Ovarian Cyst, waiting surgery, borderline or cancer, advice/help pls

Hi Beck

You poor thing xx I don't think I can offer much to make you feel better I just wanted you to know someone had read your post and feels for you. I would try not to worry - easily said I know. Make the most of every minute with your little girl and trust your doctor. She sounds very thorough and she will do the very best for you, she is being cautious and just needs to be sure.

Can you freeze some breast milk every day so she can have that whilst you are in hospital?. Try lots of different types of bottles too, you will find one that works.

Stay strong and just concentrate on making memories with your baby for now x

Hi Beck, 

Yes I went through much the same thing 24 years ago. I was pregnant with my first baby and about 2 weeks before he was due I started getting really bad pain which made me sweat and shake. They kept taking me in hospital, monitoring the baby and sending me home again.  No one had a clue what was wrong.  When he was 10 days overdue they took me in to induce him. I was in so much pain the night before I had him that I spent the night crying in the toilets, the pain was horrific.  

After I had him the pain eased a bit but I struggled sitting up when I had to get out of bed.  Three weeks later I went to the doctors and she did an internal and said she thought I might have a cyst. She made me drink loads of water and sent me right to the hospital for a scan.  I went home and then got a phone call to go back and see my consultant.  He examined me and I had another internal and then he told me I had a cyst as big as a grapefruit.   He said he would leave it two weeks to see if it went down at all.  I think they did blood tests too, one which was the CA125 test but I knew nothing about this test then.  

I went back and had another scan two weeks later and the consultant said it hadn't gone down so he wanted to operate the week after     I then had to see a doctor for some preop blood tests and other tests and I stupidly asked if it could be cancer and she shocked me when she replied and said she was sorry but yes it could be cancer as the CA125 test had come out high, although they never told me what the reading was, just it was very high.   I was devastated and I thought I wouldn't live to see my baby grow up.  I was nearly 28 years old.  

I went in the following week and had the cyst, left ovary and tube removed.  My consultant came to see me whilst I was in hospital to tell me that everything was fine and the ovary had been healthy and the cyst benign.   Apparently pregnancy hormones, endometriosis and a few other things can cause the reading of the CA125 test to be high so please try not to worry.   My cyst had twisted on its stalk and cut the blood supply off he said and that's what caused all the pain, well that and my baby playing football with the cyst     I was pregnant again with my second baby just two months afterwards which was a shock, so it didn't affect my fertility either.  I had my third and last baby 9 years after at the age of 37.   

I had another cyst last year which had a suspicious area on it so my consultant recommended an hysterectomy, so I had that last June and the cyst was fine. 

Sorry this is so long but please try not to worry, ovarian cancer would be very rare at your age from what I have read. Xxx

Just to add, my original cyst was 10cm and the one I had removed last year started at 4.7cm but by the time they operated about 3 months later it had grown to 10cm. 

I don't know if this will help, but here's my story. Before I start, I do want to encourage you to make sure you get a second opinion on everything and make sure it's a surgeon who specializes in ovarian cysts. In an ultrasound, I was diagnosed with a hemorrhagic cyst. But, it turned out to be fibrous. You never can tell what the cysts really is until they go in and check/do a biopsy. So, here's what I went through...

I'm 39 and have been trying to get pregnant. 11 years ago I had my right ovary removed.

In 2013 I had major surgery to repair my one remaining fallopian tube so I can get pregnant again. It's been about a year and a half and my belly is still numb in a large area surrounding the incision. This is because they cut through a nerve. I highly doubt it'll ever stop being numb.

In December of 2014, on ovulation day, I started having excruciatingly sharp pain in the area of my only ovary. The pain shot into the tip of my hip bone and radiated along the top of my pelvic bone, down the back and ended at my tail bone area. It also shot down my thigh on the same side. I went to the ER many times and all they saw were two small ovarian cysts.

About two months later, a horrible burning pain started and this was in addition to the already severely sharp pain I was experiencing. This burning pain caused the hip bone pain to radiate down the front if my pelvic bone and ended in my pubic bone.

After being pawned off from Dr to Dr, I finally found the most wonderful OBGYN surgeon. She was worried and did another ultrasound. One of my cysts had all of a sudden gone from being one inch to the size of a lemon. In the ultrasound, it looked like it was a hemorrhagic cysts. But, with the severity of my pain, my surgeon was worried my ovary was possibly twisted and dying. So, she got me into surgery the very next day. This was now three months after the pain started.

She went in laparoscopically and found a little bit of a lot of things. The cyst was fibrous, caused by endometriosis. My fallopian tube was suck with adhesions to my bowel. There was a bit of endometriosis on the right and left side of my uterus, but luckily not inside it. My bowel had some scarring and a little endometriosis. Along with all that, my one remaining tube that was repaired in 2013, had been blocked by scar tissue.

My amazing surgeon removed the cyst, scar tissue/adhesions, endometriosis, and unblocked my tube. She cured my pain, she's my hero!

One reason why I wanted to post all of this is to let you know that it's possible to actually get rid of the pain and save your reproductive organs so you can still get pregnant. If course, there are different circumstances for some, but not for all.

My surgeon was specially trained to remove ovarian cysts THE CORRECT WAY, with little to no damage to the ovary. Apparently, in medical school they're taught to just rip the cyst from the ovary wall, which will cause damage. My surgeon was trained to gently tease it away from the ovarian wall and stay away from the egg reserve as much as possible. It takes a long time to do such delicate work, but if you still want kids it's definitely worth it!

One other thing I want to mention is, each month when an egg is developing in the ovary, it develops inside a cyst. But, at that point it's called a follicle. Once you've ovulated, the follicle is then called a cyst. They typically go away on their own. I've had them linger a little, sometimes for months, since I started puberty.

Anyway, my first period since my surgery started a couple days ago. For the first time, I'm feeling cramps the way normal women do. I am having ovary pain, but that's normal this soon after surgery. Also, my period is heavier than I've ever had, insanely heavy. But, that's normal after this surgery as well.

I hope this info helps any of you put your mind at ease and educates you a little about what you may be going through. There's hope! I personally recommend the laparoscopic surgery, but only if you find a surgeon who specializes in this sort of thing, one who's had additional training in making sure they're as careful and gentle as humanly possible.

Thanks for your replies everyone, it really does me alot when all I do is sit and worry. I think the CT results coming back showing no disease outside the ovary must be a good thing. I'm just hoping the cyst is benign but even if it's borderline it's better than being told I have cancer! I just have to stay strong for my little girl. I don't mine about loosing my right ovary as I have heard about these things growing back so I just want it gone. Also the consultant said its unlikely my right ovary is functioning as the cyst has engulfed it. I will just have to focus on getting this surgery over and getting recovered and enjoying life again. She did say she isn't referring me to a cancer specialist and is happy to perform the operation at my local hospital so again another good sign. I suppose I need to look for the good signs at the minute and deal with any bad news when it's been tested and we know the facts. Thanks again everyone xx

Hi everyone. I'm just over 4 weeks post op and feeling fantastic. I still have slight pains but I think that's just everything healing. I received a letter this week just gone to tell me the cyst was benign. I am over the moon and feel like I have won the lottery!! Thanks so much everyone for your support xx