Tuesday, March 25, 2014

Because knowledge is POWER.


Why hello there, ...anybody! {it's quite possible no one is at this point!} :) - Besides the last sporadic piece I posted, my post before that was in October - a lifetime ago in blogland!!!

Soooo... MUCH of the reason this here blog has been at a stand still as of late is a silent little devil that lives inside of me called endometriosis. Lots of my time has been spent at doctor appointments, in pain and sick from this rotten disease. Most people either know nothing of, very little of or are misinformed regarding endo.

Aside from many months being in chronic pain and overall feeling unwell {understatement} - the emotional stress (that things of this nature can cause) has probably been the hardest to deal with. Fortunately for me, I have an awesome support system. Unfortunately for others, that's not always the case.

It just so happens to be endometriosis awareness month and I feel compelled to post about it. This may come as shock to any who have read my blog knowing full well, I rarely if ever, post personal things. I feel it's a duty of sorts to speak out on this topic knowing what I know and how it has affected my family and me. So speak I will...

Endometriosis is a tissue similar to that which normally lines the uterus is found outside the uterus on other organs of the body causing lesions, growths, adhesion and scar tissue. A good indication you or someone you know has it is bad pelvis or lower abdominal pain just before or during a period. We are told from a young age that bad cramps, pms, heavy bleeding and severe pain are a normal part of periods. This is NOT normal people.

The thing is, there is an estimated 1 in 10 women and girls with endo, 176 MILLION people in the world! Astonishing numbers. With these numbers, you ladies, have endometriosis or know someone who does and it isn't pretty for A LARGE NUMBER US OUT THERE.

Common symptoms include painful periods and ovulation's times, irregular bleeding, fatigue, chronic pelvic pain and a 30-40% rate of infertility among those with endo, endo being the number one cause of infertility. Adhesion's, impaired immune system (endo is an auto-immune disorder or secondary auto-immune, it's debatable), depression, bladder pain and problems, irritable-bowel problems, pain during sex, prolonged periods with or without clots, back pain, hip pain, leg pain, anxiety, miscarriages... the list goes on and ON!

The only way to determine if someone has endo is by doing a laproscoptic surgery. It can not be seen on an x-ray. Finding a good and competent doctor who specializes in SUCCESSFULLY REMOVING ENDO BY EXCISION is KEY. Sadly, in the United States and Canada, less than 100 out 55,000 gyno's qualify. Many doctors/gynos are not experienced to recognize the different stages and colors endo can rear its ugly little head, neither are they experienced and skilled to do the necessary excision surgery. Most doctors will use ablation (burning of) of the endo which does not remove the root of the endo. It will just scatter it and grow back, making it worse.

On average, it takes a woman 7 years to be diagnosed correctly because it is way under researched, underfunded and under educated. MANY women have had unnecessary hysterectomy's due to lack of skill and knowledge of the doctor and/or are put on hormone therapy in order to suppress the endo which in and of itself has a LONG list of side effects, many being serious side effects.

A common misconception is that endo can be cured by getting pregnant, being placed on hormone treatments or getting a hysterectomy. I urge you to get a 2nd, 3rd, 4th opinion if this is what you are told.

There are many out there who can relate to me, I know because I relate to them. I found support groups to be very helpful in learning a thing or two and suggest others do the same. Sadly, because of incompetent and un-compassionate doctors, many are told they are neurotic, drug-seeking hypochondriacs and the problems are in their head - which they are then prescribed anti-depressants and dismissed. No one knows your body better then YOU. If you feel something is wrong don't roll over and take a beating, FIGHT! Just because a doctor tells you something doesn't make it so. Do your homework and be your own advocate because unfortunately, most doctors won't and don't. If you feel your doctor is dismissive regarding your issues, CHANGE DOCTORS. They are working for you, not the other way around. If they aren't doing their job, fire them. Your health and sense of well-being is at stake.

For those struggling with infertility I HIGHLY suggest A Blog About L♥VE. And for those who aren't struggling with infertility, I HIGHLY suggest... A Blog About L♥VE :) Author's Mara and Danny Kofoed's words are manna for my soul. Their posting's are thought provoking and bring me peace and comfort. Mara touches a little on endometriosis and chronicles some on her time spent doing infertility treatments - her infertility being an effect from endo. I happened to know Mara many moons ago as we went to church and school together in our younger years, both growing up in good ole Mesa. I can say her smile is as contagious now as it was way back when :)))

I urge everyone to take a look at these sites and study up: Endopaedia and endo-resolved. You just may save yourself or someone you know years of needless agony (physicaly, spiritually and emotionally speaking), may be even a uterus and an ovary or two :)

I am all ears for any with questions or comments. If you have a story to share, PLEASE DO! I myself and no expert but am very grateful for support groups where I have learned SO MUCH (many thanks to Nancy Petersen, a fellow endo-sister and crusader from whom I have learned invaluable information). I am more then happy to share what knowledge I have learned in the hopes it will help someone, anyone. Knowledge is power, of this I am certain.

To all my endo-sisters out there and those struggling with any chronic and debilitating illness (not just endo), you are not alone! Lean on one another. Find comfort in one another. Support one another. We are all in this together. If you don't have a good support system, find one. They are out there.

Endo is a crap disease. No getting around it. BUT I will say this. It has made me stronger; emotionally and spiritually. And for that, I am grateful and blessed.



7 comments:

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    1. Glad to have. Thank you for reading ;) - Have to say I've debated this post for some time but feel good about hitting that 'publish' button :)

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  2. I had no idea Keeley. In 2006 I had an abdominal hysterectomy for Endometrial Cancer. It was contained in my uterus, but I certainly can relate to all the symptoms during periods. Praying God will guide you through this time and it sounds like He is doing just that. Give your little 'George Clooney" a hug from me.

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    1. Oh Sara! That sounds painful in many ways, and not just physically. I assume you are doing okay these days as far as that is concerned? Glad it was caught and you were able to treat it. Female problems should never be taken lightly and you are living proof of just that. God has shown me many tender mercies throughout this all... I love you GHC - Hope to bring George to see you sometime sooner than later :)))

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  3. Wow, I didn't know the magnitude of your endo. You are so right that you know your body best. I knew something was wrong with me for 8 years and ulitimatley I diagnosed myself with a blood disorder after doctors dismissed me.

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  4. 8 years! that is a very long time to have to endure something of this nature without answers. It can make you feel as though you are crazy at times (and many doctors are all to eager to say just that if they don't know what the problem is) . I am so sorry it was a long journey to a diagnosis but am glad to hear you were strong enough to push it and FIGHT. In this day and age, more and more are doing just that and it's time the medical community to just accept it and say, "hey, thanks for helping me do my job, you are a dream patient!" ...if wishes were fishes :)))
    Hope you are doing well and living well today and everyday. Take care!

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  5. I was diagnosed with endo after the birth of my second child. I was blessed to have an amazing gynecologist that knew immediately when I reported my symptoms.
    Hoping you find relief soon! That was brave of you to share this!
    Your work has inspired me for several years! I have no doubt that you will always have a loyal following due to the creativity and quality of work you do!!

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Thank you for visiting our little ole blog and taking the time to leave a comment! Be sure to come again :) -keeley