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Thread: Endometriosis anyone?

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    Senior Member Underestimated's Avatar
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    Endometriosis anyone?

    I've posted on a couple sites, but decided, 'hey, why not ask my colleagues?' I read somewhere that something like 1 in 10 women have this. So...
    How many of you, if any, have this? And, for those of you who do, what relief, if any, have you gotten? Medication? Surgical procedures?
    I had my first surgery for this in Feb, now 6 months later, I feel fucked. What pisses me off isn't that it causes pain or that I can't have kids. What pisses me off is that I have terrible hormonal swings, and that doctors shrug it off. Any advice will help. I'm sort of losing my mind with this. At the same time, I'm trying to work and pretend I don't have messed up plumbing. "Yes, if my vagina could talk, Sir, it would tell you it feels great today!"

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    Default Re: Endometriosis anyone?

    Wewt...I have it. Not to celebrate but its nice to see someone else!! I just had surgery about 3 weeks ago for the 2nd time. The first when I was 16. Hmmm yes the hormonal changes are whacked out. I am a complete bitch one minute and a mess the next...
    So far I haven't had any major pain....there's still all of the lovely discharge and fun stuff but I've only had a few cramps. I've been on BC for the last 4 years and I don't think its helped at all, but I'm on the strongest estrogen pill so maybe that is another reason why I am crazed. Not fun.... doctors really don't seem to know what to do about it. They say, if it comes back just get another surgery. It's just fucked.

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    Default Re: Endometriosis anyone?

    My mom has this. She started getting a wacky period after her second pregnancy though. She'd literally get it for 2-3 weeks at a time and then it would come back a week later. They tried to stabilize it with birth control pills, but it never really was normal. I *think* she was also on a mood stabilizer for a while. Well, two kids later (about 8 years), she ended up having to get a partial hysterectomy. The shit basically hit the fan when she had her period for about 2 weeks and she was doing a presentation at work, she just put a tampon in and used an over-nite pad....and wouldn't you know, she was bleeding so heavy that is was going down her leg. She ran out and drove herself to the hospital, bleeding all over the place and they did the surgery the next day. She was 38 or 39 at the time. About 3 years have passed and she is fine. Since it was just a partial, she is not on any hormone pills or anything like that. I've voiced some concerns to my doctor and they don't seem to think it's a big deal, although they've told me it can be hereditary. (that's a big deal to me! But luckily, so far, so good)

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    Default Re: Endometriosis anyone?

    my sister has it. she's 30. i havn't talked to her in six years. she doesn't want anything to do with the family. last time we talked she was considering a histerectomy, but i don't know if she ever got it. she had long periods with extremely heavy flow. she had severe depression, and she was always an emotional wreck. it's a terrrible disease. she went through so many doctors because they always said the same thing: "it's all in your head" i've heard that it skips a generation so if your mother has it you wont but your daughter will. but i don't know for sure. check out webmd i think it's .com, not sure, ask google. maybe you can get some info on it and some possible solutions. good luck this disease is so serious yet nobody talks about it!

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    Default Re: Endometriosis anyone?

    i have heard how common it is, my cousin had it and she apparantley detected it early and had surgery and now feels fine.

    just wondering what are the main symptoms, or any you experienced, is it worth getting checked out for it even without symptoms? considering its seems to be getting more common i guess

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    Default Re: Endometriosis anyone?

    Some women get symptoms, others barely do.

    Here's some info...

    The symptoms I got were almost textbook...I had my period for like a month at a time before they put me on a REALLY strong hormone pill and now I haven't had it for 6 months. I had constant abdominal pain and discomfort resulting from the scarring and adhesions that turned out to be on my ovaries, uterus, fallopian tubes and *yay* bowel and bladder. I've had hardcore bloating because whenever I ate, I'd react to it somehow so I am glad I can finally eat some of my favorites again, and also that I DO still have a chance at having kids someday!

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    Default Re: Endometriosis anyone?

    i have a question about it... will it hinder my ability to have children? Im going for an ultrasound to see if i have it in 2 weeks, since my wonderful time of the month is 3 and a half weeks late right now, and the tests say im not pg... so is it fixable???


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    Default Re: Endometriosis anyone?

    Ya.....you still have a chance at having kids. Usually if it is just mild or moderate, you have a 60-70% chance of an easy pregnancy. If it is severe, usually you have only about a 35% chance. But, you never know! And if you do have it, all you do is have a little surgery that takes like a week to recover, change your diet and voila....you usually feel pretty good after that.

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    Default Re: Endometriosis anyone?

    i have that too, had my surgery @ 18. Things were pretty good up until a few months ago when i started getting really bad cramps and long heavy periods. I had some crazy mood swings too, not sure if it was from the bc i'm on or if it's the endo. i was told that I wouldn't be able to have children but a year ago i became pregnant. The only problem i had was that i had to choose between my life or the baby's life b/c the doctors said that one of us wouldn't make it to term.

    but as long as you don't have a really severe case of endo, you should be fine
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    Default Re: Endometriosis anyone?

