Lots of confusion, symptoms but not a clue.

Hello, I would just really like to have someone's opinion on my situation especially considering doctor appointment waits these days. 

My first most concerning symptom was blood in stool (could be bright red filling the entire bowl and paper, or simply just blood in the stool itself, or just slight streaks of blood on paper - most commonly the first) , I knew it was not only due to constipation as it occurred with diarrhoea and even just normally, sometimes even with clots present. It happened around 5 times a week, ranging from maybe twice a day for a day then none the next and so on, it was completely irregular and I found no pattern. My GP dismissed this after a observatory rectal examination and prescribed me laxatives. However, I was already under Paediactric care, being referred to them a month before for premature greying of hair. When the first bloods came back for the enquiry into my white hairs, nothing such as vitiligo or anything came up meaning they are probably genetic. However, my 'Coeliac' antibody was high whilst another was not. Around this time I had been having lots of nausea and constant bloating and random redness of skin alongside rash-like breakouts. But again, with no correlation to certain foods or atmospheres. These symptoms still persist to an extent. Anyways, 6 months later I had an endoscopic biopsy done. In the review consultation for the results, my doctor revealed to me all was normal with very slight inflammation. In this appointment, I was practically ridiculed for even asking if this meant that Coeliac was still a possibility. He took some more bloods reluctantly and mockingly. Yet, fast forward 2 months and I get a phone call from him telling me my antibodies have increased and now BOTH were testing positive and had increased in number i think around 30 something, although i'm not too sure how it works. Anyways, he prescribed me more laxatives because the bleeding persisted although I insisted that it was majoritily not due to constipation. Then following this raise in antibodies, In March 2022, I was told to start a gluten-free diet for 4 weeks. I have now been Gluten free for 5 months due to no dietician appointments being available and therefore my inability to resume a regular diet. I have not felt much change. The bleeding has substantially decreased but has not vanished and all other symptoms persist. In a letter before the doctor realised my antibodies had increased, he said that he would perhaps refer me for a colonoscopy to test for allergic colitis. In the jumble of this all I also had a colonic transit X-ray, and it was quite bad, i think it was 48-72 hours. At this time I definitely knew my bowel movements were irregular and knew that the laxatives would help, in comparison to before when I knew for sure it wasn't the cause of bleeding. This is all still ongoing and I have no idea what they will do next. But, this is just a bit of background story as I don't know if it correlates to the next set of symptoms as I am not too extremely worried about these gastric symptoms than I am the latter. 

I have had consistent headaches for 2 years now. Meaning I get them almost everyday, several times a week. But recently they've grown a lot worse. I now get them absolutely every day without a break. They last for hours and hours, I had one that lasted constantly for 8 days. It was pure anguish. They come without symptoms but it is extremely hard to differentiate headache symptoms with gastro as they're so similar and both issues have occurred around the same time. I spoke to GP about this, was dismissed about it (prior to paediatric referral). Therefore, I also actively ignored them medically as I wanted to get the gastro problems out of the way first. Then after my biopsy I put more emphasis on them and told the doctors this is something I can't physically deal with. I had been taking paracetamol periodically but it never helped so my GP then told me to take 500mg Ibuprofen whenever I had a headache. It never once helped, out of desperacy, I had even taken 4 tablets one day with no difference whatsoever. Please bear in mind that I have never overused any medication before that, my headaches have little to no possibility of being unaffected by medication due to something like that. I've also had some other odd occurrences such as when standing up, feeling 2 seconds of sharp, electric-like painful pain in my head. My headaches have also been more prominent on the top right of my head. My headaches are behind my eyes and my forehead and top of head mostly. I am also getting head pains in general not just headaches, so I get tenderness to the touch and just ache. I, and my doctors have considered the possibility of them being. tension headaches but I am incredibly skeptical of that. I get these headaches with no pattern, they are present everyday , for most of the hours of the day. I have tried endless things to rid myself of the anguish and disorientation and disabling effects they bring. I can't focus or take in information and i become sensitive to lights and sound and tend to lash out on people due to the simpleness of my headaches becoming so worse with such mini things. It is affecting my social life, and my education. I have never failed a test and nor have I ever been overly stressed out the norm about anything but the onset of the severity of these headaches have left me with a F in a subject. I am devastated by not only that but the pain in itself. It's exhausting. (Sorry started venting, back to the point hahaha) Then my new doctor performed an exam to test I think neural function or something? Where they tap your knees and ask you to perform a couple tasks? Everything was normal. My optician and prescription is also all normal. So she arranged an MRI for me. I had my MRI. a couple months ago and received the results over phone call 2 weeks ago saying all is clear. I have an appointment next Wednesday to discuss further about my headaches. 

Alongside this, I have a lump, a pea and a half-sized at the back of my neck hairline. This has been here for months. It has no reddening or any tip and not has it ever secreted any pus or anything. It is hard to the touch and doesn't move around much. I also have a similar but smaller and painful one on my left armpit but I think that's just due to me sweating like a donkey. The one on my neck does concern me however. I will tell my doctor about this in the appointment but I'm afraid it'll get dismissed as everything has before. My symptoms are making no sense to me. My doctors seem all entirely unsure and i am sorry to say but I don't feel trustful of them at all. It hurts to get mocked by a doctor but it hurts even more to realise something you dismissed because of the pressure from them was true. I can't put anything togehter out of all these different things myself and I woudl truly be grateful for anybodys perspective, please do not hold back on anything you think. 

 

So sorry for making this so long and rambling on and on, I am just as perplexed and clueless as this will come across as! 

Thankyou!!!!

Side note: I am not a hypochondriac. I know google is misleading. I am appreciative of many doctors, I think I may just be unfortunate in the ones that have soemtiems been allocated to me. I stopped taking any oral medication for headaches months ago after GP-advised, 3 ibuprofens a day and 4 paracetamols did not work. Felt like a drug dispenser with no use. I have also had debilitating lower back pain for a week and a half, thinking I had a slipped disc? But in the midst of corona I had no support. 

  • Hello and thank you for posting. 

    I am so sorry that you are feeling like this. You have taken so much time to tell us your concerns, but unfortunately nobody here on Cancer Chat is going to be able to give you a medical opinion of whether there is anything the matter or what it might be. 

    The forum users will have their own experiences which will be individual to them and their own situations, and as nurses we would not be able to assess and diagnose.

    I am glad that the MRI you had for your headaches was clear, and maybe your bowel issues will get further investigation. Do let the doctor know at your appointment about the lump on your head and your back pain. They may not all be related symptoms, and none of them are necessarily cancer as many things can happen in the body that aren't.

    I wonder whether you have anyone you trust to talk these things through with, it must be very stressful to have all this going on and worrying about having a cancer diagnosis. Talk this all though with the doctor on Wednesday and explain your cancer fears, they will assess you and refer you on for other tests or investigations if they think it is needed. 

    Take care, and I hope you get answers soon.

    Sarah.