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    Old 11-02-2003, 06:55 PM   #1
    ryanandmaran
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    Endometriosis

    I recently went to see my doctor about several episodes of severe pain I've been having, and he referred me to a gynecologist to see if I have endometriosis, but my appointment isn't until next week.

    I've been doing some research on endometriosis, but it's not very specific on what the pain is like, and I want to know if that is what is going on with me.

    My pain is pretty awful, and it has happened once a month, since May. It usually comes either right before, during, or right after my period, and begins with a burning, searing pain while I am having a bowel movement. I also get clammy, feverish, and nauseated. This kind of pain lasts about an hour or two, and then is replaced by a tight, cramping pain around my belly button area, which is so bad I usually can't even stand up straight. My abdomen / pelvic area is also very tender to the touch. After about 2 or 3 days, the pain is completely gone, and I am fine again for another month.

    I realize endometriosis affects everyone differently, but I'm just wondering if anyone has endometriosis, and if you can share with me how it affects you, what are your symptoms, etc...

    Thanks

     
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    Old 11-03-2003, 12:24 AM   #2
    nvu_nvr
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    I have Stage 4 endo, which is very severe. I had the pain you describe but 24/7. I am now on meds to stay pain free. Your gyno will probably do a laparoscopy to see if you have it or not. The pain associated with endo is often called "stitch-like" at times with the searing pain. Endo can cause bowel problems too. I'm no doctor but it sounds to me like endo could be your problem. If so, there are a variety of options available to try to make you as comfortable as possible. Good luck and keep us posted!

     
    Old 11-03-2003, 10:20 AM   #3
    Karla
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    I had endo for years. I just lived with it for many of those years. I had a lap done to diagnose it a couple of times. The pain is burning, sharp, crampy feeling in the abdomen. It is possible to have endometrial tissue found on your bowels. This may explain why you are having painful bowel movements. My endo was sever enough they recomended a hysterectomy to me at age 18. I didn't have it done tho until I was 34. I also did lupron for 6 months which I thought was a waste of time and it put 50 pounds on me. There are many options on how to deal with endo. The first step is finding a good and knowlegable gyno. Sounds like you are headed in that direction. Good luck.

     
    Old 11-04-2003, 03:28 AM   #4
    ryanandmaran
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    Thank you both for your responses.

    Based on what you've said, it seems endometriosis is probably what I have.

    I'll know more in about a week, but it's good to at least know what's going on with my body. It's awful to all of a sudden be sick and not know what is causing it!

     
    Old 11-04-2003, 03:00 PM   #5
    Pootsi
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    I could have sworn I replied to this before, but it must of been on another sight.

    I have endometriosis, and I had the really bad cramps early on in my teen years. They were so bad I'd feel like passing out from it, and SO heavy. At the time, I thought it was normal.

    So it wasn't until recently, Im in my late 30's now, that I started having really super long periods, including mid cycle bleeding. Went in to get checked and they found a large cyst during an ultra sound (1st ultra sd).

    I had to have a lapariscope done, where they go in with a tool through my belly button to look inside. It was a classic "choc." cyst due to endometriosis, which can form after years and years of having endo. They had to remove it and the ovary with major surgery cuz it was engulped around the ovary and implanted onto my sigmoid colon causing it to narrow. Which explained all the constipation I've been having. They also found that it had caused a lot of scarring inside, including messing up the flower on my fallopian tube that I had left, they had to take the other one with the ovary. So that explained why Im not fertile. But after surgery, I felt so much better, my eyes even cleared up, I thought I just had dry eyes. It's sneaky stuff!

    Most of the time pain before, during and after your period is a sign, and during sex sometimes. Also, with bowel movements during that time of the month. Very heavy long periods. Fatigue. Bleeding from your #2 area during bowel movements around that time of the month should be checked, it may mean endo inside the colon.

    Usually what they'll do is look with a lap, and they may take out what they see from there if you have it. Then they may prescribe you some kind of hormonal med, or b.c. to balance your hormones out and help with pain.

