Lots of fibroid but few symptoms - should I have surgery?
Posted , 9 users are following.
Hi all. I'm at a crossroads trying to decide whether to have my fibroids removed or not.
A little background: I'm 38 years old, African-American, no children but don't want to rule it out. I first learned I had fibroids almost two years ago when a random episode of very heavy bleeding after my normal period prompted a visit to my GYN. The ultrasound identified about 5 or 6 fibroids, the largest around 6 cm. I had no pain or any other symptoms other than the newly-irregular bleeding, for which my GYN prescribed birth control pills to regulate and they have.
I've since had several followup ultrasounds and, when my fibroids eventually grew so large that the sonographer couldn't even get a good view anymore on the transvaginal, a pelvic MRI. The MRI showed that I had at least five 3-4 cm fibroids, a 6 cm fibroid in the fundus, a 9 cm one in the posterior side of the uterus, and potentially another half dozen little bitty ones. My uterus is enlarged to about 16-week size, pretty much taking up my entire abdomen. All of the specialists I've seen agree that I almost certainly won't be able to get pregnant with the size and location of my fibroids. I don't have any baby plans on the horizon (again, don't want to rule it out but nothing planned now), so I'm torn on whether or not I should have my fibroids removed anyway.
I consulted two specialists who perform the robotic myomectomy (conventional laparoscopic is off the table due to my fibroid size and number). They both said I might be a candidate for the robotic procedure, but because I have so many tumors that they can see on the scan there's a good chance that there may be even more that they can't see - in which case the open surgery might be the better option since they could feel for the additional ones by hand where the robotic tools would miss them.
I've never had real surgery in my life, and like many people the thought of going under the knife - especially for such an invasive procedure - terrifies me. If it were truly necessary, really a clear-cut matter, I would accept that that's the way it is. But my situation isn't clear-cut about whether it's really necessary or not, and that's where I'm stuck. It's not about whether I need to have a myomectomy - the doctors are all pretty unanimous that I don't necessarily need to do it - but whether I ought to do it. Whether it's in my best interests to remove these stupid things from my body, even if they're not doing anything to me at the moment. My regular GYN has been pretty clear from the start that I ought to consider having surgery. The last robotic surgery specialist I went to ultimately said that, while it may not be a necessity, he feels I would be better off to have them removed - and that I should consider it in the next few months rather than in a couple of years, in case they keep getting bigger. (Right now, if I opt for the open surgery, they can still do the bikini-cut incision, but if my uterus gets much bigger they might have to do the more painful vertical incision. Yikes.)
Sorry for the super long story. I guess I'm just looking for some personal experience advice. Has anyone here had a fibroid situation like mine - large and/or numerous fibroids but minimal symptoms? Has anyone had a myomectomy despite not having terrible fibroid symptoms? How do you weigh the pros and cons, the risks and benefits of having surgery to correct a problem that's not really bothering you but you know you're probably better off being free from anyway? It's weird, sometimes I wish they were bothering me more or that I did have definitive plans to try to have a baby soon - it would make the decision a lot easier if I were fixing something that was actively bothering me or interfering in my life. But it's not an easy decision and I don't know what to do. I'm scared of putting myself through the trauma of a major surgery and painful recovery for no good reason. I'm scared of possibly having complications that might leave me worse off than I was before when I might not have needed to do anything in the first place. I know I'm probably overthinking all of this, but maybe some friendly advice or reassurances might calm me down and help me see things more clearly. 😃
1 like, 11 replies
kimjon lara80927
Posted
As far as the size of your tumors, I have one 15 cm tumor that has been shrinking for several months. To note: they said my uterus was a size of a five month pregnancy. This tumor started growing when I hit perimenopause 7+ years after I had first been diagnosed! Unfortunately, by the time I got to the GYN, it was too late and they were talking about cutting me vertically! In your case, at the very least I would be monitoring the tumor as often as my insurance will pay for testing.
