Feeling like I’m falling apart at the seams

About 2 months ago, I began having really bad headaches over one temple and down my neck, I di what most people do I suspect, I took pain killers and cracked on. About a month later, when the painkillers weren’t working at all and I was being woken by the pain, I finally went to my GP who diagnosed potential Giant Cell Arteritis (an autoimmne condition) and put me on high dose Prednisolone to protect my eyesight with an urgent referral to Rheumatology. All good, Rheumatologist was fast but was also not really sure of the diagnosis, my lymph nodes in my neck are very enlarged, my mouth was sore and dry, I was feeling quite unlike myself, tired and sore and my abdomen was becoming uncomfortable. He referred me for temporal artery biopsy and arranged follow up for a month. A week later, I started a massing vaginal bleed (I’m post menopause) which was so terrifying in quantity, I headed back to the GP who confirmed that this was of concern and he rang Gynae on-call for advice. I was advised to try Progesterone over the weekend and see the GP on Monday which I did but I also received a phone call from Gynae booking a TV scan and follow up for the Friday and Monday of that week. The bleeding continued and I had to stop the progesterone because it was making the headache worse but was scanned by a lovely lady who saw a small cyst on my ovary but said the Gynae would explain everything on the Monday. At the appointment, the Gynae told me the scan was nothing to worry about but there were a couple of suspicious areas in my endometrium and that despite the bleed, my lining was 6mm thick and that my uterus was very bulky so she did some biopsies there and then and apologetically explained the results would take 3 weeks due to labs being understaffed. She would also chase my Pap results from start of August. 4 days later, on the Friday, I began to bleed heavily from my bottom. When the pain began, I rang 111 to ask what to do but they sent an ambulance and I was rapidly transferred to the surgical assessment unit of the local hospital. They monitored the bleed, took bloods, (did the temporal lobe biopsy!) and then CT with contrast of my abdomen. My bloods are showing some odd results, partially I suspect because of the drugs but also down to blood loss. My skin is bruising in very weird ways, Not when they stick a needle in or cut the skin but the slightest knock and the bruise just keeps bleeding, one on my arm is nearly 6” diameter now. I am booked for a colonoscopy early next week and apparently a multi disciplinary meeting will be held today so all involved specialists can share information. I see a neurologist next week but I am beginning to wonder what on Earth has happened. I’m not quite sure what to think, the GP is lovely but out of his depth, he has asked for urgent Haematology referral but haven’t got a date for that. I don’t feel concerned at any of the tests (old enough not to feel embarrassed) but I really don’t feel well and I am also concerned about the sweating I’m getting, the slightest thing and I pour with sweat, to the point I now dry the biopsy on my temple regularly in case it dissolves the stitches too soon. The sweat stains my clothes yellow in places too, very odd. Just wondered if anyone else had encountered such a rapid onset of so many strange things. I’m not convinced it’s even cancer, I don’t think I’ve had rapid weightloss, about 4 or 5 lbs over the last 3 weeks or so but that could be put down to discomfort so not wanting to eat large amounts. I am trying to carry on as usual but hope that either everything will resolve or someone will put their finger on it and tell me how it can be solved.

  • Hello Ladygardener68, 

    Welcome to our forum. I hope you will hear from some of the lovely members of our community who have been through this before and that they will be along to share their experience with you. You totally did the right thing to ring 111 that day and it looks like you are now in good hands and that they are carrying out all the necessary tests. I hope you managed to find out more from the multi disciplinary meeting and that your additional appointments next week such as the colonoscopy and seeing the neurologist will shed some light on what is causing these symptoms. I also hope you won't have to wait too long for your haematology referral and that you get some clarity on all this very soon. 

    Keeping everything tightly crossed for you!

    Best wishes, 

    Lucie, Cancer Chat Moderator

  • Had the strangest experience day before yesterday, went to get the results of the Giant Cell Arteritis biopsy from the Rheumatologist who clearly thought I knew what was going on, (I’ve not had any results yet) and he told me that because I needed major surgery, the risk of me having GCA was roughly 10% but the risk of being on high dose steroids was much higher so that it was an acceptable risk to reduce the steroids rapidly over 4 weeks and reass if I get return of symptoms. When he saw that I looked somewhat confused, he asked why? He then read me the results of my ‘final’ CT scan report, reported by 2 radiologists with addendum. It would appear that I have masses or thickening in my womb and ascending colon and the ovary with the cyst appears abnormal too. Still no date for colonoscopy or any follow up so rang GP who was furious, he hadn’t had this report either, he has now and is chasing but I am beginning to feel as if I am being ignored. Whether it is just worry, I feel as if the abdominal pain has increased too. Trying to keep busy, not dwell and above all, not google but my Dad had bowel cancer when he was 62 and needed very radical surgery.. he is now 82 but I am still concerned, he was told time was of the essence.