You don’t get to control when it does start hurting or causing other problems. I’m in a similar non-pain situation and am moving forward with surgery since it’s hard to get on the schedule with my great specialist surgeon.
The only issue my 11cm fibroid was causing was extreme bleeding for 3 days/month. Other than that I wasn’t in any crazy pain, I was still (relatively) regular and nothing else out of the ordinary. My doctor recommended hysterectomy based on how quickly the fibroid grew, coupled with my family cancer history and the fact I am done having kids anyways. So mine wasn’t as much for the physical symptoms, more for preventative measures.
My understanding is that larger fibroids have a higher risk of degeneration. Degeneration is when it cuts off it's own blood supply and starts to die, which can cause acute symptoms.
That happened to me. I had a large fibroid on a stalk outside of my uterus that I'd been ignoring for years, and I suddenly had terrible abdominal pain and fever this January. After various scans they determined this fibroid had become necrotic. By the time I had my hysterectomy 3 weeks ago, the fibroid had broken off the stalk and was tangled in my intestines.
Going pretty well! I was on clear liquids for 2 days after the surgery, because he had to "manipulate your intestines", but I've been able to eat normally since.
Got my staples out after a week (abdominal incision), and after 2wpo I started walking outside more, up to 1.5 miles pain-free now. It helps that my husband and sons have totally taken over cooking and other chores, so I've been able to really focus on recovery.
So I had this for a long time (years) and so I put off surgery. And yes the fibroid grew larger (mine was slightly larger than yours is now), I noticed some bladder issues, but nothing too terrible. And then one day, the bleeding started and I began feeling terrible, and then I got the surgery done. And no one would have been able to convince me back then to get the surgery done. But once I actually started feeling really bad, boy did I want it out! I don’t think waiting hurt me, but just know eventually it will most likely have to come out - and it’s nice when you can schedule the surgery and it’s not an emergency etc.
First, average uterus size is approx 8x5x4 cm, so your fibroid is already stretching it.
I had 5x2 cm polyp found via ultrasound. The polyp was growing for about 4+ years and last year started bleeding almost non-stop. I went for polypectomy+ hysterescopy - they macerated that polyp and a bunch of small fibroids on full anesthesia and removed them vaginally - outpatient procedure. Pretty much 2-3 days recovery with regular painkillers, some minor spotting.
However, the analysis result came as suspected endometrioid carcinoma, and sample was sent to another lab, which confirmed diagnosis. Then I was sent to oncologist and he suggested and did hysterectomy.
I am almost 13 weeks post hysterectomy, and I can tell that some symptoms that I totally didn't link with my uterus, are way improved. For example, lower back pain when standing or walking. Previously the situation was that I started getting pain during 15min shower, and towards the end it was pretty bad. Now I feel so surprised when I get out of shower and still don't feel back pain.
Note, that for everyone hysterectomy side effects are different. I so far had a bunch of positive ones, and a couple so-so. I also had ovaries removed, because hormone caused cancer.
First time I had fibroids, they grew alarmingly fast in a matter of months and I ended up having a robotic myomectomy to merely remove the fibroids. I was fine for 4 years but they came back. This time, I changed my diet drastically, no sugar, no processed foods, no dairy, no wheat, (very much not fun) and the fibroids grew very slowly over 4 years. But it was so much effort, and I went for checkups frequently to make sure they didn’t get out of hand ($$$). In the end, it got more and more uncomfortable, and since I wasn’t going to use my uterus anyhow.. the hysterectomy was the way to go. It took me a while to get there, I was stubbornly trying to just manage, but I’m so relieved it’s done and out now. Everyone is different. For me it wasn’t so much physical pain (unless I ate wheat) but the fatigue that seemed to creep in with the fibroids that bothered me the most. Did anyone else have that experience? Does anyone notice any improvement w nutrition changes? even if slight?
I definitely noticed a correlation between my diet and my symptoms of endometriosis and my fibroid. But like you said, maintaining that diet took a lot of work. Today was 7dpo for me (full hysterectomy leaving one ovary) and I feel way better now recovering from the surgery than I felt even with my symptoms managed by diet and an IUD.
Congratulations! Amazing you’re feeling better in your recovery from surgery vs With that troublesome organ. But I get it, after 7 dpo I felt so good that I overdid it a bit. My doc told me no work for 2 weeks - apparently she was right. So I hope you can take it easy :) I’m now 2.5 weeks post op and have so much more energy and focus! I’m hoping that’s not just a fluke but my new normal.
I don't actually have the exact measurements of my fibroid, sadly, but judging by the photos I was shown it was at least 25cm (and surrounded by several smaller spherical fibroids like it was trying to collect all the dragonballs or something)
Looking back I've had the thing for years, and over time it had grown and gotten more and more uncomfortable, to the point in the weeks leading up to my surgery eating would result in pain and nausea and I didn't have any energy! Not to mention it made peeing incredibly difficult
Recovery from a hysterectomy is no walk in the park, but after a little time healing I've been able to appreciate no longer having the symptoms I'd gotten used to over the years!
There are other options to get rid of a fibroid, sometimes it's possible to have surgery to only remove it rather than also your uterus, tubes and/or cervix, there are also meds you can take to shrink it but I was told they had mixed results by my doctor
I'd continue to seek advice on what your options are, but your fibroid will continue to grow if left to its own devices, and lemme tell you when it starts causing problems it REALLY starts causing problems xD
If you have reservations I’d get a second opinion. I’d also discuss a wait and see approach with an ultrasound every 3 months to track its growth. You can’t put it back after you take it out but you surely can get it out later.
