Am I just being dramatic ?

I’m autistic and also have adhd, I have a tendency to fixate on health issues, this is predominantly because when I feel pain there’s something wrong - historically this has proven to be correct. The problem being my pain threshold is abnormally high, therefore when I say something hurts it really really hurts. 

on the 7th of June I woke up in agony, I had lower back pain and could barely walk - so me being me, of course I went to work anyway. I work in the community meeting with people and offering support, I went to work and was in pain all day, I got through it knowing I could work from home from 3pm. When I got home I laid down and literally couldn’t walk where my lower back was hurting so much, it felt like a band round my entire stomach, lower back, top of buttocks and even into my upper thighs. 

I took to my bed hoping rest would fix it. By the Monday I couldn’t take it any longer and went to a an e. I explained my issue had begun on the Wednesday and hadn’t resolved with rest. My urine was dipped and that was apparently clear - something I knew wasn’t possible as I’ve had a urine infection for over 2 years, I go to the dr get anti biotics the infection goes for a week and then the whole process repeats - in the end I gave up. Anyway clear urine, so they then decided that my back was in a “full back lock with permanent spasm and a possible herniated disc” they advised massage and diazepam to get rid of the lock.

a few weeks later the spasm released but I was still left with excruciating pain, I returned to the drs. This time she commented on my bp being high when I had gone to a an e (despite the nurse in a an e saying it was fine), she ruled it a mechanical back issue and sent me away again. A week later I returned she then dipped my urine, what do you know raging urine infection - I told her I have actually had this for around a year an often wake up with kidney pains but the pain I’m currently experiencing is different to kidney pain. She decided it’s possible that I have a kidney infection along side a mechanical back issue. She also noted I had tachycardia and high bp and told me to monitor it. 

im booked to see a spinal specialist on the 31st, I then went back as following the course of anti biotics I still felt Ill and my back was still sore. They felt my abdomen, swollen spleen, possible swollen kidney, soreness when running over my bladder, flank pains. So they decided to do an urgent referral. Whilst I was there I thought I would just remind them that historically my spleen swells when I’m ill following a nasty bout of glandular fever at 14, I also remind them that for the past 2 years I’ve had pain during an after sex and also bleeding after sex despite not having any period due to the coil. I remind them that last year my smear came back high risk despite the fact I’ve had all the vaccines, I also remind them that I’ve been in the same relationship since I was 16 and didn’t get my first smear till 25 which means if I had hpv I possibly had it from prior to 16 which would mean it’s possible it could have progressed. I also said that despite being high risk there were no pre cancer cells when I was checked last year. At this point the dr booked me for an urgent ultrasound and also told me to book a pelvic examination which I have tomorrow, the ultrasound I have booked for early aug… basically I’m just absolutely convinced something serious is up with my body… I’m only 29 and all my symptoms are so random I don’t know if they mean anything or if I’m over thinking but I just want to know an I feel like it’s driving me insane!

my blood results showed - high wbc, high Rdw, high crp, high neutrophils, and high platelets, my dr reassured me they are in line with a kidney infection (despite the bloods being done towards the end of my antibiotic course) and that they aren’t majorly concerning.

I feel like a lab rat, I am so certain there is something going on in my body, I get random things like for a week I was getting numbness in my fingers, then I have also been getting shortness of breath.. I just feel it’s one thing after another, I think so far they have ruled out arthritis and also a pulmonary embolism… but the c word hasn’t been mentioned apart from by me and then they don’t really say anything an just make further references to the extensive tests they are doing..

I know no one can diagnose me on here, but maybe they can suggest tests that haven’t already been done? Or point me in the direction of what cancer could produce these symptoms? 

I’m worried it could be cervical, like I say I’ve been in a relationship for 13 years, no cheating no nothing, I had very few sexual partners prior to him, which means I must have had high risk hpv for 13+ years at this stage, they only began testing for hpv a few years back an last year was the first time they tested me for it and found it to be positive, my concern is can precancerous cells develop, then turn to cancer, then the precancerous cells won’t be picked up because now it’s full cancer?

