Fibroid surgery

[litskispeciality]

I'm sorry if this is a repeat.

I just had a consult/2nd opinion about fibroid treatment. My GYN doesn't do the removal surgery. I'm not psyched with the GYN who will do the surgey, but I don't have a lot of choice. I have one outside of the uterus which is causing awful problems, I'm not comfortable with an IUD, esp if the fibroid will just be there in 5 years anyway so it seems like surgery is my only choice.

A couple of questions I should probably ask my doctor but forgot, based on your experience:

What was the recovery time?
    Looks like this will be a Thursday surgery so 3 days to recover? Is that enough?
Were you awake? He says he only puts you out because it can be really painful
Did any fibroids grow back?
My ultimate goal is to go hormone free, apparently this GYN wants to stop BC pills right after surgery. Did anyone go hormone free and did that cause more fibroids than with some sort of IUD?

Sorry for all the questions, my head is spinning. From what I've read on Dr. Google it's not as bad, just need time to process.

[themysteriouswife]

I had mine removed during C-section. Sorry, I can't help with recovery questions.

It's been 2.5 years and I'm pretty positive I have another one forming. I have an OB appointment scheduled for Jan. to get it looked at. Up until two months ago it's been a huge difference in my periods and pain. My periods for the first time in years were light enough I didn't need super plus tampons with pad back-up. I've noticed the uterus pain is getting a little worse and the flow is getting heavier.

Good luck.

[textbookcase]

I’m sorry I don’t have advice, but what are your symptoms if you don’t mind my asking? I have 3 fibroids that I know of that are fairly large and I’m having all kinds of pain and issues and it’s driving me crazy.

[JayhawkGirl]

Hi, I had three or four removed from in the wall and one large pendular one back in 2005. I was off work the remainder of that week, and went back very tired. I laid down at lunch each day the following week. The next weekend was Labor Day and I was daily tired but went out with my brand new boyfriend at the time, now DH.

Pain wise- I hurt the first couple of days. I also fought a lot of nausea and ended up with motion sickness patches to help. I stayed on BCP.

Recurrence - I do now have two more in the wall, have probably come on in the last 12-18 months. We are leaving them alone for now, but they’re causing some tenderness and adding to irregular bleeding.

[calle28]

My fibroid was large and I was completely put under. The surgery was very similar to a c-section.

I was off work for 5 weeks I believe.

Fibroids can grow back, and I'm scared mine will. My surgery was about 9 months ago.

[aliciaflorrick]

Following this as this in my future as well. Does anyone mind sharing how large theirs were?

[litskispeciality]

From what the GYN's are saying my external is rather small, I believe the size of a cherry tomato? Apparently they can get very big so I'm glad to remove it soon. I did some more Dr. Google research, seems like they do come back but if you exercise and avoid certain foods including coffee and alcohol (boo!) you can keep them from growing bigger (maybe). Trying to reduce my coffee intake to 3 days a week but it's tough. I think certain IUDs (hormonal) can help keep the fibroids from growing larger, but there's no guarantee and not every woman wants one.

It took a lot of self advocating to finally get an internal ultrasound. My GYN kept telling me my periods were "normal", that my thyroid issue wasn't affecting anything. I think I finally got her to turn around when I said I was changing overnight pads every hour on my heaviest days. I'm anemic now too so that was more evidence. Since probably April my periods start earlier and last a lot longer, sometimes two full weeks with times where I feel like I'm going to pass out and bad cramps/back pain. I have a lot of clotting too. Sorry this is TMI and gross.

This GYN cancelled my BC pills. He's having me take something else until surgery to stop all bleeding. In one way I'm happy to just see how my body reacts "normal" without pills, but I'm also scared, I've only been off BC for a short time in my early 20's and it was awful bleeding, bad acne, but nice to have a sex drive. My GYN swears your periods are supposed to get "better" as you age, but the posts here tell me otherwise. I guess worst case if this doesn't fix the bleeding then I can research IUD or a different kind of pill. Rule everything else out first.