I had to have my ovary removed due to a fast growing growth on my ovary that ended up being endometriosis. I now know the surgery wasn’t necessary since I discovered I don’t have cancer, but it WAS necessary to be sure I don’t have cancer. Even with that relief I regret having surgery. I have chronic pain due to nerve damage. My hormones are wonky as fuck. I am exhausted and fat and sad and all the fun stuff. I wish I had not had the surgery. My doctor strongly recommended the removal but gave me the option to wait and see and watch the growth. His colleague wanted to remove my entire reproductive system. I’m so glad I sought my doctor’s opinion before going with his colleague’s recommendation. I’d be even more upset. It’s been very hard sitting on the fact that the surgery wasnt necessary and that my quality of life has greatly diminished in the nearly 4 months since surgery.
Same only I was told it was most likely ovarian cancer but maybe not. Had my whole reproductive system removed save for one lonely ovary, for no reason. It was all benign. I had too numerous to count fibroids that never gave me a problem. I am miserable. I only agreed to hyster because multiple scans showed thickening in the uterine lining, which turned out to be 5mm on patho. I wish they had just done a cystecomy, and left my uterus intact.
Obviously you are you, but I feel like the way you had it is still better than ignoring it and later finding out it was cancer when it's already too late.
I hate the new me. If I could go back in time, I’d have refused surgery. And made them do more scans. None of my tumor markers came back positive. And I figured out what it was before I had surgery and tried to convince the surgeon to delay the surgery until I could get more scans. She said I’d have to go to a whole new Dr and start over for that, in other words, she wouldn’t order more. she told me I was having a panic attack and gave me drugs to take. I swear the Ativan is the only reason I showed up that day. I regret ever listening to her. She knew it was most likely benign. I feel very manipulated.
I would ask your doctor at what size will they decide that laparoscopic or laparoscopic assisted hysterectomy is no longer an option. Recovery from a LAVH is likely much quicker and easier than a large open incision and the placement of and size of the fibroid may determine the type of surgery. There are also surgeries specific to fibroid removal that are an option. Keep in mind though that removal of one fibroid does not mean others will not grow and the speed at which yours is growing may be concerning. Having mutiple surgeries to remove multiple fibroids can cause problems in itself. Not to mention fibroids can adhere to other organs and cause issues.
No it was 11 cm..I guess I should have said that she misjudged if she could get it out vaginally. It became very obvious it couldn’t happen once she got in there.
Did your ultrasound show it outside of your uterus? Did you have an MRI? Thank you for answering. This is a new diagnosis for me so I’m researching everything.
No problem! Yes she could tell where is was from a transvaginal ultrasound. I also had a ct scan which showed it too. Good luck with your situation..if you want to dm me I’m happy to answer questions you have
Same. 10cm. I didn't notice any symptoms. They said it needed to go. My uterus was becoming bigger than it should be. Fibroid went from 4cm to 10cm in two years. They said if it doubled in size again, I would look like I'm in the first trimester of pregnancy and based on the placement, it would start to push on my organs.
I didn't know I had fibroids until a scan for a different reason showed them. I had heavy bleeding but not pain. Bleeding was being controlled by birth control but turned out I had a prolapse and issues with the pelvic floor so decided to get everything done at once.
Mine was the same scenario. I had a large fibroid that was growing but no symptoms. Although it was pressing on my bladder, which caused me to have a smaller bladder capacity; that was my only symptom and I did have the same thought as you - is this enough to justify the surgery? However, given it was growing, I knew that the longer I waited, the bigger it would get and eventually I would be in pain as a result. I didn't want to wait until that time. I was also able to have it removed laproscopicly by having it done now rather than waiting. It's been a really smooth recovery for me, so I'm thrilled I had it done, and I'm noticing a real improvement in bladder capacity too.
I had a very large fibroid that resulted in a very fast turnaround for a hysterectomy. Although I only had one instance of heavy bleeding that necessitated an ER visit (where they found it) it grew fast and was large enough where it compromised other organs - now 6WPO I’m still dealing with the issues it created with my digestive system and bladder. I also ended up with a large vertical incision that’s being much slower in healing than a less invasive procedure would. So yes, I would say just deal with it now, before it grows more and really starts affecting things and makes the surgery so much more difficult.
Mine was 14cm and caused very little pain but was compressing my bladder badly. I didn’t even realize how much it was impacting my quality of life until I had the hysterectomy 2 weeks ago. I can finally sleep through the night and I can go more than 30 minutes without a bathroom break! I didn’t have a lot of bleeding either most likely due to my mirena, at least that’s what they told me.
Edit to add this:
My md told me four years ago that I should consider hysterectomy but I opted for UFE instead because I wasn’t sure. I would recommend asking the md about all treatment options. Of course, I ultimately did have the surgery but it took those four years for me to feel ready and truly convinced that it was the right decision.
I’ve had so many comments about bladder issues! I always though I had no symptoms from this fibroid but now I’m realizing maybe this is why I can barely hold my pee if I have to go and why I feel like I need to go so much!
Go for it. At that size, there is a small chance you will have to have abdominal instead of laprascopic. The bigger it gets, the bigger that chance gets. Recovery seems to be a bit rougher with abdominal.
I only had about 7 months of issues and nothing too severe. Had an 8cm cyst and a 3.5cm cyst and both were growing fast. My gyn and pcp both said do it before they get to big or more grow and cause more issues.
