Post by GuestKarin on Mar 29, 2007 14:09:48 GMT -5
I am posting this message by request of erzulie, one of the moderators. She asked me to share my story.
I started experiencing symptoms of endo when I was 16, but I wasn't diagnosed until I was 28. During those 12 years, my symptoms slowly got worse, but as weird as it sounds, I didn't realize how bad it was because I was so used to it! I had severe lower back pain and nausea during my period, lower back pain w/bowel movements, rectal bleeding during my period, then rectal bleeding and stabbing pain w/bowel movements, sometimes even bloody globs in my stool. I also started having intense urges to have a bowel movement, but when I went to the bathroom - nothing! At one point, I was visiting the bathroom about 9 times a day due to these urges.
Throughout this time, I went to yearly check-ups w/my doctors, and when I mentioned my menstrual pain, they told me that some women just have more pain w/periods and that I should take birth control pills. I never mentioned the rectal bleeding because I was too embarrassed. Knowing what I know now, I want to go back in time and smack myself around for doing that, because rectal bleeding is a major symptom that I DEFINITELY should have shared with my doctors.
When I was 28, I got very sick - couldn't keep food or water down and couldn't have a bowel movement at all. I ended up in the hospital with a complete intestinal obstruction - not fun. Turned out that it was due to endometriosis - it had been growing on my large intestine all that time, adhering it to my uterus, and eventually the intestine was cinched closed.
A complete intestinal obstruction is very painful and very dangerous - you will die within days unless you have surgery. I had surgery and they removed about 6 inches of large instestine and gave me a colostomy. A colostomy is a procedure where they cut an opening in your abdomen, and then they cut your intestine and pull one end up through the hole, stitching it to the surface of your belly. Then, you wear a pouch over the intestinal opening, and the pouch catches all your poop as it comes out. Sorry to be graphic, but that's the truth as I lived it! After three months, I had another surgery to reverse the colostomy, so I am now (as my surgeon so eloquently stated it) "pooping out my butt" again.
So...words cannot express how much I wish I could have avoided all that - 2 major surgeries within 3 months, 3 months of having a colostomy, almost a month of being in the hospital, not to mention the pain of recovery and all the pain I went through for the 12 years before that!!! I didn't know I had endometriosis, but if I had shared ALL my symptoms w/my doctors, that could have helped them make a diagnosis sooner. If had been diagnosed sooner, I might have had surgery to remove the endo on my bowel BEFORE it caused an obstruction. Granted, it is fairly rare (probably less than 5% chance) for endo to cause a complete intestinal obstruction. However, endometriosis of the bowel is not rare - the intestine is the second most common place to find endo growths (the first is the fallopian tubes and ovaries). And bowel endo can certainly cause a lot of pain and problems well before it progresses to an obstruction.
I've since had a third surgery because endo growths obstructed my ureter (what is it with me and obstructions??) and caused hydronephrosis (swelling of my kidney) - also very painful and very dangerous. Thankfully, I didn't have any kidney damage, although it was a possibility.
So, all that to say that endo can cause some pretty gnarly problems! And, surgery today could save you a lot of pain and agony later. For sure, surgery is no picnic. However, depending on your symptoms, surgery might be a lot less painful than what you're going through right now! Plus, it might prevent future problems, whether with your intestine, kidneys, or your ability to have children.
I didn't share my story to scare you, because it is very unlikely that you would end up in the same situation I did. However, I do want other women w/endo to know that endo is a serious disease, and if you are having severe pain or symptoms such as rectal bleeding, don't ignore it. Talk to your doctor and do something about it - ignoring it just sets you up for more problems in the future.
I started experiencing symptoms of endo when I was 16, but I wasn't diagnosed until I was 28. During those 12 years, my symptoms slowly got worse, but as weird as it sounds, I didn't realize how bad it was because I was so used to it! I had severe lower back pain and nausea during my period, lower back pain w/bowel movements, rectal bleeding during my period, then rectal bleeding and stabbing pain w/bowel movements, sometimes even bloody globs in my stool. I also started having intense urges to have a bowel movement, but when I went to the bathroom - nothing! At one point, I was visiting the bathroom about 9 times a day due to these urges.
Throughout this time, I went to yearly check-ups w/my doctors, and when I mentioned my menstrual pain, they told me that some women just have more pain w/periods and that I should take birth control pills. I never mentioned the rectal bleeding because I was too embarrassed. Knowing what I know now, I want to go back in time and smack myself around for doing that, because rectal bleeding is a major symptom that I DEFINITELY should have shared with my doctors.
When I was 28, I got very sick - couldn't keep food or water down and couldn't have a bowel movement at all. I ended up in the hospital with a complete intestinal obstruction - not fun. Turned out that it was due to endometriosis - it had been growing on my large intestine all that time, adhering it to my uterus, and eventually the intestine was cinched closed.
A complete intestinal obstruction is very painful and very dangerous - you will die within days unless you have surgery. I had surgery and they removed about 6 inches of large instestine and gave me a colostomy. A colostomy is a procedure where they cut an opening in your abdomen, and then they cut your intestine and pull one end up through the hole, stitching it to the surface of your belly. Then, you wear a pouch over the intestinal opening, and the pouch catches all your poop as it comes out. Sorry to be graphic, but that's the truth as I lived it! After three months, I had another surgery to reverse the colostomy, so I am now (as my surgeon so eloquently stated it) "pooping out my butt" again.
So...words cannot express how much I wish I could have avoided all that - 2 major surgeries within 3 months, 3 months of having a colostomy, almost a month of being in the hospital, not to mention the pain of recovery and all the pain I went through for the 12 years before that!!! I didn't know I had endometriosis, but if I had shared ALL my symptoms w/my doctors, that could have helped them make a diagnosis sooner. If had been diagnosed sooner, I might have had surgery to remove the endo on my bowel BEFORE it caused an obstruction. Granted, it is fairly rare (probably less than 5% chance) for endo to cause a complete intestinal obstruction. However, endometriosis of the bowel is not rare - the intestine is the second most common place to find endo growths (the first is the fallopian tubes and ovaries). And bowel endo can certainly cause a lot of pain and problems well before it progresses to an obstruction.
I've since had a third surgery because endo growths obstructed my ureter (what is it with me and obstructions??) and caused hydronephrosis (swelling of my kidney) - also very painful and very dangerous. Thankfully, I didn't have any kidney damage, although it was a possibility.
So, all that to say that endo can cause some pretty gnarly problems! And, surgery today could save you a lot of pain and agony later. For sure, surgery is no picnic. However, depending on your symptoms, surgery might be a lot less painful than what you're going through right now! Plus, it might prevent future problems, whether with your intestine, kidneys, or your ability to have children.
I didn't share my story to scare you, because it is very unlikely that you would end up in the same situation I did. However, I do want other women w/endo to know that endo is a serious disease, and if you are having severe pain or symptoms such as rectal bleeding, don't ignore it. Talk to your doctor and do something about it - ignoring it just sets you up for more problems in the future.