Undiagnosed illness - any help/advice would be appreciated

[sarah96]

Hi, apologies in advance for long post and if this is the wrong place. I should say, I'm not actually a parent (I'm 24 and female) but I'm desperate for help and advice - I hope it's OK if I post here.

I've been ill for 7 months, it started with fatigue, pain in my RH flank and side, fever, loss of appetite and weight loss, Uti symptoms (pain peeing, bladder and pelvic pain, frequency) and bowel issues (swinging between constipation and diarrhoea), nausea, dizziness and generally feeling unwell. I've been admitted to hospital twice and visited A&E a couple of times and been at the GP a lot.
Bloods have been clear every time they've been checked, apart from dehydrated (despite drinking +2l of fluids every day, mostly water). I had an abdominal ultrasound and CT to check kidneys, bladder, reproductive organs (always had horrendous periods) - all clear. Was reluctantly treated with antibiotics for a few months which helped the Uti symptoms, and the fever responded well most of the time, in case it was a stubborn kidney infection/uti they hadn't found. In January I started with intense coccyx and rectal pain.

In February there I had a laparoscopy to check for endometriosis, which was clear but did find a distended large colon. I was then put on laxido to clear my bowel and after a couple of weeks of this (plus low dose antibiotics) I felt way better. Symptoms had gone and just felt a bit tired. I had 3 weeks of feeling better so I assumed that I was in the clear so, on the advice of the GP, I reduced down the laxatives and eventually came off them. I also stopped the low dose antibiotics (as no one had told me not to). Within maybe 2 weeks of no antibiotics, and 2 days of no laxatives, the fevers and flank pain were back. Fever was between 41 and 38, and I also had terrible abdominal pain and stabbing pain on my left side just above my hip. Was given 7 days of antibiotics by GP and told to only have clear fluids and go back onto laxatives. 4 days later sent into hospital as really ill and weak (plus headaches) as couldn't eat without pain and nausea. The consultant I saw thinks it might be some sort of inflammatory bowel but not sure, sent stool samples away. On the last couple of days of the antibiotics, I felt a lot better - fever down a lot and able to eat. Within two days of stopping, the fever is back up. GP refusing to give any further antibiotics until I get diagnosis (but can't get seeing anyone with this coronavirus, even private is closed) but receptionist telling me it's not urgent and to "manage your symptoms at home". I can't even get speaking to a GP now. Ended up taking left over low dose antibiotics from the previous time, which I didn't want to do but am desperate. Struggling to get things under control and I'm really scared and frustrated.

Does anyone have any experience of something similar, or any advice? I really need some help.

Thanks

Sarah

[Appiandterri]

but receptionist telling me it's not urgent and to "manage your symptoms at home"

Well that is appalling. Ask her which university she got her medical degree from!
Surgeries are open today and Monday as bank holidays have been cancelled. Phone and book a telephone consultation with a dr -a different one if possible-if the receptionist asks what it’s for tell her you have a need to discuss things privately with a Dr and you don’t want to say. If she refuses ask to be put through to the practice manager.

I can’t offer any advice re symptoms but it’s not right that you can’t discuss things with a GP.

[sarah96]

Thanks for replying! I think my mum is going to have a go on Monday - she seems to get a better response. It's a terrible practice, I'm going to try and move to a different one if possible. My female friends seem to have the same issue but tbh the hospitals have been much the same. If they can't figure out what's wrong in 5 mins they don't want to know - it's really frustrating. It seems to be if you're a young female, it like you're automatically labelled as hysterical and a time waster, they try and make you think it's all in your head. But I know it's not! I have a fever and am losing hair and getting gum issues now so I know there's something wrong somewhere. Sorry for the rant!

[KoalasandRabbit]

I had similar for about 9 months a couple of years ago (mid 40s) really ill in those 9 months, getting fevers every couple of weeks, uti symptoms 50% of time, aches, pains, fluish, would go delirious and hallucinate when fever got high, very dizzy, collapsing, unable to work. Bleeding from bladder, bowel including clots and vaginal bleeding.

