need help figuring out options

I had a 9cm intramural.

Thank you and stay safe! This ice is ridiculous.

	Quote:
Originally Posted by Lindimartin Hi how large were you're fibroids for embolisation? Thanks Lindi

Hi Lindi - I have had a lot of treatments for my fibroids over the years (trying to do everything to avoid a hysterectomy because I was worried about potential pelvic floor impacts and sadly, had several close family members including my mother have a really bad result from it ... plus I just feel like it's best to only remove what is harmful and try to preserve the rest)....

I had my first UAE in 2011 which did not work - when I had another one in 2015 the interventional radiologist said that my arteries were completely intact and fully flowing to my fibroids and it didn't look like I ever had any treatment ... super weird since both UAEs were done at the same major hospital in the Bay Area... but anyway, it is possible for the arteries to regenerate so who knows why it failed for me the first time.

When I had my DaVinci myomectomy in 2013, I had tons of small fibroids, plus several larger ones varying from 3cm to 8cm. I looked like I was maybe 6 months pregnant. I had to pee constantly and was constipated all the time, despite eating a high fiber diet with lots of water, exercise, etc. so I should have been very regular. I also had severe anemia from very heavy/long periods where most of the days I was changing Super Plus tampons every 15-30 minutes, plus a big pad. It was so ridiculous I don't know why I put up with it for so long.

After the 2013 myomectomy all of my bad symptoms went away - no more pressure on my bowels or bladder. My periods were normal again, BUT I got Mirena about 6 months after, so who knows how that impacted things because shortly after that my periods went away.

Unfortunately about 2 years after the myo, in early 2015 I couldn't feel my Mirena strings so I went to my gyn who found new large fibroids pushing the Mirena out of place and I had to have it removed. At the time, I had another MRI to try and find the Mirena and it showed that the new fibroids varied in size from 8 cm to 3 cm.

I decided to try UAE again and so far so good, as mid-2016 they had shrunk a few centimeters, so they are headed in the right direction. My periods have been super light ever since. Most days I only wear a panty liner, but even on the heavy days it's just a Regular tampon changed at normal intervals. I feel like it really worked for me this time.

All that being said, I know my body is fixated on making new fibroids unlike a lot of women. I know personally several women who had myomectomies or UAE that never needed another treatment.

For me, if new fibroids grow again to become problematic, or if heavy periods return, I will have a hysterectomy. Heavy bleeding and anemia put our hearts at incredible stress and can lead to a cardiac arrest. I would rather risk pelvic floor issues than die of a heart attack!

Throughout these years I have had to advocate for myself and I do not hesitate to switch to a new doctor if I am not getting the right vibe that they are open to alternatives and listening to me and what I would like to do with my body. I went through 5 gyns locally to find a super awesome one that is a 1.5 hour drive each way, but totally worth it for the terrific care I receive from her and her husband (he's the gyn-surgeon who did my myo). Both have been totally supportive and think outside the box to advise me on the best treatment plan.

I think my doctors appreciate that I keep myself informed, from this web site, plus reading scientific studies and using tools like Visual Body. I also watched a lot of videos of different surgeries so I had a feel for what I would experience. It helps me feel more empowered to have at least a little bit of understanding to be better able to communicate with my doctors and ask the right questions.

Good luck with your treatment - please do tell us what decision you make and how your recovery goes!!

Hi
I would be happy to share my doctors once I have scoped them out. A friend of mine said that her sister actually had her hysterectomy done by a pelvic floor surgeon! A woman. Both her sister and friend had the same surgeon with really good results.
I will PM you soon.

