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Cyst removal, keep the uterus or not? Cyst removal, keep the uterus or not?

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Unread 04-17-2002, 04:37 AM
Cyst removal, keep the uterus or not?

I am going in for surgery on 4/25/02. Very soon now, I am starting to get nervous. I have two piggybacked "chocolate cysts" on my left ovary. Found by ultrasound. Together they measure 11 cm by 6 cm. I am 36 and my doctor says the cysts have to be removed surgically. I am also going to lose the ovary. I had a CA125 test that was not negative and the ultrasound of the cysts showed that they were not completely "fluid filled" so my doctor says there is a small chance it could be cancer.

My Dr. also told me that I have a choice to make. Do I want to keep my uterus or not? She recommended that I keep it because of my age. She also said that when they were performing the surgery there is a chance (in case of cancer) that they will take everything.

I have been reading a lot of postings and this web site has made me feel a lot better but I am still worried about my decision. I think I am going to have her take the uterus. I have a tilted pelvis, have had irregular paps in the past, and very painful periods for the last few years. I have no plans on having any more children in the future.

I also have a benign tumor on my liver and there is a very slim chance, but a chance, that hormones could cause internal bleeding (or so I have been told). I did take BCP for many years before finding out about the liver condition so maybe it isn't really a concern. The thought of taking hormones scares the **** out of me. I have been told that I will probably be all right with the one ovary, that is if I get to keep it.

Don't know why I am posting but wanted to vent my fears. Also, if anyone else has experience with the large chocolate cysts and an elevated CA125, letting me know that it all worked out okay would be great. I am kind of obsessing about the cancer possibility.
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Unread 04-17-2002, 04:46 AM
Cyst removal, keep the uterus or not?

Kelly and welcome to Hyster Sisters!

I can understand your concern even though I haven't been in your situation. Of course, I cannot tell you what to do, just what I have experienced.

I had a tilted uterus which resulted in painful periods for years. After having kiddos and c-sections I had tons of scar tissue that had formed into adhesions. I had my diagnosis of fibroids as the reason for a hyster. When they opened me up, they found my uterus adhered to my abdominal wall and no fibroids. I had 4 different doctors opinions before I decided to do the surgery.

I hope you have read the pull-down menus on the main page of the site. To get there, just click on the 3 princesses in the upper left corner of this page. There is a ton of information on this site, you can also use the search feature!

Please feel free to email me anytime, it's always on!

Unread 04-17-2002, 05:06 AM
Cyst removal, keep the uterus or not?

I had a TAH/BSO on March 12, 2002. I also had to make the decision to just remove the right ovary due to a large cyst. I had a hard time deciding on what to do. I am 47. My reasoning to have everything taken out was because I was so tired of the menapausal symptoms and the cramping and mega bleeding with my periods. I do not regret having the TAH/BSO. I feel just great. To tell you the truth, I changed my mind about 10 times a day about the surgery. In the end I am glad on what I decided. Hopes this helps. This is only my experience.
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Unread 04-17-2002, 05:43 AM
Decisions, decisions


If the doc ends up taking both ovaries, why would he leave the uterus? 'Because of your age,' doesn't mean much to me. Since you don't want more children, I don't understand why, if you have to go through surgery anyway, he would leave the uterus, especially since you are having painful periods already.

I think I would want some more answers, like pros and cons to taking the uterus.

I'm 12 years older than you, but really look forward to having the uterus (and periods) gone. It served me well, providing a home for my babies until they could be born, but I'm not using it any more and won't miss it one bit.

Make sure you are comfortable with any plans before the surgery, since you won't know for sure until you wake up what they have taken.

Bless you.

Unread 04-17-2002, 06:40 AM
Cyst removal, keep the uterus or not?

I had my TAH//RSO & Cervix removed on 3/15/02. I still have my left ovary and have had no signs of it not working. DR left my left ovary for I am 38 yrs old and she did not want me to go through menopause before I had to unless it needed to be removed. Did have cyst on left ovary and she drained that during surgery. I have been healing well just I agree if your not wanting anymore kids and they have to remove ovaries why keep uterus. Best wishes to you.

TAH/RSO and Cervix Removed 3/15/02
Unread 04-17-2002, 07:14 AM
Cyst removal, keep the uterus or not?

Dear Kelly, I'm sort of in the same boat as you. I have a large cyst-like mass on an ovary that must be removed. When my doctor first said she would also remove my tilted, abnormally-shaped uterus if the cyst had to come out, I was frantic. Well, the cyst has grown, and at first I told her I only wanted the cyst removed. My mother-in-law advised to have the uterus removed, too, because she was once in our shoes. She only had the ovary removed, and a couple years later was back to get the uterus removed. I don't want to have to go through this all over again, so I decided on having the uterus removed as well. My surgery is scheduled for May 1st (changed from 4/24). I was terrified until I found this wonderful site yesterday, and feel much better about things. Give it some thought, and let me know how you're doing. I'm scared, but not as scared. I am afraid of cancer, too, but I'm trying to take one step at a time. A high CA125 number does not mean you have cancer and more than a low number means you don't have it. Makes one wonder why they even do those. Get over the surgery, and deal with the rest later.
Unread 04-17-2002, 01:30 PM
thanks for the support

I just read the replies and feel better. Funny thing is when all of this started going down I was freakishly calm and knew I was making the right choice. It is just as the time comes nearer that I am starting to have doubts and fears.

