46 yr old - large fibroids - doctor pushing hysterectomy but I'm terrified

Fibroids discovered in 2007 after complaints of pelvic pressure. Multiple with the largest around 5-6cm, and they've not changed a lot over the years. I've had 3 D&C's since then because of my uterine lining appearing thickened in the ultrasounds. The first resulted in an endometrial hyperplasia diagnosis; the other two have just come back as benign polyps. My last ultrasound did show additional fibroids (scary to me...what if they're cancer), but doctor thinks it may just be because of updated equipment picking up more than the older ones did.

I've had lengthy periods but I wouldn't say they're horribly heavy though they've become moreso as I've entered my mid-40's. I have pain with sex sometimes in certain positions, I have constipation issues that I just assumed were related to not enough fluid, and I have an almost constant lower back ache (but have poor posture). So I've really ignored these symptoms because they're not so unbearable I can't live with them and I'm really scared of surgery.

Fast forward to now. Two weeks ago I started having issues with feeling like I have to urinate very frequently. Granted, I've had a couple minor issues like this in the past but they've resolved. This was sudden, and it's staying with me. Going every 2 hours has been normal for me, but going every 30 minutes and just dribbling is not. It's better at night which even more makes me think something big is pressing on my bladder. Doctors have ruled out UTI's. I'm terrified the ultrasounds (last one was in September) have missed ovarian cancer or that one of my fibroids is really cancer and that things are growing rapidly and causing all this.

Saw my gyn yesterday. He did a pelvic and said, "Well, your uterus is definitely no smaller and may in fact be larger than in the fall." He feels I should just throw in the towel at this point and get it out. I'm scheduled for another TVU tomorrow (provided I don't start my period which I think is going to happen) to look at the size of everything and then need to make a decision. And I'm really concerned that if my uterus has grown noticably since September that something could be really wrong. Can fibroids all of a sudden grow that fast and still not be cancer??

I'm already at the point size-wise where he's doubtful he can do anything other than an abdominal incision and because I'm also very thin, he says a bikini cut is questionable. His plans would be to make a small cut in my navel to look laproscopically at everything and then decide from there how he would do things. I also know he'd rather take my ovaries and I really feel I should keep them if they're healthy, because I have heart arrhythmias and if I develop heart disease, I will be a greater risk of dying.

But I'm so afraid of dying during the surgery, or getting a blood clot, or developing a fistula, or having worse incontinence (already dribble if I sneeze or cough hard). And I'm raising my 2-year-old grandson so am very fearful of how a recovery will work with him around. Praying for stronger faith....

Thoughts? Similar experiences from any of you as far as symptoms with fibroids and what did you do?

	Quote:
Originally Posted by tjc1965 I'm already at the point size-wise where he's doubtful he can do anything other than an abdominal incision and because I'm also very thin, he says a bikini cut is questionable. His plans would be to make a small cut in my navel to look laproscopically at everything and then decide from there how he would do things. I also know he'd rather take my ovaries and I really feel I should keep them if they're healthy, because I have heart arrhythmias and if I develop heart disease, I will be a greater risk of dying.

Dear tjc:

Have you had a 2nd or 3rd medical opinion? My 2nd opinion doc had much more cutting & pasting in mind than the 3rd opinion doc. Also, if your ovaries are healthy & you have no family history of ovarian cancer, they can continue to dribble out good hormones even after menopause.

I hope you are able to find the right answers soon. I am sending huge cyberhugs

I had fibroids...twice. The first time was right after we got married, almost 27 years ago. My gyn did a myomectomy to remove the fibroids since we were just about ready to begin to try to have children (this was successful and some what of a miracle). In my 40s I started having trouble again. My periods were a bit heavy, lots of cramping, and I became anemic. Ultrasound showed the fibroids were back and getting bigger. By then I was in my late 40s with only menopause to look forward to, but you never know when that will actually happen. So my doctor and I decided enough was enough. This was in January of 2007. Because I was so anemic he didn't want to operate right away, and I did not want to have surgery in the middle of the school year (I am a teacher). So he gave me a shot of lupron to stop my periods in hopes of increasing my blood counts to a reasonable level. Had the surgery (laproscopic supracervical hysterectomy). Piece of cake surgery with a very short recovery time. I have no regrets. I also had incontinence prior to surgery which I wasn't really aware of. About a year later I did have bladder sling surgery to fix that problem. No problems with either since...although I don't know that I would recommend mesh at this time. Hope this helps! If you have more specific questions...ask!
Kim
LSH 6/2007

