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.