Embolization or hyster (updated: embolization on Nov 21)

Fibroids don't seem to get better. My last period before ufe lasted 84 days. I was so miserable and bled profusely. I can certainly relate to how you are feeling! Maybe a nice hot bath will make you feel better. Keep me posted please.

84 days!!!!! I'm so sorry. That is horrible.

I sent a list of follow-up questions to the ob/gyn I saw last week and haven't heard back yet...really want to ensure that I'm a candidate for the UAE.

I have an appt with my regular doc next week and am going to ask her about a couple of other things going on with me as well - periodic swollen lymph nodes in my head and neck that come and go; extreme itching all over my body especially at night; a light rash on my arms and legs that comes and goes; etc. Wondering if it's all part of the hormones/fibroids or if there could be (even) more going on. Hoping it's just the fibroids and hormones - I was reading about how fibroids release some kind of hormone-like substance that just keeps feeding them and contributing to excess estrogen. Has anyone read/had experience with estrogen dominance"?

The one who determines if you are a candidate for UFE is ultimately the Interventional Radiologist. Some doctors don't seem to know much about it even though it has been around for a long time. For instance yours making the comment fibroids can grow back (might not be you) is wrong. That is rare. It is not rare with myos. It concerns me this is being confused. My doctor told me "UFE is wonderful" and he was right.

Get a referral for an IR so he can read your ultrasound. I would urge you to begin gathering info about UFE from the net as there is lots. There is actually a new fibroid treatment called Asseca (sic) where the fibroid is ablated via radio frequency waves, instantly killing it and leaving the shell. Like UFE the body reabsorbs the waste. It is at a hospital in the NE (can't remember which city). It is supposed to be very promising. I have some really great sources about fibroids and estrogen dominance but am not sure I'm allowed to name book titles on this site...Do you know?

Interesting about the swollen lymph nodes you have. The first weird thing I noticed was swollen lymph glands under my arms while in the shower and later in my neck. After that followed weight gain and terrible bloating. Outside of pregnancy I never had a weight problem until fibroids. Fibroids are notorious for increasing fat cells. You know why? The more fat cells, the more storage for estrogen. Fat cells harbor estrogen and fibroids love and thrive on estrogen! Heck they like progesterone too. Fibroids are hormone consumers and manufacturers. They make an enzyme called aromatase which mirrors estrogen in nature.

As the fibroid grows instead of releasing the aromatase/ estrogen via the skin and liver it recycles it through the body to feed the fibroid. It is a vicious and ugly hormonal circle. It is at this point that levels, so out of whack, come under the category of estrogen dominance. We begin to bleed heavily as well as have a plethora of many other unpleasant occurrences related to our cycles. My breasts were so tender that I would cry out in pain if they were jostled expectantly by something like my purse.

It is at this point to counter the estrogen dominance doctors often give Depo Provera shots or progesterone based bcp. Not a good idea. It may help for awhile but then the bleeding often becomes worse as do other symptoms. Dang things love progesterone too. I refused to allow any shots or to take BCP. It did not seem like a good idea to me. In my opinion, I needed less, not more and did not want to monkey around with things that were all ready terrible.

I don't want to be negative but do be prepared for naysayers. This is why I urge you to do your homework. There are some great websites about UFE as well as an interventional radiologist search tool. My experience proved some doctors were more concerned with revenues than in listening to me and what I wanted for my body. This was very frustrating.

Margie

Thanks for all that GREAT information! I've been reading a lot about this in the week since I found out about my fibroids and I find it fascinating. I've always been very interested in health issues, but this in particular (learning about our hormones and how much they affect our entire bodies) - as well as learning about foods and products we consume and how they impact our hormonal issues - is very interesting to me.

Aromatase - that's the word I read about - couldn't remember it.

I'm in Minnesota and they do the Acessa thing at the Mayo Clinic here. But my insurance won't cover it at all because they consider it "investigative." A friend of mine told me to challenge that in writing by listing the reasons why it would be more beneficial and cost-effective to do that treatment than to have a hysterectomy. So..we'll see. In the meantime, I am working on getting in to see an IR - there's a hospital here that has an actual Fibroid Clinic and it sounds like they're leaders in the UAE treatment world, so that's awesome.

Basically, I'm planning to have the UAE (ASAP, haha) as long as an IR believes I'd be a good candidate. I'm just not quite ready to have a hysterectomy, even though we aren't planning on having children. It's such major surgery and though it would address the fibroid issues for good, I am worried that I'd end up trading one problem for another (or several more) since I'm pretty far away from natural menopause right now.

Not sure why the ob/gyn I saw is saying that new ones can grow, and that embolization "works best if you only have one fibroid less than 5 cm" (direct quote from her nurse today). Still, they are going to give me a referral to an IR. I also went on my own and made an appt with a different clinic (the fibroid clinic here) - can't get in until early October there, but it doesn't hurt to see more than one, right? I just want some relief...feel like I'm about 8 months pregnant right now (though technically my uterus is about 3-4 months "pregnant," haha), having issues with bowels, bladder, back, etc. I'm really dreading my next period since this last one was the worst EVER. (Though not 84 days, so really I should be counting my blessings!!!)

I am familiar with a group of women and only one of us had new ones grow after embolization so it can happen. Some have one fibroid and others have what is called "fruit bowls" (multiple fibroids of various shapes and sizes). Many women who have/had fibroids much larger than yours or mine had very successful results with UFE. Believe it or not my fibroid that measured a bit less than 9 cm is considered moderate size and yours sounds smaller. Many had fibroids much larger. The highest I think was 18cm and a lady recently had UFE for one at 15cm. Those are big monsters!

