Fybroids

quinci · 10-28-2002, 06:46 PM

Here's a question for you Cysters. I had my first ultrasound on my ovaries three days ago after a diagnosis of pcos a year ago. The radiologist found, in addition to cysts on my ovaries, a fibroid tumor on my uterus. After spending a day on the web I haven't found a correlation between pcos and fibroids. Do any of you know if there is a connection or have any of you had fibroids?

If so, did you have them treated? How? I am very apprehensive as a single 35-year old without children, yet. Could someone give me some good news?

I am still waiting for my endo to call with more info.

KatCarney · 10-28-2002, 06:50 PM

Be sure to run a search of the message board (the search link is at the top of the page...)

See what that turns up...

Kat

quinci · 10-28-2002, 07:14 PM

Thanks Kat! I did a search earlier, but with my mispelling, nothing turned up. Would you believe I aced my editing class in college? Thanks. That helped a lot.

HISIRISHGEM · 10-29-2002, 06:59 PM

I also have a fibroid tumor that has just been found as well.....There IS a correlation between fibroids and PCOS

KatCarney · 08-10-2003, 01:50 PM

One of which is particularly bothersome, in terms of pain, and pressure in my lower abdomen.

Oddly enough, my ovaries have remained cyst free for the past several years.

I haven't found anything on a connection between fibroids and pcos...will post anything I come up with.

Kat

Roxanne · 08-11-2003, 12:29 PM

My ovaries have remained cyst free for several years, but my last ultrasound showed a fibroid on my uterus.

I'm 33 and childless (not married). I hear my biological clock ticking VERY LOUDLY AND RAPIDLY.

Astrolaura · 08-11-2003, 04:36 PM

I don't have fibroids, but I have uterine polyps. My ob/gyn will do a D&C to remove them in a few months. He wants me to rest and build up my strength before having another surgery. That's fine as long as the BCP keep my awful periods at bay.

Laura

Quote:

Originally posted by quinci
Here's a question for you Cysters. I had my first ultrasound on my ovaries three days ago after a diagnosis of pcos a year ago. The radiologist found, in addition to cysts on my ovaries, a fibroid tumor on my uterus. After spending a day on the web I haven't found a correlation between pcos and fibroids. Do any of you know if there is a connection or have any of you had fibroids?

If so, did you have them treated? How? I am very apprehensive as a single 35-year old without children, yet. Could someone give me some good news?

I am still waiting for my endo to call with more info.

indiana_troll · 08-11-2003, 05:28 PM

I had a huge fibroid in my uterus. After I had my hysterectomy my pants started fitting my a lot better. The fibroid was making my belly stick out like I was pregnant.

Patty

nobimbo · 08-11-2003, 05:36 PM

It makes sense to me that there would be a connection between PCOS and fibroids, since it is thought that estrogen feeds the fibroids, and many of us are estrogen dominant.

When I went for my first consult to an interventional radiologist for a uterine artery embolization, I asked him if there had been any research done on UAE and women with PCOS. He said there were none (UAE is still so new) but that it would be an interesting study.

I recently posted on a yahoo discussion board for UAE asking if there were any women with PCOS besides me on that board, and I got only one response. I posted here several weeks ago about UAE and again got no response. I found it rather surprising, since there is probably a high incidence of fibroids with PCOS.

One other interesting note: During my UAE procedure, it was found that I have an anatomical deviation where I only have one uterine artery (the one on the right was so small as to be nonexistent, so not feeding the fibroid), so I only had a unilateral embolization (my doc has done over 150 of these procedures, and this was the first time he ever ran across this). The one other woman on the endo board who responded to me and said she has PCOS also had a unilateral embolization (her doc found an ovarian artery that was feeding her tumor and did not embolize that). Makes me wonder if there is some kind of connection between my "anatomical deviation" and my PCOS? The only way that could ever be found is to actually have a cathertization procedure, so there could be many women with PCOS out there with uterine artery deviations that are unaware of it, especially since it doesn't really cause any problems.

