My fibroid journey...

My fibroid journey…started over 4 years ago, in 2012.  Well, it actually started earlier than that when the first two dime sized fibroids were found in 2009.   In 2012, I would say there came a decision point.    That was when I started “showing,” i.e. my fibroid had grown enough to the point of making my belly protrude. In fact, it eventually got to the point that friends and family even asked whether I was pregnant.  According to doctors, its growing size was an accident waiting to happen as far as risks to my health. 

As you might imagine, it was difficult for me to reconcile my healthy lifestyle and my role as a health coach with the continued growth of my fibroid!  I struggled with how this could have happened to me?!?  Helping people become healthier is what I DO!!  In some ways, I was lucky…I guess.  It was, as it turned out, one, extremely large fibroid and not several small ones.  I did not have many of the typical symptoms; no significant pain, profuse bleeding, frequent urination, constipation or pain during intercourse.  Quite the opposite, I had regular bowel movements and “normal” urination, enjoyed a healthy sex life, and remained generally active.  Most doctors attributed it to the fact that I ate well, was extremely active and was in excellent health (according to the “numbers,” i.e. consistently “normal range” readings for blood pressure, weight, cholesterol and no apparent diabetes or heart disease risk).

The Holistic Route

So, starting in 2012, despite a lack of symptoms, I was confronted with the increasing, riskier size of my fibroid.  As a result, as a holistic health coach and wellness practitioner, I got more aggressive in researching and using holistic fibroid treatment methods; I began doing castor oil packs, taking herbal supplements, drinking herbal teas and doing meditations that were suggested for shrinkage of fibroids.  I was already careful with what I ate (already a vegetablarian) and drank (especially alcohol) and how active I was.  Especially because I noticed that my fibroid would seem to swell when I was not eating and drinking well or being active.   Conversely, it would shrink back when I was on my usual regimen of mostly vegetables and no alcohol.   My fibroid would also be swell or shrink at various stages of my cycle.  For better or worse, I was able to notice these changes in my fibroid because of my smaller frame.   So, in some senses, it seemed that I was “managing” my fibroid, in that it would swell and shrink and did not seem to be changing greatly. 

However, even with the holistic treatments, I was unable to shrink it significantly.  Given its size, I came to understand from my research that I needed to do just that, shrink it significantly, or remove it, in order to avoid the additional health risks from having a mass of this size in my abdominal cavity.   There were two key things that helped me come to my final conclusion to pursue Western medicine alternatives.  First, in the midst of all of this, in late 2014, although I still did not have typical symptoms, I experienced an incident where my entire lower body swelled significantly and uncomfortably for a week; after a visit to urgent care, a CT scan showing the significant size of my fibroid and with no conclusive alternate theory, it was attributed to my fibroid.  Second, I read a mind-changing blog called “When A Healer Gets Fibroids.”  As a holistic health coach, a believer in and practitioner of alternative healing methods and someone who lives a generally healthy lifestyle, it was triply frustrating that I could not shrink my fibroid holistically.   The writer of the blog shared my frustrations and, through her reflections, reassured me with holistic reasons why I should consider surgically removing my fibroid (instead of shrinking it).  It reminded me that, in a holistic sense, the fibroid represented past blocked creativity and relationship hurt and, given that, I could actually appreciate my body for collecting those blocks and hurts into a benign tumor and, serve my highest good symbolically by physically removing it.

The Western Medicine Route

Now feeling that I had exhausted my options for shrinking it holistically, and that surgical alternatives might be in my best interest, my search for the right Western medicine alternative and doctor began… Because I had previously researched fibroids and alternative treatments, I had already learned a great deal about them, and about the plethora of traditional medicine options available.  Two of the most important features I had to consider with these options were preserving 1) my womb/uterus and 2) my ability to have children.  I was crystal clear that I wanted to preserve my womb; from a holistic perspective, it was important to me that we only remove what was absolutely necessary.  I also knew that (and was reminded by several doctors), by preserving my uterus, there was a risk of potential fibroids in the future.  I was willing to take that chance because I was committed to including a new path in my work and life for additional research, work and growth to ensure that did not happen (for me and others).