[y4m]

I had mine surgically removed early last year. Because they were all internal to the uterus (submucosal), I could have a hysteroscopic myomectomy, which is still general surgery (the way my doctor does it anyway), but is outpatient and has no incision (they go in vaginally). The ultrasounds showed four 2-3cm fibroids, but once they got in there were over a dozen small ones as well. That recovery was pretty easy - I could have worked the next day if I had to.

One option to consider is UFE, which is an outpatient technique where they basically cut off the fibroid's blood supply to shrink it. It is generally not recommended for people who want to preserve fertility (but more because it hasn't been studied a ton, I think).

In general, I'd recommend getting a second opinion either from a reproductive endocrinologist (if you want to maintain fertility) and/or a minimally invasive gyn surgeon.

[y4m]

litskispeciality, did your ultrasound show any fibroids inside the uterus, or only outside (subserosal). Usually external ones cause issues more like fullness, bulk, or need to pee (because the fibroid is pressing on something else) versus bleeding.

[y4m]

This is an excellent data-based site for research: www.fibroidsecondopinion.com

[litskispeciality]

y4m I'll check out that site. I have an internal in the uterus and an external right on the wall (I think?). They can't check my lining because of the location of the fibroid so they can't rule anything else out. They're going to do a hysteroscopic myomectomy I think, he said it's with the camera and they cut out the fibroid. The GYN feels it's too painful after they dialate and cut to have you awake, but he'll refer me to one who will keep me awake if I don't want to go under.

I think this is also causing bladder issues. I've never had a kid but I get the pee when you laugh, sneeze etc. that women who've had kids say they have. I drink a lot of water but always feel a rush to pee. I just thought I have a weak bladder but I wonder if this is related?

I match almost every fibroid symptom on other websites. There's a slight concern it could be really early menopause since I think my mom started as early as 42 (I'm mid 30's), can they test for that? Both GYN's seem to think the external fibroid is causing the heavy heavy bleeding, cramping, pelvic pain etc. issues based on what I've told them. I don't want to have surgery but I can't keep bleeding like this.

[orangello]

I had a very large (2.5lbs at time of removal) external fibroid removed 7 years ago. My surgery was very similar to a c-section; I was put under, and spent 2 nights in the hospital. I was out of work for a week after that, and I should have taken at least another week for recovery. It was a good couple months before I was 100% back to normal.

I have more fibroids that have grown in, unfortunately, but I am in a holding pattern WRT more surgeries. I am hoping they start to shrink since I'm at that age where they can!

[thoseareradishes]

I had a robotic laparoscopy to remove a 5cm mass (diagnosed as a fibroid but ended up being balled up adenomyosis) in my uterine muscle. I was put under general anesthesia. It took about 2-3 weeks before I was feeling 100% again. My pain was manageable but I felt very sick and weak from the anesthesia. I've also had a hysteroscopy to remove polyps, and recovery was much easier - feeling back to normal within a couple of days. I have 2 or 3 new small fibroids or adenomyomas that sprouted up during my pregnancy.

I would seek out an RE if possible - I've found that obgyns are not great about fibroids.

[y4m]

Nov 14, 2017 12:06:25 GMT -5 litskispeciality said:

y4m I'll check out that site. I have an internal in the uterus and an external right on the wall (I think?). They can't check my lining because of the location of the fibroid so they can't rule anything else out. They're going to do a hysteroscopic myomectomy I think, he said it's with the camera and they cut out the fibroid. The GYN feels it's too painful after they dialate and cut to have you awake, but he'll refer me to one who will keep me awake if I don't want to go under.

I think this is also causing bladder issues. I've never had a kid but I get the pee when you laugh, sneeze etc. that women who've had kids say they have. I drink a lot of water but always feel a rush to pee. I just thought I have a weak bladder but I wonder if this is related?

I match almost every fibroid symptom on other websites. There's a slight concern it could be really early menopause since I think my mom started as early as 42 (I'm mid 30's), can they test for that? Both GYN's seem to think the external fibroid is causing the heavy heavy bleeding, cramping, pelvic pain etc. issues based on what I've told them. I don't want to have surgery but I can't keep bleeding like this.

