Uterine Fibroids Blog — An Expert Speaks Out

Deborah, a 54 year old woman from the Midwest, called stating that her uterus had multiple fibroids which have grown over the last two years, and she wanted to avoid a hysterectomy for personal reasons. She was having regular menstrual periods and lab work (FSH) showed that she was not yet menopausal, and was quite uncomfortable from the pressure of her huge uterus and heavy menstrual bleeding.  An MRI was ordered, in which over 30 fibroids were identified.    (Sticky post) Read the rest of this entry »

At the time I was starting this blog two patients with similar fibroids came to see me. Both were severely anemic, and one was hemorrhaging and in shock.
Before any procedure was done I received both patients’ permission to share their stories.  At the time of the initial writing one had treatment 6 weeks ago and one 3 weeks ago.  Neither of their experiences to date are necessarily typical, but I am following through on my commitment to share their stories.

Comment:   (Updated 6-17-2010)

Yesterday was a difficult day. We did surgery on my first patient (who had the embolization) and found a high-grade sarcoma (cancer) which had spread throughout the abdomen. I talked to her about deleting her story, but she was comfortable with leaving it in.  Uterine sarcoma is very uncommon, being seen in fewer than 1 in 500 rapidly growing fibroids. The risk of cancer is much lower for fibroids that are not rapidly growing. Benign fibroids have never been shown to undergo malignant change.

Could this have been diagnosed earlier, and if so would it have made a difference? Probably not.  There is a single study in which a blood test coupled with a special MRI done with IV contrast rapidly infused differentiated between sarcoma and fibroids.  To my knowledge this has not been confirmed by other studies, and by the time the tumor can be diagnosed there is a high probability that it would have already spread.

It is easy to overreact and be overly aggressive in removing fibroids because of the fear of cancer, which is in fact rare. We would be doing hundreds of unnecessary surgeries to find a single sarcoma.  Yes, had she chosen myomectomy or hysterectomy, we would have diagnosed her sarcoma two months earlier, but it is unlikely that the outcome would be different.  I was tempted to remove this story for fear that it would frighten women into surgery that is not needed.  But I promised to tell the story as it is.  Please understand that this is very unusual, and most women do well when embolization is done in appropriate situations.  — Paul Indman, M.D

Should I have my fibroids removed before I try to get pregnant?  That is one of the most difficult questions I have to answer!  Here is what we know:

1. Submucous fibroids, or intramural fibroids that indent the endometrial cavity (inside of the uterus) significantly decrease the chances of conception, and increase the miscarriage rate. Large intramural fibroids (in the wall of the uterus) can have a submucous portion that distorts the cavity and should be considered included in this group.  Fibroids that are mostly in the endometrial cavity can usually be removed by outpatient hysteroscopic myomectomy (hysteroscopic resection).  This should only be done by a gynecologist with extensive experience in hysteroscopic surgery to reduce the risk of  scar tissue formation.  Although it may be possible to remove some submucous fibroids that are mostly in the wall hysteroscopically, if they are large they should be removed by abdominal, laparoscopic, or robotic myomectomy.
2. Intramural fibroids that do not indent the cavity appear to decrease fertility and increase miscarriage rates, but studies are inconclusive. Even if this is the case, studies are lacking to show that removing these fibroids increases the chance of successful pregnancy.
3. There is no evidence that subserous fibroids interfere with conception or increase the miscarriage rate.

Fibroids in Pregnancy

Although we used to think that pregnancy causes fibroids to increase in size, ultrasound studies show that they usually do not grow.  They often feel larger because the whole uterus is larger.

Some of the problems fibroids can cause are:

1. Pain, which can be severe enough to require hospitalization.  Sometimes a fibroid may infarct or cause pain because of decreased blood flow.
2. Increased risk of placenta problems such as abruption (premature separation of the placenta).
3. Increased risk of prematurity.
4. Increased risk of cesarean section.
5. Increased risk for post-partum hemorrhage.

The risks of serious complication are low.  Most women with fibroids go through pregnancy without any problems.

Treatment recommendation for fibroids before attempting pregnancy

There is no way I or any other physician can make specific recommendations without evaluating you individually!  These are general recommendations, and should not be followed without advice from your own physician.

If fibroids are causing symptoms such as heavy bleeding, pain or pressure it is usually reasonable to remove them.  If the fibroids are not causing symptoms, the following are general recommendations.

1.  Most submucous fibroids should be removed.  Hysteroscopic myomectomy, when done by an expert, is the treatment of choice in most situations.

2. Intramural fibroids that distort the endometrial cavity should usually be removed before attempting pregnancy.

3.  Intramural myomas that do not distort the endometrial cavity and are not causing symptoms usually do not need to be removed before attempting pregnancy.  There is no evidence that removing them improves pregnancy outcomes.

4.  Subserous myomas, unless large enough to cause symptoms, do not need to be removed prior to pregnancy.

Is myomectomy risky? This obviously depends on the skill of the surgeon.  The risk of needing to do a hysterectomy at the time should be less than 1 in 100.  I have never had to do an unplanned hysterectomy in a woman of reproductive age when I had planned to do a myomectomy.  While adhesions can develop, there are a techniques to minimize them.  All in all, myomectomy should not lower, and in many cases will improve the chances for a successful pregnancy.  Be aware that if many or deep fibroids are removed (except by hysteroscopic myomectomy) a cesarean delivery will often be recommended.