On the second question, whether I wanted to preserve my ability to have children, I was much more flexible and I am sure many women can relate to my predicament.  This was because, at that time, I was a 42-year-old woman who had not had children, not due to a lack of desire but a lack of what I called “the right situation.”  At 42, I knew the chances of that “perfect storm,” the right situation + me conceiving (AND carrying), were small.  I also knew that, if I did nothing, (and waited for menopause to shrink the fibroid) the chances were even smaller.  I think most doctors believed they were making it easy, asking(?) AND immediately answering that I couldn’t possibly want to have children at my age or, even more insulting, that having a child given my age and relationship status was unlikely so I should just give up.  Interestingly, this pessimistic conclusion was usually accompanied by the singular recommendation that I have a hysterectomy, giving up (on) both my womb and children entirely, despite the fact that there were other options that would at least honor/preserve one (my womb) if not the other (children).  In fact, hysterectomy was, as I learned over time, an all too common attitude and approach.     

My Search for Doctors

I know it seems like it should be easy to find – a doctor that listens to what you want and advises you based on that.  After all, when I read about descriptions of the treatments, most information I found focused on what the patient might want.  However, most of the doctors I saw did not ask what I wanted and rushed to a solution, in my opinion pretty insensitively. 

The First Doctor

The first doctor I visited had been highly rated as one of the best (ob/gyn) docs in Atlanta.  Based on my research and a recommendation, she was supposedly known for her “Innovative Solutions” for women and her understanding (she did have a uterus after all) of women’s desire to keep their wombs intact and/or have children.  Well, I walked into her office, paid my copay, and was directed to the examining room. After she examined me, she pronounced that I did indeed have a fibroid, a rather large one; that I should get some blood work done; and that I should return for a followup appointment to discuss treatment options.  Now, I was not quite sure why I needed to come back for a followup to discuss “options” but I played the good patient and scheduled the followup appointment.  When I arrived for my followup appointment, after paying another copay, we sat down and discussed my blood work and she proceeded to recommend that I have a hysterectomy.  She didn’t ask if I wanted to have children; she simply pronounced that I wasn’t likely to have children given my age and that a hysterectomy would therefore make sense.  I told her that I wanted to preserve my uterus.  She responded that we should move forward with scheduling surgery.   And, as her way of addressing my desire to preserve my uterus, she then recommended that we plan to do a myomectomy IF the fibroid was outside my uterus and a hysterectomy if it was inside.  When I asked when that decision would be made, she said she would make it during surgery “because it was a straightforward procedure.”  I was horrified!  As you can imagine, I was not at all comfortable with any decisions being made while I was under anesthesia!  I left the office having NO INTENTION of returning….until the next day’s research.   I learned that a standard step before a surgical procedure (like a myomectomy or hysterectomy) would be to get additional details on the fibroid with an MRI or other imaging procedure.  So, after that appointment, I called the same doctor’s office to request an MRI.  The receptionist told me I had to come in (pay another copay) AND see the doctor again to get a referral.  I was livid! Come in…again…?!  Pay…again…?!  …for a standard procedure that it seems, by all other accounts, should have been ordered after the first appointment AND certainly be input to a second followup appointment to “discuss options”?!?!  I of course refused and asked to speak to the doctor directly.  They told me they would give her the message and have her get back to me.  The next day, the receptionist called and told me that the doctor had authorized a sonogram, which, based on my insurance, would be required before an MRI.

The Next Doctor

Since I had no intention of returning to Ms. “Innovative Solutions,” I had the sonogram done, got a copy of the results and began the search for another ob/gyn.  I got several referrals from friends and, after sorting based on research, picked the top candidate on the list, another woman, highly rated and Board certified (I still did my research despite the fact that it had not panned out with the first one).  I scheduled my appointment, arrived, sonogram results in hand (paid yet another copay) and proceeded to wait for the doctor, expecting once again a quick exam and a discussion of my options.  

