Endometriosis Support Group
Endometriosis is a common medical condition where the tissue lining the uterus is found outside of the uterus, typically affecting other organs in the pelvis. The condition can lead to serious health problems, primarily pain and infertility. A major symptom of endometriosis is pain, mostly in the lower abdomen, lower back, and pelvic area.
Hi I am Candice,
I am in the process of being diagnosed with endometriosis stage 4.
For the past 5 or 6 months I have had severe pain while in the process of trying to pass a BM. I would rate the pain an 8. C-cestion pain was more tolerable.
I started by going to an urgent care place for the cramping. They took an x-ray and told me I was backed up. They said to take miralax and see if that helps. I started taking miralax and got everything out and then stopped the miralax. I felt like it was better but then my period came and the pain came back. I put myself back on the miralax and had a physical in the mean time. I tried taking myself off the mirilax but now the pain is there even when not on my period. I then went to the OB/GYN. He did internal exam and pap smear. He said everything seemed ok and that it sounded like constipation and to go to a GI doctor. I try to explain that I am not constipated. I go everyday but it hurts like crazy before it comes out. I cry and hit things it hurts so bad. I take miralax and ibuprofen to go to the bathroom without passing out!!
I made the appointment with a GI and kept trying to live without miralax. But a day or two off it after the pain would return. Three weeks ago I met with a GI. I told him my history. For a couple of years I have been having strange cramps in my rear area but I thought it was just my body changing. I guess over the past year it has gradually increased in severity with my period and now it is all the time. He seemed to think it was functional but said to have a colonoscopy just incase.
Three weeks ago I went in for a colonoscopy. I really thought they would send me home with no additional info and I would still be at a loss. When I woke from the colonoscopy my doctor said he could not perform the whole procedure. He could only get the scope 22cm into my body. He said there was thickening of the rectal wall. And my canal in that part is less than 4mm. He took a biopsy and ordered a CT scan ASAP and follow up soon after. I went back to him last week and he called a Laparoscopic surgeon that specializes in the colon. I met with him the next day. He looked over the colonoscopy and the ct scan and with experience feels that this is stage 4 endometriosis that is invading my lower colon upper rectal wall. He feels he needs to do a colon resection. Endometriosis is not his speciality so he wants to do a duel surgery with an endo specialist. The following day I met with one and he went over my file and my history and feels that there are signs that it is endometriosis. He did an internal exam and a rectal exam trying to feel for it in areas that he has seen it collect in this kind of situation. Ofcourse he said that he won't know for sure until they perform the laparoscopy.
I am having the surgery aug 13th. Has anybody here had a colon resection due to endo? Do you have any tips? What should i bring to hospital? What should I have stocked in my fridge for when I get home?
Thanks for taking the time to read:)
I am in the process of being diagnosed with endometriosis stage 4.
For the past 5 or 6 months I have had severe pain while in the process of trying to pass a BM. I would rate the pain an 8. C-cestion pain was more tolerable.
I started by going to an urgent care place for the cramping. They took an x-ray and told me I was backed up. They said to take miralax and see if that helps. I started taking miralax and got everything out and then stopped the miralax. I felt like it was better but then my period came and the pain came back. I put myself back on the miralax and had a physical in the mean time. I tried taking myself off the mirilax but now the pain is there even when not on my period. I then went to the OB/GYN. He did internal exam and pap smear. He said everything seemed ok and that it sounded like constipation and to go to a GI doctor. I try to explain that I am not constipated. I go everyday but it hurts like crazy before it comes out. I cry and hit things it hurts so bad. I take miralax and ibuprofen to go to the bathroom without passing out!!
I made the appointment with a GI and kept trying to live without miralax. But a day or two off it after the pain would return. Three weeks ago I met with a GI. I told him my history. For a couple of years I have been having strange cramps in my rear area but I thought it was just my body changing. I guess over the past year it has gradually increased in severity with my period and now it is all the time. He seemed to think it was functional but said to have a colonoscopy just incase.
Three weeks ago I went in for a colonoscopy. I really thought they would send me home with no additional info and I would still be at a loss. When I woke from the colonoscopy my doctor said he could not perform the whole procedure. He could only get the scope 22cm into my body. He said there was thickening of the rectal wall. And my canal in that part is less than 4mm. He took a biopsy and ordered a CT scan ASAP and follow up soon after. I went back to him last week and he called a Laparoscopic surgeon that specializes in the colon. I met with him the next day. He looked over the colonoscopy and the ct scan and with experience feels that this is stage 4 endometriosis that is invading my lower colon upper rectal wall. He feels he needs to do a colon resection. Endometriosis is not his speciality so he wants to do a duel surgery with an endo specialist. The following day I met with one and he went over my file and my history and feels that there are signs that it is endometriosis. He did an internal exam and a rectal exam trying to feel for it in areas that he has seen it collect in this kind of situation. Ofcourse he said that he won't know for sure until they perform the laparoscopy.
