Fibroids Increases Miscarriage Risk

I was just talking to some of my fibroid buddies online about the fact that our group, which is comprised of women with fibroids, has a much higher rate of miscarriage -- than even my miscarriage buddy group. I'm not surprised at these study findings, though the fact that they still know so little about where fibroids come from is frustrating (inner dialogue: "don't get frustrated, it blocks your liver qi")

Fibroids and miscarriage link

Early results from a pioneering study at the University of North Carolina at Chapel Hill indicate that small uterine fibroids are associated with an increased risk of miscarriage.

I'm 12 dpo today and I did an HPT which came up blaringly negative. I had all the symptoms too: sore breasts, moodiness, funny looking bumps on my areolae, no interest in sex, implantation spotting at 10-11 dpo. I'm trying not to obsess but really I haven't been able to get anything done today that is useful. I'm trying to obsess my way into getting pregnant but it isn't working out. Argh!

Fibroid Research Study

I sent my blood sample in to this study last summer; my sister and I are both doing it. If you know any sisters with fibroids please tell them about the study.

What: The Center for Uterine Fibroids is currently enrolling families in the "Finding Genes for Fibroids" study. This is a clinical research study, aimed at identifying the causes of uterine fibroids. This study has been reviewed and approved by the Human Research Committee at Brigham and Women's Hospital.

Why: We hope that information gained from the study will provide future generations of women with non-surgical treatment options. This is not a treatment study. We hope that your generous efforts will make a meaningful difference in the future treatment of fibroids.

Who: In order to be eligible for this study, your family must have at least two women who are full sisters and have uterine fibroids. Sisters with a past history of uterine fibroids are also eligible. The sisters may be you and your sister, your mother and her sister, two cousins who are sisters, or any other sisters in your family. Once your family meets this minimum requirement, we encourage other family members with or without fibroids to participate. This includes men. The more family members who take part, the more powerful our data will be.

How: You can participate from anywhere in the world; all study procedures are completed through the mail at no cost to you or your family. The study involves filling out a consent form and a survey and sending us a small one-time blood sample. The consent form discusses the risks and benefits of the study. We ask you to read and sign the consent form and fill out a medical records release form. We request only medical records having to do with fibroid diagnosis and treatment. The survey can take from 15 to 45 minutes to complete, depending upon your medical history. Once these forms are sent back, we send all participants a blood sample kit. The kit contains directions about how to get your blood sample drawn and reimbursement procedures. Once this sample is returned to us, your participation in the study is complete.

Contribute $ to fibroid research/ what do we need studied?

So what if you want to help give money to support firbroid research? Here are some ideas based on my research.

Brigham and Women's Hospital Fibroid Research Center is a possibility, they are doing the sister study and many others -- exciting stuff. I gave money last year to a specific researcher at the University of Toronto, Galene Pron, Ph.D., who is studying fibroid embolization and fertility.

I did a search on Yahoo of the words "fibroid research" and got some interesting results as well. You also can search through the PubMed site or anywhere online and see what research has been done and contact the researchers directly if they provide email addresses.

Also the March of Dimes is doing a push again premature delivery of infants but they aren't talking about fibroids. We might be able to help drive the point home by sending comments and cash at them.

Oh, by the way, this reminds me that I was in touch with the Women's Clinical Research Center here in Seattle and suggested some study ideas to them. They evidently are only doing pharmaceutical industry funded studies which irked me. Here is a list of the things I sent to them:

What happens to fibroids after menopause? Anecdotally they are supposed to shrink but there is no research evidence to refer to.

I would love to see a study that would help get women in for a routine ultrasound at age 25 and then 30-32 to help catch fibroids early since pelvic exams are often useless.

How about diet/dietary changes and how that affects growth? I think that stress and restrictive eating contributed to my fibroid growth.

What hormonal profiles and body types are linked with fibroid growth.

What about pain from fibroids – I have it but it isn't my fibroid that is hurting me, it is adjacent. I'd love to see imaging that would demonstrate what exactly is hurting. Lots of doctors dismiss this type of pain.

What about a comparison of waiting until menopause for symptoms to recede versus having a hysterectomy on quality of life.

