Does anyone here have Endometriosis?

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Specializes in Med/Surg, Home Health.

I know we are not allowed to give medical advice on this site, but could someone please tell me your personal experience, treatments, outcomes, regrets with dealing with endometriosis? I have it bad. Ive had 2 surgeries to remove it, last one was in June along with multiple other surgeries (hemicolectomy, rectopexy, rectocele repair, appendectomy, endometriosis removal which involved multiple organs). Im still miserable. Miserable is a total understatement. I am in constant pain. My husband and I have had sex ONE time since June! It hurts sooooooooo bad, I am unable to. I STAY constipated, STILL. I went to my colo-rectal surgeon yesterday, who did a dilitation of the anastomosis of my colon (which did nothing). I went to a different doc today (gyno) and they want to do a total hysterectomy. I dont mind losing my uterus, but I am terrified of losing both ovaries. I dont want to rely on HRT, but scared not to. If anyone has had to deal with this, could you please share your experience, if you dont mind. Im not asking for medical advice, I just want to know what my options are. I also have a retroverted uterus which doesnt help matters. Surgery just on the endometriosis is not an option anymore because it keeps coming back. Anyone, PLEASE? PLEASE PLEASE????????????

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Specializes in Staff nurse.

...check out Endometriosis Association. I had Endo in my late 20's and finally had a hysterectomy at the age of 31. I tried the male hormone therapy first and got worse. I was on Danazol and it worked for a friend at church...but not for me.

...let us know how you do. Prayers and thoughts your way...

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Specializes in Med/Surg, Home Health.

Did you have your ovaries removed also? Are you glad you did it? Did it cause any sexual problems? Im so distressed. Thanks for your reply.

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chenoaspirit. Hi. I am sorry you have endo. I suffer from adenomyosis, it is horrific, awful painful uterine contractions & constant pain. You mentioned you wanted to read and/or hear about women who have endo, tx options, etc.. There is a wonderful site called Hysters Sisters and there are various message boards & forums, as well as very supportive members who are/have experienced the same. Here is the site. It has really helped me & I feel there is hope for my pain.

http://www.hystersisters.com/

Best of luck to you.

Lizzy

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Specializes in ER.

Cheno -

I had endometriosis for years (since I was a teenager). We thought that was a big cause of my infertility. The only thing that helped it was having a baby, as they say the stretching helps to rid the uterus of this tissue. Now that doesn't really help the endo on other organs though. Recently (5 years ago) I was diagnosed with PCOS and they now think that was more contributive to my infertility. I've been on continual hormone therapy since being diagnosed which keeps me in a chemical menopause (no periods for almost 5 years! woo hoo). My blood pressure has been up though and I turned 35 so they are not liking the hormones with me anymore. Therefore, they are talking with me about a complete hysterectomy. I say take it out. My mother had a total hyster at 36 and it really gave her no side effects (sexual or anything). I'm hoping to hold them off til I'm out of nursing school, but we'll see! Good luck. I know it can be tiring and frustrating to deal with (emotionally and physically). I wish you the best!

Kathy

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Specializes in Staff nurse.

...I went thru a time of no hormones to starve the endo the doc couldn't remove wrapped around my ureters and bladder and then I had the premarin (this was the 80s). So I had a time of flashes but it was temporary. Now I use the patch, the love life HASN'T suffered, it got better, no pain to deal with.

...the other replies give great info. Hugs.

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