What I Wish Everyone Knew About Endometriosis

I wanted to share the following link to a fantastic article by Libby Hopton, as featured on Mind Body Green.

If you have Endometriosis, or more importantly, if you have a friend, family member, or co-worker who has it, please take a moment to read this.  It might shed some light on what your loved one is going through and allow you to understand and relate to her a little bit better.

http://www.mindbodygreen.com/0-11318/what-i-wish-everyone-knew-about-endometriosis.html

16 Comments

    • The top Endo specialists, like Dr Redwine, do believe that we are born with it. During research they found Endo in the bodies of babies via autopsy, so I also believe we are born with it. The specialists who participate in some of the FB support groups say that you are born with the disease in all of the locations you will ever have it and although it may deepen and progress sonewhat until your early twenties, when doctors tell us that it has reoccurred, they are actually referring to disease missed during prior surgeries. That is a frustrating thought when you have multiple surgeries in your thirties and more Endo is found every time. My doctor always told me it would grow back after each surgery no matter what, so I would need surgery every 2-3 years. It makes it hard to know who or what to believe after a while. When so many doctors have different opinions on various aspects of it, it’s easy to see why it’s such a difficult and misunderstood disease. I wish they would teach more about it in medical school. Maybe someday they will.

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      • I honestly think they have no idea why it happens so docs are grabbing straws trying to help is. I had multie surgeries before my hyst at age 28, rarely a full year between and the docs were always suprised how much had returned in such a short time. I just hope for future generations they get it figured out so the suffering ends!
        It also suprises me how long it takes for proper diagnosis. The pain started when i was 12, by 17 I was nearly blacking out before each period. By 18, I was running a low grade fever every month starting the day before my period (which I assume was because of inflammation). Surgery was finally recommended at age 22. 10 years I spent being told my symptoms were normal. I was so sure going into surgery that it was all in my head that I was shocked to hear how much endo they found.
        That has made it difficult for me to seek medical care for various other health problems because I am so programmed to believe it is all in my head. Very frustrating!

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          • I replied, but i don’t think it went through so sorry if this is a repeat. The endo caused nerve damage, which I was unaware of at the time of the hyst. It was very depressing for a couple of years after the hyst to have underwent what I thought was a cure-all and still be in significant pain. 7 years later the neuropathy has improved although I have triggers that will set it off, one of which remains sex which has been tough. I would not change my decision. It’s nice to never have to worry about another cyst rupturing. I also had adenomyosis so no longer having a uterus helped quite a bit with the overall pain. Very tough decision though!

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            • I’m glad you found some relief although I’m sorry it wasn’t complete. I’m always curious because having a hysterectomy is something I have given a lot of thought to (and something people ask me about fairly often) and wonder if it might eventually be in my future. Still weighing the pros and cons, I guess. I know it must have been a very difficult decision to make.

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              • For me, it boiled down to wanting my life back. It had gotten to the point where every step I took sent shooting pain through the right side of my pelvis. I basically spent everyday on the couch with a heating pad and was taking Percocet several times a day just to get some relief and even that wasn’t great.
                I was very tired of being sick and just wanted to live my life again. Although it did not work as much as I wished, I was able to get back to work and make a dent in “normal” life.

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  2. I suffered from Endo. In the 70’s most doctors were men and I suffered (not that women don’t suffer today). I have to brag that I went through menopause 2 years ago during my Grave’s Disease crisis…. I never thought that crisis would be a positive thing but I went through menopause with NO symptoms. It was a breeze. I couldn’t be happier not having my periods. I can almost tell you the exact day the menopause ‘happened’ because it was the first time in my adult life that I was pain free.
    Thanks for this blog. I’m sharing it with my sisters and I know it will be a great support.

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  4. You should check out this blog… http://primalgirl.com She also suffered from PCOS and endometriosis as well as an autoimmune disease called hidradenitis suppurativa (HS). I also suffered with both HS and rheumatoid arthritis, as well as chronic acne, chronic dandruff, anxiety, and depression. I came across her blog one day in a desperate search to find any answers that might be able to ease my suffering in even the smallest way. The day I read her story about how she was able to overcome the myriad problems she had been facing, I was so happy I cried. She basically cured herself completely of all disease. Since changing my diet, I too have healed my body! No HS, no RA flare-ups, I have clear skin, and no depression or anxiety. I was extremely skeptical at first, but after reading a couple books, blogs, and experimenting with my diet, I learned first hand it really does work!

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    • Wow! That sounds amazing! I try to follow an anti-inflammatory diet for Endometriosis (no meat, dairy, gluten, or preservatives) but I have a hard time following it 100% due to the cost and also my lack of energy for all of the prep work required for vegan meals. I also do a lot of juicing and smoothies in our NutriBullet, which I love! After a month long period of being so sick that my parents had to prepare and deliver our meals (went off of the Endo Diet during that time), I am starting to prepare some myself again and returning to my more healthy diet. I have noticed some improvement in my symptoms since making that change again. I will definitely checkout the blog you recommended. I’m sure there are improvements that I could make to my current eating habits and I am a strong believer in the healing powers of food (or the opposite – the power of unhealthy food to fuel chronic illness). Thanks for the link and congrats on your success. Hearing positive outcomes always gives me much needed HOPE. 🙂

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  5. Oh great, I’m glad you’ve been experimenting and seeing a little improvement! Food really is an amazing medicine or an amazing enemy! I was a vegetarian for 4 years thinking that I was being so healthy and discovered through this process that soy is a huge trigger food for me. So all the soy I ate as a vegetarian was only making my problems worse. I also learned, that nightshade vegetables are the MAJOR triggers for autoimmune diseases. Tomatoes, potatoes, peppers, eggplant, and a few others are the big big problems for inflammation problems in AI disease sufferers. Through a lot of food journaling I even discovered what foods cause what problems. Potatoes trigger my RA and tomatoes cause me to break out, sugar leads to the anxiety and depression. I also struggle to stick to it financially and also to find the time to be diligent about it. It’s also really hard when French fries are your favorite food : ) I’m following your blog now and look forward to hearing about your journey!

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