LUPUS UK
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So upset & in pain - UTI

I posted about my potential UTI this weekend and have had some great replies.

This morning things were no better so I dropped my urine sample at GPs surgery with a little note explaining my situation.

My home test has showed slightly raised Leukocyytes and high specific gravity and then yesterday a raised pH and protein.

In the last hour I’ve developed a lot of pain and have got a bit teary.

I just phoned and asked if I could see a GP this afternoon.

She said it’s emergency’s only.

So I explained I’d dropped a sample and things had taken a turn for the worse and I was in a lot of pain.

She checked the screen and urine check showed nothing and do I don’t quality as an emergency and I’ll have to wait for tomorrow and phone at 8 to get appt.

Now I’m really upset. What do I do?? Not sure I can make it until tomorrow sometime????

Always feels like no one understands or wants to help.

Wendy x

36 Replies
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You poor thing. The stress of calling and getting such a disappointing outcome has probably made you feel worse. Maybe try some deep breathing exercises to try and calm down?

It must be absolutely ghastly to feel that no-one is listening or understands your pain. I’m lucky as I have a very good GP who knows my whole history and is v sympathetic and helpful.

I wish I could help you. Try not to get too despondent as this can make you feel worse. Make yourself a hot chocolate and relax with one of your favourite shows or books?

Lots of love and support

Betsy

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Hello. I had a little lie down yesterday afternoon before the school run, but couldn't sleep. But I went to bed at 7pm last night and stayed there until this morning. I have managed to get a doctors appt this morning, after going 10 rounds with a different receptionist this morning. Let's hope I get a nice GP.

Thank you

Wendy x

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So when did SHE get her medical qualifications? Have you seen this?

theguardian.com/science/201...

I'd be down there and informing them you will leave when you have been seen today. Is there a Minor Injuries Unit anywhere near you? The one in Whitby has been a life-saver for me.

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Hello. I have managed to get an appointment this morning. I've just posted update. I have printed that article off. It's great. Not sure if they'll like me handing it over????? But if they say I don't have a UTI and wont treat because of clear sample then I will produce it.

Thank you for your advice. xxx

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I agree with PMRpro...and i’d be v tempted to tell them it’s either being seen by them today or you’re going to A&E. Good luck, take care XOXOXO

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Morning. Just posted an update. I ahve been there this morning and said if I don't get seen here today then it will be A&E. After much to-ing and fro-ing, I have an appt at 11.10am. I'll keep you posted.

Big thank you.

Wendy xxxx

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Well Done 🍀😘🍀😘🍀😘

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Hi Wendy,

I am sorry to hear that you are experiencing a lot of pain at the moment and are unable to get a GP appointment today.

I suggest that you ring the NHS Direct Wales Helpline on 0845 46 47 to speak to a trained adviser. Depending upon your symptoms and situation, the adviser can:

•Give you self-care advice

•Connect you with a nurse or emergency GP

•Book you a face-to-face appointment

•Send an ambulance directly, if necessary

•Direct you to the local service that can help you best with your concern

nhsdirect.wales.nhs.uk/abou...

Is there anyone in particular who you feel does not understand your situation?

We always try our at most best to help and provide support whenever we can. If you would like someone to speak to, we can provide you with LUPUS UK contacts who you can chat with over the telephone. These contacts are volunteers who mostly have lupus themselves; they are not medically trained but are there to offer support and understanding. If you would like a contact to speak to, email me at chanpreet@lupusuk.org.uk

Please let us know how you get on, wishing you all the best.

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Thank you for your reply and advice Chanpreet. I am grateful.

I think I am going to phone that number tonight when I can. I’ve been collecting my children from school and running errands with them. Difficult to put myself first with children to keep up with.

I drank a lot of fluid this afternoon before I had to go out and the pain has lessened. I had a lie down too but couldn’t sleep. But I still have a strong burning and it’s not just when I pee anymore, it’s a constant burning.

I get very frustrated with my local care - very long story. But after 3.5 or more years of feeling like I wasn’t being taken seriously locally, I went to London Bridge privately and got a second opinion. That proved my gut instinct right, in that I had SLE and i’d had it all along, I didn’t have SCLE.

