I'm so sorry to bother you all, I am in the UK AND AM 36 years old. I have been having some awful problems for the last two months. Originally went to the doctors beginning of this year for stomach pain, worsened after eating, bloated, pelvic pain and side pain, and needing to empty my bladder all the time but having to push my pee out? Also change of bowel habits alternating diarhea and constipation. Doctor ruled out Uti prescribed two loads of antibiotics and said maybe infection somewhere and off I went. Finished the course it's made no difference. Symptoms still the same however I'm also now constantly period cramping. Back to the GP and had bloods taken last week, CA125 level was raised to 40. Family history of OC and dropped 7lb in the last 3 to 4 weeks. GP done an urgent suspected cancer referral. I rang today to see where my referral is and they told me it's been classed as urgent with a 15 month waiting list but doesn't warrant the 2 week pathway. I have small children that depend on me and this has absolutely terrified me, all the guidelines I have read states a scan should follow a raised Ca125. Has anyone experienced this? I have contacted private hospitals they won't do private imaging without a consultant letter, which I don't even know if I have one yet, and they won't let me pay for private consultant because my CA125 is raised?
So sorry for babbling on I'm just at a lost and very worried.
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Mamma12345
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Hi, you’ve done all the right things and this treatment isn’t good enough!
I would suggest (a) going back to your GP and asking them to accelerate the appointment for you (b) ring the Ovacome helpline and asking for their suggestion or last resort (c) turn up at A&E with exaggerated symptoms and see what happens!
So sorry to hear all this. Sounds like you need to go back to your GP and ask/put pressure on them, also put it in writing (So clear paper trail) and asking why, with a family history of ovarian cancer, and why if you have a raised CA125, and why becasue you do have what could potentially be symptoms ovarian cancer, especially the losing of 7pounds (I'm not doctor so of cousre still could be other things, so needs to be rulled out if not ovarian cancer.) you do not meet the threshold for the urgent 2 weeks pathway and please could they look into getting you seen within the 2 weeks as a matter of urgency and let them know just how much pain you are in. lWishing you good luck and really hope you get the proper medical help you need whether this is something else or ovarian cancer. Sadly, as we all know on this forum, here in the UK and the NHS we have to advocate for ourselves.
Hope this works. If not you I'm guessing you might be able to see a private oncologist (refererd by your GP) to do the scans and diagnostics, but would cost loads I'm guessing and still the hassles of getting referred back in to the NHS. That said, might be worth discussing how as last resort with GP if that could work, if my first suggestion doesn't work.
ps another thought is calling Ovacom help line or the Target Ovarian helpline who can also give advise. Really wishing you well and hope that things get much better very soon.
Thank you all so much for your replies, I will ring the Gp back Monday when they are open. I just can't get my head around why or how they can dismiss this when it's the official guideline and protocol? I'm absolutely in shock. I'm guessing the weight loss Is due to the fact that I'm unable to eat much as I feel so full and then the bloating increases which is putting pressure on my ribs which is very uncomfortable. I am hoping the GP on Monday can come up with some other solution 😪
You're very welcome, really hope your GP can get this sorted. Absolutely the mind blows how or why they would dismiss it given the offical guidliness, hopefully getting back in touch and putting it in writing will get someone in gear....I was initially dismissed and told by a doctor at hospital to go home and have a glass of wine (!) needless to say lot of red faces and trying to cover things up weeks later when we got to the bottom of things! Really hope you won't be uncomfortable for too long and this all gets sorted asap
Thank you, I'm so sorry to hear that you was initially dismissed. It's very frightening that these risks are taken. I know that it could be numerous things going on with me and maybe not anything malignant. But surely a scan would be better than taking a 15 month risk to rule out anything more serious. This situation is obviously so scary for any woman regardless, without this extra stress and worry x
Hi Mamma12345. The treatment you have received is simply well below acceptable. Urgent but a 15 month wait makes no sense. Over 40 CA125 and a tick list of symptons. I would ask what does it take to get 2 week referral. Where are you based?