So a hysteroscopic myomectomy has a very easy recovery based on my experience - I could have worked the next day if I had to.

But that can only take care of internal fibroids, not anything outside the uterus.

[panicfoot]

I had a robotic myomectomy to remove my 7cm fibroid, which was on the outside but had also grown inside somewhat? I can’t remember exactly.

I chose robotic for the reduced recovery time. There were 5 small incisions. I spent one night in the hospital for pain management. I went back to work after two weeks but i should have only gone part time or waited another week because that was pretty rough.

To my knowledge, it hasn’t grown back but i haven’t had a sono since ds was born. I am having terrible uterine pain and cramping after sex, which I had prior to removal and not after so i guess i wouldn’t be surprised.

[litskispeciality]

Nov 14, 2017 12:58:50 GMT -5 thoseareradishes said:

I had a robotic laparoscopy to remove a 5cm mass (diagnosed as a fibroid but ended up being balled up adenomyosis) in my uterine muscle. I was put under general anesthesia. It took about 2-3 weeks before I was feeling 100% again. My pain was manageable but I felt very sick and weak from the anesthesia. I've also had a hysteroscopy to remove polyps, and recovery was much easier - feeling back to normal within a couple of days. I have 2 or 3 new small fibroids or adenomyomas that sprouted up during my pregnancy.

I would seek out an RE if possible - I've found that obgyns are not great about fibroids.

When you say RE's are better, does that mean different treatment? I worry about having to have another surgery later. If it helps I don't want kids, I just want to be hormone free since I've been on bc pills for most of my life. I want to see how my body reacts. Sometimes I wonder if I'm also just not responding to the pills anymore? Although the idea of permanent damage from surgery kids or not doesn't sound fun either.

Thank you for all of your feedback!

[aliciaflorrick]

Agree on the RE recommendation. My OB/GYN strongly suggested a hysterectomy which according to my RE is not necessary at all and a huge relief.

[thoseareradishes]

Nov 14, 2017 17:37:10 GMT -5 litskispeciality said:

Nov 14, 2017 12:58:50 GMT -5 thoseareradishes said:

I had a robotic laparoscopy to remove a 5cm mass (diagnosed as a fibroid but ended up being balled up adenomyosis) in my uterine muscle. I was put under general anesthesia. It took about 2-3 weeks before I was feeling 100% again. My pain was manageable but I felt very sick and weak from the anesthesia. I've also had a hysteroscopy to remove polyps, and recovery was much easier - feeling back to normal within a couple of days. I have 2 or 3 new small fibroids or adenomyomas that sprouted up during my pregnancy.

I would seek out an RE if possible - I've found that obgyns are not great about fibroids.

When you say RE's are better, does that mean different treatment? I worry about having to have another surgery later. If it helps I don't want kids, I just want to be hormone free since I've been on bc pills for most of my life. I want to see how my body reacts. Sometimes I wonder if I'm also just not responding to the pills anymore? Although the idea of permanent damage from surgery kids or not doesn't sound fun either.

Thank you for all of your feedback!

I think they just have more experience dealing with them (eta: just based on my own personal experience), since fibroids sometimes need to be treated prior to getting pregnant.  I watched my friend struggle with heavy bleeding from a fibroid for months, and the several obgyns she went to wouldn't do anything but give her birth control pills or an IUD.  I suggested she see my RE, and he did a hysteroscopy to remove it and her quality of life is so much better now.  I think an RE could give you a total treatment plan for both the internal and external fibroids, as needed according to what your goals are.

[snshne322]

I'm having an appointment tomorrow to check the growth of my fibroid. It's starting to cause major issues, bladder/period/lifestyle. I'm freaked because two doctors have told me if I do opt to have it removed, they will just take my uterus. At last check a year and a half ago it was 11.5cm, right in front, behind my bladder. Things are just getting worse. I'm done having kids, but I'm so emotional about this. I know my quality of life would improve dramatically, but fuck, I hate having to make that decision.

Sorry, I know this isn't what was asked, I've just never had others to chat with about this stuff. No one I know has fibroids, let alone large or bothersome enough to need removal.

