I'm 23 years old. My periods had been fairly normal until last month Feb 13th I had a severe abdominal sharp aching during my period which got better day by day as the bleeding stopped, it originally took me to AE, ever since my period went it's been like a dull aching, nothing even uncomfortable and no other symptoms.
My urine and stool test was normal. The ultrasound found an 'interesting' 54mm complex mass. My CRP was raised in my bloods. The sonographer said at the time it didn't look nasty like cancer. The report specified it could potentially be an endometrioma or tubo ovarian abscess. I then was put on antibiotics but dull ache is still there. 7-8 days later my CRP is normal, my swab shows no sign of STI or infection, however my CA125 is raised at 75.
I'm worried because I've read online that 90% of pelvic mass with a high CA125 is a very high signal of malignancy.
I'm due to stop the antibiotics (which might be pointless anyway) on Thursday, and my period is due then too, I'll get the MRI report on Tuesday.
Does anyone have any similar experiences with a potential endometrioma or complex cyst with high CA125, or any advice?
Written by
heyimalion
To view profiles and participate in discussions please or .
hi. Hope you're comfortable today. Yes I had a ca125 of 2146, after a lot of messing about they eventually found a large chocolate cyst and endometriosis. It was very high and i had to have various scans to rule out anything lurking but the specialist put it down to the cysts and the stage 4 endometriosis, it dropped to below 200 after surgery which they were pleased with. The MRI should help them to diagnose what the mass is. Have you got a diagnosis of endometriosis? I got a build up of pain with the cysts which is how I ended up in a&e. Are you on any medication? Take care. Tf xx
Thanks for replying. I've not had any diagnosis yet, am hoping the MRI will show more insight on Tuesday. It was mentioned I could have a laporascopy too.
I saw on this website medicinenet.com/ca_125/arti... 90% of raised CA125 above 65 is malignant, your story over rules that but obviously it's worrying to me, I'm 23 and have never had anything like this. I probably shouldn't be looking at things like that right!?xx
it is a very scary experience to go through, I was in hospital when the results came through and I was having a ct scan before I knew it as they said it was alarmingly high and told us to prepare for bad news. The MRI should help but my endometriosis didn't show up on either the ct or MRI. Yes they told us anything over 35 is investigated so with it being so high it was a very stressful time whilst the right people checked the scans. Do you have support whilst you're going through this? It is very hard not to google, I really panicked myself with what it could be. Have you seen a consultant or is that who you are seeing on Tu for the MRI results? Xx
Hey, yes I'm seeing a gynecologist consultant and she will be the one giving the results on Tuesday. I atleast hope it'll give me some relief that it is benign. Because I have a 54mm complex cyst that showed up on an ultrasound, I'm hoping the MRI will tell me more. Laparoscopy she mentioned would be the next step which is also quite scary! I had no symptoms of endometriosis before my last period so it's strangely quite acute if it is an endometrioma. Your story gives me hope though. Xx
I didn't have symptoms till the cyst ruptured, in hindsight I always struggled with bad cycles but just thought it was normal. A lap will give you answers although if its endometriosis it's not always easy to spot and despite mine being stage 4 and one of the worst the specialist had seen, the general gynecologist missed most of it 🙉.
if you do have a lap, I was very scared, but a friend is a surgeon and came to see me and said during the entire process from being put under ga to recovering on the ward you are constantly monitored and probably the safest you will ever be with so many people there to keep you safe. I was still really nervous but it did help.
