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Uterine Fibroids, Pregnancy, Cesarean

The story behind the "Fibroid Photo" (part #2)

(Thank you for sending your story and fibroid photo to Hope For Fibroids, Inc. Your article will help other women and their families during their uterine fibroid discovery, treatment, and recovery. - Hope)

Please keep in mind that the medical discussion in our answers is a reflection of the various medical opinions and research we have done; the diversity of opinions and medical approaches suggested by the many doctors we have consulted reflect how difficult it is to determine "truth"- so we will try to give you a distillation of our understanding. - Mother, Dad, & Baby

Ok, so here goes:

When did you find out you had fibroids?

Unfortunately the fibroids were discovered when my wife went in for her initial exam to determine the state of the pregnancy. My wife (age 44) was not compelled to visit doctors as she felt (at that time) that if nothing was wrong, there was no reason to go to one.

When, 2 years prior to actually conceiving our child, we decided to try to have a baby, I suggested that she choose and visit an OB to get a general checkup to make sure everything was normal. At that time, the doctor did not notice anything out of the ordinary through a manual exam (!) and scheduled her for an ultrasound. The ultrasound would have revealed the fibroids, except for a twist of fate: the lab she was referred to would not take our insurance, so she decided not to go through with it. She felt we could re-schedule elsewhere. But, we got busier at work and kept putting it off until it was forgotten. Of course, the fact that we could not conceive should have told us something! We simply felt that if we could not conceive, then it was not meant to be.

Side note: The second OB that examined her manually immediately noticed that her uterus was huge and wanted to know right away why. She was surprised that anyone could have missed it. In defense of the first doctor, it could have grown in the period between exams, but I also realize that she exhibited symptoms during our life together (5 years by then): she had to visit the restroom to urinate often (bladder crowded out?), her bowel movements were rather .....small (colon compressed?) and complained of back pains on occasion- all conjecture of course, but it makes one wonder.

The obvious lesson here is that one should always get regular checkups as recommended, especially as we get into our late 30's....

Did the fibroids cause any problems during the pregnancy?

Fortunately, the fibroids did not cause any problems for the child. She did experience pain however. Other than the pain due to the excessive mass and the additional pressure from the mass on her organs, some of the pains were explained to us to result from the competition for blood; when the fibroid or part of the fibroid was apparently degenerating she experienced some cramp-like pains. The fibroids did increase in size during the pregnancy, apparently due to the hormones and increased nutrients going to the uterus.

My wife probably had twice as many ultrasound visits as the normal mother: they needed to track that the baby was growing normally, as well as the volume of the amniotic fluid, orientation of the fetus, status of the fibroids, and status of the umbilical blood flow. Later they would use the ultrasound to determine the path they would take to perform the cesarean- mapping where the major blood vessels ran.

The fibroids presented a bit of a challenge to the doctor who performed the amniocentesis, as she had to find an appropriate path for the probe so as to avoid passing through the fibroids. There was some bleeding immediately after the procedure that the doctor was concerned about, but further testing showed no blood in the urine and no further complications.

The doctors were not extremely optimistic at the outset of the pregnancy, however.

They explained that if the placenta attached itself near the fibroid that the potential existed for it to detach at some point. The fibroids apparently could also have robbed more nutrients and slowed the fetus's development. It might have been responsible for her having contractions 2 weeks early, but that of course could have happened without the fibroid's existence as well.

Our child's head was somewhat distorted from being squeezed between the fibroid and her pelvis, but that quickly disappeared.

In summation, the fetus and placenta ended up being attached to an area opposite the fibroid growth, thus avoiding a host of possible complications. Umbilical blood flow was unobstructed, and the fetus was receiving sufficient nutrients judging by the regular growth of the baby.

Did you have a cesarean because of the fibroids?

Absolutely- the fibroid was determined by several doctors to be blocking/compressing the cervix. Perhaps if the fibroids were situated in another region she might not have needed the cesarean. My feeling is that given the size of the fibroids they probably would have done it anyway to avoid any possibility for complications.

How do you feel after the cesarean since you still have the fibroids?

She had some discomfort from the mass sliding around in her belly. The biggest complication that persists is apparently due to the degeneration of the fibroids. She has intermittent pain from the degeneration.

