hysterectomy vs cystectomy

[Sarah42]

Hi

Great to find somewhere where I do not feel alone.

I just wondered about others experiences of ovarian cysts and hysterectomy were. Has anyone had to choose between cystectomy and hysterectomy?

I have cysts on both ovaries, one is 3.6 cm and the other a bouncing 17x15x11cm. They want to do a hysterectomy with bilateral salpingo oopherectomy. Looking at the posts it seems many other women have had cystectomies.

I have had 2 ca125 tests, both above normal but not amazingly high and surgeon thinks cysts are benign (phew) as one has got so big and not causing really nasty additional symptoms except cyst is very uncomfortable and often painful.

It is ultimatley my choice, and I am not keen on a hysterectomy, but am confused. Those that have had cystectomies only, have you had recurrant cysts? I am having a lovely vertical abdominal incision to get the biggun out..and i think the surgeon thinks take it all out now (i am 42 and had my family). Also he says could get more cysts and i will lose one ovary anyway.

Any info would be great. really confused as to what to do.

sarah

[Sarah42]

Thanks for your post.

I have been doing alot of research and reading and have found the posts on here so helpful.

I am scheduled to have TAH/BSO too. The ovary debate has had me going round in circles, but I think I am starting to see the woods for the trees now (though my hubby says I will keep umming & erring as it is not at all easy).

I have read that about research that was done in 2007, into how women were affected leaving one ovary and none and potential risks compared to women keeping both ovaries. Previously it was believed that one ovary was fine in producing enough oestrogen. This study in 2007 found they had the same risks as those having a BSO. I know I will lose one definately, so I think I am now erring towards both going (as I have a cyst on both anyway) and then having HRT. If I leave one I won't be prescibed HRT, and I know my periods have changed (and it feels like my hormones too)- which I think is down to the cysts.

The surgeon has said I have a high risk of getting more if I leave one (and I have read alot of differing opinion on this- so open minded there). I do know I can get v.large cysts and I don't want to go through this again.

I have a tilted womb, which is fine (though does cause a few issues., but not enough to have surgery for alone), but is probably horizontal after having my children, so losing that is good for me personally.

And yes to the medical jargon, I can't believe I the terms and words I 've learnt in such a short time!

Interestingly, my surgeon says it's easier to take everything out. He can take it out in one go pretty much and he won't be fiddly round (he says it lowers the risk of leaving any debris). Now I don't know how true this is, but I agree to the recovery time being increased but I am hoping it might make a simplar operation.

Thanks again,

sarahx

[MarieMichele]

Sandymac got me curious, so I started digging into my medical records and started looking up all the abbreviations they used.  Gotta love all that medical shorthand, eh?

As it turns out, I had a "BSO" which is a bilateral salpingo-oophorectomy.  In English, that means both ovaries and both tubes were removed, along with the cyst.  In all my conversations with the doctor, only "ovaries" were discussed so I just assumed that's all he took.  Apparently not.  It's certainly logical to remove tubes when ovaries are removed since the tubes would serve no purpose without corresponding ovaries.

I would think, however, that to remove a perfectly healthy uterus only adds to the degree of recovery a person must endure and could needlessly add to the complexity of surgery.  Also there are several different types of hysterectomy that involve only a portion of the uterus, all of it, all of it with the cervix, etc., so that's even more information to process in arriving at a decision.  Unless you have had serious problems with endometriosis, fibroids or other problems with the uterus or cervix, I don't think a doctor or you should think about adding hysterectomy to your procedure.

The BSO (or just cyst removal with possibly one ovary/tube if it's damaged by that big cyst) should be enough unless there's more in your medical history that warrants a hysterectomy.  It's not an easy decision.  I would think the best decision is whatever will cure you and give you the best quality of life and outcome with one procedure without having to deal with another one in the future.  

Leaving one ovary or not is the real question.  On the one hand, it prevents surgical menopause to keep at least one ovary.  On the other hand, that remaining ovary already got one cyst and could potentially get another one in the future.  This decision is only easy for post-menopausal women.  It's a difficult decision for everyone else.

Best wishes to you in whatever you decide.  We are here to help you through this!

[Sarah42]

Thank you so much for your posts. It is really helpful to hear about other ladies experiences with this.

