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Recovery from fibroid removal
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Hey ladies....
I just found out I have fibroids that are encompassing 85% of my uterine cavity. The doc wants me to have them removed ASAP. The procedure is outpatient and would entail scraping out the fibroids, performing an ablation, then tying my tubes.

The catch...I am 10 weeks out from a marathon. All my research indicates a 3-4 weeks of recovery (which I cannot afford with only 10 weeks left to train).

Has anyone had experience recovering from fibroid removal? If so, how long were you down from strenuous physical exercise??

And advice will be appreciated!!

Thanks
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Re: Recovery from fibroid removal [STFUandRun] [ In reply to ]
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PM me. This is what I do so I am happy to discuss.
Cheers,
HC

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Holden Cain, ObGyn..."People pulling people out of people"
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Re: Recovery from fibroid removal [STFUandRun] [ In reply to ]
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I had the same surgery and I don't think a marathon in 10 weeks is doable. I was 6 weeks off work, doing a lot of walking, then some swimming and then riding and last to come back, running.

I did go to the Tour de France 4 months later and rode a lot of miles with no issues.

clm
Nashville, TN
https://twitter.com/ironclm | http://ironclm.typepad.com
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Re: Recovery from fibroid removal [trackie clm] [ In reply to ]
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In Reply To:
I was 6 weeks off work


Thanks for the info clm.....that's what I was afraid of. I'm hoping they'll let me hold off until after the race!!
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Re: Recovery from fibroid removal [STFUandRun] [ In reply to ]
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I have had all three done, but not at the same time, so I wasn't off work for more than a day or two for each. That being said, if I got them all done the same day I don't think a marathon would be doable. Even if you only missed a week or two of training, the jump in mileage when you started again would put you at risk for injuries. Good luck-it is worth it!
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Re: Recovery from fibroid removal [holdencain] [ In reply to ]
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In Reply To:
PM me.


Done....looking forward to hearing your thoughts.
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Re: Recovery from fibroid removal [pookie87] [ In reply to ]
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Good luck-it is worth it!


Glad to hear this wokred for you!!! Thanks for your thoughts!!
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Re: Recovery from fibroid removal [STFUandRun] [ In reply to ]
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sorry do not want to hijack but its on topic...what were your symptoms?
Ive been told last couple of years (ultrasound) I had large fibroid, I only felt during period for one or 2 days so did not want to do anything...now I feel it mid cycle, when i am lying down, and my whole stomach is bloated all the time now---could be from that?
when you say 'worth it" how did you feel after?
sitting down at desk I swear I can feel it right now!
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Re: Recovery from fibroid removal [triLA] [ In reply to ]
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In Reply To:
what were your symptoms?


For me, I have long (10-12 days) of heavy bleeding and large clots. Its also very painful (cramps) for about 4-5 days. My doc did 2 (different types) of ultrasounds and then an MRI. Surprisingly I am not anemic, but that is a risk.
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Re: Recovery from fibroid removal [STFUandRun] [ In reply to ]
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I amnot bleeding that long but also clots and seem to cramp almost all month yikes
good luck to you
and thanks for info---I really should get this checked again
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Re: Recovery from fibroid removal [triLA] [ In reply to ]
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In Reply To:
sorry do not want to hijack but its on topic...what were your symptoms?
Ive been told last couple of years (ultrasound) I had large fibroid, I only felt during period for one or 2 days so did not want to do anything...now I feel it mid cycle, when i am lying down, and my whole stomach is bloated all the time now---could be from that?
when you say 'worth it" how did you feel after?
sitting down at desk I swear I can feel it right now!