Wow, tjc, you sound a lot like what I was going thru! I never had the fibroids, but I dealt with the hyperplasia for about a year, until I found a doctor who worked with me to try to get me healthier. I had a depo shot to help with the hyperplasia, but it took close to 4 months to get that more manageable. I was bleeding quite heavily all that time, too. I could do little more than run to the store to buy more super duper pads. I know this sounds gross, but are you bleeding heavily, with large clots? Make sure your doctor is aware of that, if you are. Turns out there's a fine line between bleeding heavily and hemorrhaging. I also would recommend you get at least 1 more opinion.

I just had my hysterectomy after about 4 years of "putting the band-aid" on my problems. My doctor and I knew it was inevitable, but we were trying to get me further along before the surgery. After my depo shot "therapy" a few years ago, the dr put me on the strongest bc pills on the market. It was nice not having any periods in that time (I had to be on them continuously, because I was getting menstrual migraines on my off-weeks.) Anyway, he tried to lower the strength of my pills, but my body was having none of it! I just decided a few months ago to have the surgery, and its been a blessing so far, however, I have to disagree when people say its an easy surgery. Key word being "surgery". You still have to recover for at least a month before you can feel well enough to start doing things you did previously without thinking about how it affects your body. (lifting, vacuuming, laundry)

I'm glad I did it, though, now that most of my pain is gone. Oh, and let's not forget the fact that I don't have the fear of bleeding anymore!

Good luck to you!

Screenerbabe, the one thing I don't have is massively heavy bleeding. That's why I've drug my feet. I do have some periods that are heavier than others, and a few times where I'll pass some smaller clots, but most of the time I think they're fairly normal in flow. I just spot for about 4-5 days after the bleeding ends, so they last in total up to 10 days.

Sounds alot like me... except I am 38. Yesterday was my first of three the lupron shots. One of my fibroids is the size as if I was 5 months pregnant. I am a little freaked out but have a good support team. Thank goodness!

tjc1965,

Second opinions are a must. I had a doctor pushing for hyster and found another willing to work with me, provide education and options. Still, after a couple of years it became pretty obvious that menopause wasn't coming fast enough to solve the problems and because my fibroid galaxy was increasingly becoming larger, menopause wouldn't shrink them enough to matter.

Fibroids were the cause of pelvic pain, back and leg joint pain and bladder pressure with stress incontinence in addition to irregular and extremely heavy bleeding. The longer I waited, the worse all these things became.

Fibroids are non-cancerous tumors and they do what they want to do. They can grow fast or slow and where you have one, you most likely have more that go undetected. It's very common to have problematic fibroids removed and have others grow to take their place. It happened to me. I had a myomectomy 10 years ago and the results lasted quite a while, but more fibroids moved in to take their place.

An excellent fibroid site is the National Uterine Fibroids Foundation

For me it came down to quality of life issues. I essentially became a prisoner to the bathroom during my periods, avoiding any activity that would exacerbate the problem and where a bathroom wasn't readily available. Carrying around a backpack full of pads wasn't really convenient either. Because my periods were so irregular and activity could bring them on, this meant I didn't do much of anything. On top of that, the anemia that came with all that bleeding was also disabling. Oh, and having to go to the bathroom every 2 hours didn't help either.

Post-op pathology reveled I also had adenomyosis, which can also cause the same problems the fibroids did. "Adenomyosis (ad-uh-no-my-O-sis) is a condition in which endometrial tissue, which normally lines the uterus, is present within and grows into the muscular walls of the uterus. This is most likely to happen late in your childbearing years and after you've had children." Mayo Clinic

My hyster went very well and recovery was textbook perfect. That said, it wasn't a cake walk, either. Dealing with a 2-year-old could be a challenge, but it's doable. If you have family or friends that could help with him it would help a lot.

