Embody Mental Health

Posts Tagged ‘illness’

Glamour magazine’s August edition published an article “Endometriosis & Polycystic Ovarian Syndrome: Two Women’s Diseases Doctors Miss Most: Could You Have One?” by Hallie Levine Sklar.  The subheader read “As many as 20 percent of women have one of them, but it can take years to be diagnosed with endometriosis or polycystic ovarian syndrome.  If you or anyone you know is suffering, this piece is required reading.”  I, and many people I know are suffering, and so of course, I read further.  As I did I pondered the people I know with this condition.

All of us had suffered for an average of 10 years with the pain and side effects of our respective conditions {mine, as I have disclosed before, is endometriosis}.  All of us had, had symptoms going back as far as middle school or early high school.  All of us had been told by professionals and trained gynecological and other specialists for years that it was “normal” and “just part of our regular body functions” and had been shuffled off or sent home with pills or heating pads {I personally have burnt out innumerable heating pads, yes, they can burn out}.  All of us had to lobby and be our own advocates when the pain and effects became too great to ignore or just hide in bathrooms on floors crying for nights on end.  All of us only got “diagnosed” after much personal research, seeking out of the proper experts ourselves, and even more lobbying to be tested and checked for more than just a “normal” woman’s bodily function.  All of us were right.  All of us were ignored.

So, as I read further in this article in a popular women’s magazine I sighed that sigh of relief you get when you can put down your picket sign and let someone else talk about the issue for a moment.  And I thank you Hallie Levine Sklar for doing just that.  This article was full of all these truths that so many women I know and myself have suffered through.  It talked about the average decade from onset to diagnosis that went unheard for many, I would say most, women with these conditions.  I know all the women I can think of diagnosed with this condition are in their 30′s or older and all have received their diagnosis in the last 1-5 years at most.

Empowerment.  Advocacy.  Strong words with strong images conjured up of picketing, signs, and a lot of riot grrl roaring.  We often forget in the mix of it all to lobby for ourselves as much as anyone else.  Even if it means being our own champions against the “experts” and saying how we feel and not backing down when we aren’t being heard.  Even and ESPECIALLY when it comes to our own health.  I learned this the slow and painful hard way.  I spent years in certitude that the professionals in the medical community that I went to time and again when the pains increased, the ruptured cysts persisted, and the nights spent on the bathroom floors crying multiplied, all told me that it was “normal” and to go home and use my heating pad.

Finally, three years ago, and after a month spent more out of work than in the office, I began to research, and research, and research because I realized no one was going to listen to me until I had something specific I wanted to say besides, “It really doesn’t feel normal, isn’t there anything else you can check for?”  I self-diagnosed in one afternoon between the wonderful forums and information rich sites of EndoResolved ,  Endometriosis.org , The Endometriosis Association , and The Endo Research Center.  By the end of one day I had assessed that all my symptoms from gastrointestinal to bladder to ovarian all linked up and all the questions about what was wrong with me was answered…with one day of google searching.  After I got through my stages of grief..skipping denial {everyone else had done that fairly well for me} and straight into anger and zipping through into acceptance.  Acceptance of the way I had been ignored about my own body for so many years.  Acceptance of the fact that my anger, while justified, would not change the past or the responses I had faced.  Acceptance of the knowledge that if anything proactive was going to be done on my behalf, on behalf of my wounded body, I would have to do it and not take “normal” as a response to my issues any longer.

I advocated and was forced into a role of empowerment in a medical system I did not understand all the way to the surgery table.  One of the major issues with endo is the fact that no MRI or scan will show it.  You have to do a simple laproscopy to look for it and assess if it exists or not.  I was never one ready for invasive medical procedures but 10 years of pain made me want to know, and all my research made me need to know if I was right, my body was right, and the medical professionals all along my journey were wrong.  They were.  Once I finally had the procedure they found a pretty severe case of Stage 3 (out of 4) endometriosis which had, in 10 years of growth and damage while statements of  ”normal” were leaving it alone to do its dirty endo business, eaten away at parts of my fallopian tube on one side, and adhered itself to my bladder, ovaries, and bowels.  ”Told you so,” just didn’t seem to bring satisfaction.  But getting all that garbage out of my body definitely did.

Reading Ms. Levine Sklar’s article and hearing the statistics yet again, the stories of many other unheard women’s voices, and many oblivious professionals, stirred up some of my old picket sign grumbles.  I felt a need to highlight the well written article and this issue which is pervasive in the female population.  Both with my condition {endometriosis} and that of many friends of mine {PCOS; polycystic ovarian syndrome}.  Both which, left untreated, can lead to issues with fertility as well as a variety of organ damage and a gamut of painful symptoms not only for the female organs but many other parts of the body including bowel, bladder, appendix and others.  Just scour the forums on EndoResolved for a day and you will begin to see the number of illnesses linked to endometriosis and the ways it can exacerbate a number of medical issues.

I am finishing up a series on SELF CARE as an E-COURSE over at www.wishstudio.com this week and last week’s course material was about EMPOWERMENT {I will be offering this course in full and in pieces in my new products page shortly}.  Reading this article reminded me how important empowerment can be not only for our feelings of self-worth and confidence but ultimately and in extreme cases, can be vital for our health, longevity and quality of our lives and bodies.  We can be the one voice for ourselves {as well as others} when no one else, even professionals, will listen.  There are, I will say, a number of very well-educated and well-versed endometriosis and PCOS medical professionals out there whom I respect greatly and, when I finally found them, were very helpful in my further understanding of and treatment of my endometriosis {a chronic illness that will be with me at least until I have  hysterectomy one day, possibly, based on some data, even after that}.  I will also say that I had to find them myself after years on a medical journey that others were steering off course.  I had to take the reins of my life and take the steering of my own ship before anything was done.

Know that your voice does matter.  Your instincts and those pangs in your gut are telling you something important.  Don’t discount yourself just because someone else does, even if they have letters after their name {I say this being someone with letters after my name and knowing I am human, not perfect, and although I am not a doctor I would not say I was the authority on your life even if I were your therapist}.  Listen to yourself.  Be the voice for your own causes.  Know that sometimes the battles for self are the most important and need a champion.  You are not wrong just because someone, and sometimes many someones, tell you you are.  Believe in you.  I finally did in the case of my own long battle with chronic illness and although I am not “healed” in the biological respect from that ailment I am stronger for having fought and my body thanks me.  Now I have the information to move forward informed on what is best for my condition.  My thoughts go out to all the women battling endometriosis, PCOS, or any other painful condition or issue in silence.