Maybe we need to go to California? have a holiday at the same time, this snow needs to go!! ha ha

Also how large were you're fibroids when they were embolised?
Thanks

Lindi

	Quote:
Originally Posted by Lindimartin Hello Hystersisters forum members. I am a 43 y/o (no kids) active woman who enjoys the outdoors immensely and I have really come to understand how stress and doing things we don't want can affect our health. I have always had fibroids I feel (symptoms for years) and related to most hormonal changes and stress (it does effect hormones, insulin etc etc) a recent repeat US for a fibroid that was diagnosed just last year, has grown over the last 9 months to be 11 x 10 cm. wow. I have a retroflexed uterus so the fibroid is literally pressing through my abdomen to the front and blocking my bladder I have two other smaller fibroids as well. What I really need help with is identifying what feels good and the right thing to do. This Fibroid took me down like a sack of potatoes this weekend when I could not urinate and had back up into my kidneys. I am feeling a little angry at myself for not addressing this earlier and not really knowing about fibroids for years even tho I have complained to doctors about pain with sex, heavy painful periods and constipation FOR YEARS! Is myomectomy an option ? and needing some advice on what to expect. Can a large fibroid be taken out lapro or does one have to have an abdominal incision, also what is the verdict on leaving the cervix. I have three surgery consults coming up this week. Would love feedback very much appreciate this website. Lindi

I have had 3 vaginal myomectomies but my fibroids were not as big as yours (although I had anywhere from 3 to 26 of them). My myomectomies were easy to recover from compared to my eventual hysterectomy. I chose hysterectomy in the end because I was done with my fertility and my fibroids kept coming back every couple of years (hence the three procedures). I found them excellent procedures when fertility is a concern as I was able to conceive my daughter after the last one.

If you are not interested in preserving your fertility, hysterectomy isn't your only option. There are ablation procedures you can have so that your uterus can no longer grow fibroids. My surgeon informed me that as some tissue may grow over time, the procedure only lasts about 5 years or until menopause. So it is most recommended if you expect to begin menopause within 5 years of the procedure. Because I am 31, ablation wasn't an option for me, but it might be something for you to consider.

There are other options as well, but those were the main ones I considered or have had done prior to having a hysterectomy. The main thing to keep in mind with having a myomectomy is that there is a chance of recurrence. It might be worth starting there and seeing whether you are in those odds before you take more drastic measures.

I had all of my myomectomies vaginally and it took anywhere from a few days to a few weeks to recover. I did not have anything removed except the fibroids. They can give you a pill to soften the cervix so they can get through to the uterus during surgery.

	Quote:
Originally Posted by playacalor Hi Lindi - I have had a lot of treatments for my fibroids over the years (trying to do everything to avoid a hysterectomy because I was worried about potential pelvic floor impacts and sadly, had several close family members including my mother have a really bad result from it ... plus I just feel like it's best to only remove what is harmful and try to preserve the rest).... I had my first UAE in 2011 which did not work - when I had another one in 2015 the interventional radiologist said that my arteries were completely intact and fully flowing to my fibroids and it didn't look like I ever had any treatment ... super weird since both UAEs were done at the same major hospital in the Bay Area... but anyway, it is possible for the arteries to regenerate so who knows why it failed for me the first time. When I had my DaVinci myomectomy in 2013, I had tons of small fibroids, plus several larger ones varying from 3cm to 8cm. I looked like I was maybe 6 months pregnant. I had to pee constantly and was constipated all the time, despite eating a high fiber diet with lots of water, exercise, etc. so I should have been very regular. I also had severe anemia from very heavy/long periods where most of the days I was changing Super Plus tampons every 15-30 minutes, plus a big pad. It was so ridiculous I don't know why I put up with it for so long. After the 2013 myomectomy all of my bad symptoms went away - no more pressure on my bowels or bladder. My periods were normal again, BUT I got Mirena about 6 months after, so who knows how that impacted things because shortly after that my periods went away. Unfortunately about 2 years after the myo, in early 2015 I couldn't feel my Mirena strings so I went to my gyn who found new large fibroids pushing the Mirena out of place and I had to have it removed. At the time, I had another MRI to try and find the Mirena and it showed that the new fibroids varied in size from 8 cm to 3 cm. I decided to try UAE again and so far so good, as mid-2016 they had shrunk a few centimeters, so they are headed in the right direction. My periods have been super light ever since. Most days I only wear a panty liner, but even on the heavy days it's just a Regular tampon changed at normal intervals. I feel like it really worked for me this time. All that being said, I know my body is fixated on making new fibroids unlike a lot of women. I know personally several women who had myomectomies or UAE that never needed another treatment. For me, if new fibroids grow again to become problematic, or if heavy periods return, I will have a hysterectomy. Heavy bleeding and anemia put our hearts at incredible stress and can lead to a cardiac arrest. I would rather risk pelvic floor issues than die of a heart attack! Throughout these years I have had to advocate for myself and I do not hesitate to switch to a new doctor if I am not getting the right vibe that they are open to alternatives and listening to me and what I would like to do with my body. I went through 5 gyns locally to find a super awesome one that is a 1.5 hour drive each way, but totally worth it for the terrific care I receive from her and her husband (he's the gyn-surgeon who did my myo). Both have been totally supportive and think outside the box to advise me on the best treatment plan. I think my doctors appreciate that I keep myself informed, from this web site, plus reading scientific studies and using tools like Visual Body. I also watched a lot of videos of different surgeries so I had a feel for what I would experience. It helps me feel more empowered to have at least a little bit of understanding to be better able to communicate with my doctors and ask the right questions. Good luck with your treatment - please do tell us what decision you make and how your recovery goes!!