What about other treatments, such as embolization (UAE or UFE)?  Embolization blocks the blood vessels to the fibroids and/or uterus.  Although new blood vessels my take over to supply the uterus, the effect on pregnancy is unknown.  While there have been successful pregnancies after embolization, it also can decrease ovarian reserve or menopause as well as causing intrauterine adhesions (Asherman’s syndrome).  Therefore I, and most experts in fertility, would only recommend embolization as a last resort in women desiring pregnancy.

Uterine Fibroids can effect quality of life, can at times cause dangerous problems such as severe hemorrhage, but most often cause no problems at all.  The first question to ask is should fibroids be treated rather than how.

Fibroids should be treated if they cause heavy bleeding resulting in anemia that can’t be controlled with iron and medicines.  Fibroids that prolapse (protrude) through the cervix often cause heavy bleeding, pain, and can become infected.  Certain types of fibroids can cause infertility or difficulty in pregnancy.  These fibroids should be treated.

I like to draw analogies.  Imagine you have a car and the brakes don’t work.  If you don’t fix them immediately bad things will happen!

Many fibroids are so small that a woman is unaware that she has them, or cause only minimal symptoms.  These can be watched by a gynecologist and many never require any treatment.

The decision of when and how to treat fibroids that interfere with the quality of life without actually presenting a major health hazard can be difficult.  Let me present  two examples of such problems that can be caused by fibroids:

• Joan notices that it is difficult to fit in her clothes because her fibroids make her look like she is 5 months pregnant.  She has to urinate frequently, and is bothered by the pressure.
• Kristine is a teacher, and has periods so heavy that she is afraid she’ll soak through her clothes several days a month.  She frequently bleeds between periods, and finds it difficult to plan vacations because of her bleeding.  She takes iron, so her blood count is normal.

Let’s get back to the car analogy.  Let’s say the heater and air conditioner don’t work and the windows are stuck down in a town where it’s zero degrees in the winter and 105 in the summer.  When does the car need to be fixed?  When you are tired of freezing or roasting.   But it’s not like driving without brakes, as it’s a matter of comfort rather than safety.  The decision is not that different than deciding when to treat fibroids.  When they interfere with your ability to do what you want to do you should consider treatment.

It’s important to remember that fibroids often grow until menopause, and then usually decrease in size.  A woman who is 30 has many year until menopause, and it is likely that if she is bothered by fibroids it will only get worse over the years.  On the other hand a woman who is 49 would be expected to reach menopause soon, and if there are ways to control her symptoms from the fibroids there is a reasonable chance that they may improve after menopause.

Once the decision is made that fibroids should be treated, the next question is how.  There are many different procedures, each claiming to be the greatest and the best.  While I will be writing about many methods of fibroid treatments in detail, it is far less confusing if you realize that all of the methods fall into four basic categories:

1. Medical treatment of fibroids.  While there are no medicines that cure fibroids, there are medicines that may control symptoms and result in a temporary decrease in size.
2. Destroy the fibroids.  These methods leave the fibroids in place, but attempt to kill them by cutting off their blood supply, or using electrical, thermal, or ultrasound energy to “cook” them.  The body then absorbs the dead tissue.
3. Take out the fibroids.  Depending on size and location, fibroids may be removed through an incision, a laparoscope or robot, or through the cervix (hysteroscopically).  Once the fibroids are gone they do not grow back, but new fibroids can grow.
4. Take out the uterus.  This guarantees that the fibroids are gone forever.  There are some situations where this is the best option and many in which it is unacceptable.  More about this in the oncoming months.

Another factor in planning treatment is the desire for future pregnancy.  I’ll talk about fibroids and pregnancy in the future, but obviously a hysterectomy is out of the question for someone who wants to have a baby.  I have serious reservations about any of the destructive procedures, such as embolization (UFE) if future pregnancy is desired.  If we are going to remove the fibroids then we need to consider which procedure is most likely to leave a normal uterus.

Lastly, preference is definitely important.  Back to the car analogy…. If  you tell me you want a red car because red cars are faster than blue cars we can do an experiment and race them.  But if you tell me you want a red car because you hate blue, it is a matter of personal preference.  I see many women for myomectomy that could be appropriately treated by other methods such as embolization or hysterectomy, but they don’t like the idea of losing their uterus and don’t want foreign particles in their body.  My job is to inform them of the advantages and disadvantages of each of these choices, and help them decide which treatment best suits their lifestyle and personal beliefs.

The most important thing to realize is that you can not make a decision  about which treatment is most appropriate just by reading!!! A 3 cm. (1+ inch) fibroid that is inside the cavity of the uterus and causing heavy periods is almost always best treated by hysteroscopic resection, a quick outpatient procedure.  If the same size fibroid is mostly in the wall the treatment may be different, or it may not need to be treated at all.  While it is good to learn as much as you can by reading an appropriate treatment plan can only be reached after an accurate diagnosis. Unfortunately there are varying abilities to make an accurate diagnosis.  I find reading an ultrasound report much like reading a movie review in the newspaper.  Sometimes it’s right on and sometimes you can’t believe it’s the same movie.  I  see women who have been told they have fibroids turn out to have adenomyosis or at times ovarian cysts, or even nothing at all.  While it is good to learn about different treatment methods, you need the help of a gynecologist knowledgable about all options to help you decide what is best for your individual situation.