In 2007, when I was 33, after suffering for about a year with heavy menstrual bleeding and cramps, and having tried various forms of birth control pills which did nothing to help my symptoms, my OB/GYN performed a saline ultrasound and discovered a 5 cm fibroid, several polyps and one smaller fibroid in my uterus.  She did not feel that the large fibroid was the cause of my bleeding, as she believed it was in the lining and not the cavity of my uterus.  At her suggestion, I had a hysteroscopy, an outpatient procedure, wherein she removed the polyps and the smaller fibroid vaginally.  My doctor said I would have some mild bleeding afterwards, for about a week or so, similar to a light period.  Instead, I bled profusely for two months straight.  When I complained to her about the prolonged and heavy flow, and asked whether that was normal, her exact words were “some people take longer to heal than others.”  She suggested I get an IUD called Merena, which would release hormones into my uterus and might help with the bleeding.  After doing lots of research online, I read various horror stories of other women who had tried that particular IUD and had intermittent bleeding, cramping, fever, nausea, and even hair loss.  Merena was not for me.

My periods continued to get heavier and more painful, and no longer so trusting of my OB or of Western medicine in general, I sought alternative treatment.  I went to an acupuncturist who specialized in fertility and women’s issues, and she gave me a mixture of Chinese herbs to take three times a day.  She also advised me to switch to organic milk and meats, as the non-organics can contain lots of hormones which would help my fibroid to grow.  I followed my acupuncturist’s advice, seeing her twice a month, and taking the herbs religiously.  Seven months later, the worst of my cramps were gone, but nothing had eased the blood flow.

I had avoided going to a doctor for the last year and a half when in March of 2009, I started noticing a feeling of extreme dehydration, which caused me to drink five times more water than I normally had.  I just could not quench my thirst.  It all came to a head one day while I was hiking, and nearly passed out.  I thought it was again dehydration, so I went to my GP.  After running some blood tests, he informed me that I was severely anemic, and that I needed to take iron pills right away.  At the same time, I had noticed I was urinating much more frequently, and I began to have hemorrhoids caused by constipation.  I went to a urologist who told me my bladder was not emptying all the way, and that something (undoubtedly the fibroid) was probably putting pressure on it.  Two of my hemorrhoids became extremely painfully thrombosed, and had to be incised.  It seemed the fibroid was also pressing on my bowel.  I even had a colonoscopy, just to be sure that the anemia wasn’t from a polyp in my bowel or something more serious.

When the results of a colonoscopy showed nothing serious, I finally succumbed to the idea that I was going to have to see another OB and get another ultrasound to see what was going on with my fibroid.  It had grown to 7 cm in size by then, and my new OB said that considering my anemia and other symptoms, it was time to take action.  She suggested either Uterine Artery Embolization or a Myomectomy, two painful options I was not ready to consider.  She also suggested a blood transfusion, as she said there was no way I could rebuild my iron from iron pills alone, considering how low my hemoglobin had gotten.

After receiving a blood transfusion, and cancelling a much anticipated vacation, due to using up all my vacation days for sick time, I started researching alternative fibroid treatments on the internet.  I discovered an article about MRI Guided Focused Ultrasound.  It seemed like the answer to all my problems!  When I mentioned it to my OB, she admitted to having heard of it, but seemed skeptical about it really working.  She seemed supportive enough of my decision to at least investigate it as an option, so I made an appointment at UCLA’s radiology department, which was one of only two hospitals in California performing this procedure.  After having an MRI with and without contrast, and meeting with their OB and two radiologists, I was told I was a perfect candidate for this completely non-invasive procedure, and that they thought they could shrink my fibroid significantly, to help alleviate my symptoms.  They also informed me that contrary to what my first OB had told me, my fibroid was submucosal, living in the cavity of my uterus, and pressing into the endometrial lining, which meant that it was most likely the source of my bleeding and discomfort.

A week later, I received the devastating news that my insurance company, Anthem Blue Cross, would not cover the procedure.  I appealed their decision, and was again denied coverage.  They stated they felt not enough large number or long term studies had been done to show the effectiveness of Focused Ultrasound, and that it was considered “investigational”.  They recommended the “gold standard treatment of myomectomy or hysterectomy.”  I couldn’t believe my insurance company was willing to pay for me to get a much more expensive and risky surgery than to risk a completely non-invasive and much more cost effective alternative.  I was not giving up the fight.  I could not afford to miss 2-6 weeks of work and face a painful and slow recovery.  I had already cut down my gym workouts by half and used up all my vacation time.  I submitted my paperwork to the Department of Managed Healthcare for a third-party appeal, where a panel of three outside experts would make a decision.  I had my doctors sign the appropriate forms to have my appeal expedited, as my symptoms were still severe and were still causing me to miss work.  My expedition was not granted, and the nurse in charge of reviewing my case informed me that even though she felt my case was a strong one for expedition, it did not meet their “standards of medical necessity.”  Now the DMHC would have 45 days to make a decision!  I did not have 45 days.  I was not willing to get another transfusion and risk my health deteriorating further.

Luckily for me, my father ended up agreeing to pay $8,700 for the procedure.  I had it done two days ago, and so far, I’m feeling great!  There was some discomfort with having a foley catheter, and being hooked up to all the various heart and blood pressure monitors, IV, oxygen tubes, etc., not to mention laying still on my tummy for four hours, but nothing was ever painful, and the Demerol they gave me was great!  I had some mild cramps, and there were a couple of times when I felt a burning sensation, but I pressed the stop button and then it was over.  The radiologists showed me my post-procedure MRI and they were able to kill off 60-70% of the blood supply to the fibroid.  The hope is that the rest will die off with it.  I was back to work the next day with absolutely no side-effects.  I can already feel a difference, as the pressure on my bladder and bowel seems to have eased, and for once, I am actually looking forward to my period, so I can see the results for myself!

Nearly every woman in my family has had a hysterectomy due to fibroids, including my own mother at only 35 years old (the same age I am now).  I’m continuing my fight with Blue Cross, and I am going to try to get my story told so that other women can avoid unnecessary surgery in the future.  I will keep you posted as to my progress!