Linda

anglewormm · 08-11-2003, 09:53 PM

I read on the one site, HOPE FOR FIBROIDS, that that particular doc couldn't do the surgery on a woman over 280lbs. Are all like that? Is it something that is a standard, because of the equiptment?

This is the quote from there...

Quote:

Is there anyone who is not a candidate for UAE and if so why?

Some women have other pelvic disorders in addition to fibroids, and need to have those addressed first. Some women with specific patterns of fibroid disease may well be better served by surgery. Because of equipment limitations, I am unable to treat a patient who weighs 280 lbs. or more; however, there are no fibroid size limitations in my practice. I have treated women with large fibroid uteri, in a few cases as large as a term pregnancy. These women have done just as well as women with smaller uteri, so long as they do not have unrealistic expectations for size reduction.

That would suck, especially since I am sure that I could benefit from this, but I would have to lose weight first. Wish I had known about this a few years ago, maybe then I wouldn't be having problems still. Stupid docs!!

anglewormm · 08-11-2003, 10:58 PM

I was just searching online and found this interesting site. It is done by a woman who has fibroids and is about her journey to answers and help. I thought it might be helpful for you all.
sex, lies, and uterine fibroids

And this one has good info too and shows some pics too.
OHSU: Fibroid Embolization - What is Uterine Fibroid?

nobimbo · 08-12-2003, 10:50 AM

Angelwormm,

I had asked this question to Dr. Kirsch who is on the yahoo embo discussion board this question prior to my UAE (he's the doctor you're referring to from the Hope For Fibroids site as well) and he said that the equipment he used could only support 280 pounds. But I have read about women who were heavier getting UAE, so I don't think that applies to all interventional radiologists.

If any of you are interested in UAE, please go to the yahoo discussion group site and read up as much as you can. For me, that was the best place for info. and support I could find!

Linda

http://groups.yahoo.com/group/embo/

KatCarney · 08-12-2003, 06:49 PM

Here is a very balanced AP report on UAE...Lauran Neergaard is a great reporter, and her research is usually quite thorough.

The article is from 8 months ago, I'm going to see what additional studies have been published in that time.

kat

---

Studies Question Fibroid Treatment
Associated Press
Last Updated: Nov. 12, 2002 at 11:56:18 p.m.
WASHINGTON - An increasingly popular treatment promises to rid women of painful, bleeding uterine fibroids without standard surgery's risks. But new research has some doctors questioning how long the treatment helps - and if it's too risky for women who hope to become pregnant.

Part of the problem is that this new ``uterine artery embolization'' has never been fully studied to see how it compares with uterine-sparing surgical removal of fibroids.

But the controversy highlights a bigger issue: ``We really don't know very much at all about how to manage fibroids,'' says Dr. Evan Myers of Duke University - even though the uterine growths plague more than a million women a year and are the leading cause of hysterectomies.

Nearly 40 percent of women in their 30s and 40s develop fibroids, non-cancerous growths of muscle fibers inside the uterus. No one knows what causes fibroids, and tiny ones usually cause no symptoms. But they can grow to cantaloupe size, causing severe pain, heavy bleeding and infertility or pregnancy complications.

More than 150,000 hysterectomies - surgical uterus removal - each year are due to fibroids.

For women who still want children, options are limited. Drugs shrink fibroids only temporarily. About 35,000 women a year undergo myomectomy, where surgeons remove fibroids while leaving the uterus intact. But it's painful, fibroids sometimes grow back, and women who later become pregnant usually require Caesarean deliveries.

Uterine artery embolization, or UAE, is a far less invasive alternative. Doctors squirt tiny plastic pellets into certain uterine arteries, cutting off the blood supply feeding the fibroids. Over the next three months to a year, the fibroids shrink.

About 85 percent of patients get relief, fueling UAE's growing popularity. Some 30,000 embolizations have been performed since UAE was first tried in 1995, says Myers, who calls it a promising procedure.