Yes, you might get surgery and it might not be necessary but you won’t know untill it’s too late. In your position I would watch and see if it’s growing, if it starts growing even a tiny bit I would seriously consider surgery. If you look through this website, look under the type of procedures you want to get, you will see the women saying how they feel about waiting and the different procedures they had.
In the meantime I would not let up on getting copies of your records as to the size of your tumors and making sure that they’re not any bigger than they were the last time you checked.
I had no symptoms for the first roughly 7 years that I had my tumor and then they grow so fast in a year or two that my only option was surgery or uterine fibroid embolization ( block the blood vessels to the tumor)I did get UFE, but the first doctor botched it I had to get it again, so it can get very complicated no matter what you do.
I wanted a myomectomy but my sugar was too high for the doctors so I could only get UFE.
Now I’m getting ready to go for surgery which I’m not looking forward to but at least it’s an option.
I really wish the doctors would have told me that I need to monitor this at least once a year to make sure that it’s not growing and getting out of control.
I hope this helps.
Kimjon
sandra51977 lara80927
Posted
hi Lara,
Please do consider surgery sooner rather than later as I had the same attitudes years ago and left things to get even more problematic. am in my mid30s and have no children yet. i have just had an open myomectomy which is what will likely be your best option to preserve fertility.
it is not an easy decision but I am glad I have had it. the fibroids do start putting pressure on your other organs around it if left to keep growing...
find an excellent well-experienced and reputable surgeon who has done the open laparatomy many many times before.
thanks
betty64519 lara80927
Edited
Hi, I think you should have the surgery even if you are scared... I have a big one, 10 cm (it wasn´t that size years ago), and now I need to consider if I want a myomectomy or hysterectomy... The fibroid is causing me more troubles every day, now I have incontinence because it´s pressuring the bladder... I wait 7 or 8 years and I think I should do it before, when I was younger and more energetic and didn´t have all the responsabilities that I´ve got now... so it´s better if you make your plans now
harj26435 lara80927
Posted
Hi Lara
I am now 52. I have two children. My advice would be to get surgery. I was diagnosed with fibroids in my early 30s. I was told to wait and see. I had 3 small fibroids to begin with. During this time I had migraines, very heavy periods and fatigue. Waiting just made them grow real BIG. The larger they grow, the more limited your options are. Over time, and with the onset of menopause, my symptoms' have decreased, but the fibroids have not really changed size. I now just look 4 months pregnant which I can live with. Ultimately it is of course your choice, but I wish I had not listened to medical advice and been more pro-active as I wasted so many years being unwell and not fully participating in my life.
Good luck, keep researching to find out what is best for you, push for the right surgery for you.
lara80927
Posted
Hi all.
Thank you everyone for your advice. I wanted to give you all an update that I had decided to go forward with the open myomectomy. My surgery is next week. I'm nervous, of course, but I think I am doing the best thing for my life and my future. I have a good, experienced surgeon and I'm going to a top-notch hospital and I trust that I will be in good hands.
joshuapryce1987 lara80927
Posted
I believe you should have the surgery if it will benefit you in the long run. Fibroid's in the system get worse over time. Its like cancer its more treatable and curable when its dealt with quickly. You said you have many, but no symptoms. This is subject to change, sometimes things get worse over time health wise. Have the surgery.
lara80927
Edited
Hi all. I have had my open myomectomy surgery. I stayed in the hospital for two nights and came home in the afternoon on the third day. I am now on Day 5 (four full days since surgery) and I think I'm doing really well so far. I was given a local anesthetic during surgery to numb the area for a few days so by the time it wears off (which should be today) I have already gotten over what is normally the most painful part and am already healing, so going forward won't be so bad as otherwise. So far I think it's working. I have been on nothing but round-the-clock Tylenol and Ibuprofen for pain and I would say my pain level has so far not been higher than a 2. In the hospital I had zero pain at all, just discomfort from gas and bloating. 😃
The surgeon removed 13 fibroids in all, ranging from just over a centimeter to more than 8 cm, and he said it was a good decision to go with the open route rather than robotic in my case as the robotic surgery would have taken many more hours and for all that they may not have even gotten them all. He used the normal bikini-line incision, and I had some of my own blood given back to me during surgery but no donor transfusion. I'm taking my pain meds and getting up to walk around every couple of hours as instructed, and it's been going well. I keep waiting for the other shoe to drop, to be honest, but hopefully it will all be okay.