In order for you to understand my disappointment when she entered the room, you have to understand something about me.  Working around the health and wellness industry, I have come to understand there is often a significant gap between knowing something and living something, especially as it relates to health practices.  As a health coach and advocate, I believe strongly that I need to be a role model and an example of knowing and teaching healthy lifestyle practices at the same time as LIVING healthy.  Why?  Because if it is hard for me to trust health information and suggestions from someone that does not appear to live healthy, I don’t expect my students and clients to be any different.  So, although I know the gap (between knowing and DOING) exists most of the time, it still never fails to disappoint me when I see it in action.   

And so, when my doctor entered the room, I was disappointed because she did not appear to be healthy AT ALL.  Her complexion was sallow; her hair was stringy and thin; her skin appeared to be peeling and cakey; her legs appeared swollen and puffy and straining against her leggings and sweater.  Resisting the urge to turn around and walk out the door, I explained my situation.  In fact, I told her about my experience with the previous doctor; her response was a series of nods, a few nasal “yes”s and then silence.  The fact that she did not seem to have any reaction to the previous doctor’s approach was disappointing.  The next thing that happened was even more disappointing (and bizarre).  Because I had already concluded that I did not want this doctor to do anything to my fibroid, as she pulled me into the stirrups, wanting to make something of this appointment, I asked if she could do my pap smear examination (especially since I was “in place”).  She said that she could not do the pap smear and that that would require a followup appointment (of course!)…BUT that she would like to do a test for gonorrhea and chlamydia.  WHAT?!?!?!?  What did that have to do with why I was there, i.e. my fibroid?  Did I look like I needed to be tested STD’s (especially compared to how unhealthy she looked)? Why could she do a test for STD’s and NOT a pap smear?  To make matters even worse, she said she agreed with the first doctor and suggested that I probably wouldn’t have children.  She also told me that if I didn’t have a hysterectomy, given the size of my fibroid, I was not a candidate for minimally invasive surgery; my only other option was abdominal surgery with an incision the length of my sternum to my bikini line.  Of course, I left thoroughly dejected and scratched yet another doctor off my list.

And there were three (and four)

The next doctors I saw were interventional radiologists.  I began reading more about a relatively new, popular treatment called uterine artery embolization, or UAE (also, UFE or Uterine Fibroid Embolization).  Although it was not recommended for those who wanted to get pregnant in the future, I was interested because it would preserve my uterus by injecting material into my bloodstream at 2 strategic points designed to cut off the blood supply to the fibroid and consequently shrink it.  Although I wasn’t crazy about the concept of injecting and leaving artificial materials in my body and was still more interested in removing the fibroid entirely rather than shrinking it, I decided to talk to an expert and find out more.  Again, I did some research and found two local doctors: one, whose practice had been covered in the news as new but up-and-coming for UAE, and the other, whose practice was well established and had vast experience with the procedure, including a few celebrity clients.  The latter did not take my insurance so I went to see the former first.  After examining me, he discussed the procedure with me fairly extensively, explaining a great deal about it, the risks, at the same time, asking what I wanted and was important to me.  He explained the chance of early menopause due to loss of bloodflow to the entire uterus, potentially killing my uterus in the process.  He then gave me an order for an MRI to get information on the location, size and other details he would need in order to determine my candidacy for the UAE procedure.  Understanding the risks in more detail, I decided I would get the MRI (other doctors would need it), have the followup appointment to confirm my eligibility and consider whether I was comfortable with the risks of the UAE procedure if I was candidate.  After some financial runaround with insurance and the MRI providers, I had the MRI done and returned for my followup appointment. 

In case you are not aware, typically, MRI results are sent to the doctor that ordered them.  In this case, unfortunately, when I arrived for my followup appointment, we discovered that the MRI results had not been sent and we were not able to confirm my eligibility for the procedure at that time.  We followed up to have them couriered over as soon as possible.  In the meantime, the doctor and I agreed that, after receiving my MRI results, reviewing them and determining my candidacy, he would call me to confirm.  After a week went by, I called the office and requested that the doctor get back to me as soon as possible so that I could make my final decision about moving forward with UAE (or not).  After another week went by, I called again and when told the doctor would get back to me, asked if I could hold and wait for the receptionist to just ask the doctor whether I was eligible for UAE based on the MRI.   I held and was eventually told the doctor was very busy and would have to get back to me.  When I called after another week, I let them know that if I did not hear back from the doctor that day that I would be forced to move on to another doctor.  I never heard back. 

