CT Results & CA125.

[juneann]

As nobody seems to know why my CA125 was 685 at my last blood test and rising I was then offered a CT scan after much pushing from me. I'd had a ultrasound both external and internal, hysteroscopy and biopsy with the same results of Fibroids, Cysts and a Bulky Uterus. From the CT scan it has been concluded that I possibly have Adenomyosis, however the only sure way of a difinitive diagnosis and stopping further flooding would be a hysterectomy. I have once again been discharged with the suggestion of contacting my GP should it become completely unmanageable. Anyone else had this diagnosis?

[oldtimer]

You don't mention your age and that would have a bearing on your decision. Having a hysterectomy when you have finished child bearing is an easier decision to take and might be worth exploring the pros and cons for you personally?

I can remember the freedom from flooding that a hysterectomy gave me and personally I found the recovery a relatively easy thing - but then lots of things are easier than having Rheumatoid Disease! You might need an abdominal approach so that they can have a good look around, and you would also need to consider whether to have your ovaries removed and the menopausal symptoms that would immediately follow which are no so easy to deal with.

There is a useful website you might like to look at - but remember everyone's experiences are different! hysterectomy-association.or...

[juneann in reply to oldtimer]

Thanks Oldtimer for the reply. I am a 56 year old RA sufferer of a little over fourteen years and flooded for six years, whilst resorting to toddlers nappies as a tampon fills in five minutes (no exageration). I was really hoping to keep my menopause as natural as possibe and ride the storm, I just need to know my health is not as risk.

[girli1111]

Hi, I’m sorry to hear you’re having a rough and frightening time. I’m sure you know that ca125 can be raised without cancer, and equally some people with OC do not get a raised CA125, or just a rise to a low level. My understanding is that pretty much any abdominal cavity inflammation can cause a raise in CA125. Mine over the space of two years went from 37 to 175 to almost 500. As the highest score was after a large ovarian mass had been seen on my ovary (during mri looking at my hips) I was rushed through gynae oncology referral. further CT and MRI scans were inconclusive, although I was told it was ‘unlikely’ to be cancer. A week later the large mass and my ovary and tubes were removed, all clear. My other ovary had been removed two years earlier. I also had diagnosis of severe endometriosis, fibroid and adenomyosis, but uterus was not removed as it was stuck to my bowel and would have been risky. CA125 returned to a ‘normal level’. Only downside is that the surgical menopause kicked off my RA symptoms in a big way, something I hadn’t anticipated! I don’t know your age or situation, but continued flooding should be investigated, it’s not something you should have to put up with! From a gynae point of view I’m now in good shape, on hrt, no endo symptoms, no ovaries, no bleeding. In your position I’d be looking for a second opinion, if only for reassurance. Best wishes, and you are welcome to message me if I can be of further help.

[juneann in reply to girli1111]

Thank you girlie1969. I shall try and get my CA125 checked again fairly soon. I am never asked to have it checked but I sneak it onto my blood forms as I do my Vit D. I didn't realise that the menopause affects RA so badly. I should have guessed actually as I blame a lot of my problems with hormones, a rollercoast ride since I started my periods at fifteen.

[girli1111 in reply to juneann]

The menopause/RA is just a link I’ve noticed myself, but others seem to have experienced this too.