But studies published this month in Obstetrics & Gynecology raise questions about how long that relief lasts - and stress that contrary to public perception, UAE isn't risk-free:

The University of California, Los Angeles, tracked 59 UAE patients and another 38 who had a myomectomy. Three years later, 29 percent of the UAE patients needed further fibroid treatment; only 3 percent of myomectomy patients did.

Infection, bleeding and blood-vessel clots are considered serious but rare risks of UAE - at least two deaths have been reported since 1995 - although no one knows how often complications occur. So Georgetown University Hospital tracked 400 embolization patients treated there since 1997, and concluded the overall risk of side effects was a low 5 percent.

Most were minor - but five patients required days of hospitalization for infection, bleeding or clots. One needed a hysterectomy four months after her UAE, for heavy bleeding when her body expelled a shrunken fibroid.

Researchers at Thomas Jefferson University analyzed the 50 published cases of pregnancy after UAE and concluded those women had higher risks of miscarriage, post-delivery hemorrhage, premature birth, breech babies and Caesarean sections than do healthy women. Other researchers say infertility also may be a risk if UAE accidentally blocks blood flow to the ovaries.

They're small studies, all with flaws. For example, UCLA's myomectomy retreatment rate was lower than other hospitals'. And women with fibroids already have a higher risk of pregnancy complications - yet no one has compared whether myomectomy or UAE offers them a better outcome, says Georgetown's Dr. James Spies, a leading UAE provider who is pushing for federally funded research to answer such crucial questions.

In fact, there have never been good studies of just which fibroids are best treated by UAE, myomectomy or hysterectomy. Part of the reason is a turf battle: UAE is performed by interventional radiologists, while gynecology specialists do the uterine surgeries.

Doctors may soon get some better information: A registry at Duke, funded by the Society for Interventional Radiology, is tracking how almost 3,000 UAE patients fare.

Meanwhile, any of the options is reasonable for a woman no longer considering pregnancy, but know that retreatment rates for both UAE and myomectomy remain in question, Myers says.

If women want to become pregnant, they ``really need to know they're taking a chance'' with UAE, he adds. Georgetown's Spies recommends myomectomy in particular for anyone wanting a baby within two years, because UAE shrinks fibroids so slowly.

And ``do a little digging'' before picking a doctor, adds Cynthia Pearson of the National Women's Health Network, which urges better fibroid research. ``No matter how fabulous things were at Georgetown, a woman can't assume her results will be the same'' if her doctor hasn't performed many UAEs.

EDITOR'S NOTE - Lauran Neergaard covers health and medical issues for The Associated Press in Washington.

nobimbo · 08-12-2003, 07:43 PM

Here is a link to another research study:

http://f5.grp.yahoofs.com/v1/UFU5P3O...I/Chopelas.txt

I also want to share this post (see below) that was in the yahoo embo board files, which discusses one of the concerns noted in Lauran Neergaard's article that Kat posted about pregnancy after UAE. I also want to add that Dr. Kirsch, who has done over 1500 UAE's, has said the stats for regrowth after myomectomy is 50% after 5 years. I have seen many, many posts from women who have had myo's who went on to have UAE several years later.

There are a couple of websites that are meant to scare women away from UAE, so beware. One is sponsored by the HERS foundation, which is actually funded by a group of doctors who perform myomectomies (so it is very biased and the site is full of false information). Again I stress to please read the many posts from women who have actually had UAE. The yahoo embo site (see link below) has been around for 5 years, so you will be able to read about women's experiences who are several years post UAE. I am so happy to have had an option other than hysterectomy (my tumor was not suited for myomectomy, but I didn't want to go through major surgery anyway). Many gyn's are quick to rush you into hysterectomy especially if they feel you "don't need your uterus" anymore. A uterus is more than a vessel for carrying a baby. It is an organ, it has functions other than baby-carrying (supports other structures, secretes hormones which "communicate" with the heart, etc.), and it's the fibroids that cause the problems, not the uterus!

http://groups.yahoo.com/group/embo/

Linda

WHY UAE IF I WANT KIDS?

Deciding how to treat your fibroids can be pretty tough, especially if you still want children.

