Endometriosis?

Karleyyy
Karleyyy Posts: 857
edited November 10 in Motivation and Support
I most likely have Endometriosis, and while I'm kind of nervous to figure out, I'm going to be very relieved. I was just curious if anyone here has it or knows someone who does?

Replies

  • hush7hush
    hush7hush Posts: 2,273 Member
    I've got it.
  • Kekibird
    Kekibird Posts: 1,122 Member
    In the same place, Karleyy. My GP doc thinks that's what it is and we went through all that he could do for the pain.

    Birth control is managing some of the pain but not enough. I'm supposed to call for an appointment with a gyno and I just haven't. Too worried....
  • Yup I have it too
  • becoming_a_new_me
    becoming_a_new_me Posts: 1,860 Member
    It is the burdeon of my life but completely manageable.

    BTW..once I was diagnosed, they kept suggesting a hyster, but I said no way. I now have it under control without one.

    Its not a death sentence, and it's not cancer...just take care of yourself
  • saverys_gal
    saverys_gal Posts: 808 Member
    Finally diagnosed with it last March after being fairly certain for several years. I've been on multiple bc's prior to my diagnosis and nothing helped. Severe bleeding...a tampon every 2 hours or so, cycles of 7+ days, anemia and getting gray outs, no energy and absolutely god awful cramps that could make me cry...I opted to have an endometrial ablation done last April (gynecare thermachoice to be exact) and since that my life has been significantly better. Being in my 20s I run the risk of needing the procedure again as the endometriosis can grow back but I'll deal with that when it gets to it. Feel free to message me if you have any questions about the procedure. Best of luck to you!! :flowerforyou:
  • lakebreezewi
    lakebreezewi Posts: 13 Member
    I had Adenomyosis - which is similar.
    Also had several very large fibriods (bigger than softballs I was told). Had full abdominal hysterectomy in Oct 2012. No more pain which is AWESOME, however recovery is taking much longer than I expected. Found out after the surgery it's a 6-12 month process.
    Great free web site to learn more is hystersisters.com. I highly recommend this group to learn and get support. Good Luck
  • MeadowSong
    MeadowSong Posts: 171 Member
    I had a close friend who had it when we were in college (back in the 80's--guess I'm kinda old these days). Her pain was like labor pain--too bad to walk or talk through on one day, two days not that bad but bad enough she couldn't go to class and a couple of 'normal' bad days. Ibuprofen was newly over the counter then and my fiance' was a pharmacy student. He told her that two days before her period was supposed to start to start taking Ibuprofen (that's the generic name for Advil or Motrin). Take the regular dose until her period was over. It worked. It took several months before her pain was reasonable, but it was better the first time she tried it that way. After a time, her pain was about normal, and she didn't have to start taking it until it started hurting--but it's important to not wait until it's bad. It's much harder to control pain that way, you need to take something right at the start. But pain control is not all of the problems from endometriosis. She had a terrible time conceiving later. You shouldn't avoid the doctor, he/she might be able to give you the head's up on things that might help you. Also, if you're going to try the Ibuprofen, make sure you follow the label directions--just because it's over the counter doesn't mean that it's ok to ignore that label. You don't want to over-do it, and you might want to eat a little with it--it can be hard on your stomach. I always took it for menstrual pain too, mine wasn't horrible but bad enough that Tylenol didn't do much.
  • Mawskittykat
    Mawskittykat Posts: 241 Member
    I had to have a D&C and endometrial ablation done because my periods had went crazy, like 2 to 3 times per month. Severe cramping and the whole nine yards. Since I had never had my tubes tied they had to do that also, because after an ablation you wouldnt be able to carry a baby since the lining of the uterus would be seared. When going in laproscopicly to do the tubal they found endometriosis, 2 spots near the bottom of the Uterus and behind the uterus it was actually stuck to the colon with endometriosis between the two. This all had to be seared to keep it from getting worse. The Dr. explained it like this...the lining that should grow inside the uterus sometimes begins to grow outside of it. This is endometriosis, the problem is when you have a menstrual cycle not only do you bleed in the uterus but also outside of the uterus which can cause severe cramping and severe anemia when prolonged. I am very glad I had this procedure done and got this problem fixed. I had it done on Jan 20 of this year and havent regretted it at all. I feel lots better already and really havent even finished healing yet. Please take care of yourself, and dont play it down thinking it is nothing to worry about because it can get worse. It does cause problems conceiving as it took me five years and I only have one son. I Thank God for him everyday.
