“I am 49 years old and I have been suffering from fibroids for 20 years. I had my first myomectomy in 1992, the fibroids grew back, so I had another myomectomy in 2002, the fibroids have grown back again, plus I’ve had two miscarriages and an ectopic pregnancy. Now I want a hysterectomy but my doctor won’t do it.”
These are some of the powerful words I remember hearing from one of the women who spoke out during the Q&A to the panel, which included myself as a patient advocate, two OB/GYN’s, two radiologists and a naturopath at last week’s Fibroid Relief At Last event in Los Angeles.
The woman was beautiful, looking much younger than she claimed to be, and I was amazed at her strength in sharing the story of her terrible ordeal. She claimed her doctor did not want her to have a hysterectomy, because she had already had so many invasive procedures, and that she should deal with the fibroids until she reached menopause, when they would likely shrink on their own. All of the doctors on the panel agreed that the woman should seek second and third opinions, as they could see no reason why she should be denied a hysterectomy, if that was what she wanted, and that waiting until menopause could cause her to endure painful symptoms for several more years.
It was an unusual story, as most of the women at the event told of doctors who encouraged them to get hysterectomies when they wanted to keep their uterus intact. All of the women who spoke at the event seemed to share one thing in common, which was the fact that their doctors did not seem to be listening to their needs.
The event had a much greater turnout than I expected, with 125 women in the audience (Los Angeles is not a city where people tend to make an effort to show up at an event unless it involves celebrities and free alcohol, and this event had neither, so I was impressed). The fact that so many women would take the trouble to attend an event in a somewhat difficult to reach location at the peak of rush hour on a Tuesday night also speaks volumes to me about what a serious problem fibroids really are.
When the Q&A began, I was astounded again by the number of women who left their seats and stood patiently in line at the microphones. Most of the women had more than one question to ask – one was a mother asking on behalf of her daughter, one man even got up, whose wife could not attend, but who had sent him there with a question of her own. This man was also not the only man in the room, and it impressed me that there were some great husbands and significant others who supported their partners in their journey to find relief.
As the Q&A continued, it quickly became very clear to all that the most common concern in the room was the lack of treatment options being given to these women by their doctors. Most women were given only one or two options of treatment – hysterectomy or myomectomy, and hardly any of the women had been told about MRI Guided Focused Ultrasound. Some of the women who were in their late 40’s or older had been told by their doctors to “just deal with” their symptoms until they reached menopause, but for many of them that could mean several more years of dealing with heavy bleeding and pelvic pressure. Many of the women for whom fertility was not a concern had been encouraged by their doctors to have risky and invasive hysterectomies, despite their desire to preserve their uteruses. All of these questions and concerns were simultaneously upsetting and encouraging to hear, because these women were there, speaking out, trying to accomplish something and be heard.
When the Q&A was over, and I stepped down to meet some of the women in the audience, I was overwhelmed with the response I received. Several women approached me and personally thanked me for sharing my story with them. The woman who I referred to in the beginning of my blog told me she would never have shared her own story or asked any of her questions out loud, but after hearing me tell my own story, she realized she did not need to be embarrassed or ashamed and felt the courage to speak up. This meant so much to me, because in gearing up for the event, I had questioned what the reaction of the audience would be if I went into details of my own symptoms including heavy bleeding, frequent urination or bowel problems. I worried about whether I would be embarrassed and whether people would be shocked by my admission of these symptoms in public. As it turned out, one of the main benefits of this event was the realization by its attendees that they were not alone, that it is okay to talk about these problems, that it is, in fact, necessary to discuss them or they will never be resolved.
Fibroid Relief At Last gave me hope that with more events like this one in more cities in the US and abroad, global awareness of Fibroid Relief WILL HAPPEN, and with it, doctors and insurance companies will get on board, and women will know that they are not alone and will be offered some relief from their symptoms at last!