Fibroid diagnosis + Anxiety = Aaack!
September 26, 2017 9:25 PM   Subscribe

My doctor ordered a CT scan after feeling a hard lump on my stomach during an exam. She called today with the results and I have two large uterine fibroids. I am following up with an OBGYN but in the meantime, anxiety! Do you know about fibroids? Can you be a voice of reason?

I did the wrong thing, and looked online. What I saw is that while rare, sometimes what appear to be fibroids are actually cancerous tumors and this is only discovered after removal. And now I'm in an anxiety spiral. This has been a rough year with a loved one surviving a medical emergency, I've been in therapy for related PTSD, and while I'm overall doing well, this has got me in a tangle.

I guess I'm feeling anxious because I've never been diagnosed with fibroids before and I'm freaked out that they are suddenly here! Large and in charge! And what if they're actually some rare and awful cancer! Who knows!

My last pap/gyno exam was a few years ago and all of those tests have been normal. Haven't had any doctors feel a hard lump before. Have lost some weight recently (although still fat) which I wonder might've made the fibroids easier to feel? Late 30s, periods have gotten super light the last couple of years, no kids, no other gyno symptoms. Iron deficient.

Anyway, could you tell me about fibroids or point me into the right direction? Or share a reassurance? I know this is mostly anxiety talking, but I'm pretty freaked out. Thank you AskMeFi! You're ever a saving grace.
posted by anonymous to Health & Fitness (16 answers total) 4 users marked this as a favorite
Fibroids are suuuuuper common, especially as you get older. Unless they're actually causing problems (or you're trying to get pregnant), your doctor may well not even consider it worth doing anything to address them. They'll do a pelvic ultrasound and you'll get on with your life.
posted by praemunire at 9:39 PM on September 26, 2017 [2 favorites]

The vast, vast, vast majority (like almost all) of fibroids are not cancerous in any way. For some people they can get big and cause heavy periods, pain, intestinal issues, problems with getting pregnant, or obvious cosmetic protrusion. Getting them removed is a routine surgery. If you're not having problems from them, leaving them in and monitoring is a common approach. Many shrink back radically with menopause.
posted by quince at 10:32 PM on September 26, 2017 [5 favorites]

I was diagnosed a few years ago with fibroids. I'd had awful periods for years (painful cramps, very heavy flow) but ultrasounds found nothing. It was only when I started trying to get pregnant, and couldn't, that they did more tests and some exploratory laparoscopic surgery and discovered HUGE fibroids. They did another surgery and removed them laparoscopically and it made a big difference in my quality of life even though it unfortunately didn't solve my fertility issues. I'm very glad I had them removed.

They tested the tissue they removed to check that it wasn't cancer. I think that's standard, but I also think it's incredibly rare that it ever is cancer. I know it's hard not to worry, and I don't say this lightly because I've been on the wrong end of bad news from "routine" medical tests more than once, but I really think the likelihood is you will be fine. Even the surgery, if that's what your doc recommends, is not too onerous. I recovered well with no side effects except my periods were SO MUCH BETTER.

I was very anxious before my surgery because I'd never been put under before, but it was fine. If you go that route (or even if you don't), feel free to MeMail me and I'll share my experiences with you.
posted by hurdy gurdy girl at 10:49 PM on September 26, 2017 [2 favorites]

I just re-read the bit about your concern because the doc was able to feel a hard lump--my fibroids have been bigger and smaller at different points, as my hormone levels have changed, and at their biggest you could most definitely feel them from the outside. They felt like hard lumps.
posted by hurdy gurdy girl at 10:52 PM on September 26, 2017 [2 favorites]

I have fibroids, and I'm having surgery tomorrow to remove them, as they are causing problems. In my case, one of them is sitting *on* my bladder. This is bad. Treatment of them is really commonplace, and there are many different options, from leaving them completely alone, to having a hysterectomy (which is what I'm doing).

If you have Facebook, I found the group Uterine Fibroids: Removal Support Group to be a huge help. CW: they do show pictures of fibroids, and also of surgery.
posted by spinifex23 at 10:53 PM on September 26, 2017 [1 favorite]

My fibroid was "very strange" and still turned out normal. They're super common in general. In my case a large fibroid resulted in a few years of very light periods before turning on a fountain each month, so you're lucky your doctor caught them early. Depending on just how the fibroid is situated, you'll have various options for how to take care of it, starting with observation, through medication and various types of surgical interventions.

I'm a year post removal via regular surgery - mine was intra-uterine-wall and far too big for laparoscopic without dissecting the fibroid in situ, which is apparently a bad idea just in case it's not a fibroid after all. The removal itself was fairly straightforward, though while the surgical site healed very well, I was exhausted for over two months and unable to wear tight clothing for six - apparently removing over a litre of flesh from your abdomen takes it out of you. My very experienced surgeon agreed that fibroids are almost never cancerous. In my case the only long-term consequence is annual ultrasounds in case the bloody things come back, which does happen occasionally.
posted by I claim sanctuary at 11:04 PM on September 26, 2017 [1 favorite]

