Subserous leiomyoma of uterus

Cindy,

What was your largest fibroid? And how much did it shrink. I'm debating UFE or myomectomy. My concerns about UFE is I'm told sometimes it doesn't work, or can cause earlier menopause, or leave you with weird discharge forever. And several women posted they still got myomectomy after UFE, not sure why. My one fibroid is currently 11cm (inside uterus), and I'm 47. So similar to you. In perimenopause I think. Thanks so much!!!!

Hi Sakura,

My larger fibroids ranged from 2 cm to 13 cm. Due to insurance, I did not have a second MRI to find out if the fibroids are gone, but cannot feel that hard lump in my stomach any longer, so I know the largest one shrunk. My periods are so much less blood that I don't need reinforcements. I was told I could go into menopause, yet had the procedure done at age 51 (2 yrs ago later this year). I am now going without periods for one or two months, so closer. All that said to just state for me menopause could have started due to UFE or possibly this is when it may have started anyway. The smelly discharge bothered me for about 2 months then dissipated. I had a period going into the OR and once out like staining for a day or two.

As for the myomectomy, I have a friend who was in her 40s and choose that route first, and then ended up doing the UFE procedure about 5 years later. I think, but not 100% sure that her fibroids grew back or not a successful surgery for her. The UFE was a success for her by the doctor who, I believe, founded this procedure (in California).

Good luck with the decision!

Thanks Cindy!

Do you ever worry about the plastic beads UFE leaves in your artery forever? Like later they would lead to inflammation or aneurism or something? Also do you know the doctor your friend used in CA?

It's such a hard decision as I'm 47 so don't want earlier menopause and have also heard of women having UFE and then later still needing a myomectomy. I guess timing is key. But I know UFE is much less down time and recovery. And no cutting your belly open. 😃

Glad you feel better now 😃

Hi,

I havent had UFE yet but im scheduled and had a consultation with an interventional radiologist. He said that the beads are made up of sugar molecules. I'm not sure if this is the norm. I asked him about them traveling to other parts and he said that's very unlikely. They monitor while doing the procedure to make sure they aren't mistakenly embolizing something they shouldn't. I also asked him about early menopause and he said this is more likely they closer you actually are to menopause (I'm 36). Finally, as long as you have your uterus there's a chance that you can get additional fibroids. It could be that women end up getting a myomectomy later, because they either get new ones, the existing ones did not shrink enough to cause relief of symptoms, or the UFE itself failed.

Jess

Thanks for the info Jess!

Good luck with your procedure. I wonder what the failure rate is? I should look it up. I assume you chose UFE because surgery is a way bigger deal (down time, trauma to your body etc.). I don't suppose your doc is in CA? The radiologist I saw said the beads were plastic so wondering if I should see another one.

At 47 I'm way closer to menopause than you lol, so less worried about them growing back or getting new ones if the UFE could shrink my 11cm to at least 7cm or less and keep it from growing. When it was 8cm it didn't bother me as long as I was on birth control.

Sakura,

Honestly, the first week or so after procedure I was freaking out that there would be these tiny bead-like things in my uterine lining, but doubting they will cause any issues. The radiologist assured me I'd be okay. The incision she made in the groin to go through the artery is thoroughly healed and not noticeable.

I do not remember the doctor's name in CA, but can try to get a hold of my friend and get back to you in a couple of days.

The whole reason I went with UFE was a) less recovery time, b) no scars, c) wanted my uterus in tact, d) was closer to menopause

My concern 2 years ago was... possible regrowth, but different spot in the uterus.

Yes, I can understand the decision making process being difficult as I had to make decisions, too. I did a couple of years of thinking...read 3 books, researched on-line, and talked to a couple of doctors, and spoke to a couple of friends. Again, good luck!

Thanks so much Cindy! If you could find out about the CA doctor that would be great.

I just feel like my body is out of control with peri and the fibroid. My peri hormones have made the fibroid grow faster which terrifies me because if I do UFE, it def needs to both shrink and and stop it from regrowing. Also one GYN said oh if it's growing it could be deadly and terrified me. While another said, you've had it forever, its normal to grow a bit faster during peri it's mostly likely benign. I just have one large fibroid and a few very microscopic ones right now. All inside my uterus. I just want my body/life back but then feel like it's somehow my fault. I've always eaten VERY healthy. No wheat or sugar or grains since I was 18 and low-carb. But then I did go on the birth control pill at 36 because of terrible periods and at the time thought it was safe. So feel like my fault. Or my fault recently for going off my regular pill when I had bad peri symptoms and then lead to a ruptured cyst and even crazier hormone imbalance and fibroid growth. But finding a good OBGYN is so hard. If I had one I wouldn't have made those mistakes. And my sister says menopause is even worse. 😦

I also have a dermoid cyst I've had for a while that is around 4cm on one ovary. Some doctors say I should remove it, in case it gets bigger some day and causes torsion. While others say just leave it. But that also makes me wonder if I need surgery. But then if I had surgery for it there would be a risk of losing the ovary. I'm also single, one income, so being out of work for 4 weeks at my new job is risky. Ugh. I have so many friends who are SO unhealthy in what they eat, weigh etc, yet no issues, and not even close to menopause. Wondering where I effed up ... Thanks for your support and advice all. 😃

Hi Sakura,

The MD told me the failure rate but unfortunately, I didn't write it down. It was very low but I think they determine success a little bit differently. Success for MDs is that they cut they blood supply to the fibroids. Success for us is that we no longer have to deal with the symptoms. He told me that 85% -90% see a difference in bleeding within the first 2 months. 85% see a difference in bulk symptoms within 6 months, which is unfortunately my biggest problem. Mine are 7cm and 9cm. He said that they will reduce about 50%. I'm hoping that'll be enough. I chose this route because like you said, the surgery is a huge deal, weeks of recovery, hospital stay, etc. I'm really trying to avoid that! It wasn't an easy decision though. I've been going crazy researching and weighing my two options. Also, it's def not our fault! I wondered too if maybe I needed to change my eating habits or if it was something i did. Mine just run in my family and chances are yours do too! My MD is across the county in CT. Thanks for the well wishes. Wishing you the best of luck also! 😃

Thank Jess!

I guess I will try to see the radiologist again and see if my fibroid is too big or not since it's now 11cm. I'm also looking into Acessa.

I'm clearly going crazy weighing options too, esp as the longer you wait the more it might grow at my age. I also considered that when you go through menopause, you may want to take hormones/HRT to feel better, and I've read that if you do that, even though you're in menopause it can cause fibroids to grow. So I need them to be gone or small enough also so that wouldn't be an issue if they grew some. Just something for all us fibroid ladies to think about. 😃

Hi Sakura,

Sorry I have not heard back from my friend yet.

Your periods were rough due to the fibroid I bet. This was not anything you did to your body. I am really happy to have done the UFE procedure and wish I did it in my 40s when all my discomfort happened.

I hope to hear from this friend, soon. In the meantime, keep researching and figuring out what is best for you.