Fibroid Embolization (UFE/UAE) - Finding an Interventional Radiologist

I just did a search of my blog and couldn't find any info (though I know I researched it) related to how to find an interventional radiologist (IR) if you are interested in UFE/UAE. Here are some links to learn more:

ASK4UFE IR Locator

Society of Interventional Radiologist - Doctor Finder


Here's an informational link about UFE and fibroid treatment options:
Uterine Fibroid Symptoms, Diagnosis and Treatment

Fibroids and Fertility

Some of the better links I've found which discuss fibroids and fibroid treatments impact on fertility.

GENERAL

Fibroids & Fertility

Fibroids and Younger Women

Management of Uterine Fibroids

Myomectomy: It's Role in Infertility

FIBROIDS AND MISCARRIAGE

Recurrent Miscarriage (Pregnancy Loss)

Small fibroids may increase miscarriage risk
Small uterine fibroids may increase the risk of miscarriage, according to early findings from a study by researchers at the University of North Carolina at Chapel Hill.


MYOMECTOMY & UFE

Gynecologic Myomectomy

Long-term results of laparoscopic myomectomy: recurrence rate in comparison with abdominal myomectomy

Myomectomy
Article about endoscopic myomectomy

Myomectomy During Cesarean Section – Time To Reconsider?
A medical article looking at removing fibroids during cesarian delivery

Myomectomy: a retrospective study to examine reproductive performance before and after surgery.
Watch a web video of a myomectomy being done

Replay of: Abdominal Myomectomy-A Treatment for the Removal of Fibroids

Fibroid Embolization (UAE/UFE) for Women of Childbearing Age

(to a woman interested in learning more about whether or not it impairs fertility)

I considered this procedure in 2003 so let me share some of what I learned with you.

Women have successfully conceived and carried to term post-UAE (aka: UFE or embolization), however since there have no been many studies of the outcomes post procedure in women of child-bearing age many (if not most) doctors will not recommend it to their patient if they are wanting to have children afterwards. There have even been IVF pregnancies post UAE, though still, how many isn't well documented or studied.

Here's a link you might want to refer to, it treats the topic fairly:http://www.fibroiduae.com/fibro5c.htm

I haven't looked into it in a while but as I recall the risks of the procedure specifically for this population include:

• possible increase in risk of uterine rupture during pregnancy/delivery (small percentage)
  
• possible misembolization of ovaries which could compromise their function or cause menopause
  
• possible risk of infection from degenerated fibroid tissue
  
• possible misembolization of pelvic blood flow compromising sexual function

The SIR (American Society of Interventional Radiologists) qualifications for UAE candidate selection excluded women of childbearing age at this time until there is more study of the outcomes, though it does include women who are unwilling to have surgery -- even they recognize that there is a grey area here (I spoke with the author and that is how I know this).

If you wanted to have the procedure done, I believe that you would want to have an MRI ahead of time (as to the specifications of the IR), and know that other conditions should be ruled out -- such as adenomyosis or cancer (as someone reminded me the other day). The IR I consulted with said that in his experience fibroids greater than 1cm but not larger than 8cm were ideal for the procedure as these have both a large enough blood supply and will shrink enough to have a positive affect. If you check on the embo list (http://health.groups.yahoo.com/group/embo/) I bet you will find women there who have had the procedure with fibroids outside of that range.

I found doctors with differing opinions of the procedure myself, though I decided to try acupuncture and chinese medicine first (which did help to shrink my fibroid some over 4 months) only to get pregnant and have my fibroid double in size and cause problems that assured me that having a myomectomy was the best route for me in the end.

Good luck with your research and decision making.

Sheesh!

So, I've been keeping you apprised of my situation. I just got off the phone with the RE (RE#2) and here's what he told me...

...that they won't do fertility treatments on me unless I have my fibroid treated

...that if I have the embolization they won't accept me as a fertility patient

...that they recommend myomectomy

...that he no longer authorized the MRI

They won't do fertility treatments if I have the embo because they are worried about the uterine wall being weak (weaker than a uterus that has had multiple fibroids removed -- aka. myomectomy!?) and the possibility of multiple births being so much higher with fertility treatments. They are also a little concerned about not the liability but their stats, that somehow I might compromise their success rates.

Heck, no one knows why I haven't been able to get pregnant, it could be any of the following that I've been able to deduce...

* sperm morphology
* low progesterone (I started using natural progesterone cream)
* anemia/low ferritin (being treated)
* fibroid (though I've never even been kinda sorta pregnant)

I don't even know what to think know. It seems like my options are a) leave it up to God, or b) do the embo and then leave it up to God, or c) do the embo and do fertility treatments if needed, elsewhere.

We're not interested in adoption.

Maybe I should just go save the dying children in 3rd world nations and give up on this mother thing.