    Symptoms of Endo include:
    Pain before and during periods
    Pain with intercourse
    General, chronic pelvic pain throughout the month
    Low back pain
    Heavy and/or irregular periods
    Painful bowel movements, especially during menstruation
    Painful urination during menstruation
    Fatigue
    Infertility
    Constipation or diarrhea
    Headache
    Low grade fevers
    Hypoglycemia
    Anxiety
    Depression
    Susceptibility to infections, allergies

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    Default Re: Endometriosis anyone?

    I want to thank you all for replying. It takes an amazing weight off my shoulders to know that this DOES happen to other people...
    I had surgery in Feb for something else, and they found Endo. I had pain throughout the month on my lower right side, and that's back. I always felt 'crazy' almost manic, that's back also. My periods are becoming worse each month, I'm taking longer periods off of work to deal with it. It's beginning to hurt when I eat. Last time, I dropped 35lbs in one month because I stopped eating all together. I freaked out last week and called the headquarters of the National Association for Endometriosis. They said everything I was feeling was 'normal.' This comes as a shock since they told me I was 'cured' in Feb. According to the NAE, there can be microscopic implants of Endo. I guess they didn't get it all since I'm showing the same symptoms 6 months later. I was told I could never have kids when I was 14. To get off birth control, since it makes me sick and nuts, I had my tubes tied in Feb since I'd be under anyway. It sucks they'll be putting me back on BC. It amazes me, the more I network with this, the more I find out how little the medical profession knows. The NAE also told me, a hysterectomy isn't a cure, as implants can still remain. S-w-e-e-t. (My poor boyfriend)
    Sorry for venting a little. It's just so nice to be able to relate to others.

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    Default Re: Endometriosis anyone?

    Hey, I have endometriosis. I was diagnosed with it when I was 16. I had my first (and so far only) surgery 2 days before my 17th birthday.

    Underestimated: I need for you to see a specialist who specializes in the treatment of endometriosis. That why they will give the top of the line treatment that a general doctor just may not know about...or care for that matter.

    After your surgery, what meds did your doctor put you on? My doctor put me on Depo-Lupron. So here I was...17yrs old..experiencing hot flashes. At least I know what to expect later on in life *smiles*

    If you'd like, you can PM me, and we can talk about it more. If anyone has questions, I'm free to answer. I will keep my eye on this forum thread.

    Stay strong ladies,
    CK







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    Default Re: Endometriosis anyone?

    The closest Endo specialist is 1 1/2 hours away. I have an appointment with my gyno on the 9th, though I'm skeptical since all he said after surgery was "If it comes back, you'll have pain." Not, "You'll act like a lunatic." Oh, and never told me about the Endo diet. I called his nurse in tears, and she was little help. He didn't put me on anything. Just told me to come back if I experience pain. The nurse said I'd leave on BC. Basically, I'm going to get a whole bunch of tests done, then I'll travel with the results. Might as well rule out cancer, right? My GP gave me a green flag for taking Xanax during this ordeal. So that's good. Still no pain meds though. GRRR!
    Thank you everyone for being so supportive!

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    Default Re: Endometriosis anyone?

    Quote Originally Posted by Underestimated
    The closest Endo specialist is 1 1/2 hours away. I have an appointment with my gyno on the 9th, though I'm skeptical since all he said after surgery was "If it comes back, you'll have pain." Not, "You'll act like a lunatic." Oh, and never told me about the Endo diet. I called his nurse in tears, and she was little help. He didn't put me on anything. Just told me to come back if I experience pain. The nurse said I'd leave on BC. Basically, I'm going to get a whole bunch of tests done, then I'll travel with the results. Might as well rule out cancer, right? My GP gave me a green flag for taking Xanax during this ordeal. So that's good. Still no pain meds though. GRRR!
    Thank you everyone for being so supportive!
    What part of TX are you in? I will do a search for you, because you need to see someone who is DEDICATING their practice to helping the treatment/finding a cure for this disease. From what you've been saying so far about your doctor and his nurses...they aren't rubbing me the right way. I know 1 1/2hr is a great deal away, but it would be so much more WORTH IT.







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    Default Re: Endometriosis anyone?

    hey this might sound like a dumb question but since we have endo does that put us at more risk for ovarian cancer?

    just wondering b/c it runs in my family and so does endo
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    Default Re: Endometriosis anyone?

    I'm pretty sure that it's not that heightened of a risk......it is a POSSIBILITY, but not everyone who has endometriosis gets cancer. Usually, if you are put on a hormone or birth control, it actually lessens the risk of uterine and ovarian cancer.

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    Default Re: Endometriosis anyone?

    thanks I felt so dumb asking that question.
    There's a wild side behind every innocent face.

    End violence against women.
    I support Dottie.