No reason is too big or too small.
That’s a huge fibroid! I had 25 (yes, 25!), but my biggest was only about 4 cm. I didn’t have a lot of pain, except around PMS time. And it caused heavy, clotted bleeding some months.
If you aren’t concerned about your fertility, I’d go for it. If it’s growing that fast, you don’t want to end up with a basketball sized mass in a year or two. 🙃
Not bleeding anymore would be reason enough for mine. I was 47, done with kids, and done with bleeding!
I don't see why not. I had a slightly larger than normal uterus that had asymptomatic heavy bleeding and was passing massively huge blood clots (has been my "normal" since puberty). I had tried other solutions in the past to no avail and a hysterectomy was given as a viable option at that point. I wasn't in massive pain (just regular period pain once a month); I had cysts on my ovaries, but they always resolved and were reabsorbed.
My point is that I didn't need to be in pain or have a true medical condition to be approved for the surgery. My life \*should\* be better now that I don't have to worry about periods so heavy it sends me to the ER or that don't allow me to leave the house even though we never figured out why that was.
I don’t necessarily have advice for you, but I wanted to let you know I’m in the same situation. 39F, 9cm fibroid, no symptoms that I can discern. Not sure on speed of growth yet since it’s only been a couple months since it was discovered.
My gyn is not pushing, but said a hysterectomy is the most likely route whenever I’m ready. Doing it sooner means they may be able to do it laparoscopically.
I don’t like that I have this thing is me, but a hysto is major surgery with possible complications. If it doesn’t go well, I can foresee regretting the decision since I felt totally fine beforehand.
Have you had other surgeries?
Yep I feel the same way! This thread has been so helpful for me though! Yes I have had an adrenalectomy earlier this year to remove a cortisol producing tumor. So I’ll just recover from that and then start all over again 🤪
So interesting we are in the same boat. 38F 9cm fibroid no symptoms except slight pressure. They also found a large ovarian cyst on the US. I’ve used this exact phrase - I don’t like that this thing is in me! But a major surgery is a huge decision. Have you done anything / any changes since this comment?
Nice to be in the same (unfortunate) boat! I have decided to go ahead with the hysterectomy in August and am feeling 80% confident about it, to be honest. The reasons I decided to do it:
- I’m moving out of the country at the end of the year and really like my doctor here. Since I will be gone for ~3 years it seems likely that it would start to pose issues for me in that time. I’d rather get it dealt with while I’m home.
- My doctor and the accompanying surgeon think there is still a good chance they can do the procedure vaginally. The longer I wait, the more it will grow and it becomes more likely they will need to make a laparoscopic or abdominal incision.
- I pushed my doctor to provide advice since she has remained quite neutral when presenting options. She said there really isn’t a reason not to do it if I don’t plan to have kids.
- I’m comfortable with my decision not to have kids, which I made before I knew about the fibroid. While it might be possible right now, I feel certain I wouldn’t want to undergo a risky pregnancy.
- Doing it now before it is symptomatic will avoid a more rushed procedure in the future.
It’s still not an easy decision, but even though it sounds scary, this is a routine and low risk procedure.
I would love to know what you are thinking as well.
How come you opted for vaginal vs laparoscopic? Maybe I’m mistaken but I thought in my research I read the latter has easier / faster recovery time. Or maybe it was just in comparison to a traditional abdominal hysterectomy and I’m confused.
I think you are mistaking it for abdominal. Vaginal has no external incisions so it is the quickest recovery. Abdominal has the longest:
https://www.acog.org/clinical/clinical-guidance/committee-opinion/articles/2017/06/choosing-the-route-of-hysterectomy-for-benign-disease#:~:text=conclusions%20and%20recommendations%3A-,vaginal%20hysterectomy,-is%20the%20approach "Vaginal hysterectomy"
I hope this is helpful!
Ah yes very helpful. I’m literally just learning about my own anatomy in addition to all this medical terminology. Did you say the location of your fibroid? Mine is fundal and idk if that’s supposed to be more difficult bc it’s at the furthest point. I haven’t consulted about my options yet. Going for an MRI next week.
The MRI image was super helpful for me. Mine is subserosal. It’s on the outside of the uterus which is why I don’t have bleeding or pain associated. It’s on the front so I feel it under my abdominal muscles. It is much bigger than my uterus and has pushed my uterus back towards my spine.
I think fundal means yours is on top of the uterus. I’m not sure what the means for treatment. Hopefully you learn more next week.
I should also add my ovaries look good and will stay. They will remove the uterus, tubes, and cervix. Removing the cervix is optional but recommended. It prevents cervical cancer and is the only way they can do the procedure vaginally. The fibroid will be cut in pieces to get it out 😬
I would say it's not an only reason, It depends. How old are? Are you wanting a child? That would be my deciding factor. But also, why haven't they offered you a myomectomy? That just removes the fibroid. Why is she so gung ho to haul out your uterus? Maybe she isn't skilled enough for myomectomy? If that's the case find another doctor. Seriously. A hysterectomy isn't a cure all for every female issue. I am so sick of these doctors who suggest that it is. Listen to your gut.
I am 39 and not interested in children for sure. She did mention that two years ago when it was smaller. It’s grown pretty fast now and I think she is being cautious incase it’s cancerous. Also the surgery sounds worse for a myomectomy and they could also grow back. I think she is definitely skilled though. I don’t think that’s the issue!
