Your Stories

This is a comment to my fibroid post from a reader. Its quite the story so I wanted to spotlight it. Her story just shows how we need to always stay on our toes when dealing with our doctors. The link to my post that she is commenting on will be at the conclusion of her story. I will be researching the UFE procedure and posting about it this week.

For at least five years my fibroids were growing. I tried everything including Chinese acupuncture, Korean acupuncture, an alkaline diet, among other things and they did not shrink--the growth might have slowed. According to 'gynecologist number three' my uterus was the size of a 25 week pregnancy. (Yes, number three.) This physician understood that at 48 I knew I was close to menopause and wanted to avoid hysterectomy. He handed me a brochure for an interventional radiology practice that subsequently performed a uterine fibroid embolization (UFE). Many gynecologists might hesitate to refer a patient out for a procedure that completely excludes them from performing an alternative procedure within the scope of their practice. (I missed the Dr. Oz episode--I suspect his point is for women to advocate for themselves to avoid hysterectomy in a more informed and empowered manner. And I am so glad this message is getting out!)I am eternally grateful for the good ethical physician (gynecologist 3); the decision for the UFE WAS THE BEST DECISION I EVER MADE!!

An MRI was performed at about four months and the interventional radiologist advised me that both uterine arteries have great stasis and that the 16cm fibroid was completely occluded. Exactly as promised the greatest reduction in size of fibroids to date was experienced after the three month mark. During the fourth month I experienced a drastic loss of abdominal mass and about 15 pounds (20 lbs since the procedure). I lost two pant sizes and the shape of my body returned to normal. My shape had gradually morphed to be similar to that of a pregnant woman. It has been a little more than five months since the procedure.

I FEEL FANTASTIC. No one has been able to tell me if the fibroids participate in circulating the excess estrogen through the body. Published material suggests that estrogen helps feed fibroid growth. (If anyone has seen any literature on the positive impact of UFE on estrogen levels, I am interested.) Through all this I developed slight hypothyroidism with an elevated TSH. This is not uncommon for women in peri-menopausal years. The delicate dance of hormones seems to elude explanation. My TSH is now within normal ranges and my energy level is normal. There is a difference in how I feel after the procedure that I am attributing to hormones functioning in a more normalized manner.

FOLLOW YOUR INSTINCT. Here is a little background: Gynecologist one had been my provider for seven or so years. He had casually encouraged a hysterectomy at about four years into my tenure as his patient on the basis that I was not planning to have children and he tried to "sell" a hysterectomy on the basis of the convenience of no more periods. I brushed it off. I asked him about UFE as a way to treat fibroids. He discouraged me from looking into this citing patient dissatisfaction. The last time I saw him he tried to scare me into surgery. He ordered an invasive renal study and told me that he could not promise me my fibroids had not caused damage to my kidneys. At this point my fibroids were about a 20 week pregnancy. I did a little research and did not have that study.

After careful research I moved on to gynecologist number 2. I had an appointment for a comprehensive visit and she was very accommodating--in retrospect she was very good at establishing rapport--more so than paying needed attention to me and the reason for my visit. This was on June 17th a couple of years ago. My follow up with her was scheduled for July 10th. Provider two's office told me when I called in at the end of June with a heart rate between 100-110, acute dizziness and swollen legs that they had me on the calendar for July 10th and I could address this with the physician at that time. On July 5th I was admitted to the hospital as an outpatient by my primary care physician and had 2 units of blood transfused. My hemoglobin had dropped to 5.3. That did not happen in the two and a half week window. My cycles were not long and unusual and I had not had a period during that time. NEITHER OF THESE TWO PROVIDERS SAW FIT TO WATCH MY BLOOD COUNT OR WARN ME THAT I SHOULD BE AWARE OF THE RISK OF ANEMIA. It never occurred to me that patients with uterine fibroids are high risk for anemia. It is up to the provider to inform of such concerns. I did not immediately leave this practice (gynecologist number two)--my primary was the provider who diagnosed and treated my anemia and I kept them very involved in my case until I found gynecologist number 3.

This was an ordeal and I am richer and wiser for the experience. There were moments when I was ready to throw in the towel and have surgery. Thankfully I hung in there. I am grateful for the marvelous care that I ultimately experienced once with the right providers. (By the way, there were no negative reports available online on Gyn 1 or 2.)

Here is the post that she was commenting on http://postpartumillness.com/node/142

Check out this UFE procedure
http://postpartumillness.com/node/159

10/01/09

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Submitted by lucyluu on Mon, 05/11/2009 - 22:09.

In August of 1998 I became very ill with what I thought was some kind of upper respiratory infection, it lasted for like 5 months I couldn't function at all. Over the course of all this I've been tested for everything and I mean everything and all the tests come back negative. Thank God.

Anyway very long story short and after going on a parade through different doctor offices, in 2003 I was told I have Fibromyalgia, so I know what you mean about being in pain every day. It's been awhile since I've had a really severe bout where I can't really get up; but it's a fight every day.

Employers DO NOT understand a diagnosis for fibro, to say the least. >>>>>>>>>Tammy

This is why I like your stories. Tammy Im so sorry that you have to be in pain everyday. I have to say that I have all these weird little illnesses but no Fibro. Im not in pain everyday. Ive dealt with pain yes but more Cardiac and Neurological things on a daily basis.

I truly feel for people with Fibro and have much respect for you all. My sister in law has it and it was brutal to watch her hobble around the kitchen at Christmas at 35 years old. She is typically such an active person.

How many children do you have? Did they diagnose you with an upper respiratory infection but couldn't tell you why or where it came from? Do you think its linked to the Fibro?

Lucy

08/25/09

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I just want you to know that although my illness isn't the same, I share the same frustrations. 2 years ago, I felt the strongest of my life. I had just run a half marathon and finished with my fastest time.

I had a wonderful marriage (still do) and four lovely children. The very next day, I woke up with chest pains, dizziness, all sorts of horrid symptoms. I had every test, with every specialist.

The symptoms kept changing, and I was completely incapacitated. I ended up in the emergency a few times. The doctors couldn't explain what was going on and finally declared I had a serious "virus".

They told me it could be up to 2 years to recover. I don't know what I had, but it was the scariest, most frustrating and saddest time of my life.

I just want you to know that I HAVE recovered. But what hasn't changed is my horror at how the north american medical system is all about throwing drugs at patients. It doesn't work, and it didn't help.

I still don't know what exactly I had, but I do know that we need to be looking at more than just reacting with drugs - we need to look at lifestyle, prevention and alternative therapies.

Anyway, your blog is great, and don't worry about the number of comments - there's more of us reading than you think!

08/20/09

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