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Endometriosis Message Board
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Old 05-14-2011, 05:07 PM   #1
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Join Date: May 2011
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josephine23 HB User
its getting unbearable!

Hi,
I've only just found this message board and i was wondering if anyone could help me out.
I got diagnosed with endo just over a year ago. i was having serious pains but it didn't get picked up until i had a serious cyst burst on one of my ovaries and i had to be operated on.
I am on the maximum reatment they can give me, back to back contraceptive, monthly hormone injections that basically cause temporary menopause and constant tramadol and morphine.
My pain is unbearable most days and i've had to give up my job because its impossible for me to work.
I'm only 20 and have been told that as nothings worked and its still so bad they might need to perform a hystorectomy. Has anyone here had to go through this and could give me some advice...I'm only 20 and have always wanted children!
Please help me

 
Old 05-24-2011, 04:03 PM   #2
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Join Date: Apr 2011
Location: Los Angeles, California
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pinaay HB User
Re: its getting unbearable!

I might have endometriosis myself, although I'm only 17. I don't think that, if I do have it, my case is severe enough to have a hysterectomy, but my mom and my aunt had one done. In my mom's case, she had a full hysterectomy (ovaries, uterus, fallopian tubes taken out), but my aunt only had her uterus taken out. I don't know if you're concerned about hormone therapy (my mom takes estrogen, but my aunt doesn't). If you are, you could probably get a partial hysterectomy and keep your ovaries. I've heard that getting one ovary removed might help with cysts, as well. While this won't cure your endometriosis, it might help with some of the pain you are experiencing because of cysts. That way, you could still have children later on, then after having children, consider a full hysterectomy.
The pain that you're experiencing sounds quite severe, though, and if that's influencing your life too much, you might just want to listen to your doctors and get a hysterectomy. Ultimately, however, it's your choice to get a hysterectomy or not. They can't force you to. If you want to wait until having children before taking such measures, you could talk to your doctor about alternative surgeries.
I apologize if this response is a little vague-I havn't personally gone through a hysterectomy, but I hope this helped a little. Also, I know it's tough to not worry, especially when you are in pain, but try not to stress too much, as anxiety often makes pain worse.
Best of luck!

 
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Old 05-27-2011, 03:24 AM   #3
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Join Date: May 2011
Location: norwich connecticut, usa
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Jeneef HB User
Re: its getting unbearable!

Get a second opinion ASAP. I completely feel your pain. I was almost 4 years ago. I have been through 2 laps, and am starting my second try at Lupron to induce menopause...and still 2 weeks out of every month I am in agony. I switched drs, but this dr doesn't feel i need pain meds so I am on my own.,.I call their crying almost everyday but they wnt me to "let the lupron work" It's very frustrating. Ask about stopping the birth control..I got an IUD placed which was supposed to help, but didn't, (although it's good birth control) and later was put on OCs...when I got my second opinion he said sometimes the pills and other treatment cause miscommunication..one thing telling your body to stop producing and the other to try to cycle it...ask about that. The only other thing I can say is get FMLA for your job, that way you won't lose it..I have been out of work so much I used all my vacation and sick time. It sucks!! Good luck..stay strong...and definitely check around your area for someone who specializes in endo, or try a reproductive endocrinologist!

 
Old 05-30-2011, 11:21 AM   #4
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Join Date: Apr 2011
Location: Tennessee
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twinnotwo1971 HB User
Re: its getting unbearable!

I am speaking from experience here. Don't get a hysterectomy if you want children. If you have one, it may or may not help your pain. If the surgery is done by a gynecologist, he/she may not be able to remove all of the endometriosis if you have any on your bladder, intestines, or anywhere besides your female organs. It takes a surgeon with more skill than a gynecologist to get it from those areas safely. This is what I am going through. I have endo left behind, and it does not go away just because the ovaries are gone. If you can, try to do some research and find a surgeon who is qualified to remove the endometriosis through a process of excision. This may not be possible for you. I don't know your personal situation. But, the key is to remove the endometriosis, not the female organs. It can be done. I just wish I had known this before my hysterectomy. I didn't plan on having children, so that isn't an issue for me, but I'm still in pain. Hope everything works out for you.

 
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