Thank you for your reply, the GP did refer it as urgent suspected cancer through the 2 week pathway but it's the consultant who triaged the refferal has decided this is not to be and instead has put me on the non suspected cancer list, with as they told me a 15 month waiting list. I am based in Wales x
hi I am older with some similar pains and eating problems etc. post one year I had to push and push, two visits to A & E who recommended MRI one time Transfer vaginal ultrasound another. Despite having strong female history of breast & some womb cancer my GPs did not react with urgent referral. My CA125 was normal 12. Also had a slipped disc at same time which confused everything. I insisted on private referral at a local hospital for seeing a spinal consultant and paid for MRI through him. MRI confirmed slipped disc (which GP had already put me on a referral to muscularskeletal pathway). I asked him if he would be happy to include a pelvic MRI alongside my spinal (I had to pay for this but ok was desperate). He agreed.
I had a 6cm cyst on left ovary, unknown endometriosis lesions & extensive adhesions where womb & omentum were stuck to abdominal wall. I went back to GP with results. Still did not react faffing about making enquiries at NHS hospital about what to do. After one month nothing happened had enough. Looked up NICE guidelines and sent a letter to GP about what I expected to happen and got a two referral this time for gynaecologist.
Appointment happened 3 weeks later, surgeon dismissive & abrupt but agreed to do laparoscopy. Happened 6 months later😲. They found cyst, dealt with adhesions and removed ovaries, tubes. Post op all pain disappeared a few weeks after recovery. Pathology of cyst came back with small borderline tumour. As I’ve had surgery are now watching me every 3 months for 5 years. Stage 1A so decided re surgery no hysterectomy needed.
Moral of story do not give up pestering GP. Us women know when something isn’t right in our bodies. You can see GP privately at private hospitals now less cost than a consultant. They can advise you and refer you within that private hospital then Uk. Good luck
So sorry to hear you had to endure all of that. I am so glad that you eventually got it all sorted, although it needn't had been such a stressful event for you. The more I read stories like this, the more I can understand why so many things are left for so long. It's totally unacceptable that we have to push so hard when there are obvious signs that something is wrong. You are definitely right, us women do know our own bodies. We carry children, we deal with menses for decades, we know when something is not normal or right for us. Thank you for all your advice, I will be getting back on to the GP tomorrow. I also managed to get a private consultant appointment for the end of next week. Not happy that I should have to pay for this with the NICE guidelines not being followed, but also can't take any risk when I have 3 beautiful children to look after. Thank you x
I was diagnosed with stage 3 OC in 2023. I went privately for a scan with my symptoms. I have flitted back and forth between private and NHS for the last 18 months. When my CA125 was rising again and the wait to see my oncologist was too long I went to see him privately. I’m now having 2nd round of chemo on the NHS. I would go to your doctor and ask to see a private oncologist. Yes it is expensive. CT scan over a 1,000. 15 months is too long to wait and hopefully this isn’t anything sinister. Please call your doctor for a private a referral
You have definitely done the right thing . Do not be fobbed off trust your own instinct.
My CA125 was only 34 - it is not a good indicator for some ovarian cancers such as clear cell. I would go back to your G.P to push for an urgent 2 week referral.
The first time I went to the G.P I was dismissed with a UTI diagnosis....then the second time I managed to convince the G.P.. ... she sent me for an ultra sound. I was diagnosed with a dermoid cyst even then the hospital reassured me that it was not anything sinister. With other ultra sounds i was given a diagnosis of adenymyosis and endometriosis...offered very limited option s and my gut instinct kept on at me and went through private health via my works scheme. I opted for a hysterectomy...this was cancelled during covid. When I did manage to have the hysterectomy and get the histology results my consultant ....he was the same one I had in the nhs at the hospital was feeling a bit guilty and red faced ,as all along he said he didn't think it was cancer as my ca125 was 34....but by the time I had my op it had risen to 54.
The rest you can read from my bio. I truly believe no one knows your body like yourself. I had a bloated stomach and other symptoms.