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    Default Re: Endometriosis anyone?

    LOL no thats OK, I have just been schooled well in the last 4 years haha.

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    Default Re: Endometriosis anyone?

    I live in north Austin, TX. The closest endo specialist is in south San Antonio. Has anyone tried an endocrinologist? I'm not diabetic, but I do have hormone problems? Would that be a better shot?

    Sometimes, in people with endo, the symptoms mimic those of ovarian cancer. They can also mimic ovarian cysts, ectopic pregnancy, pelvic inflammatory disease, irritable bowel syndrome, fibroid tumors, colon cancer, and appendicitis.
    I read somewhere that endo patients are more susceptible to breast cancer, though. Anyone else hear about this?

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    Default Re: Endometriosis anyone?

    Hey I just did a search. It looks like their is a meetup group (kinda like a forum) for other women in the Austin, TX who have endometriosis. I know this isn't exactly what you were looking for. But I still hope that the much more closer support can be of some help. Who knows, maybe you could network, and find out who their OB/GYN is.

    http://endometriosis.meetup.com/21/members/1972443/







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    Default Re: Endometriosis anyone?

    you know, maybe i've got it all wrong, but you can't turn on the tv without seeing an ad for some kind of errectile dissfunction meds. maybe if endo was a disease affecting men, people would get on it.

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    Default Re: Endometriosis anyone?

    I'm resurrecting this thread...
    I have a bunch of blood tests on Monday in addition to an ultra sound. My doctor tells me I'm in the latter of stage 3 endometriosis. So much so, he said hormone therapy wouldn't help, it would probably worsen my condition. I went in thinking I'd get birth-control. I came out with another script for vicodin, 2 in two weeks, a script for one diflucan weekly, and an apology that went something like this, "I'm really sorry. Your condition is not only bad, it's extremely complex. This is something you'll be dealing with everyday. If it's not one thing, it will be another. I'm sorry. We can treat your symptoms, but your only alternative is a total hysterectomy."
    So... That's pretty sweet. Obviously I'll be getting a second and possibly a third opinion. I guess I'm posting because I don't really know how I'm supposed to feel about this. It's so final. I'm just putting it out there. It feels numb and empty. I've lost so much time to being sick. Do I take more of that, or do I go through menopause at age 25?

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    Default Re: Endometriosis anyone?

    Quote Originally Posted by Underestimated
    I'm resurrecting this thread...
    I have a bunch of blood tests on Monday in addition to an ultra sound. My doctor tells me I'm in the latter of stage 3 endometriosis. So much so, he said hormone therapy wouldn't help, it would probably worsen my condition. I went in thinking I'd get birth-control. I came out with another script for vicodin, 2 in two weeks, a script for one diflucan weekly, and an apology that went something like this, "I'm really sorry. Your condition is not only bad, it's extremely complex. This is something you'll be dealing with everyday. If it's not one thing, it will be another. I'm sorry. We can treat your symptoms, but your only alternative is a total hysterectomy."
    So... That's pretty sweet. Obviously I'll be getting a second and possibly a third opinion. I guess I'm posting because I don't really know how I'm supposed to feel about this. It's so final. I'm just putting it out there. It feels numb and empty. I've lost so much time to being sick. Do I take more of that, or do I go through menopause at age 25?
    Maybe I'm missing something here, but why would you be going through menopause at age 25? Depending on the size of your uterus, you will have the option of having a TVH (vaginal hysterectomy) or a TAH (abdominal hysterectomy). I would imagine the plan would be to leave one or both ovaries behind to continue producing hormones so that you would not go into menopause. Even if endometriosis has affected your ovaries, there is incentive not to do a bilateral oophorectomy..... ovaries should be maintained.

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    Default Re: Endometriosis anyone?

    Should be. The doctor said total. Ovaries and all. I'm getting other medical advice. Today was a little shocking. Basically he said no hormone therapy now. Do a total hysterectomy, then put me on hormone therapy, estrogen replacement. He said he probably should have taken the left ovary during the last surgery as the endo was so extensive.

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    Default Re: Endometriosis anyone?

    Quote Originally Posted by Underestimated
    Should be. The doctor said total. Ovaries and all. I'm getting other medical advice. Today was a little shocking. Basically he said no hormone therapy now. Do a total hysterectomy, then put me on hormone therapy, estrogen replacement. He said he probably should have taken the left ovary during the last surgery as the endo was so extensive.
    Just FYI, a total hysterectomy doesn't include ovaries. Removing ovaries is an oophorectomy. Removing ovaries and fallopian tubes is an salpingo-oophorectomy. But yeah.... sounds like you have a REALLY REALLY REALLY nightmare case if he's talking about doing a TAH / BSO (total abdominal hysterectomy and bilateral salpingo-oophorectomy). I agree.... get a 2nd opinion. There will be other long term issues that are more than minor associated with removing your ovaries unfortunately

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