I suffer with what I thought was normal painful periods on days 1-2 but perhaps it was something more. I've always wanted to get pregnant in the future, do you know what the best solution is to remove an endometrioma cyst in a way that preserves fertility? I remember the consultant talking about using heat to burn it off but I've heard this can make it worse. Xx
Yes, I had an ultrasound that showed two 6cm complex masses and my gyno was concerned my left cyst could possibly be malignant. He ordered a CA 125 test and mine was at 75. He was about to go in and remove the left ovary and left Fallopian tube and my primary doc was furious and demanded I get a second opinion. My new oncologist ordered an MRI (Unlike my gyno) and said she was not concerned it was malignant, but she scheduled me a diagnostic surgery to see if I in fact had endometriosis and a whole team ready to remove cancer if she saw it there. She went in and found I had stage 4 endometriosis and that my cysts were not concerning her as cancer and she referred me to my second surgeon who specializes in fertility/endometriosis. He excised my endo and removed my two large cysts that ended up being endometriomas. (I finally got biopsies to confirm cancer free!) All this removed and at the same time he saved my ovaries and tubes. It’s scary to think that my first gyno would have been too aggressive with removing my ovary/tube and possibly forcing me into early menopause (I’m 33) and also ruined my chances of maintaining my fertility. I’m very thankful I got the second opinion. Just remember that the high CA-125 levels are likely from endometriosis and try not to over worry it’s cancer. Keep on with each step and make sure to go to a endometriosis specialist if you can to make any decisions on your body. Also if you do have endo, be sure to find a surgeon that specializes in EXCISION, not ablation. They’re more trained and more likely to be able to give you accurate diagnosis and the best treatement for you! In hindsight I wish I could have gone to the endo specialist first, yet I was very grateful that I had the oncologists on standby making sure it wasn’t cancer before treating the endometriosis. I’m just grateful that my primary doctor pushed me to get a second opinion and it led me to such great doctors who truly cared for MY best outcome. Try not to be scared and research who the most experienced docs are and go to them for treatment♥️
Oh wow that sounds like a long journey, it must have been such a nice relief to get the biopsy clear back too.
The meeting I have on Tuesday will tell me of the MRI results and whether I need a laparoscopy or not. What would you recommend I do or ask when it comes to questions regarding my fertility? Is excision 100% the best way to preserve fertility? If it's endometrioma do they take the whole thing out or just drain it? Thanks for all your help!
The most important thing that will tell you if you need a laparoscopy is your pain so keep a close eye on that if it’s changed suddenly. Even if they say your cyst is fine being monitored. My pain didn’t get insanely bad until I was 27 but I wish I had been diagnosed earlier so this is awesome that you’re already checking it out! I wonder when my cysts first formed because I felt immense pain for 5 whole years before finally getting care! (No insurance for so long ) Plus the only reason I found out and actually got diagnosed is because of my cysts (ultrasound) so I’m almost grateful I had them to actually have a reason to go inside and look! They went in, drained them, and then excised them because of their size and all my pain symptoms. I’m not totally sure how damaged my ovaries are since this was extreme, but my doctor said he’s confident they’re functioning. Just knowing he’s experienced doing this procedure was comforting to me. I’d go to a someone that specializes in fertility if you can because they’re much more educated and careful with your lady parts. They also ran a test where they put dye through my fallopian tubes to see if they were clear and they were surprisingly! He also did a hysteroscopy taking a camera and peering inside my uterus to make sure that tissue is healthy. He was just so thorough and I feel so good knowing he went above and beyond to give me a thorough checkup! The best docs will be kind and patient with you and not only answer your questions but they will teach you something about what’s going on there. The surgery made me nervous but I was so glad to at least know what was going on! It was sooo worth it! Make sure to make a list of questions and even reading through these forums about what should be asked is a great idea. You are your own health advocate so do your research. Even googling what to ask your endometriosis specialist. I have read over and over that ablation has made things worse for women and then they go to an excision specialist who has to cut out the scar tissue from past ablations anyway and it’s a big mess. So best to avoid this first! Bottom line is that I learned the most from talking to women that have gone through this too rather than listen to the first health advice you get from doctors that may know less about the disease than you do. (Aka my regular gyno)
Well my pain isn't even uncomfortable at the minute, it was only super bad during my last period. I don't have any other symptoms right now, everything is fine and dandy. Before my CA125 I had a slight pain and its on and off, my periods expected on Thursday though so I'm preying it's not as bad as last month. Before last month, I've had cramps every month but just thought they were normal, nothing severe and painkillers helped so it's all come on very acutely if it is endometriosis. I'm definitely considering getting a second opinion, especially if my gynecology consultant only mentions ablation being her only option. How difficult is it changing doctor? Where could I find a fertility specialist? I feel like I need a doctor like yours!! My current one has all my scans and reports etc, it's all done privately because my anxiety is through the roof but it's also like she's in denial of all my questions regarding anything severe, maybe because of my age, maybe because the MRI hasn't been reported back yet. You're so right, it's important to feel listened too in sensitive matters like this. 🌸
I also keep reading that you can still have endometriosis even though your pain seems normal. I would search for women with endometriosis maybe in your area and ask them all who they go to. Google specialists as well. Im in the United States so I’m not sure if it’s a different setup compared to where you are. Where are you located? I was referred to my specialist from my oncologist who was referred to me first by my primary doctor. If going on your own, I’d look for a doctor that specializes in fertility. Mine was listed as specializing in IVF but also highly trained in endometriosis. I just called their office and set up an appointement as a new patient and had to make sure his office accepted my insurance plan. I’ve read that not all have specialists in their area so I’m hoping you find some!!! 🙏🏼
No matter what- YOU have the choice to decide what is done or not done and it’s worth taking a look inside to address it all sooner than later. Sounds like your cyst is about the same size as mine were which is a great reason to investigate.
