As sad as this is, there is also something beautiful and inspiring that has evolved from this situation.  My aunt, an amazing caretaker, struggling to understand what her mother was going through and to help her, proactively looked for answers.  With very limited resources available on the island, she realized quickly that other families were also struggling to understand the complexity of the disease.  Wanting to help my Oma, herself and other families, she took the first step to start a chapter of an Alzheimer’s/Dementia awareness organization – for an island region with a total population close to 400,000.   I’m excited to say that their chapter now has over 120 friends on Facebook and is making an impact on patients and families in this remote area in Venezuela.

So my message today is that ONE person can make a difference.  Fibroid Relief becomes an even more vital resource to other uterine fibroid patients when other patients take the time to share their story, comment on a Facebook post or even step forward to organize and informal support group in their community.  For anyone struggling with a health issue, whether it is dementia or uterine fibroids, having a support system is incredibly powerful and meaningful.

Take action – do something today to help yourself and another woman suffering from uterine fibroids.

Until next time,

Tina

P.S.

Oma, this one is for you.

The lasting effects of physical and sexual abuse on a victim are profound.  However, this is the first research I am aware of that shows a direct correlation between abuse and the development of uterine fibroids.  The research demonstrated that the risk for fibroids increased from 8 to 36 percent among those with the mildest to most severe cumulative abuse in childhood.  These numbers are significant and certainly cannot be ignored.

I am hopeful that continued research, such as this study out of Boston University, will shed light on additional environmental and social factors that influence the development of uterine fibroids that affect such a large portion of the female population.

Until next time,

Tina

The one thing we know for certain is that uterine fibroids are a problem that generally affects women regardless of socioeconomic status and age — to an extent (women as young as their late teens are being diagnosed).  I’ve recently been very touched by the devastating images of flooding and disaster in Pakistan.  I often think to myself, beyond the need for basics such as food, water and shelter, what do women with uterine fibroids do in these situations?  They have no access to sanitary hygiene products or pain relievers — some of the basic comforts that other women can turn to in order to help them deal with excessive bleeding or pain caused by their fibroids.

Thoughts like these motivate me even more to get the word out about the mission of Fibroid Relief.  Women around the world DESERVE to know about all of their treatment options for uterine fibroids and most importantly, they DESERVE to have access to all treatments, especially those that are minimally or non-invasive and uterus-sparing. There is much work to do.

If you’re reading my blog, I hope you’ve felt the spark, too.  Here are a few simple things you can do:

• Join one of our new geographically-based Discussion Boards – help women in your local area who have been recently diagnosed – share tips, love and support!  Email us if you are interested in creating a new Discussion Board in your area or country.
• Tell other women in your life about Fibroid Relief – someone you know has fibroids. Encourage them to embrace change, stop suffering and seek RELIEF! Our Patient Stories can provide hope!
• Download our new Reimbursement Toolkit and learn some helpful tips on how to work with your health insurance company to secure coverage for focused ultrasound.

Looking ahead, I envision all of us participating in a truly GLOBAL conversation about uterine fibroids. The future is in our hands – please help to light the fire and spark the discussion about finding RELIEF from uterine fibroids!

Until next time,

Tina

I have come out of this experience a much more educated patient.  Hopefully some of the lessons I have learned will be helpful to you.

A week after my laparoscopic minimally invasive surgery, I developed some post-op complications.  In a nutshell, I received the run around from my surgeon’s office after I called to make my post-op appointment.  My surgeon was “on vacation” and I was told that there was no one else available to see me – interesting that there were NO OTHER surgeons available in the entire hospital. Hmm.  Also, I was told that it would be very difficult for me to see her after she got back from vacation.  I was fortunate that my primary care physician, whom I highly respect and trust, took care of me immediately.  It turns out that I probably had a post-op infection (which is of another concern in itself).

I’m still having some residual pain and look forward to finally seeing my surgeon this week (almost three weeks after my surgery).  Thanks to a colleague of mine, I was fortunate to be able to express my concerns about the poor quality of care I received directly to the president of the hospital.  He expressed genuine concern and emphasized that he would do his due diligence to see that this issue was addressed internally.

Here are a few lessons learned:

• You have to be an advocate for your own health – no one else will do it for you. I cannot stress this enough.
• You have a right to ask questions – no question is silly or unimportant.
• Voice your concerns – if you don’t report any issues that arise, then these issues will never be addressed or resolved.

