Endometriosis

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Endometriosis Guide

Susan Cody HERWriter Guide

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ask: Endometriosis General Discussion

By EmpowHER February 9, 2008 - 4:48pm
 
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Endometriosis is when the kind of tissue that normally lines the uterus grows somewhere else. Share your stories with other women.

18 comments View Comments
 
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All user-generated information on this site is the opinion of its author only and is not a substitute for medical advice or treatment for any medical conditions. Members and guests are responsible for their own posts and the potential consequences of those posts detailed in our Terms of Service.

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Anonymous

I've (had)endo, as is typical, unknowingly for years till diagnosed, and would gladly share all I have learned from the research I've done & the treatment experience I've had. There's so much press & education out there about breast cancer & other conditions yet more women go undiagnosed or undertreated with endo than almost all other diseases. It can be painful & disabling, yet many in the medical profession are quite ignorant about it. Much more organization & education is needed to improve care for women with endometriosis. Just to take one aspect of endo, not even the most serious but certainly very common - The millions, billions even of menstual cramps women endure could be drastically reduced if there was more attention & concern given to this disease. When I was finally treated properly by a true endo specialist, I stopped that cycle of pain & haven't had a menstrual cramp since!

February 15, 2008 - 12:13pm
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Anonymous (reply to Anonymous)

i would like to know, what treatment has been given to you by your doctor, the endo specialist. has she given any lifestyle or diet restrictions? hope you'd reply to this message

September 30, 2009 - 4:08am
Angelica Guide Blogger

I've been diagnosed with stage four endometriosis. Can you explain the different stages and different treatments for each stage?
Thank you!

March 4, 2009 - 11:03am
Diane Porter

Hi, Angelica. What a pain! Literally!

I dealt with endometriosis for the better part of a decade or so, I'd say. I'm glad you're seeing a doctor for it. Have you already had any procedures or treatment? Or are you at the very beginning? And might I ask how old you are, and if fertility is an issue for you? Are you having a lot of cyclical pain?

The stages in endometriosis are based on how many places you have the tissue growing, and how much is there, and where it is. Here's how the Merck Manual defines each stage:

Stage I -- Minimal
A few superficial implants

Stage II -- Mild
More and slightly deeper implants

Stage III -- Moderate
Many deep implants, small endometriomas on one or both ovaries, and some filmy adhesions

Stage IV -- Severe
Many deep implants, large endometriomas on one or both ovaries, and many dense adhesions, sometimes with the rectum adhering to the back of the uterus

Treatment depends partially on whether your goal is simply relief from pain and other symptoms, or whether you're trying to get pregnant. Non-steroidal anti-inflammatory medicine can be given to control the cramps and related pain. If getting pregnant is not an issue, drugs can be given to suppress the ovarian function -- birth control pills are one example -- but of course if pregnancy is a goal, that's not a good option. Your doctor can do microscopic or laparoscopic surgery to go in and remove the endometriosis; this provides a lot of symptomatic relief and gives you a better fertility window, but endometriosis often grows back. After a surgical procedure to remove all the lesions, fertility rates usually are between 40% to 70% depending on how severe it was.

Let me make sure you've seen our Empowher page on endometriosis:

http://www.empowher.com/media/reference/endometriosis

Here's the Merck page on endometriosis:

http://www.merck.com/mmpe/sec18/ch247/ch247a.html

And this page goes into a little more detail about each of the medicines and/or hormonal options that are available:

http://www.womenshealthcaretopics.com/living_with_endometriosis.htm

Usually, especially if a woman wants to become pregnancy, she and her doctor will use a combination of treatments -- medicine, surgery and possibly fertility treatments once the endometriosis has been surgically removed and before it grows back. Pregnancy actually sends the endometriosis into retreat, as does menopause later in life.

What is your doctor recommending as a course of treatment?

March 5, 2009 - 9:33am
Angelica Guide Blogger (reply to Diane Porter)

Hi Diane,
I had Stage IV -- Severe and recently underwent robotic surgery where they removed all the endometriosis and my right ovary (couldn't be saved because of the damage). As indicated in you information above I had dense adhesions and the rectum adhering to the back of the uterus, so all of that needed be be fixed as well. I'm feeling much better and happy to be on the road to recovery.
Thanks for posting all the great information!
Angelica

May 29, 2009 - 3:07pm
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Anonymous (reply to Angelica)

do you have endometriomas? what is the size of your endometrioma? i was diagnosed with an endometrioma bilateral 4cm and 2cm respectively... im now under a hormonal therapy

September 30, 2009 - 4:12am
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Anonymous

Hi, I am certified holistic nutrition counselor and am working with a client who suffered from Endo for over 20 years. She had multiple procedures only for it to return again. Each month she would be bedridden with pain. After working together for about 6 weeks, she was symptom free simply bu changing her diet. It seems the medical world does not know or want to share this information. One of the biggest things we took out of her diet to make a difference was dairy.

March 8, 2009 - 7:23am
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Anonymous

@ the "certified holistic nutrition counselor":

Take your medical industry conspiracy rhetoric elsewhere. Do you really believe that medical professionals are so sadistic that they wouldn't share a cure if they had it?

You peddle ignorant (at best) and dangerous (at worst) "information". No one is out to keep secrets from people. Remove the tin foil hat, and allow our medical PROFESSIONALS a break.

May 28, 2009 - 4:52pm
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Anonymous

Wow that was incredibly rude.
I just finished the Book "The Fertility Diet" which is a book specifically based on a 25 year study on nurses and their fertility heatlh and how it was affected my what they ate. It was prett facinating for me. it informed me about how the women's body works in general and how differenct foods affect women't bodies. It was really eye opening to me as it took me through their original hypothesis and then where their results actulaly took them in the end.

I personally have stage 4 endometriosis and several other painful conditions realating to it. By following those dietary guidelines I have noticed HUGE improvements in my overall health. It shocked and amazed me. I know it will be a long road to continually feeling better, but I would much rather continue in bettering my diet and overall health than continually popping pills.

The book is great! Read it!

June 17, 2009 - 7:44am
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Anonymous (reply to Anonymous)

are you selling the book? can you give some advise? i have endo and i believe you that it has to do with the diet... what foods should i avoid... will it keep the endometriomas away?
am so addicted to coffee since childhood... do you think removing it would make difference?

September 30, 2009 - 4:16am
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