Welcome Fibroid Survivors!

My Story

My hope for this page is to help anyone who has been diagnosed with uterine fibroids, as I was over eight years ago. The intent of this page is to provide information and support to others with uterine fibroids. It is not my intent to pursuade or convince anyone, nor should it be considered replacement for sound medical advice; it is here only to provide a place to tell my story and for others to get additional information.

Over nine years ago, I went to my physician complaining of heavy, frequent, painful & clotty periods. I told him of my concerns and was told that women my age don't usually have problems and stuck me on a low dose birth control pill (not being one to protest or complain, I accepted his diagnosis and went on the pill). When my blood pressure went soaring a few months later, and I had decided to switch to a new physician, I brought to light the same questions and concerns. This physician referred me to an OB/Gyn. This female gynecologist discovered my fibroids and told me, "you have huge fibroids, you don't plan on having children, you'd probably never be able to get pregnant with these fibroids and you'll have to have a hysterectomy." (I'm not joking; those were her words!) Needless to say, I wanted a second opinion!

After getting another referral for a second opinion, I found a wonderful physician, Dr. Richard Beyerlein, who went over all my options at length with me (our first appointment lasted more than an hour). He said hysterectomy should be my last choice, not my first.

Since that time, I've tried to arm myself with information about fibroids and all the options available to me. I would like to share that information with you and also provide you with links to other sites on the web that provided me with information and helped me find others to talk with about this medical condition.

My Surgery

I had my surgery April 1, 1998. I had a myomectomy, not a hysterectomy. I felt this was the best choice for me personally. I was a little scared, but since I decided to wait, I had gathered quite a bit of information and I now know that this was the correct decision. I feel great!!!! As part of my pre-surgical treatment, my doctor prescribed two months of Lupron shots. The first shot was no big deal; I had no outward signs of the side-effects (menopausal symptoms - hot flashes, night sweats, etc.), although my period was somewhat spread-out over a 12 day period. I had my second shot 3/2/98; the second shot was a little bit worse. I had quite a few hot flashes and was a little moody, but it was worth it. My co-workers would get a good giggle when I'd get one because I would grab anything I could find to fan myself! Most of my hot flashes occurred during the night. Although the Lupron treatment didn't shrink my largest fibroid (12 cm at the top of my uterus), my physician did say that it did significantly shrink the other four that he removed, making it much easier to "scoop" them out. Although some of you might not be so thrilled, I asked my Dr. to take pictures of my fibroids when they were removed. If you can stand it, they are shown below.

Note: Three women from the Intradesign forum have graciously allowed me to show their post-operative pictures, also. Thanks so much to MicKi, Kristin and Mary for allowing them to be shown!!!



WARNING!!
Graphic photos of post-surgical fibroids and ultrasounds




Post-operatively I felt surprisingly energetic and feel like my old-self. My back muscles were sore and of course my stomach muscles were, also, but I wasn't in very much pain and I feel like I have a lot more room abdominally. I'm so happy with the decision I made and am glad I waited.

A friend who I have conversed with often since my search began for more information sent me this little rhyme she thought up while pondering her own situation:

Bye, bye, fibroids
we're gonna miss you so
Bye, bye fibroids
Why'd you have to grow?
(to the tune of Bye, Bye Birdie)

By the way, she has given birth to two sons successfully since her myomectomy.


Letter

I decided to write a letter to the female gynecologist who told me I would need to have a hysterectomy. I felt compelled to tell her how I felt. The letter was not meant as a malicious attempt to tell her she was wrong, just to explain to her my opinion of her opinion. Click Here to read my letter to her. Much to my surprise, she wrote me back! Click Here to read her response to my letter.



Survey

Some time ago, I conducted a very simple, non-scientific survey on the Intradesign Myomectomy Forum about each woman's experience with fibroids. For the results of this survey, Click Here.



Updates

At my annual in 2000, Dr. B discovered a new fibroid. He showed me that it was about the size of half his pinky finger - he did state that it had not distorted my uterus in any way, nor had my uterus grown. It is located in a much different location than my now-removed fibroids. It's at the front of my uterus, near my cervix. I feel grateful at this point that I have no indications of this fibroid. Let's hope it stays that way!!!

