"Dear Ms. Dionne, I wanted to give you and your group some follow-up on our patient. She has managed to recover and is now working to regain her strength. She has a long recovery to complete health, but it appears that she will make it. We are all obviously very happy that she has done this well. I believe that your group's multiple prayers and positive thoughts may have made the difference."

The following letter was distributed to the members of the uterinefibroids email list group on 5/11/2000. In an effort to make this information more available to the many individuals who have made inquiries, I have decided to post the content of the letter here.

On Tuesday, a member of the uterinefibroids email list group reported segments of a conversation she had with a physician in Illinois. Specifically, she had been told that a woman who had undergone uterine artery embolization was currently hospitalized and “…going to die due to complications of UAE…”. A few additional recollections of the conversation were shared with the group but not enough details were available to truly elevate this reported information beyond the status of “rumor.”

Unfortunately, I was able to confirm today that such a case does indeed exist.

Please understand that due to concerns regarding patient confidentiality that I cannot share with you the names of physicians or the current hospital location of the patient. I do not know the patient’s name. I did inquire as to whether or not it was possible this woman was a member of our group -- or any other uterine fibroid list groups on the Internet. The interventional radiologist involved in this case did not think that this patient has had access to the Internet or been a participant on Internet chat groups regarding uterine fibroids.

The following is a rough break down of the events as they occurred in this case:

In January of this year, the 42-year-old patient went to her gynecologist complaining of painful fibroids and abnormal bleeding. {Sidenote: She had a well-established, long-term, patient-physician relationship with her gynecologist.} An ultrasound revealed a 12 cm submucosal fibroid. Because the woman is significantly overweight, the gynecologist was reluctant to perform a hysterectomy. {Risk factors are elevated whenever surgery is performed on an obese patient.} It was suggested by the gynecologist that the woman consider the option of uterine artery embolization. She was subsequently referred to an interventional radiologist for evaluation of her potential to undergo UAE.

The interventional radiologist met the patient in an office visit and discussed currently available uterine fibroid treatment options with her. Complication and infection rates were discussed along with the potential for post-operative infection requiring hysterectomy. The patient chose to undergo UAE.

An ‘uneventful’ UAE was performed on this patient in January of this year. The patient subsequently reported an improvement in pain and decreased bleeding.

Three weeks ago, the patient experienced a vaginal discharge and returned to her gynecologist for evaluation. She was treated for pelvic inflammatory disease with a course of antibiotics and sent home. She later reported ‘feeling better.’

One week ago she called the interventional radiologist. After completing the course of antibiotics prescribed, she was, apparently, still experiencing a vaginal discharge. The IR instructed her to return to her gynecologist for a follow-up check-up.

During the follow-up check-up, the gynecologist took vitals and did an in-office abdominal ultrasound. Although she was still experiencing abdominal discomfort and discharge, she was sent home.

Several days later, the patient called the IR again. She was instructed to come in for a CT scan. She apparently had a mildly elevated temperature of 99.9 along with a white blood cell count indicative of infection. She looked, according to the interventional radiologist, “toxic”, showing systemic signs of infection. She was admitted and underwent surgery that evening.

This woman’s body was trying to pass a necrosing, submucosal fibroid. One that was, only 4 months ago, 12 cm in size.

According to the physicians involved, during her follow-up checks for abdominal pain and vaginal discharge, she showed “…no overt clinical signs of being as sick as she was…the ultrasound report did not demonstrate, for whatever the reason, did not convey the gravity of the situation.”

Her surgery revealed that her bowel was injured as a result of the infection and she has continued to have a systemic infection despite surgery. Sepsis.

Currently, the woman is awake, alert and physicians and hospital staff are doing everything they possibly can to keep her comfortable. My heartfelt thoughts and prayers go out to this woman and her family this evening, I hope yours do too.

The interventional radiologist involved expressed sadness for this patient’s current condition and it made me inquire about the physician’s well-being when a significant complication like this occurs that may end by taking the patient’s life. Medical practitioners are exposed to the potential of a patient dying every day -- death is a very real and potential complication of any medical procedure and typically delineated on every hospital admitting form a patient signs.

“As a physician you just feel terrible -- you go through the whole process of ‘did I do anything wrong?’ You beat yourself up about it…but I think everything was done that we could.”

So what does this particular interventional radiologist think about UAE now? According to the physician, thoughts on this procedure were not really altered much because of this particular case.

“The procedure is not a bad procedure, it’s a good procedure. But once it’s done, the follow-up and care does not stop. Like any procedure, complications are possible. The vigilance doesn’t stop once the procedure is done.”

In addition, the interventional radiologist expressed,

“…{this case} needs to be evaluated for what occurred and should be studied for the development of some sort of protocol that addresses the care of patients after UAE…”.

You won’t get any arguments from me. Women who’ve chosen this procedure have been shouting that theme from the rooftops to a hearing impaired audience for well over a year. I wonder: is there any chance they’ll listen now?

Gynecologists need to come to the table on this and work with, not against, interventional radiologists. Interventional radiologists need to participate more fully in the follow-up care of their patients and insist upon a team approach of care. Insist. Through working closer as a team, post-operative complications that are potentially life-threatening may stand a better chance of being medically resolved before it’s too late. While it may not be possible to eliminate the potential risk of death from this procedure, it may be possible to keep it at a very low statistical number.

Anybody got ideas on how to make this happen?