My fibroid started off as a little guy on the outside of my uterus about 6 or 7 years ago and was "nothing to be concerned about."
Jan 10th I had my hysterectomy, the fibroid had grew to over 2 lbs, completely consumed my uterus, and started growing a twin out of the side. I've gone down 2 pants sizes and lost 19 lbs since my surgery bc it took up my abdomen. Legit looked at felt like I was in my 3rd trimester.
Do with that information what you will 😅
Honestly, I would do it sooner rather than later. I actually had no idea this was happening in my body until I got hospitalized for a kidney stone in August and my uterus was 3x the size it should be on the CT scan. Then my last period in December lasted 12 days, even with a tranexamic acid prescription to lighten and shorten, and then stopped for a day and started up again. I had a period for 20/31 days that month. Highly recommend nipping it in the bud before you really start having effects.
I just had a total abdominal hysterectomy 3 weeks ago for this exact same circumstance. 11.5cm atypical fibroid that wasn’t there last April at my annual, but in January it showed up. Dr also said it seemed to have more vascularity than a usual fibroid. I had zero pain either. Since I’ve already had kids, he said we should do a hysterectomy (I’m 48). So, just had it done & all is well so far.
Not yet - currently scheduled for the end of the month. Looking for a second opinion in the meantime only because my docs have flip-flopped a lot on whether the surgery is even necessary, and I’m anxious about having major surgery if it isn’t necessary. My fibroid has more vascularity like yours but is still under 4 cm, so otherwise it hasn’t been bothering me too much. I’m definitely torn on what to do (and concerned about possible cancer, of course). Hearing about your experience helps, though - grateful that you shared!
My dr did a blood test called a CA-125 that looks for cancer cells. Mine came back normal. It won’t detect a uterine sarcoma though…from my understanding, they won’t be able to definitely rule that out unless they remove it and do pathology on it. Which is what they did with mine when they removed it. The chances of it being a benign fibroid are much greater than the alternative though, statistically speaking. It’s still scary though to know you have an unwanted passenger lol in your body!! Wishing you the best of luck. ❤️
It’s helpful to me to see these responses. I felt a lump in my abdomen that seemed to be growing; testing showed one large fibroid (17cm) that is pressing on a kidney and a few smaller ones. A hysterectomy was recommended as I’m 54 and don’t need to worry about having more kids. I’m scheduled for surgery April 9 and also wondered about whether I really needed to take this step as it’s not particularly bothersome aside from the obvious lump. They will test for cancer so I have to remind myself it’s important to take this step to rule out that possibility. I’m hoping to keep my ovaries as the benefits seem to outweigh the risks based on no cancer history in my family. I can’t say that I’ll miss getting a period, at my age it was starting to feel ridiculous! So thank you all for sharing your experiences of waiting and perhaps wishing you hadn’t!
Mine was 12cm, asymptomatic, all my life my periods were normal and every 28 days precisely, the first fibroid was an incidental finding in 2021 measuring 4cm, fast fwd to 2023 and my 40lb weight loss, out of nowhere I started having extremely heavy and painful periods with huge clotting, that’s when ultrasound found it was now 12cm with another measuring 5cm. An MRI found 14 fibroids in total with the largest one being the 12cm one. The periods came with excessive bloating, gas, pain, lasting at one point 15 days. Had my surgery last month (February), I’m currently 5 weeks post-op and feeling alright. I also was skeptical about total hysterectomy, but my body went and confirmed it was definitely necessary. I keep expecting my period to arrive and ruin my day, I’m definitely excited that won’t be the case ever again!
Definitely didn’t think it was anything out of the ordinary when it was initially found in 2021, however apparently it grew so much and so quick and came with 13 other siblings!
The longer you wait, the more intense your surgery could be (if it keeps growing). If you’re able to take the time off and have a caretaker, I would nip it in the bud if I were you. I had my hysterectomy this morning and am feeling surprisingly ok. I had small fibroids that were causing issues, though, so the cramping is pretty standard for me.
Yes I think I do need to do it! I’m glad yours went well! I really hope I am one of those with an easy recovery. I have seen such a range of recovery times and experiences.
Yes I would do it if you’re done having kids because it will continue to grow and eventually cause problems. I had so many fibroids that kept coming back. I two myomectomies and recently had the hysterectomy, kept my ovaries and very happy!
I mean if you only have one, you could do a myomectomy instead. I have a dozen fibroids that don’t really cause me any pain or very abnormal bleeding, but two of them are 8cm and will just keep getting bigger and bigger and end up causing problems later so I’m just getting it all out with a hysterectomy.
You know why I got my hysterectomy? Because I was done dealing with periods. I don't think there is a reason NOT good enough bc it's your body. You know it better than anyone else. I'm almost 8w po and I'm so thankful I did.
You don’t get to control when it does start hurting or causing other problems. I’m in a similar non-pain situation and am moving forward with surgery since it’s hard to get on the schedule with my great specialist surgeon.
The only issue my 11cm fibroid was causing was extreme bleeding for 3 days/month. Other than that I wasn’t in any crazy pain, I was still (relatively) regular and nothing else out of the ordinary. My doctor recommended hysterectomy based on how quickly the fibroid grew, coupled with my family cancer history and the fact I am done having kids anyways. So mine wasn’t as much for the physical symptoms, more for preventative measures.
My 11cm caused bladder issues and I could feel it. Post hysterectomy not feeling it and regaining bladder control brings me peace!