Mine were external, which I guess are the better kind to have. Couldn't have them removed because as the Ob/Gyn said they were like "two Mickey Mouse ears" and each was right near the entrance to my fallopian tubes. If I had them removed the scar tissue and endometriosis (lucky me again!) would likely make me infertile. I had surgery where they scraped out my uterus of a lot of gunk/endometriosis. Then put me into medical menopause to shrink the tumors (they grow on estrogen) so that after I would be able to get pregnant. My symptoms were very heavy clotty periods and cramps that I was told were like false labor (after having baby would have to agree) and would go Vaso-Vagal and pass out and my pelvic area always felt heavy-I don't know how else to describe it. After the pregnancy the tumors never grew back. Periods and cramps came back, got titanium screws put in fallopian tubes (like having your tubes tied), that helped for a short time and then problems came back. So I got ablated, where they put a scorching hot balloon in your uterus and burn your endometrial lining. Worked pretty much, still get cramps but they are nowhere near like before. And now two years later, ironically am in peri-menopause!
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Re: Recovery from fibroid removal [STFUandRun] [ In reply to ]
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Actually, the 6 weeks off work was the third surgery and more involved (and permanently fixed the issue!) The first 2 were outpatient, but I still don't think you'd be able to race that close after.

Good luck!

clm
Nashville, TN
https://twitter.com/ironclm | http://ironclm.typepad.com
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Re: Recovery from fibroid removal [STFUandRun] [ In reply to ]
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I've been a watcher but never posted anything until today. I saw your post and have some important advice. Make sure your surgery is scheduled for the week after your regular period is suppose to start. My "monthly visitor" was about a 15 days long by this point and I was on the pill to attempt to help regulate it. I had my surgery 7 days after my pills said I was suppose to start. That was my last period, ever... Your uterine wall lining is at a minimal depth at this point. When they go in to scrap and burn, the less they need to do, the more effective the outcome.
You will be surprised, six months from now, how much better you feel!
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Re: Recovery from fibroid removal [STFUandRun] [ In reply to ]
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I had a large fibroid and because I was done having munchkins, they took the whole uterus out.
No more periods!! I still have my ovaries so no weird hormonal things happening.
Took me about 2 weeks to feel normal and another 4 weeks before I could start doing the usually stuff again.

*Anne*
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Re: Recovery from fibroid removal [STFUandRun] [ In reply to ]
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Hi there - I don't post on her any more either, as my triathlon days came to an end a year and half ago after my "fibroid" surgery. I do not want to make anyone scared at all, because the chances are WAAAYYY against anything like this happening to you, but I feel the need to let women suffering from fibroids know my story real quick. I asked my surgeon specifically if he thought there was a chance I had leiomoysarcoma (the radiologist said she didn't like how my "fibroid" looked, due to its vascular nature - this after months of my gyno telling me my syptoms were "just hormones). Surgeon insisted I was just fine - just a fibroid. I had a myoectomy (which is removing the fibroid - leaving the uterus). This is absolultely, 100%, not advised for leiomyosarcoma - spews the little cancer buggers out into your system. Was diagnosed the next day with ULMS. Unfortunatley, went metastatic in January, and am now just counting my months, I'm afraid - maybe a couple years if I'm lucky.

I'm seriously not trying to alarm people, as there's such a tiny, tiny chance that this happens to women (like 1000/year max apparently) and my symptoms were pretty horrible in retrospect. But I believe there are ways to detect this before a surgery. Turns out my radiologist had even advised in writing that cancer be ruled out in my case - I put my trust in the wrong guy -- so I guess I just want to make sure people know this is a possibility, and that hysterectomy is best option (though no guarantee) for long-term survival if there's cancer.

All that said, my recovery from myoectomy was about 8 weeks.

Best of luck - and take advantage of medical recovery to get some rest and do all those non-sports things we often don't otherwise do: reading, knitting (ok, i don't knit), chatting, sleeping - and an ill-advised pain pill with a glass of wine or two can feel pretty great (-;
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Re: Recovery from fibroid removal [Orbito] [ In reply to ]
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In Reply To:
my symptoms were pretty horrible in retrospect


Orbito--
Thank you so much for sharing your story. I had not heard of this as a possibility and I believe in being an informed patient. I truly appreciate the information, and no worries, you have not scared me, rather you have educated me.

I meet with my doc again tomorrow to discuss options, and I will certainly ask about the vascular nature of the growths. I have seen the report from the radiologist, and the submucosal fibroids were confirmed, but there was also mention of cysts had not been identififed in my prior studies. If you have any suggestions on how I can rule out leiomyosarcoma, I'll take them!!

If you don't mind sharing a little more, I'm curious about your "horrible" symptoms. Care to elaborate??

