the hardness or softness of scar tissue it can cause problems. If you have to have to have surgery that involves your bowel, take it easy a while after surgery. No lifting or anything strenuous.