  • Alarista
    Alarista Posts: 77 Member
    I was diagnosed like 7 years ago, I've been through two rounds of chemically induced menopause. It had it's ups, but it was definitely better than the horrible pain I had. I also had the exploratory laparoscopy, and they wanted to do the ablation, but mine was too widespread to do so. Heating pad is your friend, I use the seasonique three month course of birth control to keep periods to a minimum. You have to kind of figure out what works for you. Everyone is different, I've met people my age who have had to have a colostemy bag because the damage was so bad, and then I've known people who just have pain. So don't let them freak you out, do research, if your doctor suggests something radical, get a second opinion. It takes time to find the right doctor, but totally worth the search. The first doctor told me to just have a baby, I was 18, unmarried, just insensitive.
  • Mamaincali
    Mamaincali Posts: 65 Member
    I've had it. Had laparoscopy surgery for it when I was 24. And a few months before I turned 27 I got pregnant and my daughter is now 4 1/2 years old. You don't have to live with the pain and you can go on to have children and you can help to prevent it from coming back. I have been having bouts of pain recently similar to what I had in my early 20s so I hope its not returning but if it has I know it can be treated again.
  • keps920
    keps920 Posts: 2
    I have it. Was diagnosed with it about a year and a half ago. I started exercising and counting my calories to lose weight a few months back. Since then, not only have I lost weight and inches, but I have had a decrease in pain with my endo.
  • i have endo as well. had surgery last week....feeling sooooooooooo much better. :smile:
  • kristelpoole
    kristelpoole Posts: 440 Member
    I have endometriosis AND adenomyosis. I've had surgery twice, once when I was 22 and again in December. What helps? Um... Ha. Narcotics? I try to avoid those though, so I focus on breathing exercises and natural methods like Raspberry Leaf tea. Also, the more I work out and eat whole foods, the better I feel. Most of the time though, I just try not to think about it. :/
  • AnneM69
    AnneM69 Posts: 30
    I have it, I've probably had it for years though I was only diagnosed via laparoscopy last year. I had my daughter nearly 5 years ago and having her did not help at all, it only made it worse.
    I really am trying to eat healthily but so many healthy foods upset my stomach it's really hard. Honestly sometimes all I can eat is white flour things and rice, chips, plain fish or meat, processed cheese slices, smooth peanut butter, Vegemite, and a small amount of some vegetables. I still get the cramps, but low-fibre foods seem to hurt less, perhaps because of less bulk. I like fruits, eggs, spices, better cheeses, other vegetables and normal tea and coffee but they can all irritate my gut, even when it's not my TOM.
    I take Ponstan (Mefenamic Acid) capsules and Donnatabs (like Buscopan) and they help but I have to remember to take the Ponstan when I start getting PMS otherwise the active ingredient will not work fast enough. I do eat crystallized ginger and drink mint tea sometimes but their affect is too unreliable and slow, if I'm busy or tired it's easier just to take the tablets. I do have ibruprofen as well, but it usually doesn't work at the normal dose and I know someone who was taking it all the time for back pain and had to have a CAT scan because they thought he had an ulcer. My stomach can be fine all day and then get upset at 11pm, midnight or later, and that's why I need something that'll work reliably to let me sleep.
  • I had my endo confirmed last November when I had a laparoscopy. The pain was unbearable some days before the surgery. Unfortunately, the surgery did not fix my problem completely, but made the pain less severe. I went on Depo Provera in January, at my doctor's suggestion (the other option was hormone therapy to put me through temporary menopause). The Depo has made me almost pain free- I've had 2 or 3 random days of pain since January, but nothing close to what I was experiencing before the surgery. The only problem I've faced is the weight gain. The surgery destroyed my stomach muscles, so I lost my abs. Going on Depo made me gain 15 lbs and so I never got my abs back. My advice if you have a laparoscopy would be to try to get your stomach muscles back asap, or else you'll be where I am now, wistfully looking at bikini pictures from last summer, knowing I'll have to work my *kitten* off to get that stomach back!
  • My mother was diagnosed years ago. Im almost certain I have it as well; I have all the symptoms. However, I've been avoiding it and have yet to be tested for it. My gyno keeps pushing me to set up an appointment to get it done, but I'm scared from seeing what my mother went through in her own personal battle. One day soon I'm going to have to woman up and make that appointment!
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