Beside myself with worry - ovarian cancer

Hi. Hoping to get some perspective/other experiences.


Firstly, I'm sorry if I come over melodramatic or over the top. In my defence I very nearly died of a post op pulmonary embolism in 2018 and the PTSD it left me with partially manifests itself as health anxiety.

 

Basically I'm terrified I have ovarian cancer.


Symptoms started last November when one evening I started needing a wee every 30 minutes. Went to the GP saying I thought I had a UTI, but tests came back negative. It eventually disappeared, only to return a few weeks later and has been off and on every few weeks ever since. It is most definitely currently on. The frequent trips to the loo have gone now, but the pain/inflammation feeling very low down in my pelvis (there's a definite vertical line of pain/burning which I assume is my urethra) and at either side (sometimes radiating down my legs) has gotten worse and my cycle has suddenly reduced over the last 2 months from 33 days to 25 (with some seriously bad, doubled over in agony, period pains). 

 

On my 3rd visit to the GP (about 2 weeks ago) they started to take me a bit more seriously and sent off some bloods. My CA125 has come back elevated at 45 or 49 (can't remember which as I was a bit blindsided), the cut off being 35, and I now needed an urgent scan - which is booked for the 29th.

 

Although the GP said Ovarian Cancer was unlikely (pre-menopausal, no family history etc.) I've been experiencing other symptoms such as air hunger (off and on) for a couple of weeks and fatigue that hits me like a train most days (GP checked my for anemia/b12/d which were OK) .
 

I keep adding up all the symptoms and coming to the same conclusion, that I have ovarian cancer, and that considering the symptoms started in November and it's a disease that is notorious for not showing symptoms until it's later stages it must be pretty advanced by now, and I'm up *** creek so to speak. 

 

I am so scared that I've withdrawn into myself and can't speak to anyone. I'm just having horrid thoughts constantly running through my head - sitting in the consultant's room being told the awful diagnosis, having to tell my daughter etc. My head is spinning.

  • Hi

    So sorry to hear what you are suffering, I'm similar for 3 months, the waiting and worry is excruciating.  Is your scan to be a ct or ultrasound, hope it brings you good news.  I've been in severe pain since March, lower abdomen, legs and rectal. I've had ct, pelvic mri, and ultra sound,  4 sets of bloods, all came back clear,  I need a colonoscopy but because of covid keeps being pushed back. I'm exhausted tired all the time. Only time I get relief is when I take a sleeping tablet at night, I long for bedtime every day. I wish you well and hope your news is good, can you post and let us know.

  • It sounds as though you're as miserable as me Cath23 ️ It's an ultrasound on the 29th. COVID is screwing with everything at the moment. I'm so sorry that you're having to rely on sleeping tablets for any form of relief - that's not right, hopefully the colonoscopy will give some answers and that the medics can identify the reason for all your pain and act on it.
     

    Can I ask - did they check your CA125 in your bloods? 

  • Hi Katkins

    No I haven't hadCA125  blood test done, I'm terrified the problem is coming from my bowel as I get very severe rectal pain and lower abdomen pain, but I suppose it could be womb related too. I'm hoping to rule out bowel problems if I can get the colonoscopy and then see what I can do to find cause . All I know is I can keep going like this. I hope your ultrasound will bring you good news and relief.

    I will post if I manage to get seen soon,  are there any pain killers you find better than others while we wait? I take solpadine or panadol a few times a day but mostly it doesn't touch the pain, only thing that helps is sleeping tablet. 

  • No not really re. painkillers. I can't take NSAIDs so am relying on paracetamol. I don't seem to have any problems sleeping funnily enough. I've had a couple of days respite (to an extent - back today though!) but have been experiencing lots of lower back pain and a very sluggish digestive system - also OC symptoms - so have almost resigned myself to my fate. Eugh, this is exhausting.

     

    Scan on Monday, although don't expect to know much, will have to wait for the report.

     

     

  • Hi Katkins

    I was admitted on tuesday, had colonoscopy,  polyps found and haemorrhoids. 

  • Oh crikey Cath23 - you must have been feeling rotten to have been admitted. So the polyps and haemorrhoids explain the symptoms right? 

  • Yes I felt horrendous, hoping to go home tomorrow.  Dr. Said no sign cancer thank god, but he is doing bone xray of lower back as he feels the leg and bum pain cud be disc degeneration. Best of luck with you scan next Monday, will sauce prayer for you, will you let me know how you get on.

  • I'm sorry you're feeling so *** - but it's brilliant news there's a non-cancerous reason for your symptoms! I'll keep you posted.

  • So, had my ultrasound this morning. It was with a (very lovely) Dr rather than sonographer, so she took me through every single bit of it there and then. Ovaries - normal! Uterus - normal except for Adenomyosis (which I already knew about). Cervix - normal except for tiny Nabothian cyst (which she said half the waiting room would have if she scanned them). No free fluid (indicitive of a cancer in the area). So relieved! She did say the elevated CA125 could be due to the Adenomyosis or just an erroneous/random result. Obviously doesn't explain my ongoing symptoms - and GP is going to refer me on, but need to discuss with her which direction we go. But at least gynae cancers seem to be off the table! 

  • Hi Katkins

    Just wondering how you got on with your scan on 29th, hope alls well and that you got some answers.