Hello, I don’t know if this reassures you at all but I could have basically written your post! No symptoms, sudden pain & bleeding on lifting my daughter out of the bath, raised CA125, 5cm cyst that they couldn’t quite identify!
This led to: monitoring of cyst, a year of tests & appointments, a laparoscopy six weeks ago to remove, diagnosis of grade 3 endo and they had to remove my tube as it was so damaged.
I guess the most important thing to tell you is that my GP took my CA125 levels at my very first appointment and found it was high - think it was 75 for me too. I spent two weeks in a panic. They retested and it had come down. What he never told me - and the consultant was amazed - was that if you are bleeding when they do that test, your CA125 will naturally be high! My friend told me this exact same thing happened to her, just yesterday. So if you were bleeding when they did it (and it sounds like you were) it will have been high.
I hope this helps. If you have any questions about any of the rest of it, let me know x
Hey, thanks for your reply! I had the CA125 blood test done just before my MRI scan, I wasn't bleeding at the time, I was roughly mid cycle. I know it can be raised for other reasons, my consultant seemed to shrug it off and didn't seem worried about it, saying she'd only been concerned if it were in the hundreds. I'm only 23 and this is quite an acute problem, so I'm guessing cancer is unlikely, but reading stuff like 90% of pelvic masses with raised CA125 is malignant has really scared me😳
How was your laparoscopy performed? As in what method of removal? Xx
I’m ashamed to say I have absolutely no idea! They told me very little about the procedure in the hospital. I only realised how little I knew when I got home. I have my follow-up on Wednesday so I’m going armed with a list of questions!
Try not to worry (easy to say, I know). It seems like endo can also cause raised levels, from reading the other posts. Hope you go on OK x
My CA 125 was 1826, and I am thankful to report that it was the result of a grapefruit sized endometrioma. At 23 it is very likely that is the cause for you, too. You are on the right path right now, so hopefully you will have answers soon!
CA125 is not a reliable test of cancer in pre-menopausal women because there are so many other things that can raise CA125, including endometriosis, an endometrioma (chocolate cyst), a benign tumour, fibroids, and in fact just menstruation can do it. One reason to do the test in the NHS is that you may get moved through the system more quickly if you do have an elevated CA125 just to rule out cancer. The sonographer will be seeing dozens of benign cysts a week and wouldn't falsely reassure you (although they're not supposed to say anything!).
I think that stat you found is actually wrong, possibly mistakenly taken from this study, which said that 90% of people who had a CA125 > 65 and nomass had a malignancy:
ncbi.nlm.nih.gov/pubmed/935... And that study found that the post-menopausal patients were more likely to have cancer and the pre-menopausal women were more likely to have benign conditions eg endo.
Thank you for your reply. I understand it's unreliable in premenopausal women, but the research findings online are concerning. This was the website I saw the that a pelvic mass with a raised CA125 above 65 has a 90% chance of malignancy medicinenet.com/ca_125/arti... but I wouldn't be surprised if this was incorrect with other stuff I've read. I've read elsewhere statistics ranging from 50%-75% chance of malignancy. So it's all driving me a bit mad with anxiety. What is reassuring, even though they werent meant too, is that the sonographer said it looked 'interesting' but not nasty/cancerous and I only experienced the bad pain with my period. Anything I ask to my consultant about cancer she seems to brush off like it's nothing. Thanks for your help 🌸
Also I had a look at the link you posted, it seemed to specify patients with a high CA125 and no pelvic mass had 90% chance of being non-malignant, but with a complex pelvic mass that I have obviously the chances of that are slimmer x
Ugh, apologies, not sure how I read it wrong but you're right! I do suspect that's the study the medicine.net link is referring to and we don't know the detail of the methodology, how many participants were post-menopausal vs pre-menopausal, etc, and it's just one study.
But a lot of people on this forum, including myself, have had complex pelvic masses which turned out to be benign endometriomas. Statistically at your age it's far more likely to be something other than cancer, which I suspect is why your consultant is not worried. In any case, whatever it is has been caught very early and will not doubt be removed ASAP.
You need to get it drained and excised right away. Don't wait otherwise you might get internal bleeding.