I should have asked about the incision, yours sounds very good Marie, I must admit because they keep telling me it has to be vertical (and make faces) I imagine some sort of horror movie site (so I just try to not think about it). I know it has to be done that way, but a bit of reassurance from them would be nice. So it's good to hear that they can be OK.

Sandy, I agree that CA125 test is unreliable, I think the fact I have gallstones has raised the CA125 (they were found on the ultrasound and so I looked up what else could affect the CA test - and hey presto), this is what started me doubting the whole 'remove it all' approach. If there was a suspicion of cancer I wouldn't hesitate, but I don't think (and nor does the surgeon) that that is likely (obviously the biopsy will tell all). Now I think it seems they are giving me reasons on a just incase basis.

I think alot of procedures depend on where you live, I found that when I had my children and to be honest because I haven't been in the system since then I had forgotten. I need to feel right about my decision, and maybe trust my instincts.

Thanks again, I have lots to mull over, but it is really good to hear from others.

sarah

[Sandymac]

Forgot.. they also did remove the "tube" as well.. Seems that seems to go along with removal of ovary in many cases,

And, I wouldn't worry too much about that CA-125 elevation. Lots of things can cause elevation of those numbers.. It really isn't that reliable in younger women..

Sandy

[Sandymac]

Hi,
   Actually I would have loved to have had the whole kit and kaboodle removed, but my Dr. said absolutely not. At my age, I couldn't see the reason for keeping anything, but evidently there are compelling reasons not to remove. She even refrained from removing the other ovary. She is one that is just adamant about removing healthy organs. I asked the question about preventing recurrance. Having one cyst does not strengthen the chances of having others, at least at my age.I had a functional cyst in my 20s.. that resolved on it's own. Then this cyst last year.. (I'm a young 70!!) so, it doesn't necessarily mean you will get more.
     We had a nurse that used to post here.... She  went through all the reasons NOT to have a hysterectomy unless really required.. and I was amazed at the medical "reasons" supporting that feeling. Marty.. if you're reading this, please re post ..
     I can't speak to the incision since I had the laparoscope.. but the ultimate decision will be yours and the Dr's .Everyone is different and no one rule is good for all.... Let us know and good luck!
Sandy

[MarieMichele]

I had the surgery on January 16, which is close to 4 months ago.  I think I can safely say I'm fully recovered now. I'm able to do everythiing I did before surgery without feeling sore.  I had the advantage of having already completed menopause naturally by age 46....a bit earlier than average...so it was an easy choice to have both ovaries removed for me.

I had both ovaries removed along with a large 10+cm cyst.  My surgeon was a gyn/onc, so  he also did an exploratory (of kidneys, liver, etc.) to make sure there was no cancer  (None found!)  I have no idea how much everything got pushed around, re-arranged, and then put back in place.  I try not to think about it!  I'm in better shape now than before the surgery, so they did something right.

My whole abdomen was sore for the recovery period, but my vertical incision is about 4 or 4.5 inches, from just below the belly button downwards.  They stitched it internally and glued it externally.  Was a very neat, clean, dry incision from Day 1.  Never needed to have any stiches or staples removed. That impressed me.  I was expecting a more horrific looking surgical site and it really wasn't.  

[Sarah42]

Thanks for the post. I have cysts on both ovaries and they felt that originally the blood tests for cancer were above normal, so I think they were erring on the side of caution. The surgeon says I will be prone to more if I leave one ovary (if he can save it), so I might end up having the operation again.

It is the surgical menopause that puts me off really.

Really good to hear something positive about vertical incision. Sounds as if you had alot done, how long ago did you have it done. And how do you feel now?

Thanks again. I will have to weigh it all up, it's good to hear from others that have had similar experiences.

Sarah

[MarieMichele]

I would be asking your doctor why do they "want" to do a hysterectomy?  It's probably enough to remove the cyst and affected ovary.  To prevent future cyst problems the second ovary is often recommended for removal, but that triggers menopause or adds the need for HRT.  Why the uterus and tubes, too?  Unless you have additional problems that are not described here, it seems like more surgery than needed.  

As for the incision, the vertical incision is actually better than a horizontal one for recovery.  Not disagreeing with your doctor, necessarily, but these are questions you need to be asking when weighing your options.

My doctor and I discussed all the options, including hysterectomy.  I was almost inclined to say "take it all out" but he was the one that felt it was more than required.  I ended up with the vertical incision and oophorectomy to remove both ovaries and the cyst.  It was a big enough procedure without adding to it!