In reading this study report, Myomectomy: a retrospective study to examine reproductive performance before and after surgery (http://humrep.oupjournals.org/cgi/content/full/14/7/1735),
I noted the following mentions of incomplete research
on the topic:

"Many reports have considered intramural fibroids and subserosal fibroids as a single group, and little attempt has been made to analyse the two groups separately. However, it is possible that the impact of intramural fibroids on reproductive outcome is quite different to that of subserosal fibroids."

"few studies have considered the reproductive performance prior to myomectomy, including the presence of infertility and miscarriage, and hence have not examined how myomectomy alters the reproductive performance."

"there are no prospective data to suggest whether or not intramural or subserosal fibroids increase the rate of pregnancy loss, and to what extent they are the cause of recurrent miscarriage"

"The value of myomectomy for subserosal fibroid is a particularly controversial issue. Our series included 10 cases whose outcome appeared encouraging (conception rate, 80%). However, its effect upon the rate of pregnancy loss requires a much larger observational or randomized control study."

"In our study the reproductive outcomes before and after myomectomy were compared and the subjects did not undergo myomectomy as part of a prospective randomized controlled trial. So far, no such trial has examined reproductive outcome following myomectomy. Until a multicentre study has been carried out, the only available, retrospective, data suggest that myomectomy may improve reproductive outcome."


As a patient I have been told, though I have been unable to find research that backs up these assertions, that:

* c-section will be required post myomectomy

* doctor would be unwilling to work with me as a fertility patient unless I have a myomectomy

A new article/research that looks into the role of progesterone and
estrogen as influencers of fibroid growth.

Sex steroidal regulation of uterine leiomyoma growth and apoptosis

[The abstract is available to anyone, the full text requires a
subscription or you can pay for 24 hour access.]


UPDATE ON ME
My beta dropped this week from last week from 543 to 289 (thurs to
tues) which is a good sign and the doctor says we can just wait and
do another blood draw on Monday (the other alternatives were a repeat d&c or methotraxate - yuck!).

The rest of my bloodwork came back normal, which is good since I've
been bleeding/spotting for a month.

My basel temperature also dropped for the first time since the
miscarriage (where it dropped just one day) and is the lowest it has
been since I got pregnant. Keep your fingers crossed that all goes
well and that I get my period in the next week.

I got measurement info about my fibroid, here's for the last 4
ultrasounds (approximately) -- in September 2002 it was 6x6 cm:

Feb 2004 - 6 x 6.5 x 9 cm

June 9 2004 -- 6 x 7 cm (day I found out I was 2.5 weeks pregnant,
with weekly acupuncture treatments and chinese herbs starting in
January)

July 8 2004 -- 9 x 9 x 11 cm (after 3 weeks on 100mg supplemental
progesterone and one week prior off to the ultrasound - 6.5 weeks
pregnant)

August 17 -- 9 x 7 cm (with beta still elevated post miscarriage)

So today is full of all kinds of good news for me and my partner. We
just got our first pregnancy test positive, confirmed by the doctor's office just a little while ago (my pregnancy hormone level is very good). We've been trying, actively trying, for over 2 years. My partner had a vasectomy reversal in 1998 and we had a sperm morphology issue as well. This happened though completely naturally, the old fashioned way.

I already had an appointment scheduled with the RE (reproductive
endocrinologist) today to check on the size of my fibroid since I've
been going for acupuncture treatment since January. I was worried
because the ultrasound wouldn't be accurate since my period hadn't
arrived yet (with its corresponding drop in the estrogen level). The
fibroid in February measured 6 x 6.5 x 9 cm, today it measured about
6x7. Who knows what's up with it but at least it didn't get larger!!

We are really excited that the "equipment" works and have our fingers crossed.

I don't feel pregnant at all and honestly, I even told the doctor,
when you have a heavy period and it doesn't arrive when you expect it you feel like you are walking on eggshells until it does. I guess the biggest thing is that my PMS symptoms are backing off and I don't feel hormonal or yucky. So far my impression is that this is all a good thing hormonally.

How does one find a fibroid specialist?

