Can we talk fibroids?

[Janie Grace]

After over two years of suffering, I was finally just diagnosed with what is most likely a pedunculated uterine fibroid. This is after two other doctors and two D&Cs where it was "missed." My current doctor (considered the best in our area) went and actually looked at the ultrasound pictures himself (rather than relying on the radiologist reports) and said "there is a huge mass in your uterine cavity with a broad base. It has been there a while and taking it out will be a challenge." It's larger than a golf ball and is causing symptoms that include extreme bleeding (and resultant anemia) and terrible cramps (writhing, crying, etc -- and I am not a wimp). My life stops for 2-3 days every month (and I mean STOPS). I also spot and cramp while not on my period. 

 

He says he can go in and do another D&C with hysteroscopy and do a myomectomy using Myosure. However, he says that the mass is so embedded that he won't be able to get it all without digging into the uterine wall, which is unsafe. He is pretty sure it will eventually grow back. The only other option is vaginal hysterectomy.

 

I have been doing some reading and want to ask about uterine artery embolism and MR-guided ultrasound. I don't know much about these except that sometimes they can be alternatives. 

 

If a hysterectomy is the best option, I will suck it up and be brave. It freaks me out, but it seems like the vast majority of women who go this route are happy with the outcome. At the same time, I know that LOTS of women have fibroids and I don't want to do something radical for a common problem if there is a simpler solution. Granted, I don't think my experience with this fibroid is typical; many don't cause discomfort at all. 

 

Please post if you have any experience or knowledge. I am weary and overwhelmed. Thanks.

[raindrops]

I had one large, golf-ball sized submucosal fibroid that caused similar symptoms, including flooding.  My dr. told me my options were a vaginal hysterectomy or a traditional open myomectomy.  Both options caused me a great deal of distress, so I researched another option on my own: a robot-assisted laparascopic myomectomy.  I was careful to research the expertise of the doctor, since there are few that  have extensive experience.  I found a wonderful dr. in NY who performed this procedure on me last year.  It was a success.  The flooding stopped.  Since then, however, one year later, I had a novasure ablation to stop my periods.  I had the ablation about 3 weeks ago.  They found a small polyp with a hysteroscope, which continued to make my periods heavy.  The dr. said sometimes polyps form inside the uterus from the large fibroid.  So far, I think this will be a success, and my anemia will improve.  I'm glad I went this route, but it was difficult to navigate.  From the research I've done, if you only have one fibroid, the chances of it growing back are very small.  My dr. was able to remove all of it without puncturing the uterine wall.  My ultrasound tech said my uterus looked normal and healthy, and you'd never know I'd had the laparoscopic myomectomy.  Because my dr. did such a good job, I was a good candidate for the ablation one year later.  Hope this helps.

Edited March 5, 2016 by raindrops

[fastweedpuller]

I am quite surprised the other D&Cs you had weren't with a hysteroscopy.  I just (and I mean 2 wks ago) had a hysteroscopy/myomectomy for a polyp that caused similar symptoms.  The hysteroscopy found another polyp that the ultrasound missed.  So my doc, with myosure, removed both.  She suggested that if there was new or extra bleeding after this D&C, we might go the route of ablation...basically what Raindrop's experience was. 

 

Am not sure if this is 100% apples to apples because the growth was not a fibroid (was limited to the endometrium), though I do have those in abundance.

 

I am old enough though to be menopausal so...we expect a few weird things.  Just not anemia and/or flooding, though. 

[Janie Grace]

I am quite surprised the other D&Cs you had weren't with a hysteroscopy.  I just (and I mean 2 wks ago) had a hysteroscopy/myomectomy for a polyp that caused similar symptoms.  The hysteroscopy found another polyp that the ultrasound missed.  So my doc, with myosure, removed both.  She suggested that if there was new or extra bleeding after this D&C, we might go the route of ablation...basically what Raindrop's experience was. 

 

Am not sure if this is 100% apples to apples because the growth was not a fibroid (was limited to the endometrium), though I do have those in abundance.

 

I am old enough though to be menopausal so...we expect a few weird things.  Just not anemia and/or flooding, though. 

So this is the thing -- they WERE with hysteroscopy. In the first one, they saw and removed a small polyp. A year and a half later (this past fall), they saw a fibroid on the u/s but when they went it, he COULDN'T FIND IT. How in the world you miss a fibroid, I do not know, but I have no doubt it's the same one that is now larger than a golf ball. He (new doctor) is planning to use Myosure if we go the D&C route. But I am 20 years from menopause (if I'm like my mom), so I have a feeling the story will not be over after another D&C.

Edited March 3, 2016 by Janie Grace

[Janie Grace]

I had one large, golf-ball sized submucosal fibroid that caused similar symptoms, including flooding.  My dr. told me my options were a vaginal hysterectomy or a traditional open myomectomy.  Both options caused me a great deal of distress, so I researched another option on my own: a robot-assisted laparascopic myomectomy.  

 

What is traditional open myomectomy? (Is that different than a vaginal myomectomy during D&C?)  Why did it make you nervous? So glad you found an option you liked and had good results!

[raindrops]

Traditional myomectomy is when they make a large abdominal incision to remove the fibroid.  A vaginal myomectomy was not an option for me, likely because my fibroid was mostly outside the uterus, and partly in the uterine wall.  I remember now the dr.'s concern was that a vaginal myomectomy would not get the whole fibroid, and it would likely grow back.  The laparascopic robot-assisted myomectomy (the one I had) takes out the fibroid through three small incisions in your abdomen.