Back from RE#2

I've just gotten back from a visit with the RE and guess what my pooled progesterone test showed....I have low progesterone. (I feel like I have a twisted mind because I'm glad they actually found something off in my endocrine system). The doctor said that they would have to supplement me during the second half of my cycle when I was trying to conceive (um, wasn't that what I was already doing?). My progesterone is 9.4 and I found mention of it on a site that said "A level above 15 ng/dl is desirable".

I brought up the desire to have UAE with him and he said he could tell I was extremely knowledgeble on the subject -- thanks of course to the ladies on the NUFF group and on the embo list. He wasn't aware that there was anyone doing the procedure at that medical center (and the RE is the head of the fertility clinic) so my research and consultations with the IR may help other women as well. He did mention that he was understanding my willingness to be a guinea pig (which I am), since there isn't that much information (no randomized studies) on the affects of embolization on fertility.

He told me that I should continue taking iron supplementation ongoing due to my heavier periods. I know this to be true even though my menorrhagia (heavy periods) are nothing compared to the flooding some other women have reported in the NUFF group. FYI my period lasts a full 7 days, it is a little heavier now than when I was younger (I'm now 33) but not dramatically so. I do have some clotting and I do also double up on protection since a bad episode with flooding when I was in high school.

He said that there wasn't a link between hypothyroidism and low progesterone (although Dr Lee mentioned that low progesterone may mimic mild hypothyroidism).

I have a referral/Rx for the MRI now so I can schedule that and get more info.

So, it wasn't that bad and we didn't get into any arguments. He's going to consult with the IR next week.

Stay tuned for more info soon.

Response to someone concerned about myo and bleeding

You can ask your doctor to have an Interventional Radiologist (IR) on call in case there is excessive bleeding. That way they can stop the bad bleeding.

Remember as well that the UAE procedure was discovered as an effective treatment for fibroids because a surgeon in France sent in some of his patient to get embolized prior to their myomectomies --so he could reduce the amount of bleeding during the surgery. Rather than being polar opposites or just alternate procedures, myomectomy and UAE are also complementary procedures.

The IR I've been talking to about UAE here in Seattle told me that he recently was called in, after there was excessive bleeding and some other complications arose from a myomectomy. He asked the surgeon why he didn't just call him in when things first started going wrong. The surgeon just hadn't thought of it.

If our doctors are going to rely solely on their training, which most of the time didn't include interventional radiology as an approach to stopping hemorrhaging, to do these procedures and aren't going to be a little more creative about taking advantage of alternate approaches than it is even more important that we educate them. The risks of hemorrhaging are there with all of the gynocologic surgeries including hysterectomy, myomectomy, c-section, and even with childbirth (and probably miscarriage too).

Going in for a Consult with the RE about UAE

I'm going in to see the RE (reproductive endocrinologist) next Friday. He's one of the doctors I interviewed for my myomectomy (the one I cancelled last month). I needed to continue working getting more information, particularly about my hormones, and he was the only one that suggested that I have my progesterone level checked prior to surgery. I just did the pooled progesterone test this past cycle, 3 blood draws on days 5-9 post ovulation. I'll get the results at this appointment. (I'm kind of hoping they say that my levels are low, just so that there would really be something wrong with me -- do you ever feel that way too?)

I'm feeling a little nervous about going in and telling him that I want to have the embolization procedure instead. I'm afraid of having to get into a disagreement with him, where he doesn't believe in UAE for women trying to conceive. Well, if I don't like his reaction then I just will have to work with a different doctor.

One thing I've been thinking about is that for years I had low level anemia and none of my doctors made a big deal about it. I didn't like to take pills/vitamins and besides my doctors said that some women just tend to run anemic. My naturopath that I started seeing right after I was diagnosed with my fibroid last year thought that this anemia needed correction and I think she was right. I was so used to having low energy that I didn't even realize the affects, or even that I could feel differently. I think probably a lot of us had heavier periods our whole lives and didn't understand the affects of that on our health.

I still have low ferritin, at least as of September. I basically have to just take iron supplements ongoing. Luckily I've found a chewable type that is agreeable with my system. Related to the fertilty issue that many of us are dealing with, I found this mention yesterday and thought it interesting (link to full article is below), especially in light of the fact that many of us our anemic here.

"Be sure your iron levels are adequate. A blood test (a ferritin level combined with an iron level and iron binding capacity) will tell you this. Unfortunately, doctors are trained to say the iron is normal if your ferritin level is at least 9 ng/ml. Although a ferritin level of 9 shows you have enough iron to prevent anemia, one can have infertility from ferritin levels less than 40. Because of this, I would look at your ferritin test results yourself and make sure the level is at least 40 ng per ml. In a study of women with infertility with ferritin levels less than 40, half of the women quickly became pregnant when put on iron. If for some reason you are unable to get your ferritin level checked, it is not unreasonable to take iron (e.g. Ferrous Sequels 1 tablet 1-2 times a day for four months). I also would take iron if the percent saturation of iron (calculated from the iron & percent saturation tests noted above) is
under 22%."
From: Effective Holistic Treatment for Infertility