I learned when an issue or treatment is outside the norm of for a doctor it is hard to rely on the information given because the doctor is not up to date with advancements. This may have been the situation 10 years ago but may not be a valid concern now. My doctor was highly rated and was not biased on what treatment I should have. He said I needed to do something and raved over UFE. Told me I was the perfect candidate and he was right.

At least you got your referral and that is what matters! The IR will know far better than your doctor as he is the specialist. Yes, I agree 100% that 2 (or more) interviews with IR's is the way to go. Be sure to rate them. My doctor was familiar with the procedure and was insistent that I use a particular one. I planned my procedure around his schedule and got him! He was serious and meticulous individual who blocked every vessel feeding that fibroid. I had $1700 extra pva used to do so.

That fibroid clinic sounds great! I'm in the Pacific NW and we don't have anything like that here which is too bad. Sorry you feel yucky! I did not have bladder issues but did have bowel and bulk issues. Could barely tie my shoe. My hair was like a brillo pad too but 4 days after UFE it was soft and silky again. That last period of mine was the final straw! I had to wait a couple of months and was due for another period but UFE stopped it.

I avoided soy because it made my breasts tingle and since it is in everything thought that was a good idea. I also avoided plastics and lotions that were not organic since these have estrogen too. Keep me posted.

All the best,

Margie

Oh man, the hair! Yes! It is so dry no matter what I use! Darn hormones...I'm blaming everything on them now. haha

I stopped eating soy about a year and a half ago. Originally my doc thought I had some food intolerance issues because at that time my main symptoms were digestive/stomach. After going through an elimination diet, I found i had HORRID pains in my lower abdomen every time I ate soy. So that was it - I avoid it like the plague. I try to limit dairy and gluten, too (though I do love my dairy).

So glad to hear so many have had success with UAE...fingers crossed it will be the right path for me.

In the meantime I know I need to keep exercising but the way I've been feeling lately has made me just want to curl up into a ball and sleep until I can get this issue taken care of. Baby steps, though...

I used Wen Shampoo (which is odd) during my hormonal hair time and it really did soften it. Bought a teensy bottle at a garage sale and it seemed to help with breakage.

I stopped eating soy too. Now I do almond milk and love it. Think it has a lot of calcium too which is always a good thing. I limited milk and meat including chicken because of the hormones in the grain. I did have organic every once in awhile.

I have had the most remarkable shrinking this month. It is amazing this is happening! I still have odd fat stores but they too are steadily shrinking. I think this will be the perfect path for you. If it does not work you can cross that bridge then.

Exercise was tough for me as I tried everything, then doubled my efforts with no results at all. One week I rode over 70 miles on my bike and did weight training classes 3 days that week and nothing. Not a 1/8 of an inch of 1/8 of a pound. Nothing. The fibroid was not going to let that happen!! I even hired a personal trainer. I got stronger but my booty did not get smaller or anything else.

After UFE I got a bit too gung ** and did zumba, low impact too, and had swelling. Really, bad swelling. I had not healed apparently and decided to wait. Now that I am doing nothing, I am losing. I'm dog walking and gardening. I plan to start the insanity workout since I seem to be much better, stronger and able. You are right, it is baby steps. If you feeling like curling up like a cat, then do it with no guilt. Have a great weekend!

Thanks, you too! Gonna walk the dogs tomorrow. Between all this and the HOT, horribly humid weather we've had lately, poor girls are going stir crazy.

How long did it take for you to get in to see an IR? I made an appointment at that fibroid clinic but it's not until early October! And that's just the appointment. No clue how long it will take to schedule and undergo the UAE. Impatient...now that I know what's going on with me and I know what I want to do about it.

I was able to get a consultation right away with my IR which was done at the hospital. He told me about the procedure and pain management (very important the first 4 days). I said I wanted UFE and he wanted to speak to my doctor before deciding if I was eligible for the procedure. My doctor encouraged it and I was called that night stating I had been selected.

The issue in my case was my age. I was 50 and the medical community encourages removal of the body parts since there is no longer a need (child bearing). My doctor supported my wishes and convinced the IR that I was the perfect candidate which was a major "phew". Then I was able to schedule which took about a month because I wanted a certain doctor on a certain day of the week. I had my procedure June 8 2012.

I hate to say this but get used to practicing patience. UFE is a slow but consistent process that requires patience. Although some have tremendous results right away. If the fibroid is submucosal (inside the uterus) many have reported expelling it. This was not my story but as I stated before I was more fibroid than uterus.

Be sure to discuss pain mgmt. used by the IR because it is very important to stay ahead of the pain. You will hear this term a lot. My doctor used Dilaudid vs. Morphine. Those who have Morphine often report of severe nausea and being violently ill. There are actually some great articles of how morphine affects the brain stimulating a form of motion sickness. Not that the use of morphine is bad but the nausea should be anticipated. I had a nausea patch behind my ear where it stayed for 4 days. I was told to take my pain meds every 4 hours on the hour and I did so.

The reason for the sickness is the fibroid is quite unhappy to be deprived of it's blood supply and dies within minutes. It is in it's death that cramping is severe. This is why it is vital to stay ahead of the pain. I was given a pain pump and my IR said use it and use it frequently and I did. The nurses thought my use was excessive (7 pumps) but I only had one bout of nausea when I turned my head too fast. I fell asleep, woke up, ate hot rice cereal and orange sherbet. Felt pretty good and went home that day. Overall, my recovery was quite easy. Stay cool!

Margie