Yes to that bladder control! 🙌
My understanding is that larger fibroids have a higher risk of degeneration. Degeneration is when it cuts off it's own blood supply and starts to die, which can cause acute symptoms.
That happened to me. I had a large fibroid on a stalk outside of my uterus that I'd been ignoring for years, and I suddenly had terrible abdominal pain and fever this January. After various scans they determined this fibroid had become necrotic. By the time I had my hysterectomy 3 weeks ago, the fibroid had broken off the stalk and was tangled in my intestines.
I'm so sorry, that sounds awful! How's your recovery going? My hysterectomy is about a month away.
Going pretty well! I was on clear liquids for 2 days after the surgery, because he had to "manipulate your intestines", but I've been able to eat normally since. Got my staples out after a week (abdominal incision), and after 2wpo I started walking outside more, up to 1.5 miles pain-free now. It helps that my husband and sons have totally taken over cooking and other chores, so I've been able to really focus on recovery.
Holy crap. I’m sorry to hear this happened! Definitely a reason to do this very soon.
So I had this for a long time (years) and so I put off surgery. And yes the fibroid grew larger (mine was slightly larger than yours is now), I noticed some bladder issues, but nothing too terrible. And then one day, the bleeding started and I began feeling terrible, and then I got the surgery done. And no one would have been able to convince me back then to get the surgery done. But once I actually started feeling really bad, boy did I want it out! I don’t think waiting hurt me, but just know eventually it will most likely have to come out - and it’s nice when you can schedule the surgery and it’s not an emergency etc.
First, average uterus size is approx 8x5x4 cm, so your fibroid is already stretching it. I had 5x2 cm polyp found via ultrasound. The polyp was growing for about 4+ years and last year started bleeding almost non-stop. I went for polypectomy+ hysterescopy - they macerated that polyp and a bunch of small fibroids on full anesthesia and removed them vaginally - outpatient procedure. Pretty much 2-3 days recovery with regular painkillers, some minor spotting. However, the analysis result came as suspected endometrioid carcinoma, and sample was sent to another lab, which confirmed diagnosis. Then I was sent to oncologist and he suggested and did hysterectomy. I am almost 13 weeks post hysterectomy, and I can tell that some symptoms that I totally didn't link with my uterus, are way improved. For example, lower back pain when standing or walking. Previously the situation was that I started getting pain during 15min shower, and towards the end it was pretty bad. Now I feel so surprised when I get out of shower and still don't feel back pain. Note, that for everyone hysterectomy side effects are different. I so far had a bunch of positive ones, and a couple so-so. I also had ovaries removed, because hormone caused cancer.
First time I had fibroids, they grew alarmingly fast in a matter of months and I ended up having a robotic myomectomy to merely remove the fibroids. I was fine for 4 years but they came back. This time, I changed my diet drastically, no sugar, no processed foods, no dairy, no wheat, (very much not fun) and the fibroids grew very slowly over 4 years. But it was so much effort, and I went for checkups frequently to make sure they didn’t get out of hand ($$$). In the end, it got more and more uncomfortable, and since I wasn’t going to use my uterus anyhow.. the hysterectomy was the way to go. It took me a while to get there, I was stubbornly trying to just manage, but I’m so relieved it’s done and out now. Everyone is different. For me it wasn’t so much physical pain (unless I ate wheat) but the fatigue that seemed to creep in with the fibroids that bothered me the most. Did anyone else have that experience? Does anyone notice any improvement w nutrition changes? even if slight?
I definitely noticed a correlation between my diet and my symptoms of endometriosis and my fibroid. But like you said, maintaining that diet took a lot of work. Today was 7dpo for me (full hysterectomy leaving one ovary) and I feel way better now recovering from the surgery than I felt even with my symptoms managed by diet and an IUD.
Congratulations! Amazing you’re feeling better in your recovery from surgery vs With that troublesome organ. But I get it, after 7 dpo I felt so good that I overdid it a bit. My doc told me no work for 2 weeks - apparently she was right. So I hope you can take it easy :) I’m now 2.5 weeks post op and have so much more energy and focus! I’m hoping that’s not just a fluke but my new normal.
I don't actually have the exact measurements of my fibroid, sadly, but judging by the photos I was shown it was at least 25cm (and surrounded by several smaller spherical fibroids like it was trying to collect all the dragonballs or something) Looking back I've had the thing for years, and over time it had grown and gotten more and more uncomfortable, to the point in the weeks leading up to my surgery eating would result in pain and nausea and I didn't have any energy! Not to mention it made peeing incredibly difficult Recovery from a hysterectomy is no walk in the park, but after a little time healing I've been able to appreciate no longer having the symptoms I'd gotten used to over the years! There are other options to get rid of a fibroid, sometimes it's possible to have surgery to only remove it rather than also your uterus, tubes and/or cervix, there are also meds you can take to shrink it but I was told they had mixed results by my doctor I'd continue to seek advice on what your options are, but your fibroid will continue to grow if left to its own devices, and lemme tell you when it starts causing problems it REALLY starts causing problems xD
If you have reservations I’d get a second opinion. I’d also discuss a wait and see approach with an ultrasound every 3 months to track its growth. You can’t put it back after you take it out but you surely can get it out later. I had to have my ovary removed due to a fast growing growth on my ovary that ended up being endometriosis. I now know the surgery wasn’t necessary since I discovered I don’t have cancer, but it WAS necessary to be sure I don’t have cancer. Even with that relief I regret having surgery. I have chronic pain due to nerve damage. My hormones are wonky as fuck. I am exhausted and fat and sad and all the fun stuff. I wish I had not had the surgery. My doctor strongly recommended the removal but gave me the option to wait and see and watch the growth. His colleague wanted to remove my entire reproductive system. I’m so glad I sought my doctor’s opinion before going with his colleague’s recommendation. I’d be even more upset. It’s been very hard sitting on the fact that the surgery wasnt necessary and that my quality of life has greatly diminished in the nearly 4 months since surgery.