I agree with some other ladies a second opinion is needed. 15 months is ridiculous!
I also agree with the lady who said to go to A&E and tell them you’re in pain and your symptoms. They should then give you a CT scan there and then ( though you might be a few hours there ).
All the very best to you, don’t accept any of this and if you feel a nuisance ( you’re not!) think of it as doing it for your young family. That’ll give you the push you need.
Thank you all, I just wanted to check to see if this 15 month waiting list is because my level is only at 40 and thought maybe that's why, but after reading more I can see this shouldn't be the issue and it still should be a scan within two weeks. I can't understand on what basis they have made the decision to do this. It's mind boggling. I will try and get more answers from the GP tomorrow.
Just wanted to ask too, another weird symptom I forgot to mention on here and I haven't mentioned to the Gp as I didn't think it was relevant, and now I'm wondering if I should mention it to the consultant. After everything I eat, I'm having really strange noises in my stomach more towards my right side and can feel like crackling sensation along with these really loud noises that come from my stomach. I've had this since the start of all my symptoms but I didn't know if it was relevant to mention or not. Thanks x
It may or may not be relevant, but mention it anyway, it can't hurt. And exaggerate all your other symptoms and say that they're getting worse. Download the symptom tracker from Ovacome and fill it in for two weeks, if you haven't made any progress by then, and take it back to your GP. And try A&E too, though they are hopelessly overloaded no matter where in the country you are.
I would mention this too. Before I was diagnosed, I had lots of really loud wind from both ends. It could be a symptom or it could just be something more innocent but you just need peace of mind.
Be a nuisance and then you’ll get help! ( Though you should have been listened to in the first place.)
Hello all, just thought I'd update you all because you have all been so helpful. I ended up in a and e with horrendous left side pain and really distended abdomen and pelvic pain. Had an internal ultrasound which revealed fluid around both my ovaries so they said possible a ruptured cyst, they found my ovaries very close proximity to my womb suggesting endometriosis and they found my blood vessels in my pelvis are very wide and swollen and told me I had pelvic congestion syndrome. I have a follow up at the gynae assessment unit in 3 weeks. Hopefully they will come up with a plan then and hopefully re do my CA125 to make sure that's coming down because I am still in so much discomfort.
I had pelvic congestion syndrome. . I’ve now been treated. My symptoms were like yours. So painful isn’t it ? Glad you’re getting answers. Best of luck with your treatment …
Thank you for you reply, how was it treated if you don't mind me asking? I have never heard of this before. It is so painful I can't even walk far without the raging burning in my pelvis and ovaries. Thank you
I had much the same experience as you with symptoms. Pain , bloating , fatigue , bowel and bladder problems. I had cCA125 etc and an ultrasound. But once the NHS couldn’t find anything they pretty much left me to it. Just gave me tramadol. I couldn’t walk far or stand for long without pain. So I knew something was badly wrong so I had no choice but to go private. So I had an MRI and CT which showed the huge veins. I then went to a clinic called the whiteley clinic. They are the best in pcs. I had both ovarian veins and iliac veins coiled. This basically kills of the culprit veins that are causing the pain and the blood reroutes to other veins. My bloating and pain has gone. So have all my other symptoms. You might struggle with the nhs to help you though. They repeatedly refused to refer me to a vascular surgeon or an interventional radiologist which is what you will need. Gynea is not much good. It’s not a Gynea problem it’s a vascular problem although they may refer you if you kick up a bit and ask. Hope that helps. Here if you need any guidance ..
I was diagnosed in Scotland, so it may be a bit different. My GP referred me but he also got me an urgent ultrasound in parallel. The ultrasound results catapulted me up the priority list with the oncology team. Might be worth discussing this as an option with your GP.
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has anyone had raised ca125 but was not recurrence?
I NEED HONESTY.......
High CA-125 and a clear ultrasound!!!
Scared I may have ovarian cancer 
New to Forum - Gynae/oncology urgent referral
