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Did I make the right decision Did I make the right decision

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Unread 03-23-2007, 06:03 PM
Did I make the right decision

I am almost 53 years old and I am tired of the pain from the fibroids. Back in June 2001 I had an endometrial ablation for extreme heavy periods. That procedure was a blessing. I have also had cysts on ovaries removed and now there is another cyst plus my number for CA125 was 37.5 , slightly above normal I am told. No concern for ovarian cancer. This is a new GYN MD I am using since my other one is retired. He is not pushing the hysterectomy, I am. My sister had one years ago ( like 15 or more) and she was pushing for me to have one since 2001. I have heard so many stories - " keep the ovaries, don't keep the ovaries since you have had a history of problems with them, now you won't have to worry about ovarian cancer", " have the hysterectomy / don't have it".
Did I make the right decision? He did offer to have a procedure called Uterine artery embolization but from what I understand, the fibroids can grow back.
My concern for the hysterectomy is weight gain, hot flashes and PMS symptoms. I am already struggling with weight gain b/c of menopause. So far menopause has been a breeze. I don't want HRT.
Did I make the right decision?

I did have 2 c sections back in 1983 and 1987, therefore
the MD suggested only a abdominal hyster vs. vaginal.

Does anybody know anything about the Uterine Artery Embolization?
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Unread 03-24-2007, 02:17 AM

I must say I can't tell what your decision is. If it's to have the surgery, probably it's right. I was supposed to have one, because my fibroids and uterus are huge and the bleeding is causing anemia, but I cancelled. I'm 51, and I haven't had any pain. I'm assuming menopause is around the corner, which will shrink the fibroids and all will be well. At first I thought I wanted it because I was worried about my ovaries (for no particular reason) but now I read that, even at my age, you should leave the ovaries because they secrete useful hormones into your sixties . I feel fine now and am glad I didn't do it, but I keep feeling this huge bump, which is clearly visible, and thinking maybe I should have gotten rid of it. It would have been all over by now and I'd be recovering. So if you're doing it, I think that will be great - all usually goes well and your troubles will be over. Good luck.
Unread 03-24-2007, 07:28 AM
Thank You

I did read somewhere on the internet that AFTER menopause the fibroids should atrophy ( shrink) . I asked the MD, " where am I in menopause?" He had no idea. If I thought I was almost at the end I would say forget the surgery I will live with the pain.
My girlfriend suggested I ask him more about just removing the fibroids and uterus and leaving the ovaries and can he leave the cervix too?
Also, I need more info about the uterine Artery Embolization.
I was thinking of going to a female GYN for a 2nd opinion. Two co workers highly recommend their MD.

I thought I was all set, I am not afraid of the surgery, I don't want insomnia, hot flashes, weight gain.
I already have weight gain BUT no hot flashes and I sleep like a bear in hibernation. I am afraid if I get a TAH I would have to start HRT and that scares me too.
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Unread 03-24-2007, 08:11 AM
Did I make the right decision

Hi Cat. Did your doctor offer to test your hormone levels to see if you are post menopausal? I'm also 53. My issue was persistent ovarian cysts. Prevailing opinion is that these cannot be functional after menopause, and that was the deciding factor for my hysterectomy. So you might want to know that since you also have cysts. I had TVH/BSO...in retrospect, even though I was effectively post-menopausal, I remember thinking that those ovaries must have been doing something because I did feel "different" afterwards. If I had it to do over, I would be more firm about keeping the cervix, partly because it's a bit like losing one of your features (NOT the end of the world at my age, but still.....), and partly because I think it does play a pretty significant role in sexual response. However, removing the uterus has only benefitted me. I was having mild bladder problems before the surgery...very little of that now...and I am more physically comfortable (things are apparently where they are supposed to be). Just some thoughts to factor in. Second opinions are good. A doctor who is thorough, responsive and considerate of your feelings is a necessity...sounds like yours is not pushing surgery which is probably a positive thing actually. (Is there any reason not to try the less invasive procedures first?) Some serious hand-holding from friends is helpful too...which you can find here. Good luck with your decision!
Unread 03-24-2007, 08:50 AM
so glad you replied, I have more questions

You made a good point about where I am in menopause.
I asked him that yesterday and he said he had no idea.
The bloodwork I had was CA125 and FSH.
Should I have had other blood work?
Could my fibroids affect me with urine tract infections because I have had them lately and I was septic last year. I never mentioned that to the GYN MD, didn't think it was relevant. How about the leakage of urine when I sneeze or cough, would having a hyster help that?
Are you on HRT? Do you have insomina, hot flashes, did you gain weight?
I have already gained a lot of weight around my middle but I think a lot has to do with the fibroid. I am telling you I look pregnant ( in my opinion) others may not think it. I am just tired of the pain in my pelvic area.
I have had it for years and it is getting more intense. One night it woke me up and I couldn't sleep and 3 Advil didn't help the pain.