Since about February of 2001, I've been having this feeling as if I'm sitting directly on my tailbone. I had an exam with Dr. B, and he discovered another new fibroid - that's a total of 3. He also mentioned that my uterus was tipped back (this was something that I had always heard in all my exams, except when I found out about my large fibroids pre-myomectomy. It was comforting to hear in some very strange way!). Because of my history, we scheduled a ultrasound to see what was going on. The fibroid that was new as of June 2000 is about 3 cm, the one that was left from my surgery is relatively the same size and the new one, also at the back of my uterus, is about 0.5 to 1 cm. There was also signs of "free fluid" behind my uterus, which indicates an ovarian cyst ruptured. I was assured that this is normal, especially because I had just recently ovulated. Based on those findings, there is no indication that these fibroids are the cause of my discomfort, so I was referred to a gastroenterologist. It was found that I had nerves in my tailbone that were out of whack, not anything else.

At my annual last year (June, 2001), Dr. B indicated that the fibroid near my cervix is having a growth spurt - not good news as far as I'm concerned. That's noticeable growth just since February of 2001. I'm now on a 3-6 month ultrasound regimen. I'll update as I hear more. I also discovered for the first time in my whole life that I have iron-deficiency anemia. I've always had a good iron count. I found out when I went to give blood recently. So, the fibroids are taking their toll in more ways than one!

My annual of 2003 shows several new, small fibroids. Or as Dr. B. says, "a bunch of little ones". At this point, I'm not symptomatic, so we'll continue on the ultrasound regimen. I posted a picture of one of the fibroids (ultrasound) to show what they look like. Click here to see the ultrasound.

Fast forward to 2007 - I have apparently entered the world of menopause. It seems a bit strange at 44, but apparently everything seems ok. I have not had a period in about 15 months, thus the menopause. I am totally enjoying not having a period, and I'm also happy to state that my fibroids are now doing absolutely nothing!

Thank You

Thanks for checking out my page - if you ever want to talk with me about the pros and cons of this surgery to date, I'd love to talk with you about it! Please continue down the page for more information on fibroids and to view sights that have helped me through this. I am continually updating this page as I find more sights and information. If you find a page that is particularly helpful, please let me know and I will add it to the list of sites. Have a wonderful day and thanks for visiting!






Fibroids (myomas) are very common and treatable. Fibroids are round growths of muscle in the wall of the uterus - and are almost always noncancerous (benign) and harmless. They start as pea-sized lumps, but can grow steadily during reproductive years. Many fibroids just need to be monitored. Others may require treatment if they become too large or cause symptoms, such as:

* Abnormal uterine bleeding
* Difficulty urinating or having bowel movements
* Achiness, heaviness or fullness
* Back pain
* Difficulty getting pregnant

Although fibroids tend to run in families, no one really knows why some women have have them and others don't. It is thought that a woman is born with them and when puberty begins, they begin to grow. It is said that African-American women are even more likely to get fibroids. Statistics show that 1 out of 4 women between the ages of 30 and 40 will develop fibroids, although there are many women in their 20's who also have fibroids.

There are 4 types of fibroids:

SUBSEROUS - just below the outer lining of the uterus.
INTRAMURAL - located deep within the uterine wall.
SUBMUCOUS - just below the inner lining of the uterus.
PEDUNCULATED - a growth that develops a stalk.

The following links have also been valuable tools in my search for information:

Women's Health Links

National Uterine Fibroid Foundation
Uterine Fibroid Yahoo Group
OB/Gyn Net
Dr. Herbert A. Goldfarb, M.D. F.A.C.O.G, F.A.C.S - No Hysterectomy.Com
University of Pennsylvania, Intervention Radiology
The Fibroid Place (this site has many good links)
The Fibroid Embolization Center at the NYUnited Hospital Medical Center
All About Myomectomy
Hyster Sisters - for those that have had or are contemplating hysterectomy
Sex, Lies, and Uterine Fibroids
Womens Surgery Group (good source of pictures)
The Hysterectomy Hoax
Atlanta Reproductive Health Centre
UCLA Medical Group - Uterine Artery Embolization
onhealth.com
Second Opinion On-Line

Please e-mail me with any comments or concerns, I'd love to hear from you!

Or, view my guestbook (sorry, the guestbook can't be signed at this time)


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This page updated February 2009

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