My friend had her 100-mm endometrioma removed via excision surgery/ laparoscopy performed by an experienced endo specialist. She went home with both of her ovaries and is now very well and pain-free.
DO NOT let a regular gyno surgeon perform surgery on you. Go to an endo center or endo specialist.
You can find one in your area in the Surgeons International file on the Nancy Nook group on facebook.
Hi. When my 9cm cyst was discovered on my ovary, my CA125 was raised to over 500!!! I have never ever been so scared in my life. However it then dropped down to around 70 which is apparently quite normal for endometriosis suffers due to the inflammation. I was diagnosed with stage 3 endometriosis after laparoscopy and removal of cyst xx
Wow! that must have been scary for you, what a relief it went down! Yeah I'm hearing lots of stories that it can be raised due to endometriosis, I think my mind would be more at ease once I get the official diagnosis. I thought CRP was the blood test for inflammation? My CRP was originally high but then went down to 1 which is normal, whilst my CA125 (tested at same time) was 75. It's all very confusing to me 😥 did you have any of the endometriosis removed by the laparascopy? If so, what method? Thanks for your advice!Xx
Hello! I’m undiagnosed but am in a similar position to you. Will you update us with your progess? From what I can gather a raised level is almost the norm with endo. Good luck will be thinking of you, Lauren X
May I ask what position you're in? It's seeming that way, everyone has been so kind and reassuring in their responses so I'm hoping it's to do with the potential endo. Will do, thank you xx
My story is very long! Three years ago went to gp with severe pelvic pain, was told I had a mass (now can’t actually remember which side) on my ovary which they could feel on examination. I was sent for emergency ultra sound and was told it was normal. I did not have any bloods taken. Was very anxious as gp could feel something but Three years on I have tolerated the pains and carried on, last cycle pain (March period 4/3) was unbearable...very light period but pain was 10/10 (almost passed out in a supermarket) one week on I now feel like I’ve been beaten up. Right ovary pain has lessened but still uncomfortable (I also have c section scar and hernia scar which appear to be linked in with cyclic pain) ..pain elsewhere very sore including under ribs, lower back, legs. Currently waiting for bloods, us scan and then shall go from there. My pain appears to be similar to what you’ve experienced this month and I am queried cyst. I shall keep you updated with my progress from here. My gut feeling is endometriosis but I could be wrong...we shall see! Endometriosis seems a huge possibility you so do try to not worry re blood results they do not diagnose you with anything and as someone who works in healthcare bloods are not actually the best diagnostic tool as they often read a million and one things but can’t diagnose the exact reason, very good for whittling down and leading us in the right direction but never a diminutive answer ...I am just like you though and worry terribly over things like this...always try and remain calm and in control x
Yeah it does same similar in that it came on acutely! Most sufferers I understand have years of agonizing pain and the average diagnosis of endo is 8 years or something, which is crazy and I'm not having that! ✋so who knows, yes keep me updated too, wish you the best of luck Lauren xx
Hi, hope you are doing better, but it might be high cuz of endometriosis. Just an adviced if you get surgery make sure its with a specialist, there is only a few out there. Dont just go with any like i did and now i need surgery again, this time im going with someone thats a master in endometriosis . Good luck to you, if you have fb look for nancy nook vry good info for everyone.
My MRI found multiple haemorrhagic cysts, and the MRI report specified the scan pictures strongly indicated endometriosis. My right ovary is enlarged with cysts within it. Some are haemorrhagic, some are potentially polycystic (but I don't have the syndrome) I know with the condition it can result in endometriomas but they weren't really specific on this, more that it was haemorrhagic ones. It's confusing to me, because she's 99% sure I have endometriosis but wants to do another ultrasound scan in 8 weeks to see if these cysts resolve themselves or have grown, but endometriosis isn't resolvable by itself, so I'm wondering if she's just diagnosed me with 2 different things 🤦
This has all come on quite quickly, my symptoms only started a month ago with February's period, now I've got my March period & have quite a certain diagnosis of endometriosis.
If anyone's had anything similar any advice is really helpful xxx
Hello! My advice would be not to neglect the situation. I am from Russia and I had the situation very much like yours. I was left alone, my cyst grew and I had to go through a laporoscopy. My CA125 was something like 68. But it was due to endometrioma. I also had suspicions that it was policystic, but finally it turned out to be endometrioma.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Endometrioma & complex cyst - confused!
Vomiting daily any advice?
Advice pleassee :D x
Laparoscopy Booked Today - Any Advice?