I am thinking maybe just a Uterine Artery Embolization or removal of just the fibroid / uterus and leave the ovaries and cervix. I am so confused.
I will call the MD again on Monday to discuss again PLUS I plan to get a 2nd opinion from a female GYN. Yes, I was very impressed that he wasn't pushing a hyster. BUT he and his female partner haven't given me any adivce for my pain, they kept saying, " we'll watch it."
Unread 03-24-2007, 09:37 AM
Did I make the right decision

My memory is sketchy on this, but I think FSH is what my Dr. used to determine whether I was post-menopausal. Might ask what your level indicates, if anything. Don't know about the urinary tract infections...except that if your bladder isn't emptying, then that could be contributing...and that can be related to uterine prolapse pulling everything down (so I'm told). A hyster can help with stress incontinence, but, I think responses are varied. You might want to do some reading in Bladder Matters, and also discuss with the Drs., so you have reasonable expectations. They can also do voiding studies (urodynamics testing???) to determine what type of incontinence it is, and that should tell you what procedures you should, or should NOT, have done. (Sometimes they can make things worse...I don't know all the details...just that they saw something on my study that suggested I should not have a bladder sling put in because it would probably have the opposite effect! Glad they caught that!) Anyway, the hyster itself did help resolve most of my bladder issues. I am on HRT...I was having headaches and anxiety...no hot flashes with or without HRT, but some insomnia, nocturnal leg pain and yes...I have gained weight. It's not only attributable to menopause/hyster however...it may be harder to get off than before...but my biggest problem I'm sure is that I don't have a regular exercise program. So...lots to consider. You are right to read and ask questions and give it time and thought. Good luck in making a decision.
Unread 03-24-2007, 11:23 AM
Did I make the right decision

Hi Cat4554,

I had UAE at age 52. But by the time I made the decision to get treatment for fibroids they were really huge. So I knew that UAE for me was really just a way to make a hyst a little easier for two reasons. The fibroids would shrink from UAE and it would help minimize blood loss during surgery.

I went ahead and had TAH/BSO at age 53. Now 8 months later, I'm very happy with my decision. I had just gone through menopause anyway. (My last period happened just before UAE... so my 12 months of no periods ended just before the hyst.)

Post-op the hot flashes have been a lot less intense and much less frequent than they were before surgery. And since the surgery I have not had the problems I was having before with heart palpitations, dizziness, etc. I am not taking any hormones. I have tried several herbal supplements, but honestly I seem to feel the same on the days I don't take anything. I'm planning to have my hormone levels checked at my next gyn visit in a month.

I had an abdominal hyst with a long vertical incision because my fibroids were so huge. I never had any kids. I got as large as 28 week size with the fibroids before UAE. A year after UAE at the time of the hyst I was down to 13 week size.

The radiologist who did my hyst was fantastic. He happens to be a leader in doing the procedure in the US, who happens to practice in Philadelphia.

That's my experience. I wish you the best of luck with whatever you decide. And let me know if you have any questions.

Warmest regards!
Unread 03-24-2007, 12:25 PM
Thank You girls for responding

My bladder does empty completly, I had that tested years ago.
Ladora, see I am also trying to avoid what you went through, the UAE and a year later a TAH/ BSO.

Like I said my biggest concerns are hot flashes, insomnia and more weight gain. Weight Gain I def. got after the age of 50 but I sleep great and no hot flashes.
I don't want that starting up.

Someone mentioned HEADACHES. I can't do that again.
I used to get severe migraines when I had my period. Once that stopped in June 2001 from the Endometrial Ablation I was elated.

I like this forum because it is helping me.
Come Monday I will call back to the male GYN I saw on Friday and I will call a 2nd GYN ( a female) for a 2nd opinion.

As I stated, I now have lots of questions that I didn't think of before. I was only thinking of my pain.

I have read that fibroids shrink after menopause and shouldn't cause a problem anymore. If I knew it was only a year away I would deal with the pain.

Thanks for writing and telling me of your experience, it helps.

Mary Ann
Unread 03-24-2007, 03:35 PM
Willing into menopause

You're right - that's the $64000 question - how close to menopause are we? And my reading pretty much suggests that there's no reliable way to tell. I asked my massage therapist if she knew of any chants or crystals or any way to bring menopause on. She didn't.
I'm so sick of cleaning up the blood - I went to bed last night with a tampon and a pad on, and woke up 2 hours later in a pool that soaked through the mattress pad and into the mattress. I changed the pad and tampon, and guess what, 2 hours later, the same thing all over again. Sound familiar?
I have no pain but, really, this, and the fact that I can see the **** bulge so clearly, may really push me toward the surgery. I was going to try the lupron, but the comments on this board about the side effects make it seem unlikely. Also, UFE doesn't appeal to me because it seems that large fibroids will shrink but only 60% at most - and that you are left with scar tissue that doesn't shrink in menopause.
To the person who asked about the cervix - it seems to me, from my reading, that if you do it abdominally instead of vaginally you do keep the cervix. Is that right?

I agree that this board has been useful - I don't trust much of what I read elsewhere because most of it is from people who are trying to sell you something, whereas I believe the people who post here are for real. Thank you all for your input and your help.
Unread 03-24-2007, 09:14 PM
Did I make the right decision

I hate to admit this about UAE (UFE), but I wish someone had really been honest with me ahead of time... for me it was very painful afterwards. Again let me stress how big my fibroids had become before I took action!! But the "dying" fibroids can hurt. Turns out in the process of dying from UAE and going through menopause at the same time, I had calcified fibroid masses. My surgeon says he reached in for my uterus and was surprised at how hard the whole big mess of a mass was. The "basketball size" in my signature below is a quote from the surgeon. And because of the size and the fact that the fibroids were calcified meant that mine were not going away after menopause. I spent years doing nothing, hoping I could outlast them and get to menopause. That's what my Mother did. Her fibroids shrunk away after menopause, but hers were never as big as mine.

So the bottom line is... everyone is different. You are very wise to get a second opinion. Gather all the information that is necessary to make the best decision for your situation and your life. The first gyn I saw wanted to schedule the hyst right away. I left him and went for the UAE first. And then when I was ready for the hyst I found a second gyn (woman) who I like better and her parnter was my surgeon. He was great!

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