I am having the surgery aug 13th. Has anybody here had a colon resection due to endo? Do you have any tips? What should i bring to hospital? What should I have stocked in my fridge for when I get home?
Thanks for taking the time to read:)
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Cand...It sounds like you've been through so much. I,too had (have) stage 4 and it was AGGRESSIVE. Unfortunately, I was not diagnosed until it had done tremendous damage to my abdominal cavity. I had 2 botched laps before an open abdomen Hyst/Ovary removal. Is your surgery on the 13th diagnostic or what is the plan? It sounds like you will have GI surgeon and Endo surgeon working together to do whatever is necessary. Do you trust them and their ability? I ask because I'm devoid of trust when it comes to "specialists". However if you have confidence in them to "do the right thing", then proceed with caution. Do you plan to have your uterus and ovaries removed? Please INSIST the endometriosis be EXCISED rather than ablation
As for post-surgery...You'll definitely need a tummy pillow and your pain meds to stay on top of post op pain. You'll need GasX meltaways for gas in your chest, shoulders, and tummy. Most importantly you will need some food that are easy to digest (yogurt, hummus, soups, even creamed potatoes). Make sure you are not alone for the first week. Good preparation for any surgery makes for a better outcome. So, plan for these suggestions and anything else that will bring you comfort and help you to pamper yourself post-op.
Meanwhile...keep your post bumped for others to chime in. They will have some good advice for you. I'm sending HUGS of support to you!
~~Pup
I hope all goes well! We are here for you!
I do trust my specialists. My GI surgeon is very knowledgeable and has a great bedside manner. His nurses have been great. They have been able to answer all my concerns. My endo specialist is very technical and a little difficult to communicate with. But this is what he does. My GI surgeon has done multiple surgeries with him and all the women have been happy with the outcome.
I have a 5 year old and we live a 4 hours from family and close friends. My father is coming to help for a week and my best friend has offered to take my son for as long as I need.
I feel like since there is no positive way until the surgery to see the extent of what is going on it has been difficult to plan the recovery. I like to be the strong one. I can do all by myself or at least I think haha.
I wish you the best and am glad you have doctors you trust getting this taken care of ASAP.
There have been some good suggestions posted thus far, but I emphasize the essentials I mentioned in my previous post. Plan for the worst, but hope for the best. I won't lie...This will be a rough surgery, but relief from unbearable pain is on the horizon for you. I will stress the need to keep your tummy happy post op(nausea/constipation) and stay AHEAD of your pain with meds. Don't try to "white-knuckle" the pain...Eat before medicating. Plan to get plenty of rest and FAR BETTER HEALTH ahead of you.
I'm so happy you have a good team of surgeons. Don't hesitate to ask them questions before your procedure on Wednesday. Take care and keep us posted.
HUGS~~Pup
I have 4th stage Endo with bowl complications as well. When they did a exploritory surgery 2 years ago to see why I was screaming in pain what they found was so bad they had to close me back up. I as well waited for5 months for a GI Dr, General surgeon and 2 other well known Endo specialist. The surgery was 7 hours long and I was told I would wake up to a temp. colostomy bag. That alone is devastating!!! They were able to remove a 12cm cyst of my colon and cut out some bowl. They found that Endo had glued my bowl to my pelvic wall and that Endo had eaten through all my bladder lining. They also had to remove areas of my bowl that were collapsed and narrowed by the Endo. When I woke up my dr's were standing around me commenting on how I was the worse case they had ever seen. But they had preformed a miracle. I woke up with no bag!!! They were able to stretch my bowl and stitch it together. Even though they couldnt get some of the endo that was narrowing my bowl out , I was grateful. The bowl is very durable and can regenerate and reform itself when it heals.
My advise to you is after your surgery it will be as if you had a c-section. I was not able to walk up stairs, so make sure you have what u need downstairs. Plus a comfy place to sleep with a body pillow. You do not want to over do it at all becasue you will create scar tissue. The medications that worked best for me and still do are Vaginal Diazapam to relax muscles and Lidocain rectal cream.
I wish my story ended their but it doesnt. Since then I have had more off my colon collapse and narrowed by the never ending destruction from the Endo. I take 5 caps of miralax a day, mineral oil, stool softeners and am not able to use the bathroom with out a enima and a lot of screaming!! But I have faith and again I am going through GI tests and another surgery. The only thing that gets me through is FAITH. Dont let negativity or bad thoughts surround you, hit the delete button on them. I hope you have family and friends that are a good support to you. Someone will need to be helping you for @ least 3-5 days after. If you can make extra meals to freeze that would help as well. Good luck and I hope you have a miracle and your battle will be over!!
~~Pup
HUGS~~Pup