    As long as you have estrogen, that's what makes endo grow. You aught to make sure you have a doctor that really knows about endo and how to remove it right.

     
    Old 11-04-2003, 03:23 PM   #6
    Pootsi
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    Oh, I did answer your post before

    It really sounds like you may have endo. on your bowels. I know Im not a doc., I guess it's just from reading a lot of the same syptoms from the endo board I use to go on.

    I no longer suffer from any endo symptoms, and I do get paranoid about getting it back, so Im always aware of anything unusual. After it snuck up on me the way it did, I like to get an ultra sound just to see how my one and only ovary looks, I know it's not effecient since a lap is needed to really make sure, but have to have some reason to have it done not just paranoia.

    I think my doctor did a good job getting everything out. He was actually a Gyn/Oncologist, but with endo experience. I did a bunch of research on him for cancer, but luckily he also had quite a bit of experience for endo. At the time, I wasn't sure what type of cyst it was, it could of been cancerous, TG it wasn't!

     
    Old 11-04-2003, 03:54 PM   #7
    ryanandmaran
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    Sorry to confuse you--I posted the same message on both the Women's Health board and the Infertility board.

    But thanks for your response, and for all the info on what your experience with endometriosis has been. Have you been able to have kids, ever?

    Until you said something, I had no idea that estrogen encouraged the growth of endometriosis. Do you know if there are things I can do to decrease my estrogen levels? Like, things I can/can't eat, etc...Is that even possible?

     
    Old 11-04-2003, 08:06 PM   #8
    Pootsi
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    Although I believe I had endo since a teen, at age 20 I did get pregnant and had a baby. But, was not able to get pregnant since, Im 39.
    I think you are on the right track right now by continuing with your appointment, and making sure they give you a lap. If you have endo, and you go ahead and have surgery to remove it. The best time to try to get pregnant is within the first 7-8 mths after surgery.

     
    Old 11-04-2003, 09:24 PM   #9
    Karla
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    I had gotten pregnant with twins after 2 months of trying. I was diagnosed with endo 6 months after I delievered. It was bad enough that the dr recomended a complete hysterectomy. I did nothing about the endo but wait. I got pregnant after trying for one month a couple of years latter. I don't think endometriosis always is determental to getting pregnant. I know it wasn't in my case.

     
    Old 11-05-2003, 01:11 AM   #10
    ktee_uk
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    Hi
    I am due to have laparoscomy next week. Doc wants to investigate the cause of my pain and heavy periods. He suggests that endo might be the cause and that he may be able to clear some of it away during the procedure too.

    I am only pain/discomfort free for about 7 days out of my cycle. Severe pain starts over my left ovary and is a cramping pain. This spreads across to the right and I also get severe back ache. I have 2 really really bad pain days where the centre of pain is pubic area and spreads up to my naval and down to my knees. I sometimes faint, legs go to jelly, sickness and diarhea. I am off my feet for 2 days.

    I have always had painfull periods but it has got v.bad over last 3 years. I am now 39 and childless.

    I hope the doc gets me sorted out because it makes me feel so miserable.

    Good luck
    Ktee

     
    Old 11-05-2003, 06:38 AM   #11
    Pootsi
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    When I was in the endo board there were a lot of descriptions that sounded like your also. With the pain down the legs and weakness. Pain all the time and IBS is very common.

    The most important thing is to make sure you have a doctor that really KNOWS how to remove endo (all of it) with excision type surgery. If any is left behind, it grows back (then the pain comes back, and back to surgery again 6 mths later), that's why you hear about woman having surgery over and over.
    There are surgeons out there that know how to remove it thoroughly. And excision surgery is usually their precedure cuz its removed all the way to the bottom instead of with laser where the surface is only removed.
    There are specialist out there on endo. Or reproductive specialist with lots of endo experience.
    Do your homework on the doctor and endo. before going further. Some doctors push hysterectomy on woman pretty fast, especially when it comes to endo., cuz they don't know how to get rid of it right, when it comes back it looks bad, also when the endo is on the colon and other places, it needs to be removed.

     
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