One of the most surprising aspects of my personal experience with fibroids has been the lack of education in the medical community about treatment options, coupled with the failure of many OB/GYNs to inform their patients of all the treatment options available to them.
When I first came to LA, I went to an OB/GYN a friend of mine recommended, and who I will refer to as Dr. R. Dr. R had a marvelous bedside manner, as well as a great reputation in the medical community. She advised me to get a saline ultrasound when I complained of heavy monthly bleeding, and it was she who discovered one large fibroid, several smaller fibroids, and some uterine polyps. While I give Dr. R credit for suggesting hysteroscopy as a non-invasive first approach, when the procedure proved unsuccessful in removing my larger fibroid and caused me to bleed heavily for two months straight, she was not very sympathetic to my situation at all. “Some patients heal slower than others,” was her response. I had done my homework though, and after reading many articles on the internet and learning of other women’s recovery time from hysteroscopy, I realized it was not normal to bleed so heavily for so long after this procedure.
When I asked Dr. R about Uterine Artery Embolization (UAE), she said she would never recommend this procedure to a woman who wished to retain her fertility, and that in fact, she knew of women who had gone into premature menopause or even had to have hysterectomies as a result of the procedure (I have since discovered that fertility rates among UAE patients are the same or better than myomectomy, and the percentage of patients with complications is minimal). Dr. R then suggested I try Merena, an IUD that releases hormones into the uterus and was known to alleviate heavy periods in some women. Again I went online and did the research, and after reading about so many women who experienced pain during insertion, and went on to have side effects ranging from intermittent bleeding to hair loss and fevers, I decided I did not want to risk making my situation worse.
The next OB I would try, at the advice of another female friend was Dr. G. After reading my medical history and asking me a series of questions, Dr. G performed an ultrasound, and discovered my large fibroid was now larger. I explained to Dr. G that the reason for my visit was that I was unhappy with the treatment options Dr. R had given me, and did she know of any other non-invasive treatments I could consider? Other than Merena and UAE, which Dr. G said she could not recommend if I was concerned with fertility (again, this false information), myomectomy was the only option. Back to square one.
A year later, I tried yet another OB, recommended by a friend. Dr. F took me into her office on my first visit and spent 45 minutes going over my medical history, asking me questions and making sure she understood where I was coming from. Once she had performed an ultrasound and my blood test results came back, I went back into her office to discuss treatment options. Again, myomectomy and UAE were discussed. Dr. F did not have very much information on UAE, but she claimed to have performed many myomectomies. She said she would support whichever treatment I ultimately chose, but that a decision needed to be made quickly.
After a friend emailed me an article, which I followed up with my own research, I discovered MRI Guided Focused Ultrasound (FUS). I was told by a radiologist at UCLA that while the FDA was not yet recommending the treatment for women wanting to retain their fertility, the numbers thus far of women who had successful pregnancies post treatment were good. Considering that the FDA had given the same early warning advice about UAE, and the fact that this procedure was completely non-invasive and relatively pain-free with a short recovery time, I was willing to take my chances.
After it was confirmed that I was a good candidate for this procedure, I called up Dr. R to ask her why she had never recommended this treatment. She claimed to have never heard of it, said she would look into it, but that she was skeptical about its safety, mainly because she had never heard of it. Recalling her prior misinformation regarding UAE, and the fact that it was 2009, and she was unaware of a procedure that had been approved by the FDA in 2004, I was now skeptical of her. My next call was to Dr. F. She too was skeptical, but even more upsetting to me was the fact that she admitted to having known about this procedure, but had not told me about it when discussing my treatment options. When I asked why that was the case, she admitted that she had two prior patients who had opted for FUS, but both had been determined to be poor candidates for the procedure.
It has been 10 months since my FUS procedure, my periods are much lighter and shorter, I no longer have to urinate every five minutes, and my bowels are finally regular. I had no pain during my procedure, and was back to work the next day. I have yet to find an OB/GYN that I feel comfortable with, or any who are currently informing their patients about FUS as an option for treating fibroids. While I understand that there is an inadequate number of long-term studies on FUS patients, and that as a result, most insurance companies are still not covering the cost, I do not understand why doctors are not telling women about it. It is a doctor’s right to express their medical opinion about a procedure, but it is their duty to stay informed about all the latest treatments, and to be sure they make their patients aware of what those are.
If you have fibroids, it is important to know that there are now more treatment options than ever, and it is up to you to be your own best advocate, do your own research, and discover what is best for you.