I agree, it is a difficult process. Most of the hospitals and clinics around here in the Seattle don't include very substantial information on their doctor profile pages about their expertise. Since OB/Gyn training and practice revolves around surgeries for multiple conditions I think they don't differentiate between procudures. But we as patients desiring uterus saving procedures know that there is a complexity here with the issues of blood loss, adhesions, retaining fertility, etc. that make us want someone who is passionate and fully vested in the outcome of our procedures.

I recently reread Sex, Lies and the Truth About Uterine Fibroids
and in it Carla mentions that some states have databases tracking medical procedures. Here is one of the examples mentioned in the book:

Center for Medical Consumers (NY)

Not all states track this information that it could even be published, that's another place where we need to weigh in and try to get our state legislators to help get us better information.

That said, it still seems like it is hard to find a doctor. There used to be a site that would allow patients to rate their doctors on a variety of criteria but I believe that was bought out by WebMD and it doesn't include that information anymore. Here are links to some directories that might be useful:

uterinefibroids Board Physician Database
Contains names of doctors that have been mentioned in the messages posted to this list with the number of the message to refer to -- inclusion in the database does not qualify as an endorsements of any of the practitioners however.

American College of Obstetrics and Gynecologists Physician Directory

WebMD Physician Directory

AMA Physician Select

You can also find out about licensed doctors in your state by visiting the state medical board web site; do a search to find the link.

The American Society of Reproductive Medicine has a page with links to a few other directories on it....

AMSR: Find a Doctor

MEDICAL RECORDS
Oh, and while we are on the subject, make sure that you request and keep copies of all of your records from the various doctors you see. You can then make copies to take with you if you confer with multiple care providers and it is helpful to be able to refer to them as well. Each State determines how much the clinic is allowed to charge for copies of the records but it seems to average around 75 cent to a dollar per page in my experience. To keep costs down just request the most relevant test results but you may want to have copies of all the chart notes as well. Each clinic will have a slightly different process for requesting records, sometimes a form or sometimes just a letter will do, and most of the ones I've been in contact with accept faxes.

Help Support Fibroid Research & Education

[please feel free to forward this to your friends and family, with whatever modifications you would like to make.]

I wanted to ask you to please contact your representatives to the House and Senate and ask them to support the Uterine Fibroid Research and Education Act of 2003 (House Bill H.R.2157, Senate Bill S.1087). These are both still in the Health subcommittees but it would be
great if more women would write in.

Uterine fibroids, non-cancerous tumors of the uterus, affect between 25% and 80% of women and can cause symptoms that may include: excessive bleeding leading to anemia, infertility, and put pressure on the bladder, urethra, intestines.

From the Senate testimony given last Spring by Maryland Senator Barbara Mikulski (with Senator Hillary Clinton of New York):

"Despite their prevalence, little is known about uterine fibroids, and few good treatment options are available to women who suffer from them. Right now, hysterectomy--the surgical removal of the uterus--is the most common treatment for uterine fibroids. More than 200,000 women undergo a hysterectomy each year to treat their uterine fibroids, which requires a six week recovery, has a 20 to 40 percent
risk of complications, and means a women can no longer bear children. Less invasive treatment options, like drug regimes or fibroid embolyzation, are promising, but many have not undergone the rigorous testing that women expect. In fact, the Agency for Healthcare Research and Quality at the Department of Health and Human Services
found 'a remarkable lack of high quality evidence supporting the effectiveness of most interventions for symptomatic fibroids.'

Women deserve better. That's why I am introducing the uterine Fibroid Research and Education Act--to find new and better ways to treat or even cure uterine fibroids.

This bill does three things. First, it expands research at the National Institutes of Health, NIH, by doubling funding for uterine fibroids every year for the next five years. Despite a budget of over $27 billion, NIH spent just $5 million on uterine fibroids research in 2002. This legislation authorizes $50 million over five years to provide the investment needed to jumpstart basic research and lay the
groundwork to find a cure.

This additional funding will help researchers find out why so many women get uterine fibroids, why African American women are disproportionately affected, what tests women can take to prevent uterine fibroids, and what are the best ways to treat them."

