How did you hear about the event?

The episode was actually entitled “The #1 Surgery You Don’t Need:  Hysterectomy” and it featured an OB/GYN who presented a 36 year-old woman who had one large fibroid with some alternative options to the hysterectomy or abdominal myomectomy her own doctor had recommend.  Dr. Oz mentioned how many doctors will only recommend or inform women about the procedures they perform themselves, rather than giving them all the options that are out there, and while I did appreciate his bedside manner and empathy for the women in his audience who had suffered with fibroids, I did not appreciate the fact that Dr. Oz himself neglected to mention the newest and least invasive of treatment options, MRI Guided Focused Ultrasound.  Perhaps it was because this treatment is not yet covered by most insurance companies, or maybe Dr. Oz’s legal staff was worried about liability, since not many long-term studies have been done, etc.  Whatever his reasoning was, EVERY woman has the right to know that this treatment is out there, and it is frustrating to me that most women who suffer with fibroids are completely in the dark about it.

Dr. Oz mentioned that the word “hysterectomy” itself is indicative of the medical community’s view on female organs, as the root word “hyster” refers to the womb and is derivative of the word “hysteria” based on the assumption that the womb itself caused uncontrollable, emotional behavior.  He apologized, as a member of that community, acknowledging that many doctors’ views on the value of the womb hadn’t changed much since the 1800’s.  This was corroborated by the story of one 49 year-old woman, who began to cry when she talked about how her doctor recommended a hysterectomy based on her age.  It seems that once a woman is no longer able or no longer wants to reproduce, her uterus has no value.  Dr. Oz was gentle and sweet, reassuring the woman that it was okay to cry.  By this time, I was a mess of tears and snot, and had to pause my recording to run to the bathroom for a box of tissues.

The fibroid segment of this episode was only about 20 minutes long, but I found myself incredibly drained afterwards.  I realized that I have never really been able to talk openly about the emotional toll that dealing with my fibroid has taken on my psyche.  Fibroids are not generally spoken of in public.  They are not deadly like cancer, and are not a condition that gain much sympathy from people in general at all.  Women are not supposed to discuss things like menstruation or reproductive organs openly.  I believe that attitude in today’s society is partly to blame for so many hysterectomies being needlessly performed.

My name is Erin.  I am 36 years old and I have been suffering from a large submucosal fibroid since I was 32.  This is my first blog entry, and with this and future blogs, I hope to become a part of the movement to increase awareness of this problem, to promote the government and the private sector to begin funding studies for better solutions, and to create a discussion among other women who suffer with fibroids so they will know that they are not alone.

What happens to the necrotic (dead) cells of a fibroid?
Well, the human body has amazing systems to rid itself of these dead fibroid cells. Simply put, there are scavenger cells (white blood cells,) called macrophages, that remove the dead cells by eating them!! In fact, macrophage means “big eater” in Greek! When there are an overabundance of these dead cells, as is the case with an ablated fibroid, the macrophages take on the mission of breaking down the excess so that the body can continue functioning. According to my readings, macrophages detect dead cells through smell, they then surround the cell and convert them into easily removed components. The macrophage covers the dead cell with a substance (antigen) that “tags” the cell for further attack from the body’s immune system! Now, the macrophages and their “pals” from the immune system, send the “digested” body’s dead cells through the bloodstream and into the digestive tract for the final bye-bye…a bon voyage for dead fibroid cells!! Done!

Immediately after my HIFU treatment I would say that my fibroid was ANGRY as all get-out. It felt large and hard and mean. It wasn’t until the second or third day that I felt the darn thing begin to surrender and start it’s journey of dismantling itself …with the help of the macrophages and my immune system. That is where I came in and helped my own immune system in ridding the necrotic cells, quickly.
Immune boosting is the single most important factor in well-being, both for maintenance and after a procedure of anykind. Here’s what I did then, and basically what I do everyday.
Drink water…lots of it (with lemon)…this will help the liver, who is on extra extra-duty at this time!
Exercise…sweat, sweat, sweat out all of the waste!
De-stress in any enjoyable fashion…very important, especially after a treatment of any sort.
Foods…try to eat organic, non-gmo, un-hormoned…lot’s of healing foods like: apples, beets, carrots, onion, garlic, spinach, bitter greens and all the cruciferous vegetables (broccoli, cabbage, brussel sprouts.)
Supplements…I do take D3, cod liver oil, curcumin, C, B’s, and EGCG(green tea).
Of course check with your doctor or health practitioner, but, this is what I did and my ginormous ablated fibroid was un-detectable within just a few short months. I firmly believe in HELPING the body (on “loan” to you) do it’s best job…the miracle of “running like a well oiled clock!”
Be well, you definitely have a hand in it!!

