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Post by momtomeg on Oct 2, 2006 9:49:09 GMT -5
My daugher was diagnosed through a lap with endo last March--even though they didn't find much of any endo--and the doctor said she wished all her patients insides looked as good! The doctors still says she has endo. For two months after the surger she was pain free--even though all they did in the surgery was take a look--then slowly the pain returned. Now it is constant. The pain is lower right pelvic--even with her hips. She feels nauseated and the pain increases when she eats. Sometimes she describes it as a burning or stinging pain. They gyno wants her to have a colonoscopy and if that is clear (which she believes it will be) then she wants to start her on Lupron. I don't want my daughter treated with a hormone particulary if she doesn't even have endo. Maybe this is IBS??
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Post by ouchy on Oct 2, 2006 22:58:04 GMT -5
Hi, momtomeg. Even if they find a little endometriosis--it's STILL endometriosis. It may be MILD endometriosis, but it's unfortunately STILL endometriosis. It is kind of sad that they looked at the endo and stitched her back up without ablading or anything what they did see, because each month the implants will swell w/ her hormones and break down and bleed...and they WILL get bigger w/ time.
I think you have another thread asking much the same question. I will delete the other thread and add it to this one, because I replied to your other thread the other day.
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Post by ouchy on Oct 2, 2006 23:11:20 GMT -5
Here was your complete post from the other day... "Another mom trying to help daughter « Thread Started on Sept 28, 2006, 6:47pm » Hi: I am the mother of an 18 year old daughter who was diagnosed with endo 6 months ago through a laprascopy. I am leery of her diagnosis since the doctor claims she didn't really see any endo but only a window in the peritoneum wall? For about a month after the surgery she was pain free--then the pain started back again periodically. Now it is constant. Daily pain, lower left pain, bloating, constipation. She is a senior in high school taking college courses, is on the dance team as well as taking ballet and jazz classes and teaches a recreation department dance class to small children. The past two weeks, she drags herself to class--as much as possible, does her homework and that is it. She doesn't see her friends, and seems to have no interest in anything. Homecoming is this week and she could care less. She went back the gynecologist last week and they did an ultrasound which was normal. Last winter before the lap, she had multiple ultrasounds, an MRI and a CT scan--all normal. Now they want to do a colonoscopy and if that is normal try Lupron. The gynecologist is pretty sure the colonoscopy will be normal--so I don't understand why she should have to go through that test. Any help or suggestions would be appreciated--I want to help her, but it seems we just keep getting sent from one test to another test." _________________________________________ My reply to you that day: Hi, Paula. Welcome to the forum! I don't really know what the doc. meant by "only a window in the peritoneum wall." The peritoneum is the tissue that lines the abdominal cavity, so I'm guessing that the doc. is referring to "only a window in the lining of the abdominal wall"--which still doesn't explain what "window" means.... I'm confused. I had a sigmoidoscopy (socpe of the sigmoid colon, not nearly as high up as a colonoscopy)--after a laparoscopy in which endo was burned which was adhering my sigmoid colon to my peritoneum (abdominal wall tissues). If I would have had a family history of cancer, my gastrointerologist would have gone all the way up w/ a colonoscopy, but deemed that was not necessary after my intake. Lupron is something that you will have to think VERY carefully about! Here are a couple links to threads started on Lupron. 1) cjlevett.proboards33.com/index.cgi?board=drug&action=display&thread=11492131472) cjlevett.proboards33.com/index.cgi?board=drug&action=display&thread=11515525163) cjlevett.proboards33.com/index.cgi?board=drug&action=display&thread=1155718029(A lot of duplicate threads were started, because people didn't read the threads that were already started, entitled "Lupron"--and we have no way to combine the threads, so that is why I gave you several different links, and you may even find more threads on it!) You might start firing questions at the gastrointerologist who is to perform the colonoscopy...she may very well not need it! Also, think about the Lupron. I have never been on it, but from the stories I have heard...only a couple have loved it--the rest HATED it w/ a passion! It also causes bone loss--something not too good for an 18-year-old! Well, let us know what happens and how everything goes. If your daughter wants to join the forum, we have a "Just for Teens" forum, and we now have a couple teen members here! Good luck! ~Ouchy
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Post by ouchy on Oct 3, 2006 9:12:56 GMT -5
I'm confused now...in this thread you say that, "they didn't find much of any endo." In the first thread you wrote, "didn't really see any endo but only a window in the peritoneum wall."
