My mother is 60. A couple of years ago, following a prolapse and hysterectomy, she started having bladder problems for which she has scans and other tests which showed nothing. Her symptoms were basically that of Interstitial Cystitis.
Several months ago, she started having minor constipation which was helped by lactulose. A month or so on, she started having bowel spasms and bloating. Her GP prescribed IBS meds. The symptoms worsened over a couple of weeks with even more bloating. Fortunately she went back to the GP. She had a blood test and her CA-125 was very high so she was referred for a CT scan.
Some of you might be familiar with CA-125 - it indicates various gynae issues from endo to ovarian cancer. Sadly she has now been diagnosed with ovarian cancer which has also spread to her abdominal cavity and is either pressing on or in her bowel - I believe this is stage three.
I have done lots of reading on ovarian cancer in the last few weeks and a few things have really shocked me:
- Endo sufferers are more likely to get ovarian cancer
- Despite the symptoms being extremely minor and very similar to endo, no gynae has ever warned me about this
- When I've plucked up the courage to see a doctor about new symptoms which could be ovarian cancer, they have not run any tests, or mentioned it to me, or shown any concern
I was diagnosed with endo in 2004 - after five laps, I have been discharged by my last gynae and told that my symptoms are caused more by nerve damage than endo and there's nothing further they can do. I've been told I have ME but never tested to rule out other causes of fatigue.
I've developed a plethora of new symptoms over the last few years. Either I ignore them and assume they're part of the endo / ME or the doctors tell me there's nothing else wrong without checking.
Over Christmas, I developed severe abdominal bloating, bowel and bladder problems with severe pain. I made an emergency appt and even told the GP about my mum - he prescribed me laxatives, lectured me on taking morphine and I left feeling just as scared and unsupported.
The difference between getting diagnosed with ovarian cancer at stage one and the later stages is shocking: 90% of women dx in stage one are alive after five years, compared to 50% for stage two, 20% for stage three and only 6% for stage four.
Doctors have to conserve funds so they play a numbers game - bloating is more likely to be IBS so they don't test for cancer (even though women over 50 do not develop IBS if they've never had it before). They'll only screen women who have had more than two female relatives with ovarian or breast cancer, even though it's genetic in 10% of cases. If my mother now passes away, I believe the doctors who have failed to investigate her symptoms fully are responsible.
As women, we must be aware of the symptoms of female cancers. As endo sufferers, it is even more vital. Please familiarise yourself with the symptoms and stop ignoring your bodies - we know when something is wrong, and we have to stop assuming everything is caused by the endo because we cannot know if that's the case.
I couldn't help my mum, I didn't know the symptoms - even when we spent over two weeks together on holiday earlier this year, I didn't realise that her symptoms were a sign of the cancer spreading. Maybe I can prevent someone else and their family from going through this.
I hope you're all as well as possible.