Well, I have a very long history but to keep this short, I am looking for women who have had endo on thier colon? Mine is now caused a lesion and my pain is back to being unbearable! I have had diahrrea, anal pain, weight loss, stomach cramping you name it. My primary Dr ordered a CT scan to make sure. They found a lesion in my sigmoid colon, believed to be connected to my right ovary. But I am seeing my colon-rectal Dr to make sure it is not anything major and have yet another colonoscopy. Then I will go back to my gyn to have go from there.
I had a partial hysterectomy for severe endo back in i think 2007. Kept both ovaries. Iknew that was a mistake, but wanted to keep my hormones as natural as possible. But I am soooo done with this crap. LIterally .
So anyone have endo or a lesion on your sigmoid colon and what happened?
Hi. I sympathize with you. I just had my endo surgery yesterday. An MRI back in December showed probable adhesions between my left ovary and sigmoid. Besides chronic pain for about 4 months in the area, I also felt a pressure like I always had to pass gas, etc.
I had a colonoscopy last week that came back normal. My endo specialist had a GI surgeon standing by just in case. Luckily, the endo hadn't penetrated my bowels. They just didn't know what to expect until going in.
I think the colonoscopy will be the most revealing for you, as to whether or not the disease has fully penetrated through the intestinal wall. Don't stress too much at this point. The good news is that it is EXTREMELY rare to have intestinal involvement to the point of needing a resection.
Make sure your obgyn works with a team, including respected GI surgeons!
Thank you for the support. I know that my lesions have penetrated my bowels and just pray it is not as deep as they were last time in my hip muscles. But with the pain and bleeding I still have, I am really worried this time. The anal pain is getting unbearable at night. Just a few more days to go and hopefully we can fix this.
Hi - I'm in the same boat and have endo on sigmoid colon. Unfortunately, it's gone right through the bowel wall, but I've been ticking along for the last 10 years. The main issue for me is that the affected area has a stricture/narrowing, which causes discomfort with BMs. Not unbearable, but I'm always aware of pressure on my left side. Way back 10 years ago, my GE recommended we just leave things alone. They might not get any worse, so if I could live with the side effects, then that would be best. But he warned me to keep an eye on things and go back to him if things got worse, as the last thing we wanted was to have a blockage needing emergency surgery.
Well, things have got worse. A couple of weeks before Christmas I had an almost complete blockage. Could barely pass anything and taking stool softeners and laxatives just made things worse. The problem wasn't that my stools were too hard to pass... they just couldn't get through the stricture. It even hurt to pass gas. Fortunately, it eased off but prompted me to go back to my GE in January. CT colonography showed that stricture is indeed worse and I've also got cyst (endo?) on left ovary which has attached itself to the bowel.
Am booked in for surgery at the end of March with GE doing a bowel resection (reckons he only needs to take out 6") and gynae sorting out all the endo. All being done laparscopically - or at least that's the plan. I am pretty terrified about it, but know that it's never going to sort itself out on its own, and it's better not to risk emergency situation.
Oh... when I saw my gynae, he tried to do a smear test for me. My cervix has been pulled so far out of alignment that he just couldn't do it. Hurt like hell! Will get that done whilst I'm under GA.
I'm curious about the "anal pain" you refer to? I often get sharp stabbing pains up my rectum and, sometimes, in my vagina - like I'm being poked by a knitting needle. The pains only last a few seconds.
I'm new to these boards, and one week post colon resection and left ovary removal. Still waiting not the pathology, but looks like endo as my ovary was adhered to my colon in two places with a bonus cyst leaking into my pelvis. This was after 2 ct scans, a failed colonoscopy, barum enema, and pelvic ultrasound over many months. My main pain was during my cycle, which was the only clue it was not just a sigmoid issue.
They didn't know what they were going to find but fortunately I had a colon surgeon and ob/gyn going in and they did a great job. My advice is get multiple opinions and go with your gut! I actually had an ob/gyn tell me it couldn't be endo because I was not in enough pain. I think I need to send her a letter now that all is said and done- had I followed her advice I might have had surgery in a smaller hospital that was not equipped for the mess they found! I am waiting on the next steps, but in the meantime recovering from surgery slowly but surely.