By being an advocate for your own health, you may just save another patient from unnecessary pain, complications and overall frustration in the future.  I hope that is the case with my situation.

Until next time,

Tina

p.s. Here are a few websites that offer additional tips on how to be a better advocate for your health - please check them out!

Every Patient’s Advocate

Patient Empowerment at About.com

Over a decade ago, my mother avoided having a hysterectomy due to uterine fibroids.  Many of the conversations I have had recently with patients bring back memories of conversations I had with my mother years ago. She had been proactive and found a physician who was open to working with her to spare her uterus.  She was only in her mid to late 40s at the time (so young). However, until I interviewed for this position, I was unaware that my grandmother had had a radical hysterectomy thirty years earlier due to fibroids as well.  And when I mean radical, I mean RADICAL.  My mother recalls my grandmother having to leave church one Sunday, blood running down her legs, soaking her dress. But no one said a word. It just wasn’t discussed.

With this family history, it makes me wonder, why at age 38, have I been clear of fibroids up to this point? I feel very fortunate.

Uterine fibroids are an interesting thing.  There is a clearly a genetic component since they appear to run in families.  However, solid research is lacking to help explain why some women in one family develop fibroids and why others do not.

Researchers at the Center for Uterine Fibroids at Brigham and Women’s Hospital in Boston are looking for female relatives to participate in a clinical research study to help identify the causes of uterine fibroids.  If you are interested in contributing to this study, please click on this link for more information.

This is a wonderful way for you to give back and possibly help researchers identify some of the genetic markers that are just waiting to be discovered.  Perhaps this research will help our daughters and granddaughters be spared some of the suffering our relatives, past and present, have endured and continue to endure.

Until next time,

Tina

In my ideal world, I would have liked to have seen many more treatments and drug therapies for uterine fibroids.  Considering the prevalence of uterine fibroids and the frequency in which gynecologists treat patients with fibroids, I was disappointed by the lack of attention placed on such a significant women’s health issue.  Someone is clearly not paying attention!

But some good news – I was wrong.  There are a few people paying attention.

Halt Medical is currently in clinical trials for a new minimally invasive treatment designed for use by gynecologists that will utilize volumetric radiofrequency ablation to treat fibroids.  This would expand treatment options currently available and give you, the patient, a possible new option.  I watched a simulation of this laparoscopic procedure and it was quite fascinating.  We’ll be posting more information about this very soon, including information on how to find out more about their clinical trials.

There is also a new FDA approved non-hormonal therapy available to treat heavy menstrual bleeding – tranexamic acid tablets marketed under Lysteda.  Lysteda works by stabilizing a protein that helps blood to clot.  Studies have shown that the therapy can provide significant reduction in menstrual blood loss which may be of HUGE significance to many women suffering from uterine fibroids.  I would encourage you to ask your physician about this therapy to see if it could work for you.

Remember that there is HOPE for uterine fibroids and you can find RELIEF.  We’re committed to keep you up-to-date on all the latest developments with new treatments, as they become available.

Until next time,

Tina

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

I never was one to look at the numbers, but they are astonishing!  Approximately 30% of women in the United States have symptomatic uterine fibroid at any given time – and 60% will have had them by the age of 50!  The numbers are even higher for African American women – who are 2/3 times more likely to develop symptomatic uterine fibroids.  If you do the math, we are talking about a lot of women.

As a new member of the Fibroid Relief team, I  just read an article that announced that The National Institutes of Health (NIH) committed approximately $40 million research dollars in 2009 to comparative effectiveness research involving medical devices.  A very small portion of these funds is going toward a study on UFE (uterine fibroid embolization) vs. focused ultrasound treatment for uterine fibroids.  These are two minimally-invasive treatment options that have already, or will provide many women with life changing relief from their fibroids.

The Federal Government is starting to listen but this is only a SMALL drop in the research funding budget for a medical disorder that affects millions of women.  These are mothers, sisters, aunts, grandmothers and friends whose quality of life are affected on a daily basis.

We at Fibroid Relief are taking your stories, your questions and your concerns,and sharing them with representatives in the healthcare research community on the federal level and beyond.   Our hope is to make a positive impact that will ultimately result in greater funding dollars to uterine fibroid research AND bring much needed visibility to this disease as a major health issue for women.

Talk with you soon,

Tina K.