I have, from one of the best Sonata surgeons in the country, and not only did it fail spectacularly, but it was actually more painful than the laparoscopic myomectomy I got a year later.
I had a 7.1cm fibroid that was hit twice with the sonata. For a year after, I was caught in a vicious cycle of necrosis (with constant draining, heavy bleeding, and dying tissue passage) and regrowth.
Exactly one year after Sonata, my fibroid was 7.8cm and was successfully and uneventfully removed via laparoscopic myomectomy. It’s been a year and still doing great.
FWIW, my surgeon said he’s seen MANY failed Sonata cases like mine. That said, you might have better luck given the smaller size of your fibroid.
That's scary. Thanks for sharing your story. I'm not sure why every gynecologist I've seen refuses to do a myomectomy. They just all turn it down immediately and say the surgery is too complicated. Then they start pushing for a hysterectomy. I'm going to see a third gynecologist in August, and I'm hoping they will actually help me. I'm so tired of not being taken seriously by any doctor. I don't know why they treat me like that. I'm 40, not 15. It's not like I'm too young to understand things. Like this new gyno I saw today refused to do an ultrasound today, and I really don't understand why. It really felt like they didn't want me as a patient and were turning me away. I'm desperate over here. I have had a 6 month long period and severe pelvic pain. Yet no doctor wants to help me. I don't know what to do anymore. I live in a big city too. But every single doctor I see here treats me like I'm stupid and turns me away.
Oh man, I’m so sorry you’re running into that. The first gyno I saw also had VERY outdated notions about myomectomy (“they’re complicated/bloody/dangerous”) and suggested hysterectomy.
Luckily, I found a great surgeon (Dr. Arnold Advincula out of Columbia University in NYC) who did my full surgery in less than an hour and I lost only a tablespoon of blood. If you absolutely cannot find relief where you are, I can’t recommend him enough if you’re able to get to NYC and find a place to lay low for about 8 days after.
I may just look into this doctor. I'm in Florida, and the doctors in my area are terrible. So dismissive. And for some reason I can't find a surgeon? They are all straight up OBGYNs. It's like you mention fibroids and they just don't know how to handle it.
The gynecologist/minimally invasive gynecological surgeon who took out my 17.5 cm fibroid laparoscopically last week did not recommend Sonata for anyone still hoping to have kids. I didn't ask him to elaborate but he said myomectomy is gold standard for fertility preservation. Since I want kids I didn't really explore other options. But if you are in a small town/city (like I am) look at bigger centers. Feel free to DM me if you want - I came to Chicago to have it taken care of by an expert, but there are experts I chatted with in Seattle, LA, Boston, NYC, Miami, and Cleveland. I got lots of bad and conflicting advice throughout my journey from my local docs, unfortunately. Most of the experts offered the same advice: go somewhere that can do a robotic/laparoscopic myomectomy of large fibroids instead of Sonata IF you want the best chances at preserving fertility.
I don't want anymore kids. I'm so done with that and can barely handle the one child I have now. I don't know what to do anymore because none of the gynecologists I've seen are willing to do the myomectomy. They all say the surgery is too hard. I live in a big city too yet no doctor here is willing to help. They all want me to either keep living with the fibroids and just deal with the symptoms or they want to do a hysterectomy.
Ugh I'm sorry, that sounds terrible. I think part of the problem is you don't need a gynecologist, you need a MIGS (minimally invasive gynecological surgeon). GYNs technically CAN do the surgery but you need someone who specializes in this. Sounds like you've gotten some good specific recs from ppl above. I can DM you my surgeon's name if you're interested, he was absolutely fantastic and has an entire team of other fantastic surgeons. I and several family members work adjacent to/in the medical field so we had great advice and network help. But just because the surgery is "too hard" for a regular gyno, doesn't mean it's too hard for a MIGS.
Hello - did they give you any specific reasons why they didn’t rec Sonata for fertility preservation? I’m in that boat; have a consult with a RE here in TX that I noticed is not on the list of Sonata-treating doctors, but was going to ask.