Hi Vito - would love to hear about your resection experience, as I've got mine coming up at the end of March and am panicking. I'm also having GE/colorectal surgeon and gynae working together on me... and also have cyst of left ovary that's attached to the bowel, where there's already a stricture from the endo. Whilst not in crippling pain (except during period) I can feel the blockage and pulling on my left side all the time, so expect it's a bit of a mess in there. Saw my GE this week to run through exactly what his plan is. Says the most likely reason they'll have to switch from laparoscopy to open surgery is if the diseased area is too hard/solid to remove through small incision, but he thinks there's only 5-10% risk of ileostomy... though can never really know until he sees what's inside. How much/what part of your colon was removed? How's your recovery going?
They took 9 inches of my sigmoid colon, along with the left ovary. I had a cyst on it and the ovary was adhered to the colon in two places. It seems that the cyst was leaking into my pelvis and scar tissue was folding onto the colon from outside in. How do they know your cyst is stuck to to colon? They were not able to see that beforehand for me.
The surgery went well overall. I can give you as many details as you like, I found the advice helpful. I was in the hospital for 5 days, off the iv morphine in a couple days because I don't do well with narcotics. I am only 32 and in good shape, did a half marathon in Nov. And have been told I have a good pain tolerance. So far the recovery is good, I am just easily fatigued, soreness, and have cramping as my bowels get their act together. I have a history of IBS (diarhea-predominant) which they said will probably not be affected better or worse by the surgery. I am hoping for an improved cycle, since I had increasing pain each month (pretty excruciating last time). now I am waiting on the future direction to take with the endo, once they get the pathology back to confirm.
What have your symptoms been, and for how long? Ask any questions you like of me!
Hi V - They told me about cyst/colon adhesion from CT colongraphy results. I had a failed colonoscopy some 10 years ago (to look for reason for rectal bleeding during period). Bowel was so narrowed that they couldn't even get a paediatric scope up. I then had barium enema that showed up the narrowing and lap to clear away endo where they could. I guess my symptoms (apart from rectal bleeding) have snuck up on me over the years. When I was young, I had absolutely no pain during my periods... but gradually I started getting cramping... which got worse and worse (not every month, mind you), often leading to diarrhea and vomiting. Also, over time since my bowel stricture was diagnosed 10 years ago, I've found it more difficult to have a normal BM without manual intervention (sorry - TMI) and regularly feel sharp stabbing pains like knitting needles being poked up my rectum or vagina - which doesn't appear to be cyclical pain.
I'm the sort of person who just gets on with stuff most of the time, thinking it will get better on its own, so haven't really pursued medical intervention over the last 10 years. Last time I saw my previous gynae (about 6 years ago), as periods had got worse so I wondered whether another lap would be helpful, he said it was better not to, as the risks of creating further adhesions from surgery wasn't worth the risk. So I've been getting on with it... until I had a near total blockage before Christmas and thought it was time to get checked out again.
My GE has told me he expects to take out 6 inches of sigmoid, with the anastomosis at about 4 inches level in rectum - which I thought was quite low, but apparently it leaves more than enough rectum for normal function. He says I should regain control of BM within the 2 weeks post surgery... but I've got a nagging worry that this is optimistic.
How are your guts adjusting? You're a week post surgery now, right? Are you still being careful with what you eat? If you work, how long do you think you'll be off for?
Mine was a hand assist lap, I believe. I have a decent size incision which is a bit uncomfortable, but the abdominal swelling is more annoying than anything. They were able to take the colon and ovary all lap, but it all depends on what they find. I am 10 days post surgery, it was on 2/25. My bowels are settling down, BM's are a little uncomfortable- I feel a bit like it is that time of the month (cramping, not the extreme pain but the residual stuff a few days later). I have no restrictions for eating, but I have been taking it easy, avoiding major fiber (I generally can't digest salad & some raw veg anyway). They advise eating small meals with more frequent snacks, and I am downing lots of liquids to keep the colon happy!
I am back to eating probiotics including kefir (that has been a life saver for me for the IBS, it's like yogurt) and some Florastor (over the counter probiotic in pill form). I have heard it takes a while for the bowels to be back in order, but I am pleased so far. I am not running to the bathroom (it was more of an issue in the hospital but only for about a day) and each day gets better.