Whatever you decide, know that you have support here.

Cheers!

How do you go about securing a second opinion? I've gone to this same gyn group since my 2nd child was born 22 years ago and have seen several of the doctors over the years though have been seeing the same one now since 2007. Timing is also an issue for me. I may have a window for surgery in later Feb/March but then things are going to ramp up at work and I also have my step-daughter's wedding in mid-July and would like to be able to be there and participate and not be all bloated from recent surgery. Yes, the 2-year-old is a huge part of the scenario. We are the grandparents, so our parents are his great-grandparents and are too old to really watch him for any length of time. He's very active (understatement) and may be showing some early signs of ADHD or behavior issues related to fetal alcohol exposure, so he's not an easy child to manage on those days when he's just bouncing off the walls and swinging from all the furniture. I'm not sure how I'll manage even things like his daily need to climb up on my lap and sit each morning for 1/2 hour and watch movies before he goes off to daycare, or how long it'd be before I could do the twisting/turning/lifting necessary to get him loaded into his car seat each morning.

But I also don't want to just keep ignoring things and have them get bigger and bigger because the surgery just becomes more difficult. I asked my gyn earlier about just removing the fibroids and not the whole uterus but he said it's not an option for me because I have so many of them that by the time all the significant ones were removed, there wouldn't be a viable uterus left. Also asked about leaving my cervix if he did a hysterectomy - again not an option because of my endometrial hyperplasia diagnosis back in 2007 - since the cervix is an extension of the uterus and so could still be affected with hyperplasia which could progress to endometrial cancer at some future point. (I also had precancerous cells on my cervix in the 90's that were lasered, so one more reason not to hang on to it if the rest goes.) Not a lot of really great options.

I really wish I only had to go to the bathroom once every 2 hours. Since whatever it is flared up a few weeks ago, I can go every 45 minutes or less, especially if I actually drink something.

And the more I think about what I was told on Tuesday about how my uterus is tipped back (knew that for years) and how that's causing the biggest fibroid which is on the back to pretty much fill my lower back region, I'm really wondering if this is why I have to strain so hard to have a BM or why I suffer from frequent constipation. I'm even having to strain some to urinate at this point, which is getting scary.

Anyway, ultrasound (hopefully) in another 1/2 hour and hopefully my gyn will review it and get back to me by later today or tomorrow. Will know more then.

I guess I'm blessed with an amazing doctor who actually did my last few TVU's himself, so I had my results immediately. I know most women don't have that convenience.

Getting a 2nd opinion is a very good idea, especially if your insurance requires you to have one before they cover your surgery. I understand your situation, and that you're probably really scared, but you need to take care of yourself in order to care for your grandson. Hopefully you can find a friend, family member, church member, SOMEONE to care for this little guy while you get your health in order. Trust me, you'll feel so much better after you do this! A week or two afterward, you'll wonder why you didn't do it sooner. You'll feel so much better physically (yes, even with a complete hyst) not to mention how relieved you'll be emotionally, when you don't have all the medical issues you have now. Then think of all the fun you can have with your little guy, not to mention giving him the care and attention he needs. One other thing though, give yourself time to heal. You just have to tell your family you need to do this, its imperative to your health and well being! God bless you, and please keep us posted, ok? I don't know where you live, but if you lived near me, I would help you with some major babysitting so you can get the care you need.

P.S. Try some stool softeners, they'll help with the constipation.

Hi,

you seem to be in a similar position to myself with growing fibroids of similar number and size and increasing side issues that you are tolerating and coping with along the way. I think reading a lot of these posts may alay your fears of cancer as fibroids seem mostly benign and can certainly grow in fast spurts.

I'm still at the making my mind up stage but I think with your family responsibilities you must take a long term view and find ways to cope with the short term recovery rather than getting more and more troubled by fibroids and delaying things through fear.