Having had my bladder, womb etc removed in March 22 and a clear scan in July decided to have a holiday.Took advice from oncologist and specialist nurse about pain around my groin and genitals, all saying it was nerve pain. Booked what I considered to be a very expensive saga cruise to the Norway. Nervous about traveling with stoma but lots of careful planing went into it
Lasted 2 nights on board before being taken off the ship with a suspected blockage. First hospital confirmed blockage by CT scan, results available within the hour. Doctor at first hospital told me it’s common following my surgery. Transferred to university hospital by air ambulance, told by two further doctors blockage very common and a straight forward operation. In the event it cleared itself. Discharged from hospital after 6 nights.Hospital told me the outcome of the scan, lesions on liver and a spot/bubble on lung. Hospital care was brilliant. Once in hotel found groin and pain in genitals got worse and unable to sit which is very inconvenient a embarrassing, standing up to eat etc. Finally got home having spent most of the flight standing up. GP appointment, first face to face for 12 months, accepted my own diagnoses of vulvodynia and believes I have a cyst. Antibiotics prescribed. If the do not work referral to gynaecologist who will lance it. Have a CT scan booked here next week and have been advised to tell them of scan in Norway to get results asap. First three monthly scan following operation took 28 days to get results. If I have lesions on my liver I need chemotherapy asap.
All this has been a painful, expensive learning curve. Had following my operation I had received information about potential problems following surgery and symptoms to look out for t would have been better informed and better able to make decisions but I left hospital in March with nothing written down and no follow up appointment with the surgeon. This seems such a shame as what the surgeon did was very skilful, have lots of written information when I had a tooth extracted!
Anita