I am off of work currently, and since I have a pretty physical job (I work in a rehab and do transfers, exercise with patients, etc.) so I am probably keeping to the recommended 4 weeks off. I really don't want to risk it with the lifting restrictions (some say up to 6-8 weeks lifting precautions- that I simply can't do!!). Right now I can only take short walks outside before getting very fatigued, from what I have read from other folks the fatigue takes a while. I also don't do well with narcotics and still feel like the anesthesia is a bit of a ghost in my system. I am an avid outdoors person, runner, walker, etc so that is tough!
I can't believe you have had the stricture for that long- I had opinions with 2 different colon surgeons who said while it was not an emergency, it was best to take care of it before something major happened. Elective is always better than emergency surgery. I think it is good to be getting it taken care of- and while they are in there the gyn can look around for any other signs of trouble or endo. I was really busy tying things up at work and seeing friends before the surgery, so I didn't have too much time to freak out but I was pretty scared. It is okay to be scared, but know that you are doing what is best for you. The most important thing is to feel confident with your surgeons and go with your gut (no pun intended). Even though I had one ob-gyn saying it was simply a colon issue, my gut didn't agree and I was right to pursue it. And keep your sense of humor- my husband and I named my colon Vito after the Godfather movies and did a "farewell tour" for him, it was great!
One other thought- my pains were only really bad every other month, which made me wonder if it was only when the left ovary was "on". Not sure if it is similar for you.
Thanks for the great info and reassurance. Another question I have is did you get any of the shoulder pain from trapped air after the lap? When I had my previous lap I suffered REALLY badly with this. The thought of having this again, on top of all the other surgery pain is a scary prospect. But then again, a girl's gotta do what a girl's gotta do... and hopefully, being in hospital longer, they'll manage my pain better.
Not sure how 'rushing' to the loo with loose BM works out in first days post surgery. I'm expecting not to be moving anywhere very quickly, but know they like to get you up and moving around asap, to minimise DVT risks. I won't dwell on it. What will be, will be. The important thing is to get my ticking time-bomb removed.
Your theory about alternate ovulation could be right. I always thought ovaries alternated every month, but a quick search shows that it's not the case. One side can ovulate for two or three months running before the alternate side. I had three bad periods one after the other, but then the most recent was a doddle, so perhaps ovulation switched sides.
Regarding living with my stricture for so long... yeah, in hindsight, I probably should have had it sorted a while back. I just kind of thought, I'm not in too much regular pain and I can cope with all the side effects... but equally knew if things got worse I'd have to address it. I was told elective would be far better than wait for an emergency, which is why the near blockage in December was a massive wakeup call that it was time to get sorted out.
I do have every confidence in my surgeons. Very happy with my GE/colorectal surgeon and my new gynae (I just switched from the last one, who I'd never really liked). New gynae often works with the GE, so I'm reassured they make a good team. Both are good guys who take time to answer all questions and don't have that arrogance that so many consultants seem to have.
I did have some shoulder pain, but it wasnt too bad. My husband had it worse after his appendectomy. Mention it to everyone if its a concern- i was concerned about nausea and mentioned it to everyone from anesthesia to nursing and they managed it very well. It sounds like you are going into this well prepared and with good doc's on your team. My last advice- get some large comfy pants since you will be swollen in the middle! Post back with any q's and to update on your progress!
Hi Vito - how you getting on? Hope things are settling down well. I know every case is different, but I'm curious how long were you in hospital for and how soon did you start eating after surgery? Did you start off on liquids for a day or two? How's your gut tolerating food? What about the fatigue? Sorry.... SO many questions!
I was in the hospital for 5 days, my bowels took a little while to get moving (day 4). They want you to be passing gas before you can start eating, but I wasnt very gassy. The surgeon said I should "rattle the windows" but instead I had a BM. I am eating pretty well these days, I was surprised at how fast my bowels started feeling more normal. I had some uncomfortable gas when I first got home, but I found that going for a walk before or after meals helped. I still don't eat huge meals, but that's a good thing. Fatgue is not too bad, I think a lot of that was working out the anesthesia. I would get really fuzzy headed with activity, a very odd feeling but not bad now.
Right now I'm waiting for follow ups, hoping to come up with a plan for the endo since that was a new diagnosis. I am hoping to find a good MD to hold on to for a while since I am not sure what the future will bring.