I’ve been back once since and the new medication added by London Bridge has really helped in a lot of ways. I’m heading back in June.

My local Rheumy has told me she won’t be monitoring me any more or booking follow ups. As far as she is concerned I am mild and stable (despite being big on max dosage of MMF daily, Hydroxychloroquine and mepacrine) and she doesn’t have time to see me. And my Dermy isn’t offering me an appt either. Again too busy.

So I am not being monitored by NHS consultants.

My GP has been mainly good, especially one good GP who I thought really got it and she’s helped me a lot in the past.

But I went to see her about 4 weeks ago with suspected tennis elbow (after waiting 4 weeks for the appt with her), back pain, stiffness and muscle twitches and she confirmed what I thought it was, but barely said a thing otherwise. I told her I thought I was flaring slightly and asked her if I should take the recommended course of steroids I have at home - as set by Dr K at London Bridge only 5mg for 2 weeks and then 2.5mg for another 2 weeks, and she told me no, it was like using a siege hammer to crack a nut. I might have caught her on a bad day but I felt she was doing an internal eye roll at me.

I came out thinking I really have to deal with this on my own. They don’t fully understand what it is like. She made me feel like a time waster. I won’t be coming back here again unless I am absolutely desperate.......But they are all I have. No local Consultants. Just GP surgery.

So when I got told I wasn’t an emergency today, by the receptionist, despite being symptomatic and wincing with abdominal pains when I was speaking to her, I was very fed up.

I feel I can only rely on London. But I live in Pembrokeshire, South West Wales.

I should have listened to myself and taken the steroids 4 weeks ago.

Kevin and Paul have been a great help and support to me, especially with setting up my support group. Lupus UK and this site are my life line.

I was very upset this afternoon but I’ll get over it.

Thanks again

Wendy x

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By the way, Rheumy has passed over all monitoring to GP in that they already do my bloods for MMF but they are now supposed to do my irons checks too. None done since September.

Wendy

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I've just posted an update. Such a shame that getting an appointment in such a situation is so problematic. I feel it just shows the huge lack of understanding and awarness even amongst staff at primary care. Lupus and immune suprressed should ring alarm bells for them but it means nothing and they continue on their hard line.

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Oh no poor you! Have you got a good local pharmacist you could ask perhaps?

If, as Pro’s link shows, a significant proportion of UTIs don’t show up in lab tests, then I think your GP needs to know about this and a fall back arrangement put in place for you for times like these.

Particularly with diseases such as Sjögren’s and Lupus and when you are on immunesuppressants.

I’ve been lucky so far and always managed to get an emergency appointment when I’ve needed one, based on symptoms. With UTIs they usually say the nurse will phone first but actually it’s been the GP who has phoned. But either my symptoms haven’t been that bad (mild in upper tract rather than burning pee) or have shown up in pee samples recently so have been dealt with over the phone - antibiotics in chemist sort of thing. I absolutely hate the idea of phoning and getting fobbed off by reception - I’m sure it will happen one day soon as their protocol is same as yours.

Being so symptomatic almost makes you want to have some stuff to add to your pee sample just to get through the door! X

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Morning TT.

Thanks for your reply.

I've just posted an update.

Seeing a GP at 11.10am.

I have this mornings urine dip stick in a plastic bag and that article printed off to take with me, plus my hand written notes.

Leukocytes and protein are only slightly raised but the pH and specific gravity are towards the end of the scale.

The amount I drink is definitely diluting the results - which whilst good for my body is bad for getting help, as weak on testing. You are right. Makes me want to stop drinking and let it get more concentrated to be taken seriously!

Hopefully I'll get a pleasant GP at appt.

Wendy xxx

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Replied on your other post. I think you’re right about diluting - could be your Sjögren’s as we often have a mild form of diabetes Insipidus which leaves us dehydrated as we pee so much. X

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Oh dear Wendy, I’m so sorry to read this, it’s so miserable for you and very very frustrating, they should be listening to your symptoms not just a negative wee sample! I would’ve thought that if you are symptomatic, in a lot of pain AND immunosuppressed you needed to be seen asap!

