Now that spring is about to “spring” back into our lives, this might be a great time to shed your endocrine-riddled cocoon of dust and transform your home into a butterfly of chemical-free beauty! Happy dusting!!

No symptom of my fibroid has been or is more upsetting to me than the massive loss of blood I suffered as a result.  In the last four years blood has caused me to change my entire lifestyle in preparation for its unwanted appearance 7-14 days a month, in the least ideal of circumstances.  It began by systematically destroying all my favorite panties, trousers, sheets and pajamas, leaking out of the largest tampons on the market in barely an hour, and over the thickest pads I could comfortably walk in, and onto my office chair (which thankfully was black), forcing me to make up excuses to leave work early, my coat wrapped around my waist, so nobody would notice the stain as I walked out the door.

Blood caused me to purchase enough pairs of black pants to make my friends believe I was reliving my gothic phase from the eighties, as it continued to wreak havoc on my wardrobe and love life.  If a potential boyfriend invited me to his place for a drink, I would find myself having a panic attack over whether or not his bathroom would have a garbage can (I found out that most bachelors do not), and if it did, whether there was any discreet way to dispose of my increasingly embarrassing shame without the guy obviously noticing it later.  Blood drained me of all my energy during the day, as my hemoglobin and hematocrit levels began bottoming out, and blood robbed me of my sleep, as I had to get up to change my tampon and pad every hour throughout the night at the beginning of each monthly cycle.

One day, blood finally caused me to wake up and realize it was time to act, as I became so anemic I nearly fainted during an easy hike through LA’s Runyan Canyon on a sunny March afternoon.  I didn’t know at the time, that blood (or rather the loss of it) was again the culprit, as I thought I was merely dehydrated, and just needed a bottle of water and to rest.  Later, I realized how thirsty I had been in recent months, never seeming to be able to drink enough water throughout the day, and getting up throughout the night to refill a large 8 oz glass next to my bed.  Tests would confirm my severe anemia, and a trip to the OB/GYN would confirm the fibroid had grown, and it was time to act, to stop this blood from its determined method of escape, once and for all.

The first step was to take care of the immediate situation, which was to restore the blood that had been lost.  My hemoglobin was so low, I was in danger of heart failure.  At the suggestion of my OB/GYN, I went to Cedars Sinai for a blood transfusion.  This was a much more difficult process than it should have been, and neither my primary care doctor nor my OB/GYN were the least bit helpful in guiding me through the process.  I was feeling crappy, run-down and scared, and I should not have had to make fifty phone calls, and get sent to five different rooms in Cedars, just to get transfused.

Ultimately, I ended up having MRI Guided Focused Ultrasound to treat my fibroid, and to help stop the bleeding (more on that in subsequent blogs), but I can honestly say I tried just about everything out there in between to control my heavy periods, and I am sure that most of you who have fibroids will be able to relate.  These are a few things that helped me or at least that worked for a time, and I welcome comments from anybody who wants to offer additional advice for dealing with heavy menstrual flow from fibroids:

1).  Playtex Ultra Tampons. They are the biggest ones out there, but sadly, many drug stores don’t even carry them!  I always wear a small maxi pad as well, just in case of additional overlflow/accidents.

2).  Only wear black underwear and pants on the days right before and during your cycle, and keep an extra pair of underwear and pants in a bag with you, just in case of accidents. It seems simple enough, but there were so many times I convinced myself I would be okay to wear jeans just this once, and ended up sorry that I did.

3).  Birth Control Pills. I tried various brands like Loestrin to help reduce my flow, some of which helped for a time, but remember there are side effects to deal with for most women (weight gain, mood swings, spotting, loss of sexual appetite, etc.).

4).  Acupuncture and Chinese herbs.  Twice a month visits to the acupuncturist and daily doses of herbs helped shorten my cycle and decrease the pain from cramping.

5).  Eat iron-rich foods, such as beans, Life cereal, and red meat.  Know which foods are iron inhibitors (red wine, coffee, spinach, fiber), as this will affect when you eat the iron rich foods and what you eat them with.  This really did help to increase my hemoglobin, and even though I am not a big fan of red meat, I now force myself to eat a burger or a steak at least once a week.

6).  Take iron supplements. These are hard on the tummy, so take a slow release form, such as Slow FE, and be sure to also take lots of fiber (but not at the same time as you take the iron, as it will inhibit your body’s absorption of the iron).

I hope this was helpful, and remember, when you are feeling fatigued, embarrassed or hopeless from heavy blood loss, you are not alone!

Erin

The study showed that out of 119 patients that were treated with Focused Ultrasound, 97% reported improvement in their symptoms, and 90% reporting their improvement as either considerable or excellent.

To read more, click here.

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/