Just wondering if anyone else has been in the same situation, to help put my mind at ease. My pain started last year and gp suspected endometriosis, had a lap done and all they found were bowel adhesions/cysts, so no endometriosis diagnosis. Surgeon said my bowel being pulled out of place was causing all the pain, I got the mirena and then no pain at all for 9 months.
The pain started again around 2 months ago and instead of being a cycle, it's been constant everyday for 2 months. Had an MRI 2 weeks ago, but have to wait until the 30th of July for the results. Had really bad unusual pain last weekend and went to out of hours, the Dr suspected gallstones but said she didn't think it was related to my ongoing pain. Pain persisted and went to the GP 2 days later and they did bloods.
No contact from anyone and today I got a letter through the door from the NHS saying I have an urgent referral for both ultrasounds on the 29th. Had no idea where it came from so thought it was a mistake, phoned the hospital and they said I should definitely attend the appointment, something has been flagged that needs to be investigated and they aren't qualified to tell me more. So I phoned the GP and was told the GP put in the referral on Tuesday afternoon, when I asked if they could tell me my blood results they said it would be best to speak to the Dr, and now I have an appointment on Friday morning.
Sorry it's a really long one, but I'm really freaking out. I lost my mum really suddenly to Ovarian cancer last year, she was diagnosed and then passed 2 months later, the day she was due to start chemo. I just hate that no one is telling me anything and it's given me such a fright, but I'm just trying to tell myself maybe it will finally be a diagnosis of endometriosis or something. Has anyone been through this and it turned out to not be so scary?
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Jollie93
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Do you have access to your online GP records? You can see what blood tests they did, not that it might be much help.
A few years ago I was fast tracked for scan due to blood in stool but it wasn’t cancer. Most tests they do as a precaution, try not to over think it at the moment, not easy I know
Thank you, I don't have access to my GP records online but think I should apply for access now. Frustrating not being given all the info. Thank you, fingers crossed it's nothing serious 🤞
Definitely worth getting access, I use Evergreen and sometimes NHS apps, the NHS one shows hospital appointments as well. Many hospitals also have an app or website to see some records now, but they’ll only show up from when you register.
I haven't had this but I wanted to reply and send you lots of love on current situation and your Mum.
Same as Moon Maiden, I came here to suggest online GP records. That would at least give you more of an idea in the meantime. As already said, just because things are being looked at, it can absolutely just be a precaution and it sounds like they are doing the right thing and moving quickly on it. Hope your GP can shed more light on it very soon x
Thank you ❤️ Yeah I have applied for access so hopefully will be more up to date throughout the process, also managed to get an earlier appointment for tomorrow afternoon which is good. Fingers crossed it's finally a diagnosis and nothing too serious x
I recently had my referral upgraded to an urgent because my blood tests had an elevated CA125 level but went for the scan and I had large fibroids, endometriomas, cysts, adhesions etc but no sign of any tumours or anything else untoward. I know it's hard but try not to panic too much, endo and fibroids can cause elevated CA125 so hopefully that's all it is.
Thank you ❤️ That must have been scary for you, hoping/I'm sure I'm in a similar situation. Did they tell you during the scan or did you have to wait for your results? I've had one done privately before and she told me there and then about the cysts etc, but this one is with the NHS so not sure how it works but it does say results will be a couple of weeks. Also hope you're doing better now xx
They told me during the scan (it was NHS), if you explain your history and that you're worried then they should put your mind at rest. I had an MRI last week and got a CT scan this week (both private) and been told I should have results by end of next week xx
hun from my experience and seeing other posts from other people cysts and adhesions are normally caused by endo / scar tissue from. Previous operations or from an infection like pelvic inflammatory disease it would suggest that your bloods have maybe picked up on ca125 which is an inflammatory marker which can be found in people with endometriosis or cancer or inflammatory conditions. By having the ultrasounds they will rule out things maybe they are checking the size of cysts etc .
A former colleague of mine had really elevated ca 125 levels too following a blood test and was put on the urgent pathway with possible ovarian cancer. It was fibroids. Same for a good friend. Hers was in the thousands and they saw something in scans. She had an urgent hysterectomy and was told it could well be cancer given levels kept rising. That too turned out to be a HUGE fibroid and cysts. One had endo, one suspected endo. I know it's hard (I developed a pre-cancerous condition which led to me having an urgent hysterectomy and the wait for each test result to come back pre- and post-op was horrible). Luckily they caught everything in time before it had a chance to develop into anything nasty. Elevated ca125 levels are quite common with endo, fibroids etc. as Cocoacupid said.
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CA125 level 89
53, Bleeding on HRT and history of Endo