Did you remind them that you are on immunosuppressants, can you call them and ask to speak to a dr?

I know it doesn’t help your pain but we understand.

Sending you lots of hugs and hope you get seen and sorted really soon.

Diane🌺xx

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Morning. I've just posted a full update. I am seeing someone at 11.10am today. Thank you for your reply and concern. xx

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Hi Wendy I was thinking how you were getting on, joining the others in so sorry to hear your in pain & only water to aid you... Not good... This really stinks putting it mildly. I hope you will beat the surgery door down tomorrow, no good being in pain. Big hug. ML

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Hello. Thank you for your message. I have just posted update. Seeing someone at 11.10am. Like going 10 rounds in the boxing ring getting that sorted this morning and had to threaten A&E.........Burning is bad and intermittent pain in left lower back. I'll let you know how it goes later on. Wendy xxx

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Hi Wendy. Apologies it's been a long time since I have been on. I'm so so sorry to hear you are in pain and not getting to see the Dr quickly. I am not surprised you are teary. One thing is for certain, there are lots of people on this site who are there for you and totally understand what you are going through (or strands of). Pain, in my eyes, is the thing that people who are not in pain, don't quite grasp because when you are in pain, nothing else matters because it has consumed your life and will continue to consume until you get help. I am new to being diagnosed and even then its not official or can't be because I have not had symptoms that long so I am no expert but what I do know of this is that it can just spring up and attack you at a moments notice and astonishingly NOTHING seems to appear on any bloody test! I usually have to count to ten when I get told, yet again, that there is nothing on my mri, nothing wrong with my urine or anything else and I look and act like I am the healthiest person on the planet.

However, I do look for silver linings in every, what seems impossible or bad, problem that comes along. As you can't see a Dr until tomorrow and as others have also said, here are my list of things to do to see if it helps, even just taking the edge off:

1. Bath

2. Bath with large glass of wine (if you can drink) if not then hot chocolate (or variety there of)

3. Gentle pilates or just gently stretching

4. Heat pads if you don't have the energy of getting into a bath

5. Watch a good film that will make you laugh or cry but you are using emotions watching a film, not just your pain

6. Eat some chocolate

7. All of the above

If I am way off track here - then please let me know but I will happily chat to you through this tonight if it means you get sidetracked. However by talking about it, may then make you think about it even more. My go to for pain is playing and cuddling my dogs and crying at the great british bake off at the moment.

Sending you lots of hugs

Ange x

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Could be this - certainly v common with Sjögren’s and Lupus I believe: nhs.uk/conditions/interstit...

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Hello.

I saw a GP I’d never seen before. She asked me to go and do a sample and come back. It showed nothing. I asked, well if it isn’t a UTI what is it? Because I am not well.

She said on my symptoms including the pain in my abdomen, sides and now lower left side of back and burning and stinging, I do have a UTI. She was happy to give me antibiotics. I have a weeks supply of co-amoxiclav, 125mg tablets x 3 a day. She said these work well including if the infection is further up the UT. I asked her if the test was for proof and she said yes. But she is sending it off to the lab.

She said to feel free to come back if I need to. (Ha ha - I felt like saying, if only it were that easy!)

So I am back in bed. So tired. Co-amoxiclav and steroids underway.

Thank you for all of your advice, support and sharing similar experiences. It means A LOT.

Going to keep a close eye on this.

Wendy xxx😘

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So glad you’ve been seen and on treatment, just sorry you had to wait another day in pain!

Take it easy when you can, let’s hope these meds will knock it on the head now🤞.

Big hugs

Diane🌸😘xx

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Wendy, I'm glad you finally got some treatment. I've read so many posts on here documenting similar battles. We shouldn't have to fight like this but, unfortunately, it seems to be the way things are generally and, when you have a chronic condition like this, it seems to be even more difficult to be heard. I'm always glad to see that some of us get treated with respect but it does depend on who you see. I do hope that connective tissue diseases are given some space in the medical arena in the future.