The biggest care occurred 1-2 weeks after the cesarean. She developed a high fever (102-104+) for 5 days. The initial thought was that the fever was due to an infection related to the surgery. But the fever did not respond to the intravenous administration of antibiotics. An infectious disease specialist was brought in to take some tests, but nothing was ever discovered. In their final analysis, doctors determined that the fibroid itself was inflamed.

Currently she has constant tenderness in the lower abdomen and has the constant sensation that her period is starting (she has not had a period since she became pregnant as she is currently breast feeding).

There are odd periods when she feels weak and fatigued, but raising a newborn can of course cause that!

What are you going to do about the fibroids after the cesarean? What steps are you taking - research?

This one we could really write volumes about....

The primary goal was to preserve the uterus and ovaries- so the hysterectomy that several doctors suggested as the safest/easiest option was out of the question.

The first step we took was to find a number of doctors with whom we could consult to get as many opinions as possible. We, at first, did not seek anyone known experts in the treatment of fibroids- so the advice we received clearly was biased to their personal expertise. The general consensus was that the fibroid needed to be reduced in size before those doctors would attempt surgery.

The OB/GYN that delivered our child strongly recommended that she go on a several month course of Lupron injections, which basically suppresses estrogen production, in an attempt to shrink the tumor. He made it very clear that he was not comfortable attempting to remove the tumor at its current size. He also admitted to us that if she did not want to undergo the Lupron treatment, he would have to refer us elsewhere.

Most of the doctors (we consulted 6 or so) also emphasized that a hysterectomy might be necessary if complications such as excessive bleeding occurred.

A few discussed the Uterine Artery Embolization procedure but did not direct us to a specific doctor or hospital.

The second step in our quest was to conduct our own research, primarily through the Internet.

We gave equal weight to anecdotal information and news stories as to pure information and research sources. As one can well imagine- the Internet allows us to access more information more quickly than ever before.

One of our favorite sites was the “Hope for Fibroids” website hosted by laypersons Hope and Mike Waltman. Through their informative website we were led to several apparently highly regarded doctors who have placed themselves at the forefront of research and surgical techniques with regards to fibroid treatment. Of the doctors listed, Dr. William Parker happened to be relatively close by; Hope personally contacted this doctor on our behalf, and she will be having her surgery performed by him.

This particular doctor was wonderful; he presented all possible options with their respective faults and benefits. He then explained which he thought best in her particular case. Most significantly, he may have saved her from undergoing unnecessary and expensive treatments for nearly no benefit.

In sum, here were the standard options with our specific comments:

  1. Do nothing- as the fibroid was not bleeding or cancerous, it wasn’t a significant enough of a health risk to require removal/treatment. It was more of a quality of life concern (constant mild discomfort, aesthetically unappealing, etc.).

  2. Medication-the option requiring administration of Lupron was extremely expensive and essentially unnecessary; the problems and cost outweighed any possible benefit- in fact, there could be no benefit at all. Especially since the fibroid was so large- even at half size it would still be quite large.

  3. Surgery:

  • Myomectomy, removal of the tissue- quickest and most direct method; the pictures we supplied him were sufficient information to proceed with this approach. With the uterus brought out of the body cavity, he could easily see the necessary steps to take.

  • Laser or mechanical laparoscopy – removal with a laparoscope would be possible to do but would require lots of time and an MRI to determine what to do in the areas closest to the normal uterine tissue since the organs would remain in the body and not easily observable.

  •  Hysterectomy- not a viable option for us, not deemed necessary by the doctor.

  1. Uterine Artery Embolization – an interesting option with low invasiveness similar to laparoscopy, with numerous successes. But we felt that given the size of her fibroid, the remaining mass after the procedure would still be large enough to be a bother. Primarily though, she wasn’t completely comfortable with having something injected into her artery to block certain pathways.

We decided on a myomectomy. It is important to emphasize that had we not found a surgeon with the necessary experience, we would almost definitely have chosen something else.

Our research indicated that both the myomectomy and the UAE procedures are specialized enough to require the services of the most experienced doctor you can possibly find- even if it requires you to fly somewhere (in our humble opinion, anyway).

So there you have it…..we will provide an update in the next few weeks as she undergoes the procedure and recovery…

See the "Fibroid Photo" at Cesarean Section, Large 25cm Uterine Fibroid, and Baby

Read more:  Dr. Paul Indman's - What Women Are Saying (Comments about their fibroid journey)

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