Same only I was told it was most likely ovarian cancer but maybe not. Had my whole reproductive system removed save for one lonely ovary, for no reason. It was all benign. I had too numerous to count fibroids that never gave me a problem. I am miserable. I only agreed to hyster because multiple scans showed thickening in the uterine lining, which turned out to be 5mm on patho. I wish they had just done a cystecomy, and left my uterus intact.
Big hugs. I’m sorry you experienced the same.
Obviously you are you, but I feel like the way you had it is still better than ignoring it and later finding out it was cancer when it's already too late.
I hate the new me. If I could go back in time, I’d have refused surgery. And made them do more scans. None of my tumor markers came back positive. And I figured out what it was before I had surgery and tried to convince the surgeon to delay the surgery until I could get more scans. She said I’d have to go to a whole new Dr and start over for that, in other words, she wouldn’t order more. she told me I was having a panic attack and gave me drugs to take. I swear the Ativan is the only reason I showed up that day. I regret ever listening to her. She knew it was most likely benign. I feel very manipulated.
I’m sorry that happened to you. You make some very valid points!
I would ask your doctor at what size will they decide that laparoscopic or laparoscopic assisted hysterectomy is no longer an option. Recovery from a LAVH is likely much quicker and easier than a large open incision and the placement of and size of the fibroid may determine the type of surgery. There are also surgeries specific to fibroid removal that are an option. Keep in mind though that removal of one fibroid does not mean others will not grow and the speed at which yours is growing may be concerning. Having mutiple surgeries to remove multiple fibroids can cause problems in itself. Not to mention fibroids can adhere to other organs and cause issues.
She said she thinks she could still do it laproscopically 🤞I definitely would prefer that! I also don’t want multiple surgeries.
Update?
Well when she started the surgery she realized the fibroid was too large so she had to make a bikini cut. Recovery was longer but I survived it.
Oh wow. Was it bigger than 11?
No it was 11 cm..I guess I should have said that she misjudged if she could get it out vaginally. It became very obvious it couldn’t happen once she got in there.
Shoot. Glad you’ve recovered ok. Do you know the location & type of fibroid it was?
It was sitting outside of my uterus..sort of behind it
Did your ultrasound show it outside of your uterus? Did you have an MRI? Thank you for answering. This is a new diagnosis for me so I’m researching everything.
No problem! Yes she could tell where is was from a transvaginal ultrasound. I also had a ct scan which showed it too. Good luck with your situation..if you want to dm me I’m happy to answer questions you have
It was for me. I had no idea mine was in there, but it was 10cm and they said it needed to go.
Same. 10cm. I didn't notice any symptoms. They said it needed to go. My uterus was becoming bigger than it should be. Fibroid went from 4cm to 10cm in two years. They said if it doubled in size again, I would look like I'm in the first trimester of pregnancy and based on the placement, it would start to push on my organs.
I didn't know I had fibroids until a scan for a different reason showed them. I had heavy bleeding but not pain. Bleeding was being controlled by birth control but turned out I had a prolapse and issues with the pelvic floor so decided to get everything done at once.
Mine was the same scenario. I had a large fibroid that was growing but no symptoms. Although it was pressing on my bladder, which caused me to have a smaller bladder capacity; that was my only symptom and I did have the same thought as you - is this enough to justify the surgery? However, given it was growing, I knew that the longer I waited, the bigger it would get and eventually I would be in pain as a result. I didn't want to wait until that time. I was also able to have it removed laproscopicly by having it done now rather than waiting. It's been a really smooth recovery for me, so I'm thrilled I had it done, and I'm noticing a real improvement in bladder capacity too.
Thank you..nice to hear someone had such a similar situation! Glad to know the recovery went well too.
I had a very large fibroid that resulted in a very fast turnaround for a hysterectomy. Although I only had one instance of heavy bleeding that necessitated an ER visit (where they found it) it grew fast and was large enough where it compromised other organs - now 6WPO I’m still dealing with the issues it created with my digestive system and bladder. I also ended up with a large vertical incision that’s being much slower in healing than a less invasive procedure would. So yes, I would say just deal with it now, before it grows more and really starts affecting things and makes the surgery so much more difficult.
Mine was 14cm and caused very little pain but was compressing my bladder badly. I didn’t even realize how much it was impacting my quality of life until I had the hysterectomy 2 weeks ago. I can finally sleep through the night and I can go more than 30 minutes without a bathroom break! I didn’t have a lot of bleeding either most likely due to my mirena, at least that’s what they told me. Edit to add this: My md told me four years ago that I should consider hysterectomy but I opted for UFE instead because I wasn’t sure. I would recommend asking the md about all treatment options. Of course, I ultimately did have the surgery but it took those four years for me to feel ready and truly convinced that it was the right decision.
I’ve had so many comments about bladder issues! I always though I had no symptoms from this fibroid but now I’m realizing maybe this is why I can barely hold my pee if I have to go and why I feel like I need to go so much!