--Did the doc see any endo at all??? IF the doc did see endo, ANY endo is endo.
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Post by vatechgrad on Oct 3, 2006 15:15:26 GMT -5
A colonoscopy really isn't a big deal and it will help rule out a ton of things. Even if you were certain she had endo she could still have something else so colonoscopy isn't a bad idea. The prep isn't fun, but it really not painful, most people (including myself) actually fall asleep for the whole thing.
As for the other question, did you question her dr, ask for pictures, ask her why its endo if she didn't see any, she should tell you all this to give you more certainty in whats going on.
Good Luck!
Janet
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Post by ouchy on Oct 3, 2006 19:43:58 GMT -5
A colonoscopy is usually used to detect tumors/cancerous growths, polyps, bleeding, ulcers, etc. I guess the gastrointerologist could also see any endo which may have infiltrated the innermost lining of the colon. ...So if any of those conditions are detected, I guess the colonoscopy would make sense... but you might double check if it is really necessary.
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Post by vatechgrad on Oct 4, 2006 8:40:40 GMT -5
For clarity, Ouchy is right. I didn't have my colonoscopy for endo reasons, I had it to rule out cancer, diverticulitis, etc. Conditions that could be causing my pain and issues. I didn't have any of those and then I had my lap and found out it was endo. I am just of the belief thats its better to be sure. For instance the last 6 to 8 weeks I've been having alot of lower back pain. I stopped and asked myself why I assume everything wrong with me is endo. I went to dr and sure enough I've had a kidney infection for some time. I just don't think we should assume that every pain is endo related, it never hurts to rule out other issues.
Janet
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Post by momtomeg on Oct 4, 2006 9:03:18 GMT -5
Thanks for your advice/help. It is so hard when you child is in pain--you just want to find an answer an fix it. Meghan had every test you can think of last winter--finally they decided to check for endo. I can't remember the doctor's exact words, but I know she only found very small amounts (or not much) endo--not enough to laser or remove. The doctor did claim that a small amount of endo can cause a large amount of pain. The weird thing is that even though they didn't do anything surgically other than take a look, Meghan was pain free for most of 6 months. I'm think I'm the one who put the idea of a colonoscopy in the doctors head--my father had ulcertive colitis and I have irritable bowel--the doctor wanted to start Meghan on Lupron two weeks ago. Meghan didn't want to be treated with Lupron when she felt that the doctor wasn't 100% sure it was endo. I know having a colonoscopy isn't bad--but Meghan had a bowel prep the night before her laproscopy surgery and ended up in the ER when she couldn't stop vomiting--I'm not looking forward to going through that with her again. Sorry to go on and on--but like I said, when it is your child in pain--it is almost worse than having the pain yourself.
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Post by ouchy on Oct 4, 2006 9:19:22 GMT -5
Re: is it really endo? You might take a copy of the operative report to a gynecologist who is a little more experienced dealing w/ endo for a second opinion. I have a feeling that if any endo at all would have been seen that most experienced, thorough docs who specialize in treating endometriosis would have tried their best or at least given the implants careful consideration to remove whatever endo they found--no matter how few or how tiny the implants were. There is a possibility that the implants couldn't have been lasered away, depending on the location of the implants/skill of the surgeon. However, telling you that there just wasn't enough to laser or remove is not a good answer, just my opinion. Any endo is endo. Actually, you might want to read the op. report yourself.
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Post by mezmerized on Oct 9, 2006 22:46:01 GMT -5
hi there As you posted as a question at the end of your posr could it be IBS... well I have severe endo and also IBS syndrome. I get the same pains with my stomach alot when I eat so that is an option for her DR to look at. You could also have her try meta mucil or even if she likes yougurt have her try activia it is very good made by Dannon and it tastes just like yougurt. It is worth a try if anything it would help her stomach pains that is what I took for the IBS and it worked wonders Hope this helps good luck
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Post by mariewynn on Oct 15, 2006 4:09:16 GMT -5
I agree that a colonoscopy isn't a bad idea. I have one scheduled for this friday to rule anything else out before I have another lap. And yea any endo is endo. I have stage one endo and the pain is excruciating. The amount of endo you have has nothing to do with the amount of pain you are in, which is one of the most baffling things about this disease to me. My doc said he has opened women up for other reasons, women who have no symptoms and no pain, and found them covered in endo. That's why I want to rule anything else out, to make sure it's not something else causing the pain and not the endo since with endo you can have no symptoms (if you're lucky). Good luck with everything and I hope she feels better soon.
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