Really struggled to get help on NHS, would give me urine tests 50% of time showed uti, 50% clear and no antibiotics. Each time antibiotics improved things but then same a week later. Got referred to urology on NHS massive delays and different person each time lost all my notes and got nowhere, they did do cystoscopy after 6 months which at least showed not bladder cancer. Referred to gynae on NHS but at private hospital they found fibroids and did an operation to remove them but symptoms persisted though at least knew clear of uterine cancer as they wanted to test for that. Collapsed and became very delirious after operation and getting bleeding from bowel, went to hospital - they found a temperature and said suspected pelvic infection but said I urgently needed to be checked for bowel cancer. Got referred privately and it was clear. Hospital gave me 14 days double antibiotics and that helped a lot, 50% of symptoms disappeared. I got referred privately for bladder cancer after getting blood clots come out of bladder, they did CT, it just showed enlarged adrenal gland, enlarged uterus but no signs of cancer. They did a uti test and found a uti, despite NHS saying no uti a day earlier. They said it was a rare one but strong and gave me 14 days antibiotics which really helped.

Never completely know what it was but antibiotics cured symptoms apart from neurological and ones related to periods. The periods one is probably peri-menopause. Hope you can get help. I think mine was some kind of persistent infection which needed antibiotics earlier on, only other possibility or possibly as well was it started just after a holiday where we were in rainforest with wildlife a lot and being bitten and had strange bite. Private I found was much more thorough and faster, NHS atm I think is not seeing unless an emergency though can try. I wish had gone private earlier as ended up losing my job as so ill but is expensive.

[sarah96]

Thanks for your reply, I'm sorry you lost your job - the same thing happened to me in February there.
I've been private once for gyn as NHS refused to see me, private then referred to NHS for laparoscopy. I think I'll need to go private again, this time maybe bowel as uti symptoms seem to have gone atm (touch wood) but no private is taking patients atm. I'm getting so desperate as feel really ill.

[KoalasandRabbit]

I had to stop the private when my job stopped so then I used online doctors services to get antibiotics. It's not ideal and you do need to see a doctor as well when they are open again but I got advice from an online doctor and got antibiotics longer term and the infections stopped. I'm still not completely right but they think what I have now is ME though brain scan showed TIAs/small vessel disease but I did get the regular infections which made me feel like death stopping after antibiotics. I also used 111 at times but doubt that's much use now but it did get me sent to hospital a couple of times where I first had the antibiotics which helped a lot.

Have you had a lot of weight loss? It's highly unlikely due to your age but that can be a sign of cancer. The doctors wanted me to have quite a few cancer checks with similar symptoms plus bleeding - was probably the bleeding that got me referred but they all asked about weight loss (I had none), they were all clear. Presumably as CT is clear you are clear for uterine and bladder / kidney - the other ones I was tested for were bowel and the normal smear. I would think it's much more likely it was something like a missed kidney infection but sounds like you may have bowel issues too. I hope you can get some help, it's horrible being ill.

A very kind lady on here e-mailed me and helped me but I know she is very busy dealing with coronavirus patients atm.

[sarah96]

I'm having to use my house deposit savings for private, which is gutting but really have no choice. At least I'm in a position where I have some savings.
That's a good tip about online - which ones are reputable?

I have had a lot of weight loss but I have been unable to eat much so they're not that bothered about it. They keep telling me that it's definitely not cancer because it would have shown up on the CT or in bloods. But I am worried about it, I've had bleeding from the back passage but they thought it was a fissure - not been checked though. My grandad on my mum's side died of bowel cancer, and we lost my Dad a few years ago to lymphoma (but lymphoma seems to be ruled out) and my gran died of bone cancer.
I'm really worried about it, and frustrated. No one seems to care.