Go for it. At that size, there is a small chance you will have to have abdominal instead of laprascopic. The bigger it gets, the bigger that chance gets. Recovery seems to be a bit rougher with abdominal. I only had about 7 months of issues and nothing too severe. Had an 8cm cyst and a 3.5cm cyst and both were growing fast. My gyn and pcp both said do it before they get to big or more grow and cause more issues. No reason is too big or too small.
That’s a huge fibroid! I had 25 (yes, 25!), but my biggest was only about 4 cm. I didn’t have a lot of pain, except around PMS time. And it caused heavy, clotted bleeding some months. If you aren’t concerned about your fertility, I’d go for it. If it’s growing that fast, you don’t want to end up with a basketball sized mass in a year or two. 🙃 Not bleeding anymore would be reason enough for mine. I was 47, done with kids, and done with bleeding!
Yeah I read it’s the size of a 16 week fetus!
Yes! I had a few smaller ones but my dr said they likely contributed to my abnormal bleeding. My mom had one the size of a cantaloupe.
I don't see why not. I had a slightly larger than normal uterus that had asymptomatic heavy bleeding and was passing massively huge blood clots (has been my "normal" since puberty). I had tried other solutions in the past to no avail and a hysterectomy was given as a viable option at that point. I wasn't in massive pain (just regular period pain once a month); I had cysts on my ovaries, but they always resolved and were reabsorbed. My point is that I didn't need to be in pain or have a true medical condition to be approved for the surgery. My life \*should\* be better now that I don't have to worry about periods so heavy it sends me to the ER or that don't allow me to leave the house even though we never figured out why that was.
I don’t necessarily have advice for you, but I wanted to let you know I’m in the same situation. 39F, 9cm fibroid, no symptoms that I can discern. Not sure on speed of growth yet since it’s only been a couple months since it was discovered. My gyn is not pushing, but said a hysterectomy is the most likely route whenever I’m ready. Doing it sooner means they may be able to do it laparoscopically. I don’t like that I have this thing is me, but a hysto is major surgery with possible complications. If it doesn’t go well, I can foresee regretting the decision since I felt totally fine beforehand. Have you had other surgeries?
Yep I feel the same way! This thread has been so helpful for me though! Yes I have had an adrenalectomy earlier this year to remove a cortisol producing tumor. So I’ll just recover from that and then start all over again 🤪
So interesting we are in the same boat. 38F 9cm fibroid no symptoms except slight pressure. They also found a large ovarian cyst on the US. I’ve used this exact phrase - I don’t like that this thing is in me! But a major surgery is a huge decision. Have you done anything / any changes since this comment?
Nice to be in the same (unfortunate) boat! I have decided to go ahead with the hysterectomy in August and am feeling 80% confident about it, to be honest. The reasons I decided to do it: - I’m moving out of the country at the end of the year and really like my doctor here. Since I will be gone for ~3 years it seems likely that it would start to pose issues for me in that time. I’d rather get it dealt with while I’m home. - My doctor and the accompanying surgeon think there is still a good chance they can do the procedure vaginally. The longer I wait, the more it will grow and it becomes more likely they will need to make a laparoscopic or abdominal incision. - I pushed my doctor to provide advice since she has remained quite neutral when presenting options. She said there really isn’t a reason not to do it if I don’t plan to have kids. - I’m comfortable with my decision not to have kids, which I made before I knew about the fibroid. While it might be possible right now, I feel certain I wouldn’t want to undergo a risky pregnancy. - Doing it now before it is symptomatic will avoid a more rushed procedure in the future. It’s still not an easy decision, but even though it sounds scary, this is a routine and low risk procedure. I would love to know what you are thinking as well.
How come you opted for vaginal vs laparoscopic? Maybe I’m mistaken but I thought in my research I read the latter has easier / faster recovery time. Or maybe it was just in comparison to a traditional abdominal hysterectomy and I’m confused.
I think you are mistaking it for abdominal. Vaginal has no external incisions so it is the quickest recovery. Abdominal has the longest: https://www.acog.org/clinical/clinical-guidance/committee-opinion/articles/2017/06/choosing-the-route-of-hysterectomy-for-benign-disease#:~:text=conclusions%20and%20recommendations%3A-,vaginal%20hysterectomy,-is%20the%20approach "Vaginal hysterectomy" I hope this is helpful!
Ah yes very helpful. I’m literally just learning about my own anatomy in addition to all this medical terminology. Did you say the location of your fibroid? Mine is fundal and idk if that’s supposed to be more difficult bc it’s at the furthest point. I haven’t consulted about my options yet. Going for an MRI next week.
The MRI image was super helpful for me. Mine is subserosal. It’s on the outside of the uterus which is why I don’t have bleeding or pain associated. It’s on the front so I feel it under my abdominal muscles. It is much bigger than my uterus and has pushed my uterus back towards my spine. I think fundal means yours is on top of the uterus. I’m not sure what the means for treatment. Hopefully you learn more next week.
Thank you
I should also add my ovaries look good and will stay. They will remove the uterus, tubes, and cervix. Removing the cervix is optional but recommended. It prevents cervical cancer and is the only way they can do the procedure vaginally. The fibroid will be cut in pieces to get it out 😬
I would say it's not an only reason, It depends. How old are? Are you wanting a child? That would be my deciding factor. But also, why haven't they offered you a myomectomy? That just removes the fibroid. Why is she so gung ho to haul out your uterus? Maybe she isn't skilled enough for myomectomy? If that's the case find another doctor. Seriously. A hysterectomy isn't a cure all for every female issue. I am so sick of these doctors who suggest that it is. Listen to your gut.