[SparklyUnicorn]

I'd say no to morcellation.  Read up on it. 

 

 

[raindrops]

I was concerned with morcellation as well, but my dr. said they had a technique in which they contained it in a bag of some kind. 

[Janie Grace]

I'd say no to morcellation.  Read up on it. 

 

Yes, I have. Definitely no to that!!!

[Stacia]

I have 2 fibroids, one as large as a grapefruit. Mine are not really embedded in the uterine wall, though.

 

For awhile (about a year), I took meds for the excessive bleeding & that helped somewhat. (Transexemic acid, I think. I may not be spelling that correctly.) I never really had a lot of pain, but did have severe bleeding & anemia.

 

I had not been on birth control pills, but I decided to give it a try to see if getting the hormonal issues better balanced would help (rather than depending on the transexemic acid). It did. The change has been 180 degrees for the better (& this was after I had been told I might need to consider a hysterectomy). So, at least for now, the bc pills are working (& have for a year). I'm in my late 40s, though, & hoping it will hold out & work until I hit menopause (which doc says will then cause the fibroids to shrink/cease to be a problem because of hormonal changes at that point).

 

:grouphug:

[catz]

I had an emergency myomectomy during a c-section (so full incision obviously) after my first pregnancy.  I highly recommend against that!  I barely want to talk about it - I was bleeding heavily.  However, I have had ZERO problems since that myomectomy.  I went on to have another child with an early c-section just due to not wanting my uterus to get too large.  No further fibroids.  Mine was the size of a cantelope and 3 lbs by the end of my pregnancy.  Ugh - that was stressful!  It 's much less complex when you're not pregnant.  Anyway, I'd pursue non-hyst options first if possible.  Once you hit menopause they typically no longer cause problems so it also might depend on your age.  I was 30 when this happened and I'm not 45 (and haven't hit menopause).

 

 

[HS Mom in NC]

One risk with ablation is that it can make detecting uterine cancer harder in the early stages and some people have pain from bleeding back into the muscle fibers. At least that's what a GP told me.

I had a vaginal hysterectomy (I kept my ovaries) in 2014.  I was 10 years passed having kids by choice anyway, and that last kid was adopted, so I had no need of a uterus anymore. They could've just taken out the fibroids, but there was no guarantee I wouldn't have them again in the future.  I had 4 fibroid tumors.  One was in my cervix and caused pain.  The other 3 were in my uterus and one was so large (just over a pound in weight and the size of a newborn's head) that it folded my bladder in half and was blocking the ureter to my left kidney.  I had heavy bleeding and was anemic due to the fibroids and being B12 deficient. I had to pee very frequently because of the then unknown bladder issue.  The blockage on the ureter caused the same kind of pain as a kidney stone which sent me to urgent care and revealed what all was going on.

There is no guarantee you'll get a vaginal hysterectomy.  They can start it that way, but there can be internal scarring and other problems that force them into cutting into the abdominal wall. So plan A was vaginal and plan B was abdominal. I'm glad I didn't need the abdominal incision because it can take twice as long to recover.  Recovery is technically 3 weeks with the "robotic" vaginal hysterectomy, but if you're older, it can be a full 6 weeks.  BTBT.  That was the hardest part because it's hard to follow doctor's orders and take it as easy as they want you to.  There's a tendency to feel better and then do more than you should.

 

I'm thrilled with my results.  I feel so much better than I used to.  It almost makes me cry to think about how run down I felt all those years being anemic and miserable. 

[JFSinIL]

Traditional myomectomy is when they make a large abdominal incision to remove the fibroid.  A vaginal myomectomy was not an option for me, likely because my fibroid was mostly outside the uterus, and partly in the uterine wall.  I remember now the dr.'s concern was that a vaginal myomectomy would not get the whole fibroid, and it would likely grow back.  The laparascopic robot-assisted myomectomy (the one I had) takes out the fibroid through three small incisions in your abdomen.

 

I had a softball-sized fibroid removed from the outside of my uterus via the large abdominal incision.  That was way back before kids - now am post-menopause and lucky me, now I get polyps.   Since I have had too many abdominal surgeries (and resultant scar tissue/adhesions) over the years that I am not a good candidate for any surgery to remove the uterus, so I get to have repeat D&C etc. anytime a polyp decides to show up.  Drat.  Doc. said could take 20 years or six months. 

[Peach]

I had...four fibroids. The smaller were about orange sized and the largest a little bigger than grapefruit sized. I had it all removed but kept the ovaries. They did a low horizontal incision for me. This was August this past year....get this - 3 weeks before my classes started :) But even with it being abdominal, I was able to walk to class and back when school started and it's 1.75 miles..almost 2..depending on which building I got to. I'm SO glad to be over all the insanity of flooding and exhaustion. One extra good thing...I am/was very prone to restless legs when my iron is low and since the operation, I've had no problems. 

[Liz CA]

I would have surgery since the fibroids are bothering you and then I would check that estrogen and progesterone are balanced, or prog be a little higher even. This can prevent fibroids from regrowing.

One advantage to any kind of surgery should be that they can see if there is endo which is supposedly hard to detect or confirm otherwise.

Edited March 4, 2016 by Liz CA

[HS Mom in NC]

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Edited May 16, 2022 by HS Mom in NC

[Jean in Newcastle]

Six year old zombie thread