We recently posted a video of Dr. Sue Zaher, a gynecologist in the U.K., discussing uterine fibroid treatment options. She talks about the lack of information offered to patients on the full range of treatment options. An advocate for focused ultrasound, Dr. Zaher explains how this treatment is truly non-invasive.

Check out other Fibroid Relief videos - including a number of patient stories.

After my first FUS last May, I had instant relief of pelvic pressure, and after a few menstrual cycles, the length of my periods decreased.  But I was still having three to four days of heavy flow, and I was still taking iron pills to avoid anemia.  The iron pills upset my stomach, and were just generally annoying to have to remember.  Six months after the first FUS, I also started to have an embarrassing side effect of leaking clear fluid, requiring me to wear a tampon or a pad 24/7.  I felt like the Scarecrow losing his stuffing.  I spoke to yet another OB/GYN, who like all the ones before him, did not support the FUS procedure, and seemed almost to gloat in my misery, stating, “I’m not surprised this happened.  I tell my patients this procedure is not ideal for heavy bleeding.”  He recommended Uterine Artery Embolization (UAE), a procedure he himself performed regularly.  That seemed like a bad option to me, after reading that one of the possible side effects of UAE was that a submucosal fibroid (which mine is) could make its exit in increments through the cavity of the uterus.  Considering I was already experiencing a leaking uterus, I didn’t think it wise to add to the flow. 

After participating in the Los Angeles panel on Fibroid Relief in late April of this year, I went for a drink with Jade, a former advocate for the organization.  She had heard me tell my story and was familiar with everything I was going through.  Jade mentioned to me that many women who have FUS go back multiple times, in order to treat the entire fibroid, if the radiologist or OB/GYN is unable to Exablate 100% on the first round.  I was encouraged at Jade’s suggestion.  However, Anthem Blue Cross had denied payment of my prior FUS treatment, even after an appeal and a third party review, so I was almost certain they would not cover the procedure a second time.  I gently pushed away the possibility of getting back over the rainbow.

A week later, I met and fell for a great guy.  This guy didn’t know anything about my fibroid, and so like the Wizard himself, he gave me hope.  I realized that I had let my fibroid dictate my psyche, as well as my body, for the last two years and it was time to move forward and be happy and healthy once more.  I called Dr. Raman at UCLA and explained to him that I wanted UCLA to do the FUS again for free, as it had never been a complete success — part of my fibroid had not been treated, and I was having a major side effect.  Dr. Raman was very accommodating, suggesting I send an email to the person in charge of financing, and that he thought it was actually a possibility.  Two weeks later, I got my response:  UCLA would do it at no cost to me! 

It has been nearly three months since my second FUS, and I am four months into dating the Wizard, and I finally feel like I’ve come back home.  My cycles are much shorter, and much lighter, and my side effect has stopped.  There’s no place like home.

The toolkit features sample letter templates and helpful tips, such as how to work closely with your physician to appeal a denial by a health insurance plan and how to request an external review by a state insurance commission.

Registration is required to download the toolkit.  As part of Fibroid Relief patient outreach efforts, a member of the Fibroid Relief team will follow up with each patient to determine if the information has been beneficial in their efforts to secure coverage for the treatment.

As Fibroid Relief gets ready to celebrate its second anniversary, we would like you to tell us what it would mean — or does mean — for you to have Freedom from Fibroids.  To participate in this campaign, you have the choice of responding in an e-mail or a video with an answer to either of these questions:

If  I were free from fibroids, I would …

or,

Now that I am free from fibroids, I …

Your answer doesn’t have to be long. Just a sentence or two for the written version will be just fine. If you would like to do a video, feel free to make it a little longer and tell us your story. Videos can be as long as three minutes, but even the shortest videos are welcome. Please send the e-mail to Tracey Daniels at Fibroid Relief, tdaniels@fibroidrelief.org, or post the video to You Tube and send us the link at the same e-mail, by Monday, September 13.