[JayhawkGirl]

My OB immediately send me on to an RE. One of my best friends went with me to my HSG. She had been through IF and I was nine months into daily bleeding w/no answers. She looked at the list of REs they gave me and hers was on there. He did my surgery. Six years later, he helped me through secondary infertility.

[y4m]

Nov 14, 2017 19:49:54 GMT -5 snshne322 said:

I'm having an appointment tomorrow to check the growth of my fibroid. It's starting to cause major issues, bladder/period/lifestyle. I'm freaked because two doctors have told me if I do opt to have it removed, they will just take my uterus. At last check a year and a half ago it was 11.5cm, right in front, behind my bladder. Things are just getting worse. I'm done having kids, but I'm so emotional about this. I know my quality of life would improve dramatically, but fuck, I hate having to make that decision.

Sorry, I know this isn't what was asked, I've just never had others to chat with about this stuff. No one I know has fibroids, let alone large or bothersome enough to need removal.

There are a few awesome private support groups on Facebook if you are into that.

I have also heard really great things about the forums on hystersisters.com

Good luck tomorrow

[snshne322]

Nov 14, 2017 20:58:10 GMT -5 y4m said:

Nov 14, 2017 19:49:54 GMT -5 snshne322 said:

I'm having an appointment tomorrow to check the growth of my fibroid. It's starting to cause major issues, bladder/period/lifestyle. I'm freaked because two doctors have told me if I do opt to have it removed, they will just take my uterus. At last check a year and a half ago it was 11.5cm, right in front, behind my bladder. Things are just getting worse. I'm done having kids, but I'm so emotional about this. I know my quality of life would improve dramatically, but fuck, I hate having to make that decision.

Sorry, I know this isn't what was asked, I've just never had others to chat with about this stuff. No one I know has fibroids, let alone large or bothersome enough to need removal.

There are a few awesome private support groups on Facebook if you are into that.

I have also heard really great things about the forums on hystersisters.com

Good luck tomorrow

Thank you!  I'll look into both of those.

[alare]

Nov 14, 2017 10:08:31 GMT -5 textbookcase said:

I’m sorry I don’t have advice, but what are your symptoms if you don’t mind my asking? I have 3 fibroids that I know of that are fairly large and I’m having all kinds of pain and issues and it’s driving me crazy.

TMI. Not OP but my symptoms were back pain (9 cm anterior fibroid), unbelievably painful periods with very heavy flow, constant bloating and constant need to urinate. Constant as in every 5 minutes or less.

I had multiple intramural fibroids- 9 cm, 2 cm, 3 cm and seedlings.

OP:
Because of the multiple seedlings and hopes of conceiving, I opted for a laparatomy. Recovery was rough and long. My surgeon compared it to having 6 c-sections! Hopefully the hysteroscopy works well for you - if possible I would try to get a consult with a doctor who does Da Vinci robotic myomectomies and someone who does embolization (not covered by many insurance companies). Just to see all of your options.

I had the surgery in April of 2016. Conceived in Sept of 2016. During the 20 week ultrasound they found a couple of fibroids growing :-(. They were snacking on all the pregnancy hormones.

GL. The only regret I have about the surgery is not having it done sooner! 

[alare]

Oh, just wanted to add one thing about the fibroid-caused bladder issues. One of my fibroids kept irritating my bladder, especially while ovulating. After the myomectomy I expected the bladder issues to resolve immediately. Unfortunately, my body had accustomed itself to needing to go frequently. I ended up doing bladder training - emptying, writing down the time, telling myself my bladder was empty and I did not need to pee anymore, then waiting at least 1/2 hour before allowing myself to go again. I was able to keep stretching the times until I was back to normal. It only took a couple of weeks.

[Linie]

I had an internal fibroid removed on Sept. 18 this year. It was 4 cm. I was put under for 1 hour and the intervention was done by my obgyn vaginally. He managed to keep my hormonal IUD in place.

It was done on a Monday and I was on leave for 7 days. I slept the entire week, probably because I was overtired and also as a result of the anesthesia. I had normal pain meds and a round of antibiotics. I wasn't in any pain, just tired.

Good luck,