Complex cyst, high ca125 and scared

Hi everyone I've been lurking around here for a few days reading some stories and trying to find some similar to mine. 4 years ago I had 2 large dermoid cysts removed of my ovaries surgery was a success and I went onto have another baby. I have 4 kids altogether, 1 sadly was stillborn and 3 other beautiful kids. So, for a few months I've been getting niggly sharp pains on my left side that would come and go especially when I think I'm ovulating, and really bad on both sides during my period. I went to my doctor who ordered a ca125 because of my pervious history of cysts. This came back raised at 125. I was fast tracked to my local gynaecology depot. They did an internal ultrasound and found a muticystic cyst on my right ovary. He also made a comment about a little free fluid. The left ovary where I'm getting the pain looked fine. My gynaecologist urgently referred me to get an mri, which I have now gotten and will get the results next week. I am beyond scared, my anxiety levels are through the roof. My own doctor had to prescribe me anxiety meds to try and function, as I wasn't eating or sleeping and crying all day. Anyone any reassuring stories for me before I absolutely go out of my mind
Forgot to say I'm premenopausal, just turned 40.

Hi, there, I had high CA 125 with complex cysts on left ovary. Turned out I had endometriosis, though the cysts themselves were hemorrhagic cysts. What they don’t tell you is that ca 125 isn’t *just* a tumor marker, it can be high with peritoneal inflammation, so you may have had high ca 125 with your dermoid cysts, too. It sounds like they are acting pretty quickly - which sometimes is also scary bc of how long medical care can take too! I can’t tell you I know it will all be fine, but I can tell you it’s possible you will be! A lot of us who get cysts get them repeatedly. I did! Hang in there!

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Originally Posted by Bee07 Hi everyone I've been lurking around here for a few days reading some stories and trying to find some similar to mine. 4 years ago I had 2 large dermoid cysts removed of my ovaries surgery was a success and I went onto have another baby. I have 4 kids altogether, 1 sadly was stillborn and 3 other beautiful kids. So, for a few months I've been getting niggly sharp pains on my left side that would come and go especially when I think I'm ovulating, and really bad on both sides during my period. I went to my doctor who ordered a ca125 because of my pervious history of cysts. This came back raised at 125. I was fast tracked to my local gynaecology depot. They did an internal ultrasound and found a muticystic cyst on my right ovary. He also made a comment about a little free fluid. The left ovary where I'm getting the pain looked fine. My gynaecologist urgently referred me to get an mri, which I have now gotten and will get the results next week. I am beyond scared, my anxiety levels are through the roof. My own doctor had to prescribe me anxiety meds to try and function, as I wasn't eating or sleeping and crying all day. Anyone any reassuring stories for me before I absolutely go out of my mind Forgot to say I'm premenopausal, just turned 40.

My CA125 was chcked before going to surgery. Ad previous history of ovarian cysts and previous surgery revealed endometriosis with adhesions. My gyno told me the same. Endometriosis can cause a hugh CA 125 depending on severity. My endometriosis was back and I had hysterectomy ( discussed the possibility thoroughly before surgery. Not a surprise) Don't wory yet.

My ca125 was also high but it was due to my severe endometriosis. It can cause that reading to be high. After surgery I was re-tested, and my results came back totally fine.

Thanks everyone,

I've never been diagnosed with endometriosis, is this something that can occur at any stage of life? I'm 40 and have had a previous operation for cysts and endometriosis was never mentioned. On my left hand side where there was no cyst on the ultrasound is where I have the most pain. I was thinking it was scar tissue or something. Can a ultrasound miss a cyst on an ovary? I suppose I'll have answers tomorrow when I get the mri results and speak to the consultant. I'm shaking like a leaf at the thoughts of the call to be honest as have such a bad feeling.

Yes. I was 23 when everything hit the fan for me, but I had obviously had endo for quite awhile. My case was so terrible that the OR nurse deemed me the worst she'd ever seen in her 30 year career. I never had an ultrasound miss a cyst, but ultrasounds don't usually show endometriosis. So, for example, your left side could be affected by endo and that wouldn't show. Having an MRI is great, and I hope your results are clear. Keep us posted! I am so so sorry that you are dealing with this. <3

I'm so sorry you are dealing with that at such a young age. It sounds rough. I'd never heard of endometriosis until I started googling. I've just turned 40, I was told in my 20s I'd polycystic ovaries, this never caused me any issues as was able to have kids without any help. I had an ordinary simple cyst during one of my pregnancies that went away by itself. Then at 35 had a ultrasound for pain under ribs and 2 dermoids were found and later removed. Now it's this complex cyst on my right ovary and high ca125. I'm done with all this hassle. I'd be happy yo get it all taken away.

It is sad to me that you are just now learning of endometriosis. I'm so sad that doctors had never mentioned it to you sooner. Endo needs to be discussed WAY more than it is so that women can be aware of it and not be blindsided.

It definitely has been rough, and having my uterus, cervix, ovaries, and tubes removed was/is also not a breeze. But I am better off than I was with them, so at least that is helpful to remember. I pray that your outcome will be what is best for you! Keep us posted!

Hi everyone, thanks for all your support you gave me it was so reassuring and helped me when I was distressed. The consultant phoned me, the mri came back as nothing suspicious or sinister showing. He said there is no evidence of a cyst on my right ovary. What he though was a cyst on the ultrasound is actually just how my right ovary now presents after previous surgery 4 years ago. I have a simple 2cm cyst on my left ovary but nothing suspicious about it. I also have a bit of a hernia where my scar tissue is. All my blood tests other than the ca125 came back normal. I'm now rebooked into get my ca125 rechecked. He said that if it's still elevated it will have to be investigated more. My last ca125 was taken on the last day of my period so that could of elevated it. He also said that he suspects the pain I'm getting from my left hand side is scar tissue. I'm so relived. I wanted to update this post so that anyone else that has suspicious looking cysts and high ca125 can be reassured thst it isn't always sinister.

I am so happy to hear you are relieved and that it wasn't sinister! Great news!

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Originally Posted by Bee07 Hi everyone, thanks for all your support you gave me it was so reassuring and helped me when I was distressed. The consultant phoned me, the mri came back as nothing suspicious or sinister showing. He said there is no evidence of a cyst on my right ovary. What he though was a cyst on the ultrasound is actually just how my right ovary now presents after previous surgery 4 years ago. I have a simple 2cm cyst on my left ovary but nothing suspicious about it. I also have a bit of a hernia where my scar tissue is. All my blood tests other than the ca125 came back normal. I'm now rebooked into get my ca125 rechecked. He said that if it's still elevated it will have to be investigated more. My last ca125 was taken on the last day of my period so that could of elevated it. He also said that he suspects the pain I'm getting from my left hand side is scar tissue. I'm so relived. I wanted to update this post so that anyone else that has suspicious looking cysts and high ca125 can be reassured thst it isn't always sinister.