I’m so grateful for this forum to share all our stories and support each other and pass on tips to help each other.
I’d felt so alone and ignored, dismissed, unimportant. I’d been reporting bowel and pelvis symptoms to my gp directly and through nhs111 for 4 months, including being referred to the clinic pharmacists, a clinician, again back to a clinician for an appointment that nhs 111 had requested to be with a gp, who insisted I was hormonal- basically being fobbed off at every turn, I’ve spoken to a gp twice who both times dismissed severe symptoms each time telling me to let them know if it happened again. When it did and I was made an appointment it was then cancelled with the same result , tell them if it happens again. i saw the out of hours gp twice but they had no authority to order a referral, only a fit test, which a week later was confirmed lost! I cried so much….but yesterday nhs111 ordered an immediate emergency appointment with my gp and I broke down in the doctors office, was with them for about 45 minutes, they did 2 internal exams, fit test, urine test, was given antibiotics and immediately put on a fast track for cancer investigations. It’s a strange feeling now, some relief that they’re listening now and the worry till I get more answers and hoping it’s not serious and if it is, the delay in addressing doesn’t prove catastrophic for me. But I’m definitely feeling lighter just knowing someone is listening now. It was actually my ptsd counsellor (helping for a different issue)who allowed me to vent about my experience and then suggested I write a diary of the last 4 months and hand it in to the surgery so it’s documented in one place rather than having to recap, in a 4 minute conversation every time I call for help. I think that’s what made them pay attention when I put it on the gps desk, so I suggest if anyone is feeling ignored and dismissed do this! I also got a separate call and text after my appointment to clarify next steps and when I actually checked online, see I’m supposed to hear back with an appointment within 7 days. So if you’re feeling dismissed and being fobbed off, summarise a diary of events, one event per line, few words, so it’s easy for medics to scan read and they should take you seriously.
on a slightly separate topic 20 years ago I found a breast lump, had a referral, scans, biopsy, surgery within a few weeks so I’m not new to the terror and worry. It was benign after all that but still a horrible experience and sad I’m there again.
I’m single, disabled and unable to work for the last few months. i live alone, no social network, I have adult daughters with their own busy lives who listen when I need them. So I’m finding distractions in social media, mentoring others as I really enjoy helping and supporting people, all completely unrelated to anything medically related, as that’s the whole point, to be distracted. It’s helped me so much! Even if it is taking over my life, im there for everyone at all times online as that’s the distraction I need right now and boosts my otherwise fragile self esteem. I never expected to be a source of support in that field and it’s been quite empowering. So if I can do it, anyone can, find a niche you know about and start there.
Sending love and best wishes to all and a reminder we are not alone, someone will listen and appreciate your worth if you reach out even if it is online when real life isn’t enough.