[FaithInfinity]

My sympathies because I’ve had similar in the past and it’s awful. I too had people fobbing me off. I had to repeatedly go to the doctors to push for more tests because I was in agony. In the end they found and treated endometriosis in my case...if I were you I’d be pushing for a colonoscopy (one of the tests I had that was normal!). Especially with the hair loss and rectal bleeding I would suspect some kind of bowel related issue but that can only be confirmed with a colonoscopy. Unfortunately I know my trust have stopped all but emergency endoscopy procedures in the current climate but I would push to be put on the waiting list. I hope you get some answers soon.

[KoalasandRabbit]

So sorry you are finding it so hard to get help. It was about a year after I first had rectal bleeding for me to be referred for colonoscopy. It was all clear and it's a horrible test but it's a cancer that often gets picked up late in this country. It's unlikely it's that given your age but I would push for them to test for it just to be absolutely certain.

I used a few online ones - can't remember the names apart from Push Doctor, which was fine but think they've changed what they offer now. There's a regular of medicines which has a symbol on to check medicines are safe, can check companies on here:

medicine-seller-register.mhra.gov.uk/

Sorry to hear about your Dad and grandad.

[sarah96]

Thanks so much both of you, I'm getting so discouraged. Yes I've been asking for a colonoscopy but because I don't have referrals I can't get on the list. It's all had such a negative effect on my mental health, so I really appreciate your replies.

[KoalasandRabbit]

It's probably worth mentioning family history and saying you are worried. I think it's highly unlikely to be cancer but in rare cases it can be. Might be worth self-referring for NHS counselling too to help with anxiety with cancer etc tests - I know I got very nervous when I got ill and the anxiety can also cause further symptoms which makes it even harder to get a diagnosis.

www.nhs.uk/conditions/stress-anxiety-depression/free-therapy-or-counselling/

[FaithInfinity]

My pain affected my mental health. It limited me so much I couldn’t work, couldn’t sleep...I highly recommend the ‘Pain relief’ app by Andrew Johnson. There were times when that was the only thing that helped me get relaxed enough to sleep. I really hope you get a colonoscopy and some answers soon

[sarah96]

Yeh, I've mentioned family history but no one seems overly concerned about it. I've contacted the GP practice manager to ask for their help and to file a complaint if they won't do anything - see if that kick starts things. I don't want to do that but I've not got any other options really. Contacted consultants' secretaries (ones that knocked back referrals and a private one) to see if I can convince them to help.
I'm actually seeing a therapist privately, I'd started grief counselling before this all started but obviously had to cut way back since lost my job. I've been offered antidepressants by GP but no counselling. I didn't want medication because I know fine well that once I am physically better I will feel better mentally - constant pain really takes all your energy.

[PlanDeRaccordement]

I open you get the colonoscopy soon OP
A friend of mine had similar symptoms to yours and it was Crohn’s disease. I just mention it because I’m hoping it’s not any sort of cancer for you.
www.nhs.uk/conditions/Crohns-disease/

[KoalasandRabbit]

If you are in England you can self-refer for free NHS counselling using the link above, if that's any use. Hope you can get referred to a bowel specialist, hopefully something treatable. I think its very, very unlikely to be cancer but best to be checked. I'm don't know about bowel conditions but the link above the conditions sounds very plausible as an explanation and hopefully it is something like that. I did find some GPs much more helpful than others

[sarah96]

Thanks so much, I'm hoping it's something treatable and it's not been left for too long.
I'm in Scotland so unfortunately can't self refer, I like my therapist anyway but just having to cut back on sessions.
Hopefully hear back from the practice manager this week but if not I'll be phoning. I've also emailed the Scottish Health Secretary, doubt I'll hear back but I felt it was important to let them know about all the issues folks are experiencing trying to get care, not just myself.

[KoalasandRabbit]

Hope you get some help soon. I saw there's this in Scotland, don't know if it's any good but it's free: breathingspace.scot/about-us/who-we-are/