We would like to use your responses on our web site, on Facebook, and possibly in publications in order to share YOUR voices about YOUR experiences with — or hope for — Freedom from Fibroids. We apologize that, depending on the number of responses, we may not be able to use all responses. 

In order to make sharing your voices more personal, we are also asking for you to submit an optional headshot photo. The picture may or may not be used in conjunction with your quote. No last names will be used with the quotes or photos.

We look forward to hearing your responses. Thank you for your willingness to share and potentially help other women who have yet to seek their “independence!”

 Your Friends at Fibroid Relief,

 Tina and Tracey

Dr. Bruce Lee

Tina and Jade had the pleasure of meeting Dr. Bruce Lee, co-founder of Halt Medical, at the American Congress of Obstetricians and Gynecologists’ (ACOG) Annual Meeting in San Francisco in May. Dr. Lee is the inventor of the Halt Fibroid System, which proposes to use radiofrequency ablation to treat fibroids. Since we receive many patient inquiries regarding access to low or no-cost treatment options, we are excited to share with you that researchers are currently recruiting women for clinical trials on this device.  

Although the device is pending FDA approval and not expected to be on the market for about 18 months, women who are eligible can receive the treatment free of charge through a clinical trial in nine U.S. sites and Mexico and Guatemala. A particularly important feature of the treatment device is that it proposes to treat fibroids of any size and in all locations.  For information on locations and eligibility criteria, please click here.

We will continue to let you know about the progress of this new treatment option and others.

On the eve of its 37^th anniversary,  Jaslok Hospital and Research Centre in Mumbai announced in early July  that it was launching the era of non-invasive surgery in India by opening the country’s first MR-guided focused ultrasound facility.  Patients from India and neighboring Southeast Asian Countries will now have access to this non-invasive treatment option. 

Dr. Shrinivas Desai, the hospital’s Director of Imaging and Interventional Radiology, noted the pioneering nature of the center.

“I believe this is just the first step,” Desai added, “and with more developments coming our way, I am sure we will usher in a non-surgical era of cancer treatment and other targeted therapies.”

Jaslok Hospital will also conduct research and clinical trials for breast, liver and bone cancer.

“Fibroid Relief has already be contacted by a patient in India, requesting additional  information on focused ultrasound as a treatment option for her uterine fibroids” commented Tina Krall, Executive Director, Fibroid Relief.  “We’re excited about the prospect of more patients around the world having access to this amazing medical technology that will have such a positive impact on their health and wellbeing.”

In my first month, I’ve also been grateful to hear stories both directly and indirectly about the harrowing ordeals women face as they deal with uterine fibroids. As a woman, I can empathize on many levels. However, I cannot imagine what it would be like to have excessive bleeding, severe pain, or an enlarging of my uterus because something unwanted is growing inside. I’ve also never been in the position of having to choose between recovery or fertility. Even if fertility didn’t matter to me, I would not want to have my uterus removed or severely damaged. I am astounded by what so many women suffering from uterine fibroids have to go through — every day.

The good news is that many women do not have to make this choice between recovery and preserving their womb. Certainly for some women, a hysterectomy may be the right choice and may help them to live a fuller and healthier life. But for many, a non-invasive or minimally invasive treatment option will be the best decision. The main thing is that you have a choice. And I feel honored to have the opportunity to help make sure that women do have that choice.

Tracey

Fibroid Relief conducted its third and most successful free public information event on uterine fibroids on April 27 at the Marriott Marina del Ray in Los Angeles. Over 125 women attended “Fibroid Relief At Last,” an interactive program featuring UCLA clinicians, a naturopathic doctor and well-known patient advocate, Erin. “We received very positive feedback from participants,” says Tina Krall, executive director of Fibroid Relief. “The audience asked a lot of amazing questions and many of them stayed after the program to engage directly with our panelists.”

Krall said one participant was so moved by the information she received that she planned to cancel an upcoming hysterectomy and explore treatment options discussed at the event.

“She had no idea that other treatments were available and might offer better outcomes for her,” Krall explains.

