Subject:  My Journey Towards UFE (Louisiana)

Monday, March 21, 2005

My journey towards Uterine Fibroid Embolization (UFE) began in 2002.  I began going to a female OB-GYN who was reported to be the best for African American women in my area.  She appeared pleasant enough and very thorough.  In late 2002, I was diagnosed with fibroids and was strongly encouraged to have a hysterectomy since I no longer wanted children.  Other options such as myomectomy were discussed but the doctor indicated they were not preferable in my case.  This doctor had performed a hysterectomy on another friend of mine.  However, I did not want a hysterectomy because I did not want to start HRT--especially since I was only 38 years old.  Additionally, I was beginning to experience perimenopause (which the doctor did not believe) and did not want additional trauma to my system.  So..the battle began. 

In February 2003, I allowed the doctor to do a hysteroscopy and laparoscopy to see where the fibroids were and their conditions.  According to the doctor, in addition to the fibroids I also had extensive endometriosis to the point that one of my ovaries was twisted abnormally.  The doctor wanted to write a script for pain but I told her that I was not in pain.  I had minor cramps during my period but usually an Advil and sleep took care of it.  She could not believe that I was not in pain.  Throughout this journey I've not experienced much pain at all.  The doctor also began me on iron pills since my iron level was low. 

From February 2003 to August 2004, this doctor and I began to battle about UFE.  At first she claimed no one in my area performed the procedure.  My city has a well-known medical school so I knew that was a lie.  Her next claim was that it was unproved and too risky.  However, I had done my research and even talked to a doctor in a neighboring state who contradicted her claims.  I refused to give up.  I was willing to travel to another city to have the procedure done if my insurance would pay.

In July 2004, the doctor's physician assistant (behind the doctor's back) told me this doctor referred another client to an Interventional Radiologist to have this procedure done.  The physician assistant gave me the name of this Interventional Radiologist who I tried to contact to no avail.  Approximately 2 weeks later, I went back to the doctor's office and she finally relented to give me a referral to an Interventional Radiologist.  However, she claimed that before she did that, she wanted to do an endometrial biopsy.  When I questioned her why this was needed, she never gave me a straight answer.  Nothing in my research indicated the need for an endometrial biopsy --particularly since she had just done a pap smear the month prior.  I allowed her staff to set the appointment but the next day, I canceled it.  Prior to this, her staff never called me--even to remind me of an appointment.  However, after I canceled this appointment, I received 2 calls from her staff indicating that I must come in for this procedure.  This alarmed me as it made me feel that this office only wanted my insurance reimbursement at the expense of my health. 

I immediately made an appointment with another OB-GYN in the area.  He listed to my story and did not pass judgment.  He indicated his knowledge of UFE was limited, that he wanted to see my medical records and check into UFE with those that do the procedure.  He told me that once he reviewed my information and checked into the procedure, he would get back with me.  It took about 3 months but he did contact an Interventional Radiologist who called me the week before Christmas 2004.  He had consulted with my OB-GYN, reviewed my medical records, and felt that I was a good candidate for UFE.  He thoroughly explained the procedure and its risks to me.  We scheduled the procedure for December 28, 2004.  My insurance approved the procedure. 

The procedure went smoothly although my fibroids were more numerous and larger than anyone expected.  I was told that they had expanded my uterus to that of a 5-6 month pregnant woman.  I did not experience the intense pain post surgery as expected but I did experience some pain, fever, and lethargy. 

My first period was unchanged from the past (very heavy menstrual bleeding).  My second period was much better and was only 5 days instead of 10.  My third period was somewhere in between.  In addition to the fibroid problem, I also was diagnosed with hypertension and iron deficiency anemia in 2005. 

Between months 2-3 post UAE, I've had 3 iron infusions because my hemoglobin was at 7.0 and the iron pills were not doing the job.  The hematologist wondered why my levels were so low.  My response was that my body has not had a chance to build up iron with the extremely heavy menstrual cycles for at least three years for an average of 10 days monthly/120 days annually. 

My post UFE checkup indicates my uterus has decreased in size.  Since January 1, 2005, I'm down six pant sizes (20 to 14) and lost about 10 pounds.  My iron levels are reaching normal ranges.   

The most surprising thing about this procedure has been the response of other women to my having the UFE.  It was my expectation that many would be relieved that there are other options to hysterectomy.  However, the response has been different from those that have had hysterectomies and other procedures.  Many completely trust their doctors and have asked why I did not trust my doctor's judgment and have the hysterectomy.  My response is that the doctor's solution may be good but the doctor did not offer other options--particularly the one that I asked for--without a battle.  Additionally, the doctor did not adequately justify why I was a better candidate for a hysterectomy vs. UFE.  The response from others is wonder at my boldness to challenge a medical professional and to pursue what I wanted.  I tell them that as consumers, we have the right and privilege to do this.   

I hope that women explore all alternatives to dealing with problematic fibroids.  I've suffered extremely heavy menstrual periods for three (3) years at the expense of my body (hypertension/iron deficient anemia).  This is in addition to being bedridden, accidents, and slowly decreasing quality of life.  Prior to the UFE, my life centered around quick access to bathrooms, how I can wear 5-6 maxi pads at once and not look funny, and keeping my medicine cabinet and office stocked with peroxide for stains.  No one else should have to go through this! 

Ladies, if your OB-GYN will not refer you, find another doctor.  Your health is more important than their wallet.  Do your research!  There's help out there! - (L. from Louisiana)