I tried to stay positive by believing that it was meant for me to see the other doctor with more experience.  So I made an appointment with him, sending my MRI results and paying out of pocket (he did not yet take my insurance) in an urgent bid to at least confirm whether UAE was an option for me.  After taking a seat in his office, he told me that he had already reviewed my MRI results and proceeded to ask me whether I had any traditional symptoms, especially excessive bleeding, cramps or frequent urination.  I told him I did not have any of those symptoms but did have some pain in my lower back when I did exercises lying down.  He responded that, in that case, he could not help me, that “UAE can only help alleviate ‘bulk symptoms’.”   I was confused.  What was a “bulk symptom?”  Wouldn’t pressure on the back classify as a “bulk symptom”?  When I asked him that, he didn’t answer my question directly, just that he could only help with “bulk symptoms like excessive bleeding, cramps or frequent urination.”  I wasn’t sure what that meant and tried to ask the question again a few different ways.  After 15 minutes of getting nowhere with my line of questioning and not confirming one way or another whether I was a candidate, he extended his hand and I shook it, leaving his office while shaking my head with confusion, disappointment and somewhat depressed.

Finding The One

Over the next week, filled with frustration, while I went about my day-to-day activities, the back of my mind was constantly occupied with trying to figure out my next step.  In the meantime, over that same week, I got more and more questions both in person and online about whether I was expecting.  I took that as a gentle nudge that I needed to get this DONE.  I still had a list of referrals and a few folks gave me few more to add.  Partly because it gave me something to do and partly because I hope it would make one name bubble to the top, I went back to researching, looking at the new names on the list.  A good friend and fellow fitness instructor had suggested Dr. Nathan Mordel.  I looked up his website, blog posts, testimonials and videos.  I was impressed and felt that his approach seemed to encompass not only all the previous research I had done on fibroid treatments but also a compassion that I had not felt with other doctors I had researched.  I called the office to confirm he accepted my insurance and made my appointment.  From my first appointment to my followup appointment, Dr. Mordel’s approach felt different than all of my previous doctors.  At the same time that he asked and clearly considered what I wanted, his own personal approach seemed reluctant to removing or cutting more than absolutely necessary.  This was in marked contrast to the other doctors I had seen that seemed more than ready to take everything out, despite what I wanted.   After what I had been through thus far, I was overwhelmed with relief to have found a solution and a doctor I felt I could trust.  We confirmed coverage by my insurance and scheduled the surgery for 6 weeks later.

Post-op

I am now two weeks post-op and I am so grateful to my body, Dr. Mordel, his staff and my support system of friends and family for what I believe was an important process for me to have experienced.  I am excited about a new phase of life post-op now that I have removed not only a risk to my health but also, symbolically, a collection of past relationship hurts and blocks to my creativity.  I am resolved more than ever post-op to be a love light to myself and for others moving forward.

 

Changing the Journey

Given the horrible experience I had with the process of making a decision and finding a provider, I was further resolved that, as a healthy coach, I would work to do something to make it easier in the future for women suffering from fibroids.  I can’t even imagine how much worse the experience would have been if I had been suffering from ANY of the traditional symptoms.    At the same time, a few weeks after my surgery was scheduled (and a few weeks before the actual surgery), I sent my friend Tarita an article on French “cooch coaches” via Facebook and she called me shortly after to ask me if I would get involved in an initiative she was working on called The pms Telehon.  The goal of the initiative was to bring awareness, fundraise, research and educate for a cure for cramps, fibroids and endometriosis.  I was ecstatic!  The timing was perfect!  It was the something I needed to achieve my personal objective to change the process for other women suffering from fibroids.  Since my recovery, I have been lovingly collaborating with Tarita on next steps for The pms Telethon project.

In that spirit, I am asking family and friends, women and men, visit PMS Telethon.org and...

1)    ...give at least $20 to the effort

2)    ...volunteer to be on a registry if you have suffered or are suffering from cramps, fibroids or endometriosis

3)    ...(physicians, researchers and other health professionals) send an email to be a partner if you work with any of the above

Much love and light from me for always!