Hi everyone - i'm new to this and just really need some advice regarding my symptoms - am i going mad? i just dont know what to do :(

I had CIN 3 severe dyskaryosis in 2006 and had treatment, smears all clear every year since then. Went on to have several hysteroscopys for suspected polyps and cysts but every time they went in they couldnt find them, following on from a D&C i started to bleed so excessively they fitted a mirena coil, this then came out twice due to the heavy bleeding and i needed a blood transfusion and then had a uterine eblation. Two years later i started to bleed again and consultant at hospital recommended my left ovary was removed due to a cyst he had seen and a hysterecomy as he felt that potentially the eblation wasnt a success. I chose not to have this done as it seemed drastic and so said i would continue to monitor the bleeding. That was 15 months ago. Two weeks ago i went to A&E with a awful pain in my left side and there was visible blood in my urine, the doctor initially thought it was an eptopic pregnancy but finally said it was a nasty UTI that had spread to my kidneys. I went back to my GP three days later who said no it wasnt the urine he tested showed no infection and maybe it was a kidney stone as now the pain was so bad on my lower left back and front side just above my hip bone. He sent me to hospital who refused to scan me and said it was still a kidney infection and changed the tablets. Back to the GP who threw the tablets in the bin and said no uti or kidney infection and sent me for a scan two days later on my kidneys, this came back clear. He has now suggested a scan on my bowel (endoscopy) which again seems odd as i have no issues with my bowel! I am bloated, the pain is constant, i feel quite gassy, had some spotting now inbetween a period which i never got before and i personally felt that due to my past history wouldnt a pelvic scan or something similar be appropriate but GP said no wasnt needed. I subsequently paid for one privately and it showed a 4.7mm endometrium thickness (which shouldnt be there surely if removed) and larger than normal ovaries but small cysts on them. She suggested i take the report to my GP but didnt seem concerned. Should i be?? I just feel like everyone thinks im being silly and keeps sending me away but im sure theres more to it? I just wondered what everyones thoughts on this are? Thanks in advance and im sorry for my long winded post! (if it helps im 40 years old)

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9 Replies

  • Hi, It wouldn't be appropriate to even guess what your history might or might not indicate. Unfortunately, as many here would attest, getting taken seriously about your concerns can be difficult. Ovacome have a symptom checker you can use and then print off to take to your GP. Maybe this would be a good idea for you. (See link below). Hope all turns out well.

    Kind regards



  • Thank you for your reply, I do appreciate what you're saying and I wasn't really looking for someone to say what I do/don't have, just feeling frustrated that no one will listen to me and just feeling I'm going around in circles with GPs

  • You are absolutely right to be concerned. You can now ask your GP for a CA125 test - just send a letter or call the surgery and leave a message. If the GP refuses - it's a standard test, costing about £25, taken in a standard tube, no special instructions or anything, NICE guidelines suggest it should be done if there is even a remote suspicion of ovarian cancer - then s/he's in deep doodoo with the powers that be.

    I do not like causing trouble, but sometime you have to shout to make sure that your voice is heard…

    You can find the guidelines for GP indications & investigations on the NICE website.

    As Nike says, just do it. I hope very much that your fears prove groundless, but the sad fact is that it is because of litigation - and the cost of settling claims for late diagnosis of ovarian cancer - that the guidelines were recently changed. The NHS is shelling out settlements for around 300 cases of OC negligence each year - it's known as a fatal claim, and the costs are enormous. Unfortunately I am one of these litigants - and I wouldn't be if any of the various characters involved had been honest, admitted that they should have done things differently, and said sorry - and the costs of settling my case, in terms of legal bills, expert medical reports etc., alone amount to more than £500,000.

    Once again, I hope you are OK, and your fears - which are entirely natural - are groundless. But please, do not let what happened to me - and I am fine now - happen to you. I don't intend to let this disease kill me, but it's a cancer than can recur more than 20 years after diagnosis, so I cannot be sure.

    Best wishes, Vicky xxx

  • Thank you Vicky I will speak to my GP again x

  • Good luck Vicky, tell him what your concerns are in black and white. If you think you need further investigation for OC then say as much, maybe take a family member with you into the appointment too x x

  • I had pain in side and very heavy debilitating periods (aged 51).

    Had a CA125 test that read 65 and rising. Had hysteroscopy. There was a cyst on one ovary, Was hurried into total abdominal hysterectomy, including both ovary removal. All happened very quickly and I didn't question it. Post-op was told the cysts weren't cancerous.

    Now have same pain in right side.

    Doc doesn't want to know.

    Persevere until you get understanding and answers would be my advice. Endo can be treated. Cysts can be removed without hysterectomy.

    Ladies on here are tremendously supportive. A tower of strength.

  • You've already received excellent advice so I don't think I can really add anything new. A CA125 test is definitely advisable if you can identify with many of the symptoms on the Ovacome symptom checker.

    Spotting in between periods is definitely something that needs checking out and is not normal. I'm sure I have read something on a NHS website that says you need to see a GP if this occurs. Take along someone with you to your appointment for moral support and if required ask for a second opinion. You know your body best and know when something is not right. Better to be safe than sorry and don't let anyone fob you off.

    Do let us know how you do and I hope you get the answers you need soon.

    Take care xx

  • Hi - you are not going mad and have every right to be concerned - whatever is going on requires investigation.

    It was originally thought I had a urine infection and then kidney stones (I spent nearly a week on a urology ward trying to pass kidney stones that I didn't have.) Eventually I had an ultrasound scan which picked up something in my right fallopian tube and something on my left ovary. I then had CA125 test (a blood test that looks for a chemical that is produced by some ovarian cancer cells. However, this chemical is not specific to ovarian cancer and may also be raised in many benign conditions, so a raised level of CA125 does not definitely mean you have ovarian cancer.) which was high. I then also paid privately for an MRI scan to speed up my diagnosis and surgery. Mine did turn out to be ovarian cancer.

    Good luck and I hope you find answers to your questions and some relief from your symptoms whatever the cause may be.


  • Thank you everyone really appreciate you all taking the time to reply, I'm going back to my GP this week. Wishing you all

    The best too xx

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