Fibroid treatment options - decisions, decisions
January 8, 2011 6:07 PM   Subscribe

Just got diagnosed with fibroids. I would like to hear from women who've decided on treatment options besides a hysterectomy, and how things panned out for them.

CT scan revealed why I've been feeling abdominal discomfort and have had PITA periods all these years. I have multiple fibroids, one of which measures 8.5 x 6.5. *faints*

I've decided against a hysterectomy because I feel this would be an extreme option - none of the fibroids are cancerous, and the downtime and money are also a concern, even with health insurance. I'm not concerned about having children (I would rather adopt anyway.) The three treatment options I'm especially interested in are:

Uterine Artery Embolization
Radiofrequency Ablation
MRI-guided Focused Ultrasound

How did you feel after you underwent the procedure? Has your health improved or worsened since then? Are there things you wish you had known beforehand? I know this is really a YMMV thing and ultimately I'll have to make the decision, but I'm interested in hearing from others. Thanks!
posted by anonymous to Health & Fitness (14 answers total) 9 users marked this as a favorite
I only found out about my fibroids when I discovered I was pregnant.
It was too late to have them removed (one of my largest was about 15 x15).
I can't tell you about the options to get them removed because I had an emergency hysterectomy. I can tell you I had started going to the doctor at 16 for pain (he asked me if I was sexually active and when I told him yes he told my mother I was having pain because I was having sex). I had pain during sex, horrible horrible periods, and just random awful pain.
I would ask a doctor each time my previous doctor would leave my HMO and I would get a new Dr. Each time I was advised how it's normal to have some pain.
Now after a difficult 4 hour delivery/hysterectomy I can't believe how great it is to not have this pain. It's terrific. I went from 25 years of not being able to stand erect sometimes because of pain to almost zero. It went from something I just lived with and tried to hide because I thought I was just being a baby to realizing how much living with that pain really sucked.
All I can say is when it's over I hope you are amazed as me how great it is to be pain free.
Good luck with your decision.
posted by beccaj at 6:35 PM on January 8, 2011

I've never suffered them, but this is a really moving story about one woman's experiences.
posted by traversionischaracter at 6:59 PM on January 8, 2011

I had a Uterine Artery Embolization. It did not work. The worst part was post-embolization syndrome:

Following UFE, some women may develop fever, increasing rather than decreasing pelvic pain, and a vaginal discharge. This combination of symptoms is called post-embolization syndrome. Many of these women will also experience nausea and exhaustion. The symptoms may last for days or even weeks and cause concern because of the possibility that serious infection is present in the uterus. If the symptoms get worse over time, rather than better as would be expected, then an examination and evaluation for infection is important.

It was excruciating. The doctor did not tell me this could happen. When I was in the hospital the day nurse acted like I was crazy and actually withheld pain medication. I finally demanded that I be discharged. I went home in agony and only found relief when I took all the pain medication I wanted.

I had one fibroid the size of a loaf of bread, it would push up into my chest cavity. I looked 3 months pregnant. I also had so many they melded together and could not be counted. I finally had a hysterectomy. Wow, what a relief that was! When people ask me about this, I always say get a hysterectomy. It changed my life for the better.

I also had other treatments since originally I refused to have a hysterectomy. The fibroids were so bad the doctors were concerned that I would hemorrhage and bleed to death. I was given drugs to put me into a "false" menopause before surgery, since they wanted to shrink the size of the fibroids. I was not a candidtate for radiofrequency ablation or MRI-guided focused ultrasound. Both of which I asked for.

So many people have said to me that I should not have had the hysterectomy, since that is no longer necessary with the new treatments. It was the only thing that worked for me and I am happy I finally did it.
posted by fifilaru at 7:32 PM on January 8, 2011

I am an extreeeeemmmeeee example... but UAE nearly killed me last year. I had been misdiagnosed for about 8 mos before I was diagnosed with a 25cm fibroid. Yeah. After talking to two doctors, I opted for UAE because I also wasn't thrilled about hysterectomy, and my gyno at the time felt that a hysterectomy with a tumor of that size would be risky anyway. My following account is pretty gross, so be warned.

