First told Fibroids now have endo on bowel and stomach too

Hello all,

After months of severe abdominal and back pain off and on (lately more on than off), not able to eat because pain would be worse after a few bites so i have lost alot of weight and even at one point became malnutrition. Than alternate between diarrhea and constipation however each test came back normal. I was orginally scheduled for a hysterectomy on August 9th however with all my symptoms my new OB wanted to do a laproscopy which was done today. I was still recovering when the OB talked to my husband and the findings were severe endometriosis (i read their are stages however not sure what mine is), its in my bowel, intestine and stomach. I also had a ruptured cyst which she said because of it blood was leaking into stomach (this sounds bad, no?) . I also had a couple of 2cm fibroids (not sure if that is big or not). She said that everything was pretty much attached to other organs, especially the female parts and gave me some pictures as well.

I have an appt next week with her to see what to do next and she had recommended a total hysterectomy with also removing ovaries. I was ok with hysterectomy until now i may have to remove ovaries so worried about the whole menopause. I am already so depressed because have been dealing with this for about 6 mos and feeling like the doctors thought i was crazy or something. Although of course would rather be healthy and pain free.

I guess what my questions are is how is the endometriosis removed from the other organs like stomach, bowel and intestine. How did you feel after the hysterectomy with also removing ovaries? Did you gain weight and have mood swings? What is the best hormone replacement you have found.One of my ovaries with the ruptured cyst looks about 10 times bigger than the left one and she told my husband it for sure would need to go. The other ovary does have the fibroid and some endometriosis but maybe I could keep it? Was one ovary worth it? Did it come back? Plus what all does she need to do or than i need to request to check if it is all cancer free? I also read that the risk of cancer increases

Sorry for all the questions. I am 35 and of course none of my friends have gone through this (which I am thankful for) however I feel so alone right now. Even with all the support from my husband I just need females that understand more

I just found out I have severe endo. My question is what do they do for the endo on the bowels and stomach? I am leaning toward a hysterectomy just worried about the whole menopause thing. But have had issues since I was a teenager. Thanks for any advice u may have for me.

Ok, first off...so sorry for all you have been through. It totally stinks.

Secondly, do NOT let your regular ob-gyn do surgery without first consulting an endo specialist OR at least a gyn/oncology surgeon who can do more extensive, more detailed surgery.

Endo should be removed...not necessarily the female organs.

I had a complete hysterectomy a few years ago (well, almost complete, I insisted on having one ovary left). The gyn/onc surgeon noted the spot on my colon that was endo and said it would recur. You can read some of my posts here and read the whole story but it did indeed recur. At least once a month I would have obstructive symptoms that included waves of abdominal pain, repeated (sometimes 20 a day) painful bowel movements and then at some point a year ago the days got to be where I couldn't have a bowel movement, just the waves of pain and then vomiting. Finally we figured out the endometrioma was completely obstructing my colon on those days.

Long story short: what they do for endo on the bowels is either try to remove it (but this is tricky, not a lot of surgeons do this) and/or do a colon resection. Read my posts (I don't want to type it all out again).

My life now = amazing! Sex life is wonderful because I am no longer a slave to "that time of the month" and I no longer have the GI symptoms.

I have been readin more about endo specialist so is that what you ended up doing? Thanks for replying and so sorry for what you have went through. Glad u are better now.

I am waiting for my hyster (waiting for the scheduler to call). I did have surgery for endo last year. I also had it on my bowels, explained why my lower back was always hurting and why I was constantly in the bathroom. I would suggest finding and endo specialist. Mine is also doing my hyster. He took a laser and burnt off all of the spots that he found. Some spots can be so small that they can't find them and those can grow, I think mine did cuz the pain is back.

Please understand that just because you have endo doesn't mean that a hyster will cure it. From what I've read endo spots that aren't removed can grow even without estrogen. I read Endo for Dummies and it helped answer some questions for me on it.

Thank u. Yes I am learning that now. I am trying to find a specialist although here in my state I can't find one but willing to travel if need be. I have had issues for years and always told I had IBS. I had the Mirena IUD for years as well which seemed to help the endo because didn't have issues until I lost some weight and started having periods again. Hope everything goes well for u and thanks again

I had endo on my bowel and had surgery to remove it in May. I ended up having a bowel resection (eight inches of my colon was removed), as well as having one of my fallopian tubes removed. My surgery was done by a GYN surgeon and a colorectal surgeon, both of whom were experienced with endo. If you have to have endo removed from your colon I would suggest you consult with a CR surgeon. Even though my surgeon is excellent, it was not without complications. Despite the complications, I would still go through the surgery again because my pain and symptoms have disappeared and I feel like I have my life back.

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Originally Posted by crystalj08 Thank u. Yes I am learning that now. I am trying to find a specialist although here in my state I can't find one but willing to travel if need be. I have had issues for years and always told I had IBS. I had the Mirena IUD for years as well which seemed to help the endo because didn't have issues until I lost some weight and started having periods again. Hope everything goes well for u and thanks again

My symptoms also worsened when I started having periods again after several years of not having them. I was sure I had endo on my bowel, but my family doctor also suspected I might have IBS. He sent me for a bunch of GI tests to see what was going on. The mass on my bowel showed up on an MRI.

In retrospect, I had symptoms for years. They started getting worse (rectal bleeding during my period, painful BMs, etc) and eventually I had issues all the time. Had I not had the surgery I would have had issues with bowel obstruction.

Glad u all had surgery and hope doing well. When some of bowels is removed didn't that cause issues too?

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Originally Posted by crystalj08 Glad u all had surgery and hope doing well. When some of bowels is removed didn't that cause issues too?

The bowel resection is not a small surgery and there are possible complications. My surgery was a laparotomy (open surgery) and it takes several weeks to recover. My surgeon also told me that it can take up to a year to have normal bowel movements again. But, I hadn't had normal bowel movements for years prior to the surgery, not to mention I was passing mucous and blood during my period and was in a great deal of pain.


My initial surgery was easier than I thought. Pain wasn't too bad and I was out of the hospital in 4 days. The endo was low on my colon, close to my rectum, so I was told that a temp colostomy might be a possibility. I was happy when that didn't happen.

Unfortunately, I had complications and the join of my bowel developed a leak. A week after the first surgery I had to have a second surgery to repair the leak. This time I was in the hospital 11 days and now have a temp ileostomy. The ileostomy should be reversed within the next couple of months.

The surgeries/recovery were not easy. The ileostomy was something I feared but it hasn't been the end of the world. It's a temporary inconvenience that has allowed my bowel to heal. Even after everything I have been through I would still have the surgery again. None of it compares to the pain/symptoms that I had been living with.

I should also mention that the complications I had are very rare - less than 1% of patients. I was just one of the lucky ones