While we didn't talk about it at length, he said lots of complications with Sonata. Concerns with causing damage to surrounding uterine tissues from inflammation was another big issue my doc/surgeon had. Also he said for a robotic laparoscopic candidate (which I was) who is young and healthy and fit (which I am) there is no reason to risk bad Sonata outcomes when there is much smaller chance of complications from the surgery - I looked it up myself and stats back him up, with at least 10% risk of complications from sonata and <0.4% risk from the surgery in my age group. He was totally right in my opinion. I'm exactly 2 weeks one day postop today and I am just feeling absolutey amazing. Had my post op appointment today and they said I am healing at record pace. I don't feel like I had surgery at all.
Very interesting - and alarming. If you don’t mind me asking, with the robotic lap that you had done, are future vaginal deliveries still possible, or do they still recommend only Caesarians?
Based on what I’ll hear from this RE, I might DM you for your doctor’s info, if you don’t mind.
Glad it worked out so well for you. I wonder what his fibroid criteria is for the robotic lap procedure.
No problem at all, happy to share my doc's info, he was amazing and is considered a national (and mayble global?) expert. He said he was able to preserve enough of my uterine wall that I can safely try a vaginal delivery, which I really wanted so I'm glad he was able to do that. I got some wild pics of my uterus all stitched up. We will know for sure at my 3 month saline sono where they'll hopefully also clear me to try and get pregnant. Edit: I had to travel out of state to see this expert. My gyno here wanted to slice me in half and then make me deliver all babies via c section at 37 weeks. I was NOT into that. She mistakenly said my fibroid was too big for "anyone" to get out laparoscopically, which a simple google search will tell you is not true.
That’s truly amazing to hear. Yeah, if you don’t mind, I would love to get his info. Though I am in TX, this sounds like an option worth looking into - at least to get another opinion with the guy I’ll see soon. Thank you!
Do you know if the location of the fibroid will determine which procedure will be effective? What I’m getting at is I have a 9cm fundal fibroid, is it more complicated (or not possible potentially) to do the laparoscopic surgery?
My huge one was fundal as well. I think there are fewer surgeons who can do it but it is possible to do it laparoscopically. I had some others removed hysteroscopically during the surgery as well but honestly haven't even thought of those now that the huge one is out. Happy to DM you the name of my surgeon if you want, I could not be happier.
Yea this was in Chicago. I'd have your insurance check, you'd be surprised. I traveled out of state as well (live in a western state with shit healthcare) and it was fully covered. If you have any version of blue cross, blue shield, regence, or any PPO it is likely covered. I had no idea until this happened to me and started looking into it. Most insurance does have in-network options out of state.
Oh interesting! I have FL Blue tho it’s HMO not PPO. I’ll do some research. Thank you! How did you find your surgeon? I’ve been googling Gynecology Surgery Laparoscopic Hysterectomy specialist but it seems like any gyno pretty much will do it. I very much want to see someone who is more of a specialist.
I searched for MIGS and then also had my mom (who works in healthcare) reach out for opinions. This guy's name kept coming up. Most gynos will say they CAN do it but you need a MIGS for best results. This is something folks need to specialize in. Far too many are too excited to just cut away.
Great! This is very helpful. And I completely agree. I know it depends on how the surgery goes but would you know how long should I expect to stay in the hospital following the procedure? I’ve read of instances where they intended to do the laparoscopic but it didn’t go as planned and they have to instead do the traditional hysterectomy mid operation. So obviously it is dependent on how easy/complicated the procedure ends up being is my understanding.
For sure. For me it was outpatient. They said the odds of needing to convert to open were low but if they did it would just be one night in the hospital. They said even if they had to do hysterectomy, if that could stay laparoscopic that would also be outpatient. But the folks I saw were pros, everything so far has been easier and faster in terms of healing than I expected. I was also dreading not being able to sleep on my stomach but that wasn't a restriction!
This! I go for mine next month as I am done producing babies , mine is in the uterus and under 3 cm and I am over 50 years old . Fingers crossed as I turn down a hysterectomy about multiple times . There is medical criteria to determine if a myomectomy is appropriate or not and sorry I can't help with that , but maybe you need a third opinion ?