The research they might be able to do if this is approved could help other reproductive and gynecological conditions as well. At the very least it would help make sure women are given other options before hysterectomy.

Find your representatives here:

http://www.senate.gov/
http://www.house.gov/

To learn more about uterine fibroids, visit the National Uterine Fibroid Foundation website: http://www.nuff.org/health_statistics.htm

Anyone know the status of the fibroid research and education bills?

I wrote to my representatives last winter about the 2002 attempt to get this passed and wasn't paying attention when they were introduced again this past Spring.

Anyone know the status of Senate Bill 1087 and House Bill 2157 regarding funding for education and research of uterine fibroids? They were referred to commitee but I don't see anything on the committee web pages.

I thought this was a great line from the start of HB2157:

"The Agency for Healthcare Research and Quality found a 'remarkable lack of high quality evidence supporting the effectiveness of most interventions for symptomatic fibroids'."

Might we want to do a push where we write and call into our representatives? If I have time I might call the offices of some of the committee members to see what's up next week.

Here are some links:

House Bill 2157

Senate Bill 1087

What I've learned so far

I thought I would share some of what I've learned over the past year from various doctors including a naturopath. This may differ from what you've been told and I'm just a regular old person so you should definately talk to your doctor about any treatments options you might like to pursue.

Fibroids are spongy tissue that change size with the levels of your hormones in your cycle. They respond particularly much to estrogen, they aren't as sure about progesterone. Un-opposed estrogen in your body, that is estrogen that is not matched with a comparable level of progesterone, is believed to be a factor. Pain is caused partially by prostaglandins which fluctuate during the month as well; ibuprofen may be taken preventatively to help manage prostaglandin production but it isn't good for your liver.

Your liver is a key organ in balancing your hormones. This organ filters out excess hormones from your system and packs them up for excretion through the bowels. Constipation and sluggish bowel movements mean that your body isn't able to efficiently expel waste from the system; you should be having a bowel movement at least once a day otherwise this is you. What is worse is that in your intestines the body will reabsorb the excess hormones back into the system causing a build-up and making your liver work double-time. Many women have problems with constipation and progesterone during the second half of our cycle (post ovulation) is partially to blame.

Small dietary changes can really help your liver out; I tried these things suggested by my naturopathic doctor and my fibroid did not grow at all during the next 8 months.

* Drink at least 6 glasses of water each day
* Increase your consumption of foods that help detoxify your liver:
green leafy vegetable (chard, collard greens, spinach, etc.), garlic,
onions, artichokes, lemons
* Decrease your consumption of refined sugars (this can increase your body's production of stress hormones which might be linked)
* Eat organic foods only
* Decrease your consumption of meat
* Increase your consumption of fish to 2-3 times a week

I was taking vitamins and herbal supplements and used castor oil packs for about a month (they are a pain but they sure help you slow down and take a break before bed. I also greatly reduced the amount of stress in my life and increased the amount of exercise I was doing. I read about progesterone supplementation but my naturopath said that doing that would actually compromise my body's ability to produce progesterone on its own; instead she wanted to help coax my body back into balance. After about 6 months of treatment my cycle had changed. I no longer have PMS for 2 weeks out of every month and even my allergies have subsided. I'm amazed.

I have a 6cm intramural fibroid and the doctors have told me that you can't have a fibroid as large as I do without a major distortion of the uterus (an x-ray in June revealed that my uterus is wrapped around the fibroid to the right). Women who have one large fibroid tend to not get addition fibroids, women with multiple fibroids tend to get re-growth. I'm scheduled for an abdominal myomectomy at the beginning of October.

My younger sister just had an abdominal myomectomy this past March for multiple fibroids, she even had one pressing on a major artery at the back to the abdomen that doctors shrugged off for year as pain "in her head" without doing any diagnostics on her. She was on birth control pills (BCP) for the past 10 years at least, on "continuous cycling". I was never on BCP and I only have one fibroid. We've learned that our mother had a fibroid when she was in her 40s but was able to wait it out until menopause and our great grandmother had one the size of a "cantaloupe" and needed emergency surgery.

I hope this is helpful for you.