Thanks
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Re: Recovery from fibroid removal [STFUandRun] [ In reply to ]
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Well let's scare away and skeeve out any man who might still be reading this thread, shall we...

I think it's pretty normal for fibroids to cause some bad cramping and a lot of bleeding - like a LOT more than normal. But I believe it will usually be related - at least roughly - to your period. Might get one a little off schedule, or last a lot longer, but still at least on some sort of schedule. Me - I'd get hit out of nowhere. sitting at work - one or two times out having a drink - feeling perfectly fine and healthy, then out of the blue, and over the course of about ten minutes, I would develop the worst cramps I could have imagined, followed by, well, ok, gross, some serious hemorrhaging. What I think was so unusual was the intensity of it, the ridiculous amount of bleeding, and the fact it would come out of the blue - not timed to any period or anything. By the time my surgery date rolled around, they woudn't do it because i was so anemic - had to have three units of bloood. Not a huge amount to get transfused - but really, one shouldn't need any, right?

not sure how helpful that is - and again, chances are so slim form women having LMS and not just routine old fibroids. But I have this feeling they don't catch this in as many women as they could or should. The listserv I'm on for LMS has lots of women with "oops" surgeries. That is, surgeries like mine where they did not know they had cancer until after. It's not unheard of, but again, chances of survival are just so much better if one gets a hystererectomy off the bat, rather than cutting up the tumor.

my psa for the day...
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Re: Recovery from fibroid removal [Orbito] [ In reply to ]
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Orbito,
I just wanted to thank you for sharing what must be a very painful story, and also wish you the best as you battle this disease. It's hard to know what to say, given the advanced stage of your cancer, but I am so sorry that something like this had to happen to you. Other than that, words fail me.

I'm having a uterine artery embolization for a fibroid in about a month, although mine clearly isn't as large as the original poster's. I chose a doctor who is supposed to be one of the leaders in the country in this surgery, although it would be significantly easier for me to go with someone more local. Your situation made me glad I made the choice--both for the type of surgery and the doctor. This surgery won't solve anything in the very unlikely event that mine is an LMS vs. a fibroid, but at least it won't make anything worse and can serve as a diagnostic tool if the surgery doesn't achieve its goal.

Again, best wishes to you. Know that your input has at least informed the 500+ people who have looked at this thread that there are risks, however rare, that may not have been talked about.

Heidi
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Re: Recovery from fibroid removal [Orbito] [ In reply to ]
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Sounds very very similar to me. My (third) surgeon is a gynological oncologist, so just taking out the fibroids is never an option with her. Luckily, no cancerous cells, but she said if you leave anything, then there is always a chance of cancer developing later. Glad to hear you are doing OK now.

clm
Nashville, TN
https://twitter.com/ironclm | http://ironclm.typepad.com
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Re: Recovery from fibroid removal [STFUandRun] [ In reply to ]
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I too have been lurking but when I saw this thread I had to reply because in 3 weeks I'll be having a partial hysterectomy because of fibroids. I was also wondering how long recovery will take. I just did my first sprint this past Sept so I'm new to tri training. I wanted to start working on strenght training after the sprint but then I found out that I had 4-5 fibroids and the doctor didn't think it would be wise to just remove them. So the choices were a hormone shot that would simulate early menopause, abdominal myomectomy or parital hyst. I'm 41 so decided to go with the partial. Unfortunately though knowing that I probably won't be able to work out for a month had unmotivated me to working out before the surgery:( The cold weather doesn't help either. Oh well, I plan to get back to working with a coach once I can start working out again. Anyway I've heard at least 2 weeks before you can go back to a desk job and 4 weeks before lifting or exercise. I wanted to get my done as soon as my doctor could schedule me-I'm so done with heavy bleeding and clots, not to mention the drain of energy it takes on the body. I'm even on the pill to help control the bleeding but it had started not stopping it so I decided to go to the doctor to see what options I had. Well good luck with your situation, hope you can do the marathon:)

Lisa
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Re: Recovery from fibroid removal [ljam] [ In reply to ]
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Hi ladies---

Update: no marathon for me. After exploring all the options and multiple consultations, it is universally agreed that a partial hysterectomy is the best path for me (my ovaries will stay). Apparently all of the fibroids cannot be removed via myomectomy and because I still have several years until menopause, I would have to continually deal with this for the next 15+ years.