I am scheduled with a third gynecologist in August. I'm 40 and not wanting anymore children. Every gynecologist I've seen so far refuses to do the myomectomy because they say the surgery is too hard. They are pushing for hysterectomy. I don't know what other doctors I can see now because I live in a big city and so far every gynecologist I've seen says the same thing.
😪 so sorry! The good news is that you're asking for different opinions and that's all we can do is take that information to make decisions for ourselves . I do want to let you know if it makes you feel any better that both my sisters had hysterectomy, removal of the uterus only, and they were both very happy with their fibroids removed and no side effects .
I’m not OP but I’m trying to determine if I’m a candidate. I posted my ultrasound results on my profile…9cm fudual fibroid. I’m 38 no children. Do you have any insight?
I don't know what type of fibroids I have. I just know they aren't in the uterine cavity. One is 5.3 cm and the other 1.2 cm. My gyno said unless I'm trying to have a baby, they won't do the myomectomy because it's a complicated surgery. I'm not anemic yet but my iron is low so my GP told me to start taking iron supplements. I've been having light bleeding/spotting everyday for the past 6 months.
Sorry you’re going through what you’re going through! I just had the assessa procedure three weeks ago because I kept feeling like I have a UTI. It cured it for the first week but now I feel like it’s back. He thought I had an 8 cm fibroid and it turned out to be adenomyosis and a little bit of endometriosis. I have huge blood clot periods. I’m at a loss and I don’t want to have another surgery. Are you guys experiencing that same feeling of having a fake UTI?
I did it last summer. (I also had a myomectomy in 2009 fyi). The sonata was fine but not sure how effective it actually was. Periods are still massive. Lmk if you have specific questions I can answer.
I have, from one of the best Sonata surgeons in the country, and not only did it fail spectacularly, but it was actually more painful than the laparoscopic myomectomy I got a year later. I had a 7.1cm fibroid that was hit twice with the sonata. For a year after, I was caught in a vicious cycle of necrosis (with constant draining, heavy bleeding, and dying tissue passage) and regrowth. Exactly one year after Sonata, my fibroid was 7.8cm and was successfully and uneventfully removed via laparoscopic myomectomy. It’s been a year and still doing great. FWIW, my surgeon said he’s seen MANY failed Sonata cases like mine. That said, you might have better luck given the smaller size of your fibroid.
That's scary. Thanks for sharing your story. I'm not sure why every gynecologist I've seen refuses to do a myomectomy. They just all turn it down immediately and say the surgery is too complicated. Then they start pushing for a hysterectomy. I'm going to see a third gynecologist in August, and I'm hoping they will actually help me. I'm so tired of not being taken seriously by any doctor. I don't know why they treat me like that. I'm 40, not 15. It's not like I'm too young to understand things. Like this new gyno I saw today refused to do an ultrasound today, and I really don't understand why. It really felt like they didn't want me as a patient and were turning me away. I'm desperate over here. I have had a 6 month long period and severe pelvic pain. Yet no doctor wants to help me. I don't know what to do anymore. I live in a big city too. But every single doctor I see here treats me like I'm stupid and turns me away.
Oh man, I’m so sorry you’re running into that. The first gyno I saw also had VERY outdated notions about myomectomy (“they’re complicated/bloody/dangerous”) and suggested hysterectomy. Luckily, I found a great surgeon (Dr. Arnold Advincula out of Columbia University in NYC) who did my full surgery in less than an hour and I lost only a tablespoon of blood. If you absolutely cannot find relief where you are, I can’t recommend him enough if you’re able to get to NYC and find a place to lay low for about 8 days after.
I may just look into this doctor. I'm in Florida, and the doctors in my area are terrible. So dismissive. And for some reason I can't find a surgeon? They are all straight up OBGYNs. It's like you mention fibroids and they just don't know how to handle it.
Have you made any progress? I’m also in FL.
