I've just got home after a 12 hour stint at A&E mostly in chairs and so long as blood tests were lost. Spent an interested 4 hours with Harold who is 90, blind and his daughter who loves Cliff Richard!
So quick story so far:
Female 43. Pretty healthy. High blood pressure occasionally. Haven't we all? Mirena coil so no periods.
Back in early September I noticed that my mons pubis ached and was really tender to the touch. Very weird - I even had to google my own anatomy as I didn't know the name of it. Persistent discomfort with occasional flare ups that required a pack of frozen peas. In early October I had an appt with my local nurse practitioner who tested me for PID, prescribed antibiotics and sent me on my way as I was off on a much needed 10 day holiday. Whilst on holiday my symptoms remained the same. Swab results negative for PID.
I came back just before half term and was super busy, on my feet all day with work etc.. and the wknd of the 28/29th Oct I was in absolute agony and the persistent discomfort now including periods of pain that spreads up into my pelvis and hip. So I contacted the nurse practitioner and saw her on Monday. She did a pelvic exam and I am very tender over my right ovary. She has referred me for blood tests (this coming Tuesday) and an ultrasound (who knows when). No mention of the CA125 - didn't know about it then - never occurred to me it was my ovaries for some reason.
Found Ovacome and this forum and had planned to double check at the blood test that that is included. You're all absolutely marvellous by the way.
On Tuesday afternoon I noticed my abdomen was swollen and uncomfortable. By Wednesday lunchtime I looked 8 months pregnant and was/am very uncomfortable - trousers don't fit etc..
Contact GP's practice as I'm a little alarmed. They respond at 6pm and recommend that I present at A&E. So I do. They didn't seem that interested in my history. Suggested an X ray for my bloating. Took bloods and I did the obligatory pee in the cup - why does that always take so long?
Results come back that I have blood in my urine but no sign of infection from my bloods and the pregnancy strip test looks faintly positive. (AGGGGHHHHHHH!!!! - I've got 2 young men I don't need any more babies). Due to its faintness they do a blood test which then gets lost and I finally got a bed in a corridor at 4am. At 6.30 they discharged me as the blood test tested negative for pregnancy (phew). I asked about the x ray for the bloating and the blood in the urine and they just sort of shrugged their shoulders and said to see my GP. No CA125 done either as apparently it is not an emergency test that is done.
So my question is as I sit here wondering if the GP will even get back to me - what do I do now? Without coming across as a hysterical middle aged woman? The blood in my urine was a bit of a curveball tbh.
I have had increased urgency and needing to go often for over a year and was referred to what I call the fanny physio this time last year who after a very lovely conversation said do your pelvic floor exercises, you're in your 40's, you've had 2 kids - this is your life now.
I really appreciate any responses and the fact you read to the end. What I now know about Cliff Richards early work is pretty impressive!
Tracey x
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Tray4321
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I am no expert by any means but had a diagnosis of endometrioid ovarian cancer (stage 1) last November after 10 years of being sent away from my GP and being made to feel like a nuisance (very likely to have been severe endometriosis at that point). I would personally go back to your GP and ask for ultrasounds as a starting point and a CA125 blood test (maybe depending on ultrasound results) If you are concerned and this is not normal for you then you have to advocate for yourself. I think most of us on here at some point have had to push and feel like a nuisance at times, because if you don’t you fall through the cracks. Good luck and I hope you get some sort of explanation and hopefully peace of mind soon x
I have just re read your post and saw that you have been referred for ultrasound and blood tests! Hopefully that will get the ball rolling and you can get more of an idea of what is going on soon. Again don’t be afraid to chase up the ultrasound (I chased mine after 3 weeks and was told it should have been arranged within 2 or 3 days as an urgent scan but had got lost in the process. They gave me an appointment for the next day when I rang)
Fight like a demon for a CA125 and an abdominal ultrasound. Given the state of the NHS you may need a private ultrasound but they should get you the blood test quickly. You may have a malignant ascites. If the CA 125 is normal you can relax a bit and wait but if it is up in the 100's or 1000's you need help quick. Typically with a malignant ascistes you lose 3 or more kg's very fast. I had blood in my urine (still do) and it meant nothing. They kept misdiagnosing the desire to pee and the burning as a cystitis when it was grade 4 ovarian. Only when I became skinny overnight with a pregnant tummy was I taken seriously.
Advocate for yourself! I wish I had known what I know now. There is no harm in insisting on a CA125 and ultrasound. I was told for 3 years I had IBS. Am stage 4a OC. You go girl! Good luck. Xxxxx
Off to the drs in a min with my urine sample. Whilst there I am going to double check that they will be doing a CA125 at my Tuesday blood test. I've still had no appointment through for my ultrasound so am going to try and arrange a private one.
Your kind words are very motivational - thank you.