Hope you feel better soon xxx

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Really Unbelievable ..... The US has our problem President now, BUT I can ALWAYS go to my Dr when needed..unless he messes that up too.....

I am so sorry..UTI's or perhaps passing kidney stones...both bring tears to the eyes

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Hello.

Thanks for your reply.

I know you might find this hard to understand, but even after all of this, I would still rather have our NHS, than your system, any day of the week. I think Lupus is misunderstood by many doctors world wide, irrespective of their medical systems and funding.

I am in less pain in my sides and back now, but still a constant burning pain, after 3 days of antibiotics. I am floored with exhaustion.

It's always the same isn't it. You have a good spell and get excited and then something crops up to spoil it.

I hope you have a good weekend.

Wendy

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Actually, I am VERY glad to know that you are happy with your health care. I understand how you would feel that way watching what is going on here in the US with health care issues....I happen to be one of the fortunate ones with GREAT health insurance..and no wait time to see Drs...

I am glad for you having less pain..sorry you are still burning.and EXHAUSTED .

xx

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Thank you.

I don’t think I’ll ever get used to the chronic fatigue. Do you get this symptom too? So frustrating.

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Yes..the Fatigue is really awful and impossible to describe to others who do not have Lupus..or other AI's that have fatigue in the list of symptoms....

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I can't understand why a receptionist should be allowed to turn anyone away when they are in pain.I had uti in november as it was a saturday,and Ihad a docs appointment on the Monday I decided to wait until then.However during saturday night I fell out of bed(which I don't remember)I passed out and w hen I woke up I could not move It was 3am and by the time I managed to knock the phone onto the floor it was 7-30.I don't even remember calling my sister but when I came to there were all these people in my bedroom.The doc who came out had called an ambulance and they were trying to get me out of the bed.The outcome of all that was unbelievable.I don't remember anything for 3days when I could ask what was happening I was told I had UTI,kidney infection,lung infection and plurasy.I was 10 days in hospital and I'm still attending the docs as my kidneys are not functioning properly.So a word of warning to anyone who has UTI get to docs or A&E.I'm still very tired and run down doc said I was lucky to be sitting in his surgery when he read hospital report.

Mivvi32

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Thank you for your reply and helpful advice.

It sounds like you have been very unwell.

How are you recovering?

Wendy x

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If the pain doesn’t ease or gets worse go to A&E as it could be kidney stones. Depends on the level of pain but if bad go back

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Hi. The pain in my sides and back seems better. But the burning sensation isn't. I am soooo tired right now and usually the 5mg of steroids helps me by now, but no. x

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Hi Wendy,

Hope the antibiotic starts working and you are feeling better. Sorry, I only saw your post today. I had also suffered from several UTI last year. I asked my GP to refer me to urologist. I had a cystoscope and urethral dilatation. He also advised me to take D-Mannose tablets as a preventative measure. I have been taking it daily and so far I don’t have recurrent UTI. Looking at some reviews, it seems D-Mannose also worked when you are having the UTI, I guess it is useful if you can’t get the doctor’s appointment.

Take care

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Thank you for your reply.

I think I always worry that with UTI's we are vulnerable anyway, but my concern, rightly or wrongly is kidney involvement. I don't think doctors really understand that we live in fear of kidney involvement with our lupus, whether they think it's irrational or not.

Hope you have a good weekend.

Wendy x

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I totally agreed with what you said. I also worried about my kidneys every time when I had the UTI, especially when I was told the antibiotic that I was taken was resistant to the infections. What would happen if none of the antibiotics work for me, that is a constant worries. If there is little improvement with your UTI symptoms after three days, do you think your antibiotic may be resistive to your current infection and requires a different one.

Hope you are feeling better soon.

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Thank you x

Yes, going to keep a close eye on this now.

She sent my urine sample to the lab to be tested properly - cultured not just dip tested at surgery, even though she said nothing showing. So hopefully I’ll get a call with results???

But if I am still not 100% on Monday I will be going back.

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