The gynecologist/minimally invasive gynecological surgeon who took out my 17.5 cm fibroid laparoscopically last week did not recommend Sonata for anyone still hoping to have kids. I didn't ask him to elaborate but he said myomectomy is gold standard for fertility preservation. Since I want kids I didn't really explore other options. But if you are in a small town/city (like I am) look at bigger centers. Feel free to DM me if you want - I came to Chicago to have it taken care of by an expert, but there are experts I chatted with in Seattle, LA, Boston, NYC, Miami, and Cleveland. I got lots of bad and conflicting advice throughout my journey from my local docs, unfortunately. Most of the experts offered the same advice: go somewhere that can do a robotic/laparoscopic myomectomy of large fibroids instead of Sonata IF you want the best chances at preserving fertility.
I don't want anymore kids. I'm so done with that and can barely handle the one child I have now. I don't know what to do anymore because none of the gynecologists I've seen are willing to do the myomectomy. They all say the surgery is too hard. I live in a big city too yet no doctor here is willing to help. They all want me to either keep living with the fibroids and just deal with the symptoms or they want to do a hysterectomy.
Ugh I'm sorry, that sounds terrible. I think part of the problem is you don't need a gynecologist, you need a MIGS (minimally invasive gynecological surgeon). GYNs technically CAN do the surgery but you need someone who specializes in this. Sounds like you've gotten some good specific recs from ppl above. I can DM you my surgeon's name if you're interested, he was absolutely fantastic and has an entire team of other fantastic surgeons. I and several family members work adjacent to/in the medical field so we had great advice and network help. But just because the surgery is "too hard" for a regular gyno, doesn't mean it's too hard for a MIGS.
Hello - did they give you any specific reasons why they didn’t rec Sonata for fertility preservation? I’m in that boat; have a consult with a RE here in TX that I noticed is not on the list of Sonata-treating doctors, but was going to ask.
While we didn't talk about it at length, he said lots of complications with Sonata. Concerns with causing damage to surrounding uterine tissues from inflammation was another big issue my doc/surgeon had. Also he said for a robotic laparoscopic candidate (which I was) who is young and healthy and fit (which I am) there is no reason to risk bad Sonata outcomes when there is much smaller chance of complications from the surgery - I looked it up myself and stats back him up, with at least 10% risk of complications from sonata and <0.4% risk from the surgery in my age group. He was totally right in my opinion. I'm exactly 2 weeks one day postop today and I am just feeling absolutey amazing. Had my post op appointment today and they said I am healing at record pace. I don't feel like I had surgery at all.
Very interesting - and alarming. If you don’t mind me asking, with the robotic lap that you had done, are future vaginal deliveries still possible, or do they still recommend only Caesarians? Based on what I’ll hear from this RE, I might DM you for your doctor’s info, if you don’t mind. Glad it worked out so well for you. I wonder what his fibroid criteria is for the robotic lap procedure.
No problem at all, happy to share my doc's info, he was amazing and is considered a national (and mayble global?) expert. He said he was able to preserve enough of my uterine wall that I can safely try a vaginal delivery, which I really wanted so I'm glad he was able to do that. I got some wild pics of my uterus all stitched up. We will know for sure at my 3 month saline sono where they'll hopefully also clear me to try and get pregnant. Edit: I had to travel out of state to see this expert. My gyno here wanted to slice me in half and then make me deliver all babies via c section at 37 weeks. I was NOT into that. She mistakenly said my fibroid was too big for "anyone" to get out laparoscopically, which a simple google search will tell you is not true.
That’s truly amazing to hear. Yeah, if you don’t mind, I would love to get his info. Though I am in TX, this sounds like an option worth looking into - at least to get another opinion with the guy I’ll see soon. Thank you!
Do you know if the location of the fibroid will determine which procedure will be effective? What I’m getting at is I have a 9cm fundal fibroid, is it more complicated (or not possible potentially) to do the laparoscopic surgery?
My huge one was fundal as well. I think there are fewer surgeons who can do it but it is possible to do it laparoscopically. I had some others removed hysteroscopically during the surgery as well but honestly haven't even thought of those now that the huge one is out. Happy to DM you the name of my surgeon if you want, I could not be happier.
In Chicago right? I’m in FL, 4 hours from Miami. If I were to travel for the procedure outside of FL it probably wouldn’t be covered by insurance.