Hi! To be to the point bloating to that extent is not normal and can be a symptom of OC. Also putting your other symptoms with it I’d not wait to go back to your GP. I’d go back to A&E and I know it’s hard be assertive. You have more information now from this forum. I only had 2 weeks of bloating and feeling tired. Presented at A&E were I had an abdominal scan that should ascites(fluid) and that set the ball rolling quickly. It may be something completely different but please don’t wait too long to find some answers. Take care x
So I have confirmed that they are doing a CA125 on Tuesday and have just emailed my private referral to our semi local private ultrasound department and I should have an appointment Monday - just waiting for them to confirm. God it does feel good to feel like I'm more in charge!! I'll keep you all posted on how I get on next week.
My advice would be never to wait for something to happen as often it doesn’t. You and your body deserve and need examining and an explaination found for your clinical signs.
The GP can order the CA-125. An ultrasound is more sensitive for examination of a bloated abdomen (ie looking for fluid). I would try and be calm and persistent- I often failed on the former!
Gah! The private ultrasound clinic just got back to me and said they cannot do it as it is gynae. Have called the GP surgery and demanded an urgent ultrasound referral which they have just text to confirm that they have done. No idea when it might be - next week sometime I suppose. If I'm still so bloated on Monday morning and peeing blood I might just rock up to A&E first thing and do a sit in until I get one! 💪
You do that if you don’t get an appointment soon. You can tell the person sitting next to you everything they need to know about cliff richard 😉. Please let us know how you get on, it could be something straight forward and easily treated, we always think the worst. Xx
Id get expert advice be pro active in your care your important. And you need to be checked properly by the sounds of things. We can and are fobbed off at times we know our bodies and also know when somethings not right . If your not happy get a second opinion just gives you peace of mind Good luck love & hugs SheilaFxxx
Little update: has bloods back this morning and my CA125 is in the normal range. My ultrasound is on the the 29th Nov. Still have massively swollen tummy and am super uncomfortable. Did get into see a a GP on Monday who has also requested an abdominal ultrasound. I look and waddle like a heavily pregnant woman! Trying to keep myself occupied. But god its frustrating! Thank you for all your support this last week x
Hi, I am only after reading your original post explaining all your symptoms & I see you have been pushing hard to get answers. You have got plenty of advice & encouragement from some of the other members already. I am glad your CA 125 is on the normal range but I am not trying to frighten you but unfortunately its not a reliable test, some of the ladies on here had normal range CA 125's when diagnosed. For me, mine was so high it did alert my brilliant Gp that something wasn't right. My story is fairly similar to yours, I had a persistent cough which my Gp referred me to hospital for several tests like X-rays, bloods, bronchosopy & others but nothing showed up so I was relieved. Just before they gave me the all clear in Dec 2018 I had a discomfort in my tailbone, which sometimes went into my thigh. Like you I had a mirena coil in for 5 yrs but because I was 52yrs & starting to go through the menopause my Gp said new research said you can have it in for 7yrs. I started to get heavy bleeding then so put this down to possibly the coil not working anymore. I decided to pay a visit to my Gp. She immediately removed it & did a blood test ( I never asked what it was for as it was Xmas week & that was all that was on my mind) but it turned out it was the CA 125. Mine was 2,246 😩When the results came back she made an immediate referral to a Gynaecologist, in what is called here in Ireland as a rapid assess clinic in a hospital. That was a Monday. Got an appointment for the Wed where the Gynaecologist did an internal examination & a biopsy. A Ct scan & MRi would be done the following week as this was 5 days before Xmas day, but he told me there & then I definitely had cancer but wasn't sure if it was Cervical or Ovarian. It was Ovarian & I was stage 3 at diagnosis. I really hope that it turns out that you have nothing sinister going on, but you are listening to your body & my advice is dont be fobbed off by anyone till you get answers. Looking back now I chose to blame the menopause, IBS, my age & my diet for those vague symptoms I had, so keep going till you are listened too. I was very lucky to have a wonderful female Gp who knew something wasn't right. By the way I haven't got private health insurance & even though our hospitals here are overcrowded I was & am been well looked after. Sorry for the long reply but I am so passionate about women been listened too & unfortunately OC doesn't wait round for health professionals to decide whether or not to refer you for tests. Good luck & please let us know how you get on 🤞its nothing Xx
Only 4 days now until my pelvic and abdominal ultrasound. I've been keeping myself busy and have redecorated the living room!
Saw one of my best friends last night (she's going to take me to the appointment as hubby can't get off work) I haven't seen her since Saturday 4th November and she was shocked at my abdominal distension and we did manage to have a giggle about me actually being secretly 7/8 months pregnant.
I was just wondering if any of you were told during your ultrasound appointments that something was off or did you have to wait for the results to be sent back to your GP? Do you know how long that takes?
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What a dreadful journey for my best friend!
Scan Delay - follow up
Update to a previous post I had about ultrasound and CT not being able to detect if it's a fibroid or a mass.