At the time of this writing (Sep 2002) I am 35, recently married, and want to have children. I had UAE on 24 July 2002 for a single submucosal fibroid that caused uncontrollable bleeding and anemia.

In August 2002 a gal on the group asked me why I chose UAE if I still want to have children. Her doctor had advised against it. She also asked what my doctor said about UAE and fertility.

Here’s my answer.

The gyn said she could not recommend UAE. The main reason -- a lack of scientific data on UAE's impact on fertility. That's it, a lack of data one way or the other. She said this lack of data won't be fixed anytime soon, because no one will go out on a limb to do a study specifically on UAE and fertility. There will only be retroactive data, which will take a long time to gather and will still not give the true picture. I expect for liability reasons gyns have to follow the practice of not recommending a treatment with "unknown" results, so most of the women who’ve had UAEs said they didn't desire fertility.

It was not an easy decision!! But here's how I came to my decision. I researched the heck out of the internet and webgroups, picked the brains of two IRs, and talked to family and friends as sounding boards.

What I found is....
Myo does have much more data than UAE regarding fertility. However, a lot of that data I didn't like: 40-60% rates of fertility; significant possibilities for regrowth (I'm 35), scarring and adhesions; the pain and long recovery of abdominal surgery; and an almost definite Caesarian section later on (at least for me).
Granted, it's hard to say exactly what those fertility rates mean, because the women studied had already tried to get pregnant. Who knows if other causes of infertility were still present after myomectomy.

From the admittedly scant data I have found on UAE, either scientific or anecdotal from this group and the Yahoo uterinefibroids web group, *I* think the risks to fertility after UAE will be less than what doctors currently fear. Perhaps the risks will be even less than with myomectomy. Women do get pregnant and most of them have had vaginal deliveries. I have not heard of underweight or unhealthy babies yet.
The ovarian failure rate after UAE appears low for women under 40.
With UAE, fibroids rarely recur.
Those who've had less success with UAE (bad post embo syndrome or not much reduction in volume) seem to have much larger fibroids than I do/did? (5.0cm partly submucosal), and at least one of their fibroids was subserosal or intramural. Turns out I took a few days longer than some to feel ready to go skydiving afterwards, but I had no post-embo syndrome. I was back to work and able to exercise much sooner than I would have been after myo.
Because of these web groups, I learned there is a risk from UAE of losing uterine orgasms, and a risk of infection if the fibroid sloughs off but gets stuck in the uterus. I escaped the first one -- the playground is open and in better condition than before!
I'll keep in tune with my body to prevent any infection from being a problem.
Finally, I had not even heard of doctors telling women UAE is bad because it cuts off blood flow to the uterus permanently until I saw some folks post it recently. Bunk! I say. Yeah, some blood flow is cut off at first, but it begins to re-establish itself immediately. If it didn't, the whole uterus would die off and that just doesn't happen.

Regarding other options, hysteroscopic resection was out because the fibroid was too big and too far embedded in the wall. Leave the fibroid be was out because it made me bleed very badly -- anemia stinks; never want to go there again.

Bottom line, I did not want major abdominal surgery and have my uterus get sliced. I think UAE has left me more intact and able to get/stay pregnant. Some may think I'm engaging in wishful thinking. Time will tell!

Best wishes with making your decision. I know it's hard.
Ellen M.

Post # 14880, 29 August, 2002

anglewormm · 08-12-2003, 09:04 PM

Thanks for the extra info. I have been discussing all of this with my husband. As soon as I am settled into our new home, moving 140 miles from here, then I will be seeing a gyno down there. I have found 2 IRs that will do the surgery here in town, if it is infact what my problem is. I just want to have all the info I can before going to see a gyno. I have never actually been to one, always went to a family doc because I felt more comfortable. But I am easing into see others. So far, if I do have fibroids, then this seems to be the best thing for me and my husband agrees too. I just want to be normal, that is all I ask. Don't care about money or even if I am beautiful. I just want to be normal and bleeding all of the time is not normal. Again thanks to everyone who has posted info on this subject.