Donduck, do you have abdominal pain due to the cyst. That is what woke me up this morning in the first place. I was having some wicked pain on my left side. So bad it woke me so I got up to take ibuprofen and couldn't go back to sleep. The pain scared me. I've been having the pain for a while so it shouldn't have freaked me out like it did.

I've also been searching out info on the internet. There is not a lot on the internet about chocolate cysts. Aside from this great site, most of the stuff out there isn't very positive sounding. I know it is said that if something bad happens to someone then they will tell 3 people, if something good happens, they tell only 1. I need to keep that in mind.

Thanks for your kind words, all of you.
Unread 04-17-2002, 01:54 PM
Cyst removal, keep the uterus or not?


Sorry it took so long for me to get back to you.

Yes, I do have abdominal pain from my cyst, although not all the time. A couple of my friends had constant pain with theirs. There are times I feel "twinges" and, oddly enough, these seem to fall on the 8th day of my cycle.

I, too, have had pain wake me up during the night, pain that wasn't there when I went to bed. It's the knock you to your knees, take your breath away kind of pain. Usually it leaves me sore for a day or two. To me, I imagine it feels like it would feel to have had my abdomen used as a punching bag the day before. I feel "bruised" inside.

Sometimes I have a two-three week period of time when I don't even know I have a cyst. And other times, there's no denying it. Back in Feb. I woke up during the night in pain, and the pain lasted about a week. I told my dr. about it, and she thought perhaps it had ruptured. I've read about that and it seemed to fit. She scheduled another u/s for the end of this month, however, April 7 I went to bed and woke up during the night with incredible pain. Took an Advil, went back to bed, and two hours later started the whole thing again. This time I couldn't get back to sleep. Could not go to work on Monday because of lack of sleep and pain, but called my doctor who had me in for a u/s on Tuesday.

The results showed the cyst had grown. That's when the decision was finalized to remove the ovary because the cyst has taken it over.

Yesterday I had the twinges all day, and those, while they're not painful, are uncomfortable more mentally than physically, sometimes. Today I feel like I don't have a problem in the world. It's been a strange merry-go-round ride, but I'm ready to put it out of my life. I don't want any more of the "bad" days. I'm not sure how you feel, but when I'm having that pain, I think I could have the surgery right then, without anesthesia, and not feel any worse!

Like you, I think I should be used to this by now, but sometimes it does seem scarier than before. What is wrong? I keep asking.

I hope this helps you, Kelly. Please let me know more about what you're experiencing.
Unread 04-17-2002, 01:56 PM
Cyst removal, keep the uterus or not?

Dear Kelly,

I also forgot to tell you, when I had the pain back in Feb., I could not roll over or sleep on my tummy or sides for several days. Have you experienced that?
Unread 04-17-2002, 02:18 PM
pain during sleep

As I said my cysts are on my left ovary. For the past 4 months I have not been able to sleep on my left side. The pressure and discomfort were bothersom. That is the side that I prefer to sleep on so I should have known something was going on but didn't. The pain and discomfort is definately a problem when I am trying to find a good sleeping position. Haven't slept more than a few hours at a time for months now. I can never get comfortable.

I have had very painful periods for the past two years, not all the time but about every 3 or 4 months. I had less pain giving birth to my son without an epidural. I remeber the first time thinking death would be a good solution to the pain (not seriously just in very bad pain).

I went to my doctor last year after one of these episodes, they did a vaginal ultrasound and told me I had had a small cyst rupture. So for the last year I have had gradually increasing pain and assumed that it was all just recurring cysts.

About two weeks ago, I went in because I had had constant left sided pain, pressure, and back pain for about three months. Stupid of me to not go in sooner, I just assumed it was the same cyst issue. When I had seen the doctor the previous year they had told me that there was not much I could do about it.

As my new doctor felt my abdomen, I notice the concerned expression on her face. I had gone in to see about some treatment or pain pills only to have her tell me that there was a grapefruit sized growth in my abdomen. That totally freaked me out. How could a person have such a large growth and not notice!!!! I am kind of heavy but I am still freaked that I didn't notice something that big had grown inside me.

She scheduled an ultrasound and told me not to think about it. That a cancer would kill me before it got that large. She did a buch of blood tests, told me I would definately need surgery to remove the growth. I went in for my ultrasound the following week. Turned out that the growth wasn't one large cyst but two smaller (but still large) cysts one on top of the other. The ultrasound showed jagged edges inside the cysts, not all clear fluid, and my CA125 was 65 (I think). She again told me not to worry about cancer, that the test can show positive with endo. Easier said than done, I don't need much to get me to worry.

So here I am, waiting for the surgery. I had heard that you should't take over the counter meds for 2 weeks before surgery, not from doctor but read somewhere, so I am trying to not take my ibuprofen unless I really need it. I had been taking 600 mg every 3 or 4 hours on a bad day. My pain is more like a jabbing twisting pain. Occassionally it will throb and cause me so much discomfort that I have to sit with a heating pad for a few days.

Just an FYI. Have you heard of the disposable heat pads. They are around $7 for three. They work for about 12 hours. You can wear them under your clothes at work etc. They work great. I am hooked.

Well, that is probably more info than you wanted but I do ramble on occassionally. Thanks again for listening.

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