At some point if you're discussing surgical options for fibroids, the topic of power morcellation will come up. It's a popular and controversial procedure of late, because it balances some big advantages for fibroid removal (minimally invasive surgery, quicker recovery time) with some small but serious risks (on the VERY slim chance that a removed fibroid turns out to be cancerous, morcellation can spread the tumor cells around the abdomen). It's not something to panic about, just something for you and your doctor to be aware of while exploring your options. Doctors are working on ways to minimize the already-small possible risks of morcellation, like by morcellating fibroid tumors inside covering bags, to reduce or eliminate the spray of fibroid cells throughout the abdomen.
posted by nicebookrack at 12:38 AM on September 27, 2017

80% of women will have fibroids by age 50, that's hundreds of millions of women. Less than 1% of women have fibroids that turn out to be cancer.
posted by SyraCarol at 5:06 AM on September 27, 2017

Fibroid vet here. Please try not to worry... chances are very very very small that your fibroids are not what they appear to be. Your physician, presumably, has seen this 100s or maybe 1000s of times. Fibroids are extremely common as women grow older and are typically just a nuisance. You are doing the right thing to have it checked out.

In my case, I chose to get my fibroids removed because they were causing me sleepless nights of pain 2-3 days per month. I had the removal combined with a uterine ablation which had pretty much stopped a monthly bleed (which is FANTASTIC), and a salpinectomy (removal of the Fallopian tubes, in my case, for sterilization). I have ultrasound every few months because of another situation, and guess what... I have more fibroids! New ones. But they aren't bothering me.

Good luck and feel free to reach out if you have any more questions.
posted by FergieBelle at 5:18 AM on September 27, 2017 [3 favorites]

I've had a fibroid removed because it was causing crazy heavy periods. My doc told me it could safely stay unless it was giving me problems, but since it was clearly starting to be a nuisance, it had to go.
The surgery was a very routine thing, and went well; I've had no adverse effects (was feeling fine again within two days after) and the heavy periods just went *poof*. I'm so glad I had it done.

First time for me to have had surgery under narcosis. It went fine. It was not too scary either. I had a friendly chat with my surgeon while the monitoring computer was starting up and she was really cool and nice. Then they gave me a sedative to breathe in and I could feel myself falling asleep really fast, but it was not unpleasant or frightening. I remember thinking something like 'Okay here we go, let's do this'.

No real information here, I guess, but I figured that hearing once more how common fibroids are, and how nice it can be to have gotten rid of them, might help you calm down.
posted by Too-Ticky at 6:43 AM on September 27, 2017 [1 favorite]

I had fibroids back in the dark ages (aka the 1980s) that grew so quickly my normally swarthy OB/GYN blanched when he palpated them. He was clearly concerned because they had advanced from pea-sized to grapefruit-sized in much less than a year when he had figured it would take the better part of decade for them to grow to a point where Something Had To Be Done. Anyhoo, I had them (and my uterus, btw) removed, they were whisked off to the pathology lab, and turned out to be benign, benign, benign. Because, as everyone else has said, they are almost always benign. Even when they're big, hard, fast-growing, or any number of other awful things.
posted by DrGail at 7:14 AM on September 27, 2017 [2 favorites]

I'm home recuperating from surgery right now. I wasn't having pain, but my periods were getting heavier (with one super big crazy one) and I was iron deficient/anemic. Also I could feel a hard lump in my belly area. They did a pelvic ultrasound and told me I had tons of big fibroids and needed surgery. They were pressing on everything and they couldn't even see my ovaries in the ultrasound. My gynecologist look a little astonished.

It IS scary, I had an endometrial biopsy and then the surgery where they had the pathologists test everything. All of those words utterly freaked me out, but all was OK in the end!

It's very rare for fibroids to be cancer, as everyone is saying, so hopefully that can calm your anxiety a bit. I kept focusing on that. Also fibroids are more common in those of us who have not had kids, from what I hear.

You may not need surgery, but if you do I'm happy to answer any questions.
posted by jdl at 9:28 AM on September 27, 2017 [2 favorites]

If it helps, I worked in surgery for years and participated in I-don't-know-how-many fibroid removals. Not a single one of these was a cancerous tumor.
posted by moira at 10:13 AM on September 27, 2017 [1 favorite]

FWIW I had uterine fibroids and none of the (multiple) medical practitioners I dealt with even mentioned cancer. They were very comfortable with me trying different treatments for a couple of years to try to reduce my symptoms (bleeding, pain, etc.) instead of insisting on surgery. I was around your age when the symptoms started.

You might find it useful to visit hystersisters. They have a ton of info on gynecological issues. Here's their page on Fibroids. Also check out their "Alternatives to Hysterectomy" section.

I eventually decided on a hysterectomy, basically because I was truly miserable and I would have had to deal with the symptoms for probably another 10 years before I got relief through menopause. But a lot of women are able to control symptoms with less invasive options. I'm not saying you don't have cancer (because I'm not omniscient) but I am saying there is no need to panic now.
posted by tuesdayschild at 12:35 PM on September 27, 2017

I have fibroids and they are just completely a non-issue. If I had
not had an ultrasound for another reason I never would have known.
And the older I get, the smaller they get.
posted by SLC Mom at 6:24 PM on September 27, 2017

I've had surgery to have fibroids removed. They were fine, not cancerous (I also never had that possibility mentioned to me). It was even kind of fun 'cause I got to be drugged up all weekend, snoozing and watching Hulu afterward. I don't remember feeling any pain from it at all.
posted by Brain Sturgeon at 9:14 PM on September 27, 2017 [1 favorite]

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