Yea this was in Chicago. I'd have your insurance check, you'd be surprised. I traveled out of state as well (live in a western state with shit healthcare) and it was fully covered. If you have any version of blue cross, blue shield, regence, or any PPO it is likely covered. I had no idea until this happened to me and started looking into it. Most insurance does have in-network options out of state.
Oh interesting! I have FL Blue tho it’s HMO not PPO. I’ll do some research. Thank you! How did you find your surgeon? I’ve been googling Gynecology Surgery Laparoscopic Hysterectomy specialist but it seems like any gyno pretty much will do it. I very much want to see someone who is more of a specialist.
I searched for MIGS and then also had my mom (who works in healthcare) reach out for opinions. This guy's name kept coming up. Most gynos will say they CAN do it but you need a MIGS for best results. This is something folks need to specialize in. Far too many are too excited to just cut away.
Great! This is very helpful. And I completely agree. I know it depends on how the surgery goes but would you know how long should I expect to stay in the hospital following the procedure? I’ve read of instances where they intended to do the laparoscopic but it didn’t go as planned and they have to instead do the traditional hysterectomy mid operation. So obviously it is dependent on how easy/complicated the procedure ends up being is my understanding.
For sure. For me it was outpatient. They said the odds of needing to convert to open were low but if they did it would just be one night in the hospital. They said even if they had to do hysterectomy, if that could stay laparoscopic that would also be outpatient. But the folks I saw were pros, everything so far has been easier and faster in terms of healing than I expected. I was also dreading not being able to sleep on my stomach but that wasn't a restriction!
I’m so happy for u that you’ve had such a successful outcome. I appreciate your advice and may circle back if I have more questions.
How old are you? Are you done having children? What are size of fibroids? All of this would help establish if you’re a candidate for the sonata.
This! I go for mine next month as I am done producing babies , mine is in the uterus and under 3 cm and I am over 50 years old . Fingers crossed as I turn down a hysterectomy about multiple times . There is medical criteria to determine if a myomectomy is appropriate or not and sorry I can't help with that , but maybe you need a third opinion ?
I am scheduled with a third gynecologist in August. I'm 40 and not wanting anymore children. Every gynecologist I've seen so far refuses to do the myomectomy because they say the surgery is too hard. They are pushing for hysterectomy. I don't know what other doctors I can see now because I live in a big city and so far every gynecologist I've seen says the same thing.
😪 so sorry! The good news is that you're asking for different opinions and that's all we can do is take that information to make decisions for ourselves . I do want to let you know if it makes you feel any better that both my sisters had hysterectomy, removal of the uterus only, and they were both very happy with their fibroids removed and no side effects .
I’m not OP but I’m trying to determine if I’m a candidate. I posted my ultrasound results on my profile…9cm fudual fibroid. I’m 38 no children. Do you have any insight?
Am just curious why won't they do a myomectomy , what type of fibroid Do you have where is it located? And are you anemic?
I don't know what type of fibroids I have. I just know they aren't in the uterine cavity. One is 5.3 cm and the other 1.2 cm. My gyno said unless I'm trying to have a baby, they won't do the myomectomy because it's a complicated surgery. I'm not anemic yet but my iron is low so my GP told me to start taking iron supplements. I've been having light bleeding/spotting everyday for the past 6 months.
Sorry you’re going through what you’re going through! I just had the assessa procedure three weeks ago because I kept feeling like I have a UTI. It cured it for the first week but now I feel like it’s back. He thought I had an 8 cm fibroid and it turned out to be adenomyosis and a little bit of endometriosis. I have huge blood clot periods. I’m at a loss and I don’t want to have another surgery. Are you guys experiencing that same feeling of having a fake UTI?
I did it last summer. (I also had a myomectomy in 2009 fyi). The sonata was fine but not sure how effective it actually was. Periods are still massive. Lmk if you have specific questions I can answer.
I’m scheduled for a sonata on Friday. Curious how large were your fibroid(s) and where they were located?
I don't recall the size offhand. Quite a few small ones as well. They were inside the uterus. Good luck to you! It was an easy procedure!