My tumor was squashing my bladder flat, and putting lots of my stress on my ureters. I went to one of the top radiologists in NYC for my UAE, and he thought I was a great candidate. The procedure went well, I was in the hospital one night, and then went home. There was definitely some cramping but nothing that the pain meds couldn't manage.

Then things started going down hill after the first day home... more generalized pain, I felt like shit, and the kicker... I couldn't pee. Back to the hospital and into emergency surgery. Surprise! I was in renal failure. Instead of shrinking, my tumor swelled and pinched my ureters shut. I ended up with a double nephrostomy, and narrowly missed dialysis. 13 days in the hospital, and 8 kidney procedures before it was all said and done. Luckily, I have no lasting kidney/ureter damage.

But that was only part one. At the one month post surgery mark, I had the nephrostomy removed, and tumor had shrunk by 25%. But I just wasn't feeling better... severe cramping, massive discharge and bleeding. I started passing tissue as well. My radiologist repeatedly assured me this was normal (the gyno who referred me to this doctor bailed on my case). Then I started spiking fevers, and had a piece of tissue lodged in my cervix and hanging into my vaginal canal.

At that point, the radiologist referred me to a gyno who specialized in difficult cases. I went to her office, and after one look, she sent me straight to the emergency room. I had a massive uterine infection and low blood counts. After three days of antibiotics and two units of blood, I had a DNC. My tumor had necrotized, and detached, and was basically sitting in my uterus decaying. Oh, and my cervix was dilated (those contractions were my body trying to get rid of it). She removed the whole thing (5lbs), and was able to save my uterus. There was only on small fibroid left.

I felt immediately better after that, finally started recovering. From beginning to end I had 10 surgeries, three weeks in the hospital and two months out of work.

Act 3: The remaining fibroid was 5cm in April. It had grown to 13 cm by July. I was tired of my uterus trying to kill me, so I opted for a hysterectomy to be done laproscopically. First available slot was early September. By then it had grown to 25cm, requiring a 14 inch incision right down the center of my belly, and a fairly involved extraction. I was able to keep my ovaries. I required 4 units of blood during and after the procedure. Still, my recovery was pretty easy, and I was back at work in 4 weeks. I feel pretty good now, and my gyno gives me a thumbs up.

Hindsight... oh holy shit do I wish I had just done the hysterectomy in the first place. Clearly, I had some sort of mutant fibroids that grew extremely quickly. And my reaction to the UAE to was extremely unusual (the renal failure was dumb luck, but the necrotized tumor was nothing anyone had ever seen. My gyno is writing a journal article). Another co-worker also had UAE several months after me. She had much more pain than expected, but was back to work after a week. She has had some relief from the tumor, but not as much as she hoped.
posted by kimdog at 7:45 PM on January 8, 2011

Not speaking from experience but my friend had the same problem. Went for the hysterectomy (after having two kids and not wanting any more) and said it was the best thing she ever did.
posted by MsKim at 8:23 PM on January 8, 2011

acupuncture is actually really effective for this, fibroids can be shrunk and in some cases eliminated with acupuncture. I am waiting to have my baby to get mine fully treated but it sounds pretty simple and apparently it only takes 1-3 months of treatments to work. The Dr I went to was able to shrink them even while I was in early pregnancy.
posted by beckish at 8:30 PM on January 8, 2011

If you are close to menopause, you may as well suffer the fool and wait for nature to take its course. Estrogen feeds them, so the closer you are to the change, you may wish to just wait and see, because hormone levels change to inhibit growth.
posted by ~Sushma~ at 9:49 PM on January 8, 2011

I had fibroids, and after living with severe pain and incredibly heavy periods for years, had a myomectomy in May. Afterward, my periods got a lot better and my pain lessened significantly, but I also have adenomyosis, so I'll still have some pain until I eventually have a hysterectomy. I, like you, chose to undergo the less invasive procedure first to see if it helped, and it did, allowing me to put off the hysterectomy for a while.

Your fibroids may be too large for myomectomy (or your fibroids may be the type that aren't a candidate for that type of surgery). I have no personal experience with any of the procedures you have listed, but have a friend who had a bad experience with UAE, which made me decided not to go that route (especially with the risks involved).