I just know something is wrong and I’m so scared and worried it’s going to be found when it’s too late!

any suggestions would be helpful!

  • Just to recap my symptoms are -

    ongoing lower back pain 5 weeks

    abdominal pain mainly when going over the bladder

    swollen spleen with stabbing pains

    the more I move the worse the pain gets so I spend most of my time just laying flat

    high bp - 169/120 was my highest

    tachycardia - pulse has been going between 100 - 126

    slight mild fever

    kidney pain - however kidney function tests are all clear

    Kidney infection / on an off urine infections for 2+ years

    pain during and after sex - to the point where I try to avoid sex at all costs

    bleeding after sex - not everytime just sometimes

    general weakness

    muscle aches

    feeling generally unwell and exhausted - similar to flu

    shortness of breath 

    raised - platelets, wbc, neutrophils, Rdw, CRP and also I’m just on the cusp of prediabetes however the dr said she isn’t worried as they keep moving the benchmark an she doesn’t feel my level is worrying

    i had a rash at one stage too but the dr felt I was getting septic shock due to the kidney infection so just put me on anti biotics an said if things didn’t improve go to a an e, the thing is the kidney infection clearing isn’t improving my other symptoms an issues which to me suggests something else is going on

    Smear done last year showed high risk hpv, but no pre cancerous cells.

  • I’m aware I’m completely spam posting here, but I’ve just had my pelvic examination… there is now a concern about my ovaries ? They want me to have a colposcopy … what is that?! 

  • Hello and thank you for posting. 

    I am sorry that you have been through a difficult time with all of these symptoms. Unfortunately although you have given us a history of what has been happening to you we still cannot assess and suggest tests. When you see the doctors they are qualified to review people and decide if any further investigations are needed.

    I understand you are worried that these symptoms may be a form of cancer but many other things, not as serious as cancer, especially at your young age can happen in the body too. But I appreciate that if you have this idea that it is serious in your head it is hard to stop thinking about it.  

    It sounds like your doctors are listening to you and you have other investigations coming up. Maybe once you have had those go back to your GP and talk through your concerns about cancer and HPV.

    Here is some information on HPV to help you understand it better and here is the NHS information on having colposcopies.

    Take care and if you think it would help to talk any of this through do give us a call on 0808 800 4040, the lines are open 9am till 5pm, Monday to Friday.

    Sarah.

  • Thank you so much for responding,

    im currently awaiting ultrasound of my kidney, spleen, urinary tract, and my ovaries.

    I also need to do a stool test which I am not overly thrilled about  lol!

    My smear is due next month, so I think the dr said it might be worth getting the smear done before she refers to colposcopy because she said if the smear comes back high risk still then they will be referring to colposcopy anyway. She told me that if my smear comes back normal she will then be referring me to colposcopy anyway as she feels it’s important this is thoroughly checked.

    during my pelvic examination today she told me she believes it’s to do with my ovaries as when she examined me I was tender on both sides where my ovaries were but not in the centre so she believes it’s higher up rather than being a cervical issue. 

    im just scared, I’m a mum of 2 and was planning to have my third child in the next few years, I think for me I’m struggling because if it is something serious and I can’t have any more children, I know it sounds so selfish considering I have two but it will be so traumatic if anything health wise has/might interfere with my fertility as I’ve wanted another baby for years but a variety of issues meant I wasn’t able to, now I’m in a place where I can an all this has happened .

    I guess I just want to prepare myself, because I’m autistic the not knowing is torturous - I mean it’s torturous anyway but when you are autistic it’s really hard to get it out of your head! And also mentally I’ve taken a lot of hits, so if this is bad news I need to be mentally prepared for that! I just feel like they are gonna be running tests for months an months an I’ll never know what’s wrong lol!