As for the surgery itself, apparently I am an excellent candidate for the de Vinci robot surgery. I've been told that I'll be in the hospital at most for 1.5 days and my recovery should be quick because I am in "such good shape". My plan is to keep up the training and even complete a 12K two days before the procedure.

I can't say thank you enough to all who have contributed to this discussion!! I really appreciate your experiences and it helped me navigate this situation.

Cheers
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Re: Recovery from fibroid removal [HeidiC] [ In reply to ]
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Your words are so kind, Heidi, thank you! It' s amazing how far a few kind thoughts, even from some nice women on a message board, can go.

STFU (it's weird to type that and not have to erase before sending - like at work (-; ) - from what I've learned, robot is the way to go. It'll make recovery SO much better, and the scars should just be a couple of dots - nothing like the usual scar, which just screams "look at me, I had a hysterectomy." While I really didn't want a hysterecomy when I started down this road, I gotta say, I'd never even know I was missing that organ now (had it removed later after the initial myomectomy), aside from the whole cancer thing. And it really is great not to worry about your period any more.

Thanks for following up -and good wishes for a quick and comfortable recovery!

oh yeah, I went running today - it was brilliant! I'm slow now, and 15 lbs heavier than I used to be. But man it was cool to be out there again. I'll have to start treatments again soon - but decided I'm going to keep running (jogging?) as long as I can. and get back on my bike.
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Re: Recovery from fibroid removal [STFUandRun] [ In reply to ]
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My wife went through this a couple years ago. She had 3 fibroids one of which was 11cm in diameter. She had talked to both her OB/GYN, the high risk doctor who delivered our first son, as well as our family doctor. All of them had differing opinions on what to do so finally I told her to find an expert regardless of location to talk to. We found a doctor in Omaha NE who specializes in fertility, co-authored a book on myomectomy, and is a faculty chair for the university of nebraska medical schools fertility dept.. She was excellent and a joy to work with.

The surgery turned out to be rather complicated and forced her to "get creative" with the procedures. The 11cm fibroid had grown completely through the back wall of her uterus and left a gaping hole after its removal. Knowing that we wanted to have more children she had to think long and hard on how to preserve her uterus. The solution she came up with was one that she was not aware of ever being done before. She did a muscle flap reconstruction of her uterus, essentially bisecting the uterine wall next to the hole, folding those flaps over and sewing them together.

14 months later we had our second son, the doctors who did the c-section commented that they could not even tell where she had had the surgery.

if you would like to get in touch with this doctor let me know, I highly reccomend her.


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http://www.ventuscustoms.com Custom Bicycle Painting.
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Re: Recovery from fibroid removal [STFUandRun] [ In reply to ]
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All the best, to all of you.
I love the womans' forum- our hearts are in the right place, most of the time, beyond race splits & bench press!!

I faced my own battle last yr.
My 2 cents is only this: when it comes to the recovery- know your options. Ask all the right questions. ask a lot of questions.
I did, and my doc who was not a tri, not a mom, not a woman- had to also ask & research to find the best natural solutions for me.

I am now 110% a new person, a better & much healthier one, training hard & enjoying every day with my son.

PM me if anything.. thx
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Re: Recovery from fibroid removal [STFUandRun] [ In reply to ]
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Okay - I am going to chime in. Where is this de Vinci at? We have had a TON of trouble with ours and there is a very high rate of going blades up mid procedure with the robots. The system is great when it works - and terrible when it does not. You need to think long and hard about if a lesser scar and or a supposed better outcome with a robot is a better option than the hands and skills of a talented surgeon. Another thing about de Vinci is that the doctors cant really "see" if there is a larger fish frying in the pan that they thought to begin with. I am not saying that you should not use the robots - just go into it knowing that the robots are not infallible.

I could easily really piss off my employers with this post as no one is bragging about the fact that any and all mechanical systems can fail. de Vinci can and has failed.


Best of luck to you and speedy recovery.

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What if the Hokey Pokey is what it is all about?
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