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No diagnosis, I've been suffering for years

(30 Posts)
TakeMeToTheFresh Mon 19-Mar-18 23:26:33

I'm 20 now, it started around age 14.

Vomiting blood unexplainably - I've had a few endoscopies. All confirmed something called H Polyri but nothing else. Not even an ulcer. This comes and goes but is most frequent when I'm having one of my 'flairs'

Bleeding from the back passage. It's every day. Awful. No piles or fissures found. It's internal.

Blood stained urine. Constantly. My irons is the colour of red wine.

Blood tests have been taken numerous times over the years and have only ever shown anaemia.

Sore joints - This is always there but again, has its 'flairs'. Sometimes it's extremely bad.

Extreme exhaustion

Heart palpitations

Headaches

It's all so much. I can't really take any more. My mental health has always been very good but as of late, I'm starting to wonder what the point is.

It puts a strain on DH, it must do. Although he insists it doesn't. I feel bad for him, having to put up with all of this.

I am on maternity leave at the moment and I'm praying I won't be in a 'flair' when I go back. I've lost count of the times I've been signed off. Thankfully I work for the NHS and they happen to be quite understanding at work.

Sorry for the rant, just so frustrated.

villageshop Mon 19-Mar-18 23:32:25

Ulcerative colitis?

www.nhs.uk/conditions/ulcerative-colitis/

Sorry you are suffering. I hope you get a diagnosis and treatment soon.

TakeMeToTheFresh Mon 19-Mar-18 23:36:49

I've never heard of that village

Many thanks for bringing it up, I'll mention it to GP!

applesandpears56 Mon 19-Mar-18 23:37:07

Go back to the dr and demand some scans! That’s not at all normal.

Kidney issues?

TakeMeToTheFresh Mon 19-Mar-18 23:37:28

Kidneys have always come back as looking very normal sad

applesandpears56 Mon 19-Mar-18 23:38:38

What type of scan have you had though?

Have you had a blood test to check for kidney function?

applesandpears56 Mon 19-Mar-18 23:39:39

What is your blood pressure like?

TakeMeToTheFresh Mon 19-Mar-18 23:39:43

Kidney function always comes back as normal

I've had a kidney ultrasound. That's it I think for the kidneys

TakeMeToTheFresh Mon 19-Mar-18 23:40:07

Blood pressure always normal, so far. Sometimes a little low

applesandpears56 Mon 19-Mar-18 23:40:11

Other thing maybe lupus?

Floralnomad Mon 19-Mar-18 23:42:28

Have you had the H pylori treated

TakeMeToTheFresh Mon 19-Mar-18 23:43:19

I've had it treated yes, and each time they check to see if it's gone by checking my stool samples. Always comes back that it has but a year or so later I'll have another endoscopy and it'll be back hmm

PinkFluffyChickenTrousers Mon 19-Mar-18 23:46:44

My mum has ulcerative colitis and has many of the symptoms you describe. She suffered for years (is still suffering now actually) and all blood tests from GP came back fine. It wasn't until she had a colonoscopy that it was confirmed.

Do get yourself back to the GP and ask for a referral for further testing, you shouldn't have to live like this OP flowers

villageshop Mon 19-Mar-18 23:50:05

Flowers from me too.flowers

Skiiltan Tue 20-Mar-18 00:20:16

Helicobacter pylori is a bacterium that colonizes the stomach (it can live in very acidic environments) and causes gastritis and duodenal/gastric ulcers. However, a very large proportion of the population has H pylori but only a fairly small proportion of those get ulcers.

Ulcerative colitis might explain rectal bleeding but is less likely to account for the other symptoms. Anyone with joint and kidney problems might be investigated for systemic lupus erythematous SLE, "lupus"); if it was lupus affecting your kidneys your serum creatinine would be expected to be high and your estimated glomerular filtration rate (eGFR) low, but your kidney function tests are normal.

Haematemesis (vomiting blood) must be very unpleasant. I'm surprised nothing at all has shown up on endoscopies. Were these done when you had recently been vomiting blood? And was the endoscope inserted via your mouth or your anus? (Obviously these show up changes at different ends of your gastro-intestinal tract.) Haematuria (blood in the urine) could indicate a lot of things: most obviously mid-cycle menstrual bleeding but also problems in the bladder (e.g. cystitis), ureters (trauma or infection) or kidneys. I think you need your GP to explain what has been tested for and what has been ruled out.

Another possible cause of episodic joint pain (usually in the hips) could be endometriosis, which might also account for haematuria and bowel pain (but not usually rectal bleeding). The most common symptom is severe menstrual pain but this isn't absolutely always the case.

Palpitations is a very general term and can encompass anything from anxiety to atrial fibrillation. Have you seen the GP while experiencing them, or had an ECG?

There are so many possibilities that you really need to find out whether your GP thinks all your symptoms have a common cause or if s/he is assuming different causes for different symptoms. Try writing down a list of your symptoms with approximate dates. This could help you to avoid getting hung up on possible reasons for one and forgetting to mention the rest.

It does sound like you're having a terrible time. I hope you get somewhere soon.

INeedNewShoes Tue 20-Mar-18 00:23:52

You need a colonoscopy to check for colitis in my view.

I have ulcerative colitis and when it flares your list of symptoms is a perfect match aside from the vomiting (which I don't experience).

Crohn's is another possibility.

RabbitsPikasAndHares Tue 20-Mar-18 00:51:45

Red urine- have the doctors considered porthyria? It is very rare so may not be thought of or tested for.

FellOutOfBed2wice Tue 20-Mar-18 01:00:34

This sounds like me OP. I’ve had similar symptoms on and off for 15+ years. I’m being tested currently for ulcerative colitis and Lupus.

Fretfulparent Tue 20-Mar-18 01:12:05

Clotting disorder?
Do you bruise easily ?
Heavy periods?
Nose bleeds?

ShovingLeopard Tue 20-Mar-18 01:13:51

This all sounds dreadful, OP. Have you considered Ehlers Danlos? Might be worth having a read through of the different types.

frasier Tue 20-Mar-18 01:24:48

I have ulcerative colitis. Some of the symptoms you describe happen to me in a flair (don’t remember having blood in urine or vomiting blood). It can come and go, it might not be picked up.

Have you tried changing your diet? Google “Breaking the vicious cycle”. It worked for me.

TakeMeToTheFresh Tue 20-Mar-18 08:19:47

Hi all, sorry for the delayed response!

I haven't had a colposcopy so that's probably a good idea.

The endoscopies I've had have all been for the stomach, so camera down my throat.

Surely I would notice vagina bleeding if the blood from my urine was due to something period/fertility related? Yet whenever I check my cervix etc (not during my regular cycles), it's just normal, clear mucus?

The blood comes from the urethra but only in urine, I never have a bloody urethra if that makes sense? blush

I bruise very easily but clotting has always come back as really good.

Endoscopies are always done with recent big bleeds, mostly. They are usually carried out when I've been so ill, I've had to go to A&E due to how much blood I was bringing up. Scary stuff, looks like someone has shot me through the gut or something.

Stiff joints seem worse during colder weather but that could be a coincidence

TakeMeToTheFresh Tue 20-Mar-18 08:21:05

I've not heard of Porthyria, Ehlers Dahlos.

I'll look those up

JohnHunter Wed 21-Mar-18 13:48:15

That's quite an array of troubling symptoms! What specialists have you seen so far? Do you have abdominal pain or fevers when having flairs? Is the bleeding worse with menstruation?

TakeMeToTheFresh Thu 22-Mar-18 11:15:01

JohnHunter I have seen GPS, Urologists, a Rheumatologist and gastric specialists.

Very bad abdominal pain during flairs.

No fevers.

Periods are very straightforward

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