Fibroid Relief At Last events educate women about uterine fibroids and current treatment options, including focused ultrasound. Previous programs were held in 2009 in Chicago and London.  The LA event was also the first to include a discussion of alternative medicine. “Fibroid Relief is a patient-centric organization. We added this topic because of the interest level indicated by questions submitted by patients to our website and Facebook page,” Krall notes. “Questions asked at the event indicate that women are interested in using complimentary and natural therapies in tandem with traditional medical treatments. Adding a naturopathic doctor to the program really rounded out the spectrum of treatment options available today.”

Click here to sign up to receive updates on the location of our next Fibroid Relief At Last Event.

Tina Krall, Executive Director of Fibroid Relief, recently interviewed Sarah Murphy, N.D., L.Ac., a panelist at the Los Angeles Fibroid Relief At Last Event.  We wanted to learn a little more about her natural approach to treating uterine fibroids and how she became involved with naturopathic medicine.

Tina: How did you become interested in alternative medicine?

Dr. Murphy: During college, I discovered a holistic way of viewing the world and the power of natural healing.  It was so profoundly helpful to me and my life that I quickly changed majors, entered the pre-med track, and applied for naturopathic medical school so I could share this wonderful and hidden secret of a medicine with other people.

At what stage in the treatment process are most women when they first come to see you?

The women I see are at various stages - from undiagnosed to newly diagnosed - to exploring options to post-surgery and fibroids have recurred.  However, patients who usually come to see me have already been diagnosed and are exploring treatment options, with particular interest in alternatives to surgery or something holistic and natural.

What tools do you typically utilize to make your diagnosis?

The diagnostic tools and standards I use are the same as an MD gynecologist -  based on symptoms, gynecological exam signs, and referral out for ultrasound imaging of the area.  Additionally, I use alternative medicine exam techniques such as Chinese tongue and pulse diagnosis, and may run additional labs to test anything else that I suspect might be a health issue for the person and a factor affecting the fibroids.

How is your approach as a naturopath different than a traditional clinician?

My approach is unique because I look at the whole person’s health picture and treat and balance the whole body at once (not just about the fibroids).  Everything is inter-connected in the body system from a holistic medical approach.  This is a natural treatment approach without drugs or surgery.  Instead, therapies such as nutrition and natural supplements, herbal medicine, homeopathy, acupuncture, Chinese herbs and lifestyle counseling are utilized.

What are some simple and natural steps women can take who are in the ”watchful waiting” stage?

Exercise, Sleep, Play, and Relax more.  Eat a Healthy Diet with Fresh, Whole, Organic Foods.  Eat less meats and dairy and more fruits and vegetables.  You can also take proteolytic enzymes on an empty stomach to decrease inflammation and fibrous tissue build-up in the body.

Tell us one fun fact about yourself.
I love to dance. My past career path was a dancer. All styles are fun… samba, salsa, ballet, anything, you name it… I want to try it!

Dr. Sarah Murphy is a board certified and licensed Naturopathic Doctor and Acupuncturist in the state of California.  Dr. Murphy completed her naturopathic medical training at the National College of Natural Medicine in Portland, Oregon and received her Master’s in Acupuncture and Chinese Herbs from the Academy for Five Element Acupuncture in Gainesville, Florida.  She currently enjoys consulting with people about their health at the historic and reputable Santa Monica Homeopathic Pharmacy and working with patients in her private practice at Lotus East-West Medical Center in Santa Monica, California.

The event will be held on April 27th, 2010 at 6:00pm at the Marriott Marina del Ray - Bayview Ballroom and Patio. There will be a panel of expert speakers including:

Dr. Chris Tarnay (Gynecologist)
Dr. Michael Johnson (Gynecologist)
Dr. Steve Raman (Focused Ultrasound)
Dr. Cheryl Hoffman (Uterine Fibroid Embolization)
Sarah Murphy N.D. (Holistic Medicine)
Erin Shull (Patient Advocate who will share her story)

Register: