Overwhelmed Newbie (Long Post)

Hi, I’m Suzanne. I’m new to all this, and I have a big overwhelming decision to make. This is going to be a long story, but I’ll be grateful to anyone who has time to read the whole thing, because I need as much advice, etc., as I can get.

OK. I’m 42. Single, no kids, probably wasn’t ever going to have any anyway. I’ve known I had a couple fibroids for a number of years, but they were small and didn’t require any attention. About three months ago (actually the weekend before September 11) I became aware of my abdomen feeling bloated and feeling strange stuff around my navel. (I won’t keep you in suspense – it’s not turning out to be ovarian cancer). I’ve always had minor digestive problems, some IBS, etc., so I thought it was probably gas, of which I have plenty. I was going to get it checked out, but then September 11 happened, and since I live in NYC and work for a major news organization, a lot of stuff went to the back burner for awhile. Then on Thanksgiving weekend I was having some mild menstrual-type cramps. Since I knew I wasn’t having my period, I started poking and prodding my abdomen and realized that there was really a solid object in there. What I was feeling that night was my uterus, which has grown to fifteen- or sixteen-week size as at least one of the fibroids got much bigger. I saw a gyn. right away and she sent me for an ultrasound (transabdominal and transvaginal). The radiologist found that besides the fibroids there’s a mass in my abdomen that moves around like it’s on a string. (Probably the source of what I was noticing and not dealing with back in September). This mass is most likely another fibroid and not anything scary, but because they can’t be sure of that from the pictures (even after a CAT scan and a second ultrasound), it needs to come out ASAP.

That in itself isn’t what’s overwhelming me. The issue is what to do about my uterus and how to coordinate that with this more urgent thing. I thought I could just deal with my big fibroid uterus after the unidentified mass was out of they way; I still can, but the gyn. and general surgeon have suggested I think about whether I’ll eventually want to have a supracervical hysterectomy for the fibroids; if so, it would be wise to do that while they’re in my abdomen anyway, to avoid having two surgeries in a short period.

Well, it is strongly possible that I’ll want a hysterectomy for the fibroids. They’re not causing much pain, but I can definitely feel that my uterus is taking up a lot of space in there and making me uncomfortable. I don’t feel like I want to live with them much longer. And I would prefer to be able to have just one surgery and be done with it. I’ve been researching myomectomy, embolization, etc., but because of the fibroid’s size and other things, it’s not clear that those would be workable options. (Although I’m interested in hearing your experiences with those & other treatments). I’m being asked to make a decision in a few days, because they need to schedule surgery for the mass, and they need to know whether to plan a laparascopic or an open surgery. (They may wind up having to open me in any case, if the mass can’t be gotten out with the laparascope). HELP. This is not a decision to have to make under a deadline. The choices are basically:

A) Tell them to plan on just removing the mass and leaving my uterus alone no matter what else they do in there. I’ll deal with my uterus afterward.
B) Tell them that if they wind up having to make a big incision anyway, they can take my uterus out; if they can remove the mass without making a big incision, leave my uterus alone. Again, I’ll deal with my uterus when this other thing is all over.
C) Tell them to just do an open surgery, take out the mass AND my uterus but leave my ovaries in, since they’re not currently a problem as far as we know, and I since may have 8-10 years left before menopause, and only 1 in 100 women will get ovarian cancer in her lifetime.
D) The most disturbing choice, but one I can’t completely disregard: Let them open me up, take out the mass, AND my uterus AND my ovaries, since ovarian cancer is so awful and usually detected so late when it does happen, and I would hate to be that 1 woman out of 100.

Fertility is not a priority, although I’d have liked to keep all the options open until nature closed them. I am concerned about premature menopause, bone loss, heart disease, having to struggle with HRT. I’m also seeing sources that say hysterectomy alone can cause the ovaries to shut down

I’m sorry this has been so long; I just can’t find a shorter way to explain it. I would be grateful beyond words if those of you who have made it through the whole story could offer whatever input comes to mind. Thanks so much.

Suzanne in Brooklyn.

{{Suzanne}},
I replied to your post on The Road also concerning ovaries... I know your Docs want to remove the mass quickly being that they are not sure what it is but since you dont seem sure you want the Hysterectomy I would suggest taking the time to do more research on it since the Fibroids arent life threatening. This surgery is not reversible and neither are the complications it can sometimes hold. I am by no means saying dont do it just educate yourself on it and be sure it is something you want to do. For many of us it was a quality of life decision. Some come out feeling better than ever and there are some of us that will carry the lasting effects of this surgery with us forever. I would also suggest a second opinion even a third. They could also offer other options or help you more in your decison making process.
My thoughts and prayers will be with you...

Hi Suzanne,

Sheri has a very good response. Unfortunately, only you, will be able to make this decision for yourself. This is a difficult decision, and you don't have the luxury of time to make it. If time is what you are looking for, then your first suggestion is probably what you will decide upon.

As far as the ovaries are concerned, if they are healthy and there is no history of cancer in your family, you are right in wanting to leave them in. They can go into surgical shock with a hyst, and sometimes they do not wake up. I kept mine, they slept for about 28 days following surgery. It took them a couple of months to get back into their normal routine. Even the women, who have experienced complete shut-down after their surgery, are benefitting from keeping their ovaries. The ovaries continue to dribble out some things that our bodies need.

Good luck with your decision. I know it is not an easy one to make, especially with a dead-line!
Let us know how your appt. with the doctor goes.