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Has you been diagnosed with endometriosis?

I am 27. Just recently diagnosed with Endo. Right now my doctors whole approach is "wait and see". I do have a mirena IUD that is his treatment plan since it released progesterone but I'm having it removed and asking for an oral BC with progesterone. I also have high risk HPV and will face a hysterctomy for that in 6 months if the cancer cells come back after my recent LEEP. But as far as the Endo goes he's not doing anything else to treat it. He told me take Tylenol and IBprofin for the pain...which is laughable. I take that regularly for other aches and pains and it hardly touches those.
Do you have diagnosed Endometriosis? What has your doctor done to treatment and what have you decided to do for your body? Have you found effective treatments, what stages are you in? Are you done having children?

And is it definite that it will only get worse not ever better?

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munch12502

Asked by munch12502 at 11:59 PM on Nov. 25, 2008 in Health

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  • I had a hysterectomy in May 2007 after going through about 6 months of excruciating pain during my cycle. Before that, I never knew I had it. I was 37 at the time and completely done having babies. My doctor told me the same thing he told you about having to jump through hoops with the insurance company. I was scheduled for the laprascopy and uterine ablation until they did a ultrasound and found large growths around my ovaries. Finding the cysts led them to do a test called CA-125 to check for uterine cancer. That test came back with abnormal results, which gave my doctor the green light to go ahead with the hysterectomy. Everything turned out fine (PRAISE GOD!). The growths were actually what they called "Chocolate cysts" caused from the endometriosis. After the hysterectomy, I had to stay off of any hormone therapy for six months to make sure the endometrial cells were "starved" of any estrogen. !
    Mishelly728

    Answer by Mishelly728 at 11:03 AM on Nov. 26, 2008

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  • I was told I have endo, but I don't think I do at all. To actually be diagnosed with endo you HAVE to have laparoscopy. Which is where they make a few small incisions, fill you up with gas and have a look around with a tiny camera. There is no other way to make an absolute diagnosis other than to physically SEE the tissue growing. If they find anything while they are in there they will remove it, but that will also leave scar tissue and cause more tissue to grow in it's place. It's normally just a band-aid remedy to help you get pregnant. Short term they can put you on the pill to help reduce estrogen which triggers endo, long term the only actually cure is a hysterectomy.
    Slinkee

    Answer by Slinkee at 12:06 AM on Nov. 26, 2008

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  • I'm guessing since you are possibly looking at a hysterectomy and using bc is why your doctor isn't so concerned with it at the moment. I wouldn't be comfortable with a doctor who didn't explain the disease better. Also, you might try googling for natural endo remedies, low estrogen diets have amazing effects. I was told that I would never have another baby after they suspected endo, but I tried some lifestyle changes and I'm currently in my second pregnancy since they told me.
    Slinkee

    Answer by Slinkee at 12:09 AM on Nov. 26, 2008

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  • I should elaborate I guess. Yes I did just have a lapascopy a few weeks ago. This is an actually confirmed diagnosis...not just me pretending I have this disease.

    My doctor and I had talked Hysterectomy before the surgery when we were talking about the HPV and the continuous cancer cells coming back on area's that were supposed to be "very very" unlikely for them to come back on. So the hysterectomy talk has nothing to do with the endo.

    He is very very very ;hesitant to do a hysterectomy period....based solely on my age. He said if I was 43 he would go ahead and schedule it but since I'm so young the insurance companies will throw a fit if he tries to proceed without following certain steps first....meaning the lapascopy and then follow up procedures.
    munch12502

    Answer by munch12502 at 9:52 AM on Nov. 26, 2008

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  • I'm tossing around changing gyno's in my head. That's not out of the question. I've researched what I could online about endo, read on WebMd and wikipedia...but it's never the same as talking to women who have the same issue.

    My main question is this is called a "progressive disease" so does that mean there is no way it's ever going just stop? It's going to continue to get worse?

    I am completely done having babies. That's not an issue. I have three children and I can't afford or mentally handle any more kids.
    munch12502

    Answer by munch12502 at 9:53 AM on Nov. 26, 2008

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  • The hysterectomy was, of course, not fun, but was not nearly as bad as facing that pain every month! It was literally unbearable! For some people, endometriosis causes no pain (as it obviously didn't for me for a long time). It is when the blood causes the cysts to form and put pressure on nerves that it gets so painful. If you want to p.m. me, I'd be happy to help in any way possible! I feel for ya' sister! I still say to this day that the pain I had from the endometriosis was WAY WORSE than being in labor! Contractions peak and then ebb-- that pain did not let up! It was like being at the peak of a contraction for HOURS! It literally sent my body into shock. I definitely can relate!
    Mishelly728

    Answer by Mishelly728 at 11:03 AM on Nov. 26, 2008

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