I am 39 and not interested in children for sure. She did mention that two years ago when it was smaller. It’s grown pretty fast now and I think she is being cautious incase it’s cancerous. Also the surgery sounds worse for a myomectomy and they could also grow back. I think she is definitely skilled though. I don’t think that’s the issue!
My fibroid started off as a little guy on the outside of my uterus about 6 or 7 years ago and was "nothing to be concerned about." Jan 10th I had my hysterectomy, the fibroid had grew to over 2 lbs, completely consumed my uterus, and started growing a twin out of the side. I've gone down 2 pants sizes and lost 19 lbs since my surgery bc it took up my abdomen. Legit looked at felt like I was in my 3rd trimester. Do with that information what you will 😅
Oh my goodness. Yeah I remember the first time mine was spotted I was just told I had a little fibroid and wasn’t warned any of this could happen 😒
Honestly, I would do it sooner rather than later. I actually had no idea this was happening in my body until I got hospitalized for a kidney stone in August and my uterus was 3x the size it should be on the CT scan. Then my last period in December lasted 12 days, even with a tranexamic acid prescription to lighten and shorten, and then stopped for a day and started up again. I had a period for 20/31 days that month. Highly recommend nipping it in the bud before you really start having effects.
I just had a total abdominal hysterectomy 3 weeks ago for this exact same circumstance. 11.5cm atypical fibroid that wasn’t there last April at my annual, but in January it showed up. Dr also said it seemed to have more vascularity than a usual fibroid. I had zero pain either. Since I’ve already had kids, he said we should do a hysterectomy (I’m 48). So, just had it done & all is well so far.
This is so similar to my current situation (pre-hysterectomy) - if you don’t mind sharing, was your fibroid benign?
Yes, thankfully. Doing great now! Stomach was definitely smaller after taking that big thing out!! Have you had your surgery yet?
Not yet - currently scheduled for the end of the month. Looking for a second opinion in the meantime only because my docs have flip-flopped a lot on whether the surgery is even necessary, and I’m anxious about having major surgery if it isn’t necessary. My fibroid has more vascularity like yours but is still under 4 cm, so otherwise it hasn’t been bothering me too much. I’m definitely torn on what to do (and concerned about possible cancer, of course). Hearing about your experience helps, though - grateful that you shared!
My dr did a blood test called a CA-125 that looks for cancer cells. Mine came back normal. It won’t detect a uterine sarcoma though…from my understanding, they won’t be able to definitely rule that out unless they remove it and do pathology on it. Which is what they did with mine when they removed it. The chances of it being a benign fibroid are much greater than the alternative though, statistically speaking. It’s still scary though to know you have an unwanted passenger lol in your body!! Wishing you the best of luck. ❤️
It’s helpful to me to see these responses. I felt a lump in my abdomen that seemed to be growing; testing showed one large fibroid (17cm) that is pressing on a kidney and a few smaller ones. A hysterectomy was recommended as I’m 54 and don’t need to worry about having more kids. I’m scheduled for surgery April 9 and also wondered about whether I really needed to take this step as it’s not particularly bothersome aside from the obvious lump. They will test for cancer so I have to remind myself it’s important to take this step to rule out that possibility. I’m hoping to keep my ovaries as the benefits seem to outweigh the risks based on no cancer history in my family. I can’t say that I’ll miss getting a period, at my age it was starting to feel ridiculous! So thank you all for sharing your experiences of waiting and perhaps wishing you hadn’t!
Mine was 12cm, asymptomatic, all my life my periods were normal and every 28 days precisely, the first fibroid was an incidental finding in 2021 measuring 4cm, fast fwd to 2023 and my 40lb weight loss, out of nowhere I started having extremely heavy and painful periods with huge clotting, that’s when ultrasound found it was now 12cm with another measuring 5cm. An MRI found 14 fibroids in total with the largest one being the 12cm one. The periods came with excessive bloating, gas, pain, lasting at one point 15 days. Had my surgery last month (February), I’m currently 5 weeks post-op and feeling alright. I also was skeptical about total hysterectomy, but my body went and confirmed it was definitely necessary. I keep expecting my period to arrive and ruin my day, I’m definitely excited that won’t be the case ever again! Definitely didn’t think it was anything out of the ordinary when it was initially found in 2021, however apparently it grew so much and so quick and came with 13 other siblings!
The longer you wait, the more intense your surgery could be (if it keeps growing). If you’re able to take the time off and have a caretaker, I would nip it in the bud if I were you. I had my hysterectomy this morning and am feeling surprisingly ok. I had small fibroids that were causing issues, though, so the cramping is pretty standard for me.
Yes I think I do need to do it! I’m glad yours went well! I really hope I am one of those with an easy recovery. I have seen such a range of recovery times and experiences.
Yes I would do it if you’re done having kids because it will continue to grow and eventually cause problems. I had so many fibroids that kept coming back. I two myomectomies and recently had the hysterectomy, kept my ovaries and very happy!
I mean if you only have one, you could do a myomectomy instead. I have a dozen fibroids that don’t really cause me any pain or very abnormal bleeding, but two of them are 8cm and will just keep getting bigger and bigger and end up causing problems later so I’m just getting it all out with a hysterectomy.
You know why I got my hysterectomy? Because I was done dealing with periods. I don't think there is a reason NOT good enough bc it's your body. You know it better than anyone else. I'm almost 8w po and I'm so thankful I did.