I Need Advice, Too!

Submitted by Stormie55 on July 25, 2015 - 9:05pm
Body: 

Help! I am scheduled for surgery July 28 because of a basketball-sized ovarian cyst. I went to the oncologist/gynecologist who, after looking over my CT scan, said there was a very good chance the mass wasn't cancer. He wants to do a complete hysterectomy along with taking out the cyst whether it's cancer or benign, although he is letting me make the final choice. Of course if it is cancer, then I'll have to comply.

I said I wanted to keep my uterus and other ovary if it's benign, but here's the problem: my uterus just won 't stay in anymore. I'm wearing a sea sponge to keep it in place right now, but at times the sea sponge gets pushed out presumably because the cyst is putting so much pressure on it. I've had it under control for five years now, too, thanks to Christine and the posture, but because this cyst is so huge, it has regressed.

Not only that, but there's a 7 cm fibroid that has prolapsed out through the cervix and my uterus is enlarged because of two other fibroids. The prolapsed fibroid has been like this for six years. So, should I go ahead and have the hysterectomy is my dilemma. What would you do?

Forum:

Snapcracklepop

July 25, 2015 - 11:33pm

Hi Stormie55,

So sorry to hear that you're having to deal with this choice.

Of course, when I hear you say that it's your decision as long as it's benign, my gut says don't have the hysterectomy. We all know how important it is to keep our uterus if at all possible. That said, there is no way I can know what's best for you and we don't give medical advice here.

Sounds like you've been at this work for five years and because of this I imagine that you're really in touch with your body. My advice is to rely on that connection you've established and listen to your body. Ask it what it needs.

I hope you hear from others Stormie55.

All the best whatever you choose,
Snapcracklepop

Surviving60

July 26, 2015 - 6:49am

We cannot give medical advice on this forum. But you've asked for opinions so I will give mine. If he is recommending hysterectomy because of the fibroid, or because the uterus is prolapsed, well, neither of these is a reason for hysterectomy. You haven't mentioned your age but the fibroid will most likely shrink after menopause. If prolapse is the issue you need to be aware that hyst can cause the other organs to prolapse, and puts you at risk for a much worse kind - vaginal vault prolapse which is the reason that most hysts involve tacking up the vagina in an attempt to prevent it.

We need our uterus all our lives. Go over to the Resources page and watch Christine's interview with Nora Coffey of the HERS foundation.

Only after the cyst is removed can you assess and deal with how much it was affecting your prolapsed uterus. If it was me, I'd take it a step at a time. Get rid of the cyst, preserve the uterus for the time being, and go from there. Good luck to you - Surviving

Stormie55

July 26, 2015 - 10:55am

I did forget to mention my age. I'm 59 and believe it or not, I don't know if I'm in menopause yet. I was diagnosed with Hashimoto's Thyroiditis a few years ago and was told it causes havoc with a woman's periods. So, I've been having irregular periods for several years now. My last one ended May 31 of this year.

I do think doc wants to do the hysterectomy because of the prolapse and fibroids. As I mentioned, I've already told the surgical team I don't want the hysterectomy if the cyst is benign because I do know about vaginal vault prolapse.

My grandmother went into menopause at age 53 and had a fibroid keep growing to about basketball size and finally had a hysterectomy because of it at age 70. That's why I'm going back and forth about the hysterectomy for myself. Have I inherited my grandmother's fibroid genes? Will my fibroids keep growing even after menopause? I guess if that should happen I'll deal with it then. As for now, I want to save my uterus.

Thanks Snapcracklepop and Surviving60 for your thoughtful comments and advice.

ActiveandLapsed

July 27, 2015 - 3:53am

I don't have any advice but just wanted to wish you the best. It is incredible what women deal with and I love that you have shared your story.

shambi

July 31, 2015 - 11:09am

Hi Stormie55
Have just read your story with interest as it is very similar to mine. I had a huge fibroid tumor attached with tentacles (encroached), to my uterus. It was the size of a melon, big. The fibroid took up so much room that it pushed my uterus right out, down the vagina where I could see it. And worse, all of this re-postioning in there because of the tumor, squashed my urethra so I could not pee. This is the part that made me think I had to get the hysterechtomy. So I had it when I was 49, something I regret now. I have since learned that there are surgeons that can go in and un-attach the tumor/fibroid from the uterus and take it out, leaving the uterus. They are few and far between though and you really have to hunt to find a surgeon who will do this. I wish I had known. Now, five years later I have incredible problems with bladder prolapse and lots of pain and discomfort. My 2 cents would be to try to save the uterus at all costs. Good luck with your decision, and thank goodness for this group/forum!