I had an opportunity to sit down tonight with Erin who will be participating as a patient advocate on the panel.  Erin’s story is one that will resonate with many women - the trials and tribulations of finding doctors who would listen, fighting insurance for reimbursement for Focused Ultrasound and attempting to function on a day-to-day basis with a uterine fibroid that had a mind of its own.

What stood out the most from our conversation was, quite honestly, how generally OBLIVIOUS the medical community is in regards to treatment options for uterine fibroids. It’s either the dreaded “H” word, or perhaps the recommendation of another invasive treatment, such as a myomectomy, that may not be the right treatment option for that particular patient.

So what can you, the patient, do to help affect change? It’s simple. Print out the treatment options chart.  Take it with you on your next appointment with your family doctor or OB-GYN and discuss the information on the chart with them.  Even leave the chart with them.  Perhaps this simple step will not only help you find the right treatment option but it may impact, in a very positive way,  your practitioner’s ability to properly treat other women suffering from uterine fibroids in the future.

Until next time,

Tina

“It appears to me that we have arrived at a point where we need to ask  ourselves whether we can continue to do without a national food policy, whether the developing information relating poor diets to chronic disease, coupled with escalating health costs in the United States doesn’t provide us enough of a sense of urgency to inspire us to develop a national food policy to harmonize our various policies on agriculture, nutrition, food distribution, nutrition information, food advertising, and all other aspects of the food system.
What we need is a renewed commitment to GOOD FOOD, as opposed to food analogs, as the basis of our natural diet. The focus of an American food policy should be to expand choice among an increased diversity of FOODS (as opposed to products.) A poor selected diet composed largely of denatured foods, no matter how fortified or how supplemented, is still a bad diet.”

Guess when this was written? Shamefully, I tell you…1976…1976!!! On those old-book-smell pages of sepia-colored paper, filled with my scrawled margin-’o-notes, is a book chocked-filled with healthy information dating from 1976 ( 36 years ago.) I realized that as a collective people we have made NO progress, but rather have degressed into a sorry sorry state of  nutritional obfuscation and dumb dumb dumbness, that sadly has resulted in our chronic ill-health!

What does this have to do with fibroids? Well,  EVERYTHING!!  Fibroids, and heart disease,  and diabetes and obesity, and cancer are all becoming the NORM in our society…they are considered “chronic dis-eases!” And to be brutally honest, if this chronic-state of ill-health continues, it will bring our country and our healthcare system (such as it is) to an untimely demise.
Gosh just think, that if we  heeded the prescient and doable warnings of those “health food nuts” (of which I was then and am proudly still,) we would now all share the same health-focused mindset!!   This healthy plan dictates  pro-active  preventitive care, and NOT sacrificing ones health at the eating-alter of crap-ola analog food, as-well-as consciously avoiding the rest of the poisons that bombard the body daily!!
I firmly believe that the best defense is a good offense! And it is soo simple to accomplish:
1. Buy and cook real food…not canned or packaged or plasticized analogs
2. Store and cook and drink from/in glass or stainless steel (cast-iron too!)
3. No fragranted products (unless real essential oils,) as they are known endocrine disrupters
4. Buy organic when possible (non-GMO.)

YOU, have the power to change YOU. And in so doing,  your pocketbook and purchasing-power becomes your vote. Let’s not wait for another 36 years to pass unmindfull in  how we nourish ourselves.  If enough of us/YOU combine this effort, that will send a loud signal to the powers-that-be, that we are tired of being poisoned for a profit! So for YOUR well-being, in being well and staying well, there is another “ancient “quote from the 1970’s that also rings true for us today, “You are what you eat!” ♥

So, I’ve taken to funneling these rants into reading and learning more about the reform initiatives but more importantly, how I can be one of the many that together can affect change in this system for women.  The National Women’s Law Center has some fantastic facts and information, as well as ways to get involved by Contacting your Congress-person.

I was particularly interested in their Why Women Need Health Reform Fact Sheet that emphasizes that “Women Struggle to Find Coverage for the Benefits They Need”….most of you out there know exactly how true this concept is….sigh….

I think we may have found ourselves a great group to partner with on this….more to come…

Joy

http://www.awomanisnotapreexistingcondition.com/

F ~ Found a walnut size invader…a fibroid Darth Vader, forsooth!
I ~ Imagination had me reeling from this lump. Not so funny where the minds-eye takes you with an unknown
             bump!!
B ~ Boy was I relieved, “only a fibroid in there.” Boy was I wrong “only a fibroid”…such despair.
R ~ Really really starting to experience the symptoms. Like  high-pitched outta tune violin strums!
O ~ Oy, beyond annoying, painful indeed! This once teeny tiny fibroid seed.
I ~ I have to do something, for its growing and growing. But what? Ugh, all this unknowing.
D ~ Dr. #1 visit, Dr. #2, Dr. #3… all recommended a hysterectomy!