If you are in or near NYC, I recommend going to Dr. Charles Ascher-Walsh, who specializes in fibroids. I realize you probably already have a doctor you are happy with, but he is fantastic and is very good at helping women with fibroids avoid hysterectomy if they wish to do so.
posted by bedhead at 10:21 PM on January 8, 2011

My mom had fibroids. She first tried NovaSure/Endometrial Ablation. It didn't work. She ended up having a full hysterectomy, which finally provided her with relief. She's done fine with hormone replacements. She was 47-48, if age range helps.
posted by litnerd at 5:57 AM on January 9, 2011

I had laparoscopic myomectomy, twice, for one relatively small fibroid that was at the entrance to my uterus. The second time because the doctor either did not cut enough off the first time, or it grew back. I think there was a space of about 1 and a half years between the surgeries. I've been fine since the second surgery, which was a few years ago.

Although a hysterectomy was an option, I was too young (mid twenties) for it to really be a consideration. I was also pretty unconcerned with the idea of having children, but it's a radical surgery. I also didn't wish to be menopausal at such a young age.

I wish I had gotten it checked out several years before, as I'd always had an off menstrual cycle, and I'm sure the fibroid was a culprit. By the time I had it checked out, I couldn't have immediate surgery, and had to schedule it for 3 or 4 months ahead. This meant I spent an entire summer bleeding profusely with the worst pain I have ever had in life. I was unable to do most physical things, as I didn't have the energy.

I was pretty much fine a day after the first surgery, but since I hated my job, I milked an entire week off work out of it. My recovery from the second surgery was pretty much the same, except for throwing up a few hours after. I was back to my regular self very quickly. I was given plenty of pain medication after, but need to take it.

I've been fine since. I think birth control pretty much regulates everything now. I have incredibly short periods, with a low to regular flow and no cramps.
posted by loriginedumonde at 1:11 PM on January 9, 2011

I have had a myomectomy. I woud absolutely recommend not going this route, especially since you're not concerned about having children. At the time, I was considering UFE, but was nervous about the risks, especially regarding childbearing. I think I wish I'd chosen UFE, since there's no guarantee I can have kids now anyway.

I had one fibroid slightly smaller than your biggest, and 6 others, the two smallest of which are still in there. It was a long, complicated surgery and ended up being pretty serious in terms of downtime. (Initially it was 4 weeks, but then I had another 4 because I had to have another surgery to fix complications from the first). However unlikely, you may want to speak to your doctor about a laproscopic myomectomy, as I've heard these are much easier on the body. Unfortunately, I bet the largest fibroid may make this impossible for you. It also depends on how deeply your fibroids are embedded in your uterus.

Also, acupuncture does not work. I wish it did, and it would be WAAAAY better than surgery, but no.

The plus side is I feel much better now, a few years later. The fibroids were making me anemic, among other things (best iron supplement: Floradix).
posted by lesli212 at 3:28 PM on January 9, 2011

Acupuncture is not particularly likely to help you. I have no direct experience with this, due to not having a uterus, but have many observations from the partner's point of view, and would be happy to offer my experience if you or your partner (if any) would like to MeMail me.
posted by norm at 7:42 PM on January 9, 2011 [2 favorites]

norm's first link is from the Cochrane Collaboration, one of the most respected groups in studies of evidence-based medicine. As he said, there is no reliable evidence that acupuncture helps with uterine fibroids.
posted by grouse at 9:10 PM on January 9, 2011

I had an ablation a little over a month ago (Novasure.) I didn't have fibroids, just PITA heavy periods and adenomyosis. (My doc also removed some benign polyps.) Anyway, as far as the surgery and recovery were concerned, they did the ablation under general anesthesia and I was at the hospital for less than six hours, total. They drugged me up nicely with Tordol, Percocet and Naproxen and I only had mild cramps. (I could feel that they were there, but no pain.) I lay around on the sofa for a day and took a nap and that was it. I only took my painkillers once at home and didn't need them after that.

I was very worried it would hurt a lot afterward and was happily surprised. So far, it seems to be helping, but it's too early to tell, really. (I'm barely having periods at all.)
posted by artychoke at 8:24 PM on January 10, 2011

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