" Where to begin? I guess that would be around 2.5 years ago....
I’m not sure what came first, spotting and period issues or bowel trouble and digestive issues. I didn’t pay too much attention to the period issues or spotting; mine were never regular or settled, even from when I first started. I did pay attention to the bowels though, couldn’t ignore it. Certain foods began to cause me problems, so I tried an elimination diet thinking I could sort it out without involving my GP. With each elimination came issues with more foods, alternating diarrohea and constipation, and severe stomach cramps.
I eventually gave in when an ‘episode’ would end with a bout of vomiting and a heavy bleed (I know, too much information) and took myself to the surgery. GP went about numerous tests whilst also sending off referrals to gynaecology and gastroenterology departments.
December 2014, I got a phone call from my GP concerning the latest blood test. It was showing elevated levels of white cells, an infection of some sort. I knew then, cancer. But kept the thought to myself.
January 2015, I’m informed I’ve been referred back to my GP as I didn’t turn up for a gynae appointment. A letter I didn’t even receive and if the newspaper reports I read not long after were anything to go by, then the appointment letter from consultant probably never got posted out. So a second referral request was sent by GP.
Late February 2015, I finally meet the first consultant. A quick exam and I’m informed I have hyperplasia (thickened womb) and fibroids. An ultrasound is fast tracked, followed by a hysteroscopy.
Mid March 2015, I’m in for the hysteroscopy and ablation to burn the fibroids. I wake from that and remember taking note of the time, thinking I hadn’t been out as long as I thought. Back up to the ward and awhile later the surgeon comes round. Asks me if I’m awake enough to understand, I nod and she then explains they couldn’t do the ablation due to finding a mass. “Cancer?” I ask. “Yes” she replies softly. I shed some tears.
A barrage of consultations, MRI and CT scans follow. Despite them coming back inconclusive in some areas, the consultants (4 of them, never saw the same one twice, and by the end that number went to 8) are very positive it’s Grade 1 Stage 1. I had my doubts. Though a couple of them differed on whether I would need any chemo/radio they did all agree... Hysterectomy. Though none could confirm if bowel issues were fibroid related or a separate issue (bearing in mind I still hadn’t received an appointment for the gastro referral my GP sent at the same time as the gynae one).
Hysterectomy was originally planned for beginning of June but thankfully I was offered a cancellation end of May. By that time the pain was barely under control so the hysterectomy was most welcome. Due to fibroids I was unable to have keyhole or bikini line, so had a vertical cut from just above the belly button. I won’t bore you with the 8 days in hospital. But I finally got discharged home to await the next consultation and histology report.
June 16th 2015. I get to finally know the facts. Grade 2 Stage 4 (b)!
During this time, and even on the day of the hysteroscopy, my smear came back clear. Everyone asks me “how can that be?” The smear test only checks the neck of the cervix and not the womb. Many ladies diagnosed with womb/endometrial cancer have had a clear/negative smear result.
If you have concerns about spotting, discharge, unexpected pelvis pain, I urge you to see your GP. Don’t rely on a clear/negative smear result. Endometrial cancer does not only affect ladies after the menopause, it can affect all ages. Nor are we all overweight, smoke, unfit etc
My GP admitted he was shocked at my diagnosis as I didn’t meet the criteria. That said, once I gave in and went to see him, he was quick at putting a referral through. Not all GP’s are like this. You know your body!"
If you would be willing to share your story then please get in touch using the contact form on the website.
xx Kaz xx