22 weeks sounds so big! (2005)

I am a new member and I have found this website so helpful. Thank you all for sharing.
I am 47 years old and have a 22 week size uterus due to fibroids. I am schedule for surgery May 24. At this point it is a TAH but I'm still trying to decide about my cervix. Since I haven't found my symptoms to be unmanageable, I had hoped to make it through menopause without doing anything. My question is, do you know anyone who had a uterus that size and did nothing? Did they see much of a change in size after menopause? My doctor is now saying that I won't see much change if I wait. And in the mean time the fibroids are still growing and the symptoms are worsening.
22 weeks sounds so big to me. How does this compare with what some of you have experienced? Am I on the high end?
Thanks,
Sharlow

Hi Sharlow - Of what I have read here and experienced myself, yes you are on the high end. Very definitely.

I'm 54 and I tried to wait until menopause, but it didn't work because my fibroid eventually caused life-threatening hemorraging so I really had no option - but before that started to happen......of course I knew that I had a fibroid and it was ALOT smaller then too! - I tried other remedies, such as 'waiting for menopause', various herbal things, a D&C (didn't work), BCP's (made the fibroid grow VERY fast) From the first ultrasound that I had last August, it was estimated at 16 weeks, however by October 25, it had gotten to 20 wks.

I had other symptoms, like fullness, reduced bladder capacity, constipation, increasingly heavier nonstop periods and clotting, anemia; and nausea, nausea, and more nausea. If you had asked me how I felt one day back then (say, a day when the bleeding wasn't making me feel too faint), I would have said 'fine' - and meant it!

(any of this sound familiar?)

The insidious thing about all this, is that it creeps up on you slowly, and you make adjustments, and really - you can't even remember what it feels like to feel good.
In addition to generally ruining your quality of life as the symptoms increase, a large fibroid can be dangerous to your other organs and compromise their function, and the anemia if allowed to go on - can have very serious effects on any pre-existing condition you might have, and on your overall health.

You might want to get another opinion from another Doc - that's always encouraged. I had two opinions (quickly) and it helped alleviate the small remaining doubt that I had.

Best wishes in your decision!
hug,

joano

TAH at 54/kept Ov's

Hi Sharlow,

It sounds like you and I are in the same boat. I am 47 and wondering if waiting is an option. A friend of mine said she had 3 grapefruit sized fibroids and after menopause they disappeared! Thing is, we don’t know when we are going to go through menopause. It could be one year, or five!

In December 2003 I went to the OBG-GYN for an extremely heavy period and was told my uterus was HUGE! I was surprised. I thought I was just fat.

The woman doing the ultra sound said that my uterus was the size of a 6-month pregnancy, and by my OBG-GYN that it was a 5-month pregnancy. I went on Lupron for 3 months due to my doctor’s misguided belief that I needed to for an Embolization. When I had the embolization in July 2004 the doctor said my uterus was the size of a 7-month pregnancy!! My largest fibroid is about the size of grapefruit, and two slightly smaller ones.

My bleeding problem was cured, but the fibroids remained large. A March 2005 ultrasound shows they may be growing as my uterus at its largest measurement is now 17cm, up from 15cm in a January MRI. I went to a surgeon and he says that they are growing, and could injure surrounding organs. He was concerned about my kidneys and ordered an ultrasound. Kidneys checked out ok. I guess the placement of my fibroids is such that they can impinge on the little tube that goes from the kidney to the bladder and back up.

Of course, my OBG-GYN said that if the fibroids aren’t causing me problems then there is no problem. Arrgh!

I’ve looked into everything short of voo-doo to get rid of them. Most recently freezing them, and the new Focused Ultra Sound, but both procedures look like they’re not going to really shrink these things much. I am absolutely terrified of getting a hysterectomy. I ‘do’ look pregnant, and it is hard to bend over. But when I read about the complications a lot of the women on this site have I hate to think of being worse off.

Now it’s been discovered I have two cysts on my ovary, so an ultrasound next month will be revealing both for the cysts and to see if my uterus has grown more. If so…..

If I must have a hysterectomy (bikini cut), I am looking into having a tummy tuck at the same time. Surgeon said he’s ok with it. Maybe it will give me something to look forward to. I plan to keep my cervix as it is supposed to help hold up the bladder, keep sex more the same, and is less invasive a surgery. My surgeon said just be sure all my pap tests have been normal and continue with yearly pap tests. I hope to keep at least one ovary. I will go on Lupron for three months before the surgery.

I don't know if that helped. Keep in touch. I’ll be thinking good thoughts for you.

Itshard2bawoman

Did your doctor talk to you about myomectomy? Since you're close to menopause it's often a preferred way to keep the uterus. Some doctors don't suggest it because they only want to preserve the uterus for women who want to have kids. Since you're close to menopause it's not as important for them to get all the fibroids, just the ones causing the large mass in your uterus.

If I were that close to menopause, that's what I would have done. I was 38 when I had my hyster, so I had at least 15 years of natural hormones to go. (And with a 16 week uterus, I was really starting to see them.)

22 weeks sounds like a large mass and must definitely be having some effect on your overall quality of life. My problem was bladder pressure - I had to pee every hour or so, and often felt like I was going to burst only to find a little tinkle in there.

Waiting for menopause isn't a guarantee, but a lot of women find that their fibroids do shrink without estrogen. One way to check to see if yours would is to try a short course of lupron which would throw you into chemically induced menopause. I'm not sure where your doctor got the info that menopause does not have any effect on fibroids. Do you feel he's rushing you into this decision for surgery?