I'll be back to provide more updates as my recovery progresses.
cheks73000 lara80927
Edited
Hello, I had my Open Myomectomy about two weeks ago. Recovery has been going smooth. I had 5 fibroids removed, the biggest was 15cm. I am glad i did the procedure and glad everything went well.
The only thing i noticed now is i have very frequent urination, every two hours, I have the urge to urinate. Please did anyone who has done this procedure have similar issue. I am a bit worried.
lara80927 cheks73000
Edited
Are you still having frequent urination? It's possibly due to the pressure and bloating in your abdominal area after the surgery, but definitely bring it up to your doctor if it still persists. I haven't had this issue after my surgery.
More updates about my experience: I am now five weeks out and I'm feeling great so far. Recovery was mainly uneventful and the only real discomfort issues I experienced were related to gas pains. There were some nights in the first two weeks where it was just unbearable, but not necessarily in a horrible pain sort of way but just really, really uncomfortable. But that more or less passed after the second week, and my main issue for the next couple of weeks was just feeling tired and low energy. Some days were better than others. I felt noticeably better not necessarily day by day but more like week to week. One day to the next it often felt like I felt exactly the same or only marginally better, and there were a few days where I felt worse or more tired than the day before. Recovery, I discovered, is not a linear process.
But now at five weeks post op I definitely do feel much better. I had my post op followup last week and everything is going well, cleared to resume basic activities and gradually increase my lifting weight limit. I'm definitely not 100%, probably like 75% recovered. I don't think my energy is back to pre-surgery normal just yet but definitely close to it; my abdomen is still sore, especially near the corners of my incision, and I still have some tightness when I stand up straight or walk though it's much better than the beginning. Additionally, my abdomen is still kind of balloony although I think that has gradually, very slowly, improved over these few weeks. In the first week my big granny panties that I bought for the recovery period were actually very tight fitting, I was so swollen, but the swelling has gone down considerably enough that my underwear is back to fitting loose and roomy again even with my stomach still a little bloaty. But still no jeans for me yet!
hfs lara80927
Posted
thank you so much for sharing. i am also considering whether or not to have surgery. my biggest fibroid is 9cm. i havd mixture of subserosal and intramural fibroids. I look pregnant with 20cm uterus because of the fibroids.
Anteverted uterus measures 20 cm in maximum size. The enlargement is due to the presence of innumerable intramural and subserosal fibroids. The largest is a subserosal fibroid at the dorsal base of the uterus measuring 9.2 cm. A fundal fibroid is seen at the right side of the uterus measuring 8.4 cm. Innumerable other smaller intramural and subserosal fibroids are demonstrated (at least 10). No convincing pedunculated fibroids are seen. The endometrium lies distorted within the fibroids and measures 0.7 cm in maximum thickness. The junctional zone remains preserved. The internal os is normal although it is constraint by the fibroids. The normal cervical anatomy recognised. The bladder remains compressed by the fibroid uterus. Both adnexa are suspected laterally displaced - seen by the presence of follicles. A small amount of free fluid is noted within the pouch of Douglas. No pelvic sidewall nodes are seen of significance. No restricted diffusion is seen. Neither ureters are distended within the pelvis.
main issues are the pressure on my bladder, constipation.
I want to try natural remedies but worry that 9cm fibroid is too big. but on the other hand worry about any complications following surgery as I am single with no one to pay my bills if I am ill.
mj89698 lara80927
Posted
Lara thanks so much for sharing your experience. I'm in a similar boat in terms of weighing up whether or not to have a myomectomy for multiple fibroids, and have found this thread so helpful. I hope you've made a full recovery now. x