R ~ Ran out of Dr. #4’s office at lightening-speed. Again, a Dr. not thinking of my (apparent) need!
E ~ Elapse of time grew, so too that ferocious fibroid. Please! Save my uterus from becoming a void!
L ~ Languishing of time, with nary a treatment option…at least not one that I would not shun.
I ~ Invasive treatment options are not for me. Is no one listening?! Can no one see!?
E ~ Each passing day turned quickly to years. A small glum sadness had me free-flowing the tears.
F ~ Fibroids are troubling and so dang pervasive. My gosh, not one Dr. had info persuasive.

A ~ All my web-searching seemed so invain, until…finally the FDA put HIFU in the game!
T ~ This looked to me like something I could do. A solution to my decade of much-ado.

L ~ Love love love the idea, of closing this long unhappy chapter. If HIFU is IT, I will cheer from the rafters.
A ~ And so I made the appointment to see, if focused ultrasound is the right treatment for me.
S ~ Suzanne Le Blang, my DR., told me “We can ablate this, using my background…radiology!”
T ~ Terrific! She did it! She ablated with HIFU my football-sized lump. I raised my arms high, did a fist-in-the-air excitement pump!!

The fantabulous news for all of you that have found FibroidRelief.org, is that you are able to cruise around this site and find all of the information that you will ever need…when it applies to FIBROIDS! And, don’t forget about all of the up-coming (global) events…Fibroid Relief  At Last…[sigh]…at last!!

A recent study conducted by Fibroid Relief Advisory Board member, Dr. Suzanne D. Leblang and her colleagues at the Department of Radiology at the University Imaging-Guided Therapy Center in Boca Raton, Florida demonstrated significant ablation and shrinkage of uterine fibroids when treated with MRI-guided focused ultrasound.  Among a group of 80 women, ages 34 - 55 years old, treatment outcomes included an average volume reduction between 25% and 55% immediately following the treatment.  Six months after the treatment, patients experienced an average volume reduction between 28% and 31%.

In a nutshell, the ablation and considerable shrinkage of the uterine fibroids provided these women with almost immediate relief of their symptoms.  In the long term, treatment with focused ultrasound can provide patients with improved quality of life, decreased time away from work and less of a burden on the healthcare system.

Fibroid Relief is dedicated to helping patients who chose focused ultrasound as their treatment of choice navigate the healthcare system and secure coverage for the treatment.  Access to focused ultrasound treatment for uterine fibroid sufferers should be expanded and fully reimbursed to provide women with yet another choice in their health care options.  To better assist you in this process, we are in the process of developing tools for you to use to approach your insurance companies for full coverage.   More to come on this soon!

If you would like to learn more about the benefits of Focused Ultrasound for treatment of uterine fibroids, we encourage you to watch the following video presented by our industry partners, Insightec and GE Healthcare.

Until next time,

Tina

Every single doctor that I consulted, regarding my fibroid, wanted to give me a hysterectomy. Every single one. Prior to my consults with these doctors, I was excited about the prospects of talking about alternative approaches to treating this giant fibroid-invader. And by alternative, I simply mean, something other than the dreaded hysterectomy! But that was my agenda, not theirs! They, each ‘n every one, wanted to perform the hysterectomy.

Another very curious aspect of my confabs with these doctors, was that not one of the 7 doctors ever looked me in the eyes. Not one! They had a pad before them and were constantly scribbling…for sure, not listening to ME! I really wanted to scream that “I am more than my condition! I am more than just my uterus!!”  But they could only see their agenda…hysterectomy! I did not exist!

With each new doctor I found myself more frustrated than the last…almost speed-talking, so as  to get out all of the information that I wished to discuss. Most scurried me along, as if I was wasting THEIR  time with MY needs! No one was listening to me.

Two doctors actually planted the “scare-seed” in me, and flat out said (without any clinical testing) that it is cancer. Cancer!! I knew it wasn’t cancer ( I lived with it for so long,) but they had the heartless-bed-side-manner to fill the air and my soul with this very debilitating poisoned-thought. They used this tactic to scare me into the operating room…but I stood fast to my core beliefs and held tight to my “hope” that I could find a doctor that would listen to me.

From the very first meeting with Dr. LeBlang, a sense of comfort came over me. She warmly greeted me, and before I knew it, we had an hours worth of information exchange. I finally found a doctor, a coach, that would/could get me to the finish line with my uterus (and my sanity) intact. Dr. LeBlang worked with me, not against me as the previous doctors had done. Dr. LeBlang  happily guided me through my questions and concerns, and in those months of  back and forth discussions, she never once pressured me into anything. She allowed me to conclude for myself (with much thoughtfullness) and together as a team, we got the “job” done.

My purpose in this blog, is simply to encourage you to find a doctor;  that will guide you, that will listen to you, that  will share ALL the information with you, that will act as your coach, that will happily be on YOUR TEAM! Team work is the the sure way to “beat” this.

The worth of any lifetime is measured in kindness.♥