If you still don't want a hysterectomy you also might want to look into UFE, which can shrink fibroids for about half the women who try it (and even when it doesn't shrink them it often halts their further growth). It's not a surgical solution, so the recovery is much shorter. It carries a risk of interrupting the supply of blood to the ovaries though, just as hysterectomy does.

You'd have to consult an interventional radiologist for that procedure, regular gynecologists don't perform this and don't often suggest it.

As for the cervix, there are differing opinions. I kept mine, I'm glad I did. Be aware the there is a small risk of a mini-period if any endometrial tissue is left in the cervical stump. Also, you should be tested for the high risk strains of the human papilloma virus to make sure that you're not at high risk for cervical cancer (HPV causes about 70% of all cervical cancers) since treatment for advanced CC is a little harder once the uterus is removed.

Take care.

Thank you all for your replies. Yes, those symptoms sound familiar. Long periods with clotting, lower back pain, bladder pressure, spastic bowel, that's all where I'm at. At all times I feel like I need to lay down and sleep. I had put most of this off as aging.
My gyn did a lap about five years ago. At that point one of the fibroids made it seem like I had an enlarged ovary. He went in to have a look. He saw seven tumors, possibly more, some in the uterus wall and some on stalks. He said there wasn't much uterus left. So I'm not a good candidate for myomectomy. I am comfortable with my dr and switched to him because he was willing to be conservative about surgery. Other gyns I had been to were already pushing hysterectomy. But now he is recommending surgery because of the pressure on other organs. As you say, it has all crept up on me slowly and he says I am probably more smptomatic than I think I am.
I am ok with the idea of surgery. I'm mostly concerned about the long recovery and how I will manage work. And then I have other concerns that are really kind of silly and vain. I've always been small and fairly active until my uterus got so big. Up until about a year ago I enjoyed jogging. Will I ever have a figure again? Is it possible to go back to jogging? When I read about what some of you are dealing with, these concerns seem really trivial. I'm thinking about keeping my cervix only because of the possible support it might give in the pelvic region. Otherwise, I'd be happy to avoid pap smears and mini periods.
Have any of you been able to get back to a physically active life after a total hyster? Will having a cervix ake that much difference?
Sharlow

When I sought medical advice regarding my enlarged uterus --about 6 month size, I was told only removing the fibroids would not shrink the uterus. The uterus would not return to a normal size. That helped me make the decision about having a hyst.

Well, about 2 weeks ago, I went to the OB-GYN for severe pain in my left pelvic area. Initially diagnosed with urinary tract, but when the Nurse Practitioner did a pelvic and found a SEVERELY enlarged and rock-hard uterus (up to my belly button), she ordered an ultrasound and an MRI to try and learn more. Before receiving the results, she recommended a hyst.

Went back two days ago to talk with DR and learn about the results. Two large fibroids about 4 inches in size and several small ones. She's recommending hyst, too. She did, however, talk about my "options," but given my constant feeling of weakness, pressure and difficulty bending over comfortably, I believe my only option right now is hyst.

DR also recommended trying Lupron to see if it would shrink the fibroids down a bit to make surgery a little less "intense." Of course, I know there are no guarantees that it will work. In the meantime, I just started my cycle today, and I feel as if I could roll up in a ball and die... don't feel like doing anything.

Are there any ladies out there who had similar uterine size and went ahead with successful surgery? I'm not sure I can wait on the Lupron to do its thing...

Hi tunkin66,

I haven't had surgery, but I have been on Lupron, and I have a large uterus and 3 grapefruit sized fibroids. I found I was much more comfortable after only a couple of weeks after the shot. I don't know exactly how much the shrinkage was though.

I then had to get the Lupron out of my system because I had an embolization so the fibroids grew back very quickly. The embo worked great for the bleeding, but not for size so I'm looking at what options I have all over again.

If I have a hysterectomy this fall I will go on Lurpon again to shrink them for an easier surgery. It sounds like I am not as uncomfortble now as you are though. I also don't know if my uterus is rock hard.

Good luck,
M

tunkin - If you did decide to wait, it would probably take several months for Lupron to have an effect on the size - and it doesn't always shrink the fibroids, and doesn't always stop the bleeding. In fact, in some cases, it can make the bleeding worse. (small percentage, though - but beware that it could happen)

As far as surgery is concerned, it's all "intense" (interesting non-medical choice of words from your Doc - wonder what it means?), so whether it ends up being a vaginal hyst (doesn't sound likely with a rock-hard uterus - and one that big) or a TAH, is it worth gaining a 3 week shorter recovery time for 3 more months of waiting? And that is widely recognized around here as the approximate difference between those 2 types of surgeries..... 3 weeks. Consider that by the end of that waiting time, whatever it would end up being, 3 months or 6 months - you could have all this behind you and have your life back.

Good luck with your tests - talk to your Doc & let us know how it goes.
Hope you will feel better soon!

joano

Hi sisters - Just a little more info that you might find helpful...(I see you are concerned about size )

I forgot to add that although my August ultrasound showed my fibroid uterus as '16 week'........ a late September ultrasound showed it as '20 week'........and then my surgery report in late October showed it as '22 week'.

I had a 6" vertical incision, and nothing was ever said about trying to shrink anything first. I had two opinions, and both were the same.

My surgery was textbook perfect, and I had NO surgical complications at all.

And I have never been as relieved in my life as when I first woke up from surgery to realize that none of the problems that had brought me there would EVER happen again!

This is definitely the Better Side. I suggest getting there as soon as possible!

S
joano