Removal of ovaries and raised CA 125 levels

Hi Debra.  I had this surgery done 3 and half weeks ago.  I had one ovary and a large cyst removed.  I am also pregnant so there were more risks with me.  it honestly isnt as bad as the waiting to go for it is.  You wont know a thing is happening and the pain afterwards isnt anythign unbearable.  As I was pregnant the only medication I was allowed was paracetomol and I coped fine.  I had to have the open surgery as mine was so large keyhole wasnt an option.   The day after surgery getting out of bed hurts but is only until you get yourself up and out.  it really does make a huge difference and speed recovery the more moving about you do.  I was able to get up after a few goes to the bathroom with nurses and then go myself and have a shower and get changed etc.  3 and half weeks on I didnt think id be half as good as I am and do the things I am.  My wound is healing very well but I would imagine you will be like me and need to take a while off work.  I need to make sure I recover as best I can before having to go through labour in few months.  

Hi Debra You must be so worried- I feel for you. I had an ultrasound scan for cystitis on December 17th-kidneys and waterworks fine but enlarged ovary showed up followed by blood tests / CT scan on Xmas Eve. With it being the holidays I heard no more. I phoned the liaison nurse , Linda and she finally got back to me on Monday,Jan 5th. She said nothing else had shown up on CT apart from 2 cysts one on each ovary-5cm and 8cm. I already knew about this (except the sizes) and that I would be having a hysterectomy soon. The blood was 27-normal is 35. There was no fluid in the abdomen or other parts of body so I took all this to mean the cysts weren't malignant! My family were delighted on Jan 5th when I told them. Today I received an appointment to see a Gynaecological oncologist and went into shock at the word oncologist! -also told to bring a relative with me next Monday 12th Jan. Again I phoned the liaison nurse and she was reassuring saying because of the malignancy index ie AGE,POST-MENOPAUSE,ULTRASOUND SCAN AND BLOODS, they are treating me as if I MAY have cancer and when they operate their experience and knowledge will make sure I get the right care.The nurse said that if my bloods had been in hundreds or thousands the conversation would be different. The scary thing is I feel well and no different to before- I am a very fit 74 yr old and have been so lucky with my health. I'm going to let my family think I'm OK as I don't know myself yet what will happen. Debra 49151 do you have someone to talk to apart from the consultant they can be very reassuring. Linda told me it's routine at my age to do a hysterectomy and I don't mind that as long as it works. It's been a very scary and emotional Christmas,but we're getting the right care and from what I've read the success rate is good and ovarian cysts are common. Hope this helps and  you soon get peace and good health xxGood luck on Monday- I will be thinking of you. Please let me know what happens xx

Hi Debra, Just checking to see if you're OK- I know how worried you were.The fact that you don't need a full hysterectomy may be encouraging? I spoke to my niece in London last night- she is an oncologist and she was very positive- there is a routine system in place in most hospitals where most people with ovarian/pelvic cysts are seen by an oncologist and told it MAY be cancer,but in most cases it isn't. It's just that the oncoligist will  do my surgery so they  put you in the right place to start with. I went to another local hospital first to see a Gynaecologist and then last Wednesday was extremely worried to be given an appointment next Monday 12th to see a Gynaecological Oncologist at a different hospital. The blood test isn't conclusive- other factors influence whether you have an op or not. The main thing against me is age and I'm post menopause. You sound younger, but phone your doctor or nurse and ask for  answers to your questions. Good Luck- I hope your op goes well.Let me know From what I've read on this forum the op isn't as bad as the waiting in the weeks before and recovery is generally quick as long as you take it easy for a few weeks xx

Thankyou Debra. Just think in the not too distant future you will be pain-free. I wasn't going to tell my daughter but she knew I'd gone for a routine scan and pushed and nagged me until I told her the truth. It's the best thing I did- your children love you most in the world and will help you get thro. Even one of my grandsons (29) has been an absolute rock. Take care xx

Update . I had my operation 12th January . I was told before surgery that I may need a full hysterectomy . I came out of surgery not knowing what had happened . I had bilateral scalping oopherectomy and hysteroscopy . A mass of cysts was removed and the consultant was pleased that everything had gone well . I had convinced myself I had cancer . He said it was endometriosis . 

Recovery has been slow . I've been in a lot of pain but everyday feeling stronger . Did a little bit of housework onTuesday and yesterday I was crying in pain . The pain that I had before the operation has gone and I'm looking forward to the future and being pain free . i hope everyone gets the help and treatment that they need x

Hi Debra- thanks so much for the update. I'm so glad for you that the outcome was good- no more worrying now,you just get better and be careful to rest ( I know it's hard! ) I have enjoyed this last "normal' week as my op is on Tuesday. The surgeon has added 'laparoscopy and laparotomy' to the consent form now so hopefully he might get the cysts out without a hysterectomy. I will let you know.They have told me they won't get biopsy results until 3 weeks after surgery? x

I'm glad u r healing. I'm very nervous. I have surgery this Friday to have my left ovary removed and possibly my right one too. He will also tack my cervix up so it isn't in the way of sex anymore. I'm wondering if I will go home that day or not. Is the pain bad afterwards. How long did u rest for. Should I let them remove both ovaries I'm only 34 but am done wth kids have four

I was wery nervous before surgery . About an hour before I was taken down I started bleeding very heavy and the pain was unbearable . I became really upset but the hospital staff were great . When I came round I wasn't in as much pain as I had expected , but I had been given pan relief . I was in hospital for2 days . I think you have to listen to your own body . I've always been very active but have had to do as I'm told . Week 1 . I slept a lot for the first few days and was in some pain . Codeine helped but this causes constipation . The hospital had given me a box of movical . Week 2 . Not as tired . I could go up the stairs without help and able to move around . No improvement in bowel movement . At one time I thought my stitches were going to burst because I was so bloated . This has now eased . Week 3 . I'm moving around as normal but still feeling pain and twinges so just got to be careful . I'm still off work . If I do some ironing I will get tired afterwards and need a little rest . 

The most uncomfortable side effect of the operation has been the hot flushes . It's been so cold outside yet I've been wearing short sleeved t shirts in the house . My husband has been amazing . He's been turning the heating off for me and he's been sitting on the sofa cold . They wake me up during the night so not having a full nights sleep . Going today for a check up  but I know I'm healing well . 

I understand how nervous you are but its such a relief when you are in the recovery room . I had both ovaries removed . I told the consultsnt that I didn't want to be in pain again in a couple of years and have to go through this again .

hope this helps. xx