Thank you so much. I was anemic before and I will have a redraw of my blood work tomorrow. I start with a MRI. I had one surgeon totally just write me off as a candidate for myomectomy. The fibroid I have takes up a large part of my uterus. I am keen to keep my uterus and all I have heard is higher risk of morbidity and possible need for blood transfusion post myomectomy. I don't feel like UAE will give much relief, shrinkage of the large fibroid I have.

I will keep you informed and I really appreciate you're kind description of what you went through.

Lindi

	Quote:
Originally Posted by rammich I have had 3 vaginal myomectomies but my fibroids were not as big as yours (although I had anywhere from 3 to 26 of them). My myomectomies were easy to recover from compared to my eventual hysterectomy. I chose hysterectomy in the end because I was done with my fertility and my fibroids kept coming back every couple of years (hence the three procedures). I found them excellent procedures when fertility is a concern as I was able to conceive my daughter after the last one. If you are not interested in preserving your fertility, hysterectomy isn't your only option. There are ablation procedures you can have so that your uterus can no longer grow fibroids. My surgeon informed me that as some tissue may grow over time, the procedure only lasts about 5 years or until menopause. So it is most recommended if you expect to begin menopause within 5 years of the procedure. Because I am 31, ablation wasn't an option for me, but it might be something for you to consider. There are other options as well, but those were the main ones I considered or have had done prior to having a hysterectomy. The main thing to keep in mind with having a myomectomy is that there is a chance of recurrence. It might be worth starting there and seeing whether you are in those odds before you take more drastic measures. I had all of my myomectomies vaginally and it took anywhere from a few days to a few weeks to recover. I did not have anything removed except the fibroids. They can give you a pill to soften the cervix so they can get through to the uterus during surgery.

thank you so much. No one has talked to me about ablation as a treatment. I am not sure I would have to have a myomectomy before the ablation but I will ask my MD. I know that my fibroids are not retrievable vaginally.
Thanks so much

LIndi

From what I understand about ablation, it is NOT suitable for someone with fibroids because most fibroids grow within the uterine wall (intramural) and the ablation treatment only addresses the interior lining of the uterus. Thus, new and deeper existing fibroids can grow after ablation. Perhaps it is only useful for the pedunculated type of fibroid.

I agree that your fibroid might be too big to benefit from UAE. Myomectomy will at least remove it all at once and give you immediate relief. You can always have a hysterectomy later if new fibroids grow.

As it seems important to you to keep your uterus (as it was with me), definitely insist on seeing a doctor that's open to myomectomy or can provide concrete reasons why you're not a candidate for myomectomy (and if so, get a second or third opinion!) I got 5 different opinions before finding a great doctor who was open to alternatives.