LUPUS UK
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Just sent this to thyroid group in reply to a question from helvella

Just got back from walk in centre at local hospital.

Advised to go there, after phoning 111.

Phoned 111 after GP receptionist told me to, because of my symptoms, and because they have no appointments, with GP or nurse, until after Christmas.

When it was my turn, at the walk in centre, I was first seen by a nurse. I explained my reason for being there, ?UTI ?vaginal bacteria infection (I had used and paid for, a self testing swab, from pharmacy advice, it came up bacterial, but two types indicated, see a doctor). I also told the nurse I suffer with Sjogrens syndrome.

I didn't get to tell her that I have autoimmune thyroid issues, because the nurse told me, Venus Williams has Sjogrens syndrome, its just a label, and Venus Williams plays tennis. That it is better to have that sort of attitude. See Sjogrens syndrome as just a label of many little things...

After giving me this appalling, judgemental sermon, the nurse dismissed me to the waiting room... my BP was 200/106 no mention of this, no urine tested....

I was eventually seen by a doctor. He came to waiting room just as my husband had text asking should he leave to collect me now, ... I followed the doctor to the room, asked if he would mind if I just text the word yes to my husband (as it was a fair drive), doctor says, sure, you will get more anxious if you don't... at that point, I couldn't help but think, ah, nurse has handed over her opinion...

I wasn't anxious, she was rattled..

I have started on antibiotics, told to see GP if no better in two weeks, for a vaginal swab. I told doctor, I have one here, you could send? Doctor told me, no, nhs, wouldn't recognise that, they want their own...

I am still feeling unwell, no temperature taken in hospital, think I have temperature... husband just told me, no patients are important in nhs nowadays, I fear he is right...

Anxious? No. I was trying to be proactive. I still don't know what/if I have an infection, according to nhs. Yet, I am told to take antibiotics...

No bloods taken, self test kit was of no use, no temperature taken, I asked if hospital could do swab today, doctor told me, no, GP or practice nurse has to do that.

Please answer me this question, if you can, why are medics giving out labels, if some medical staff believe they are irrelevant?

Furthermore, what could I have done better? Just not report symptoms that are worsening?

NHS HAS LOST ITS HUMAN FACE...

today, I saw not a trace of care. I experienced judgement, and opinions, based on nothing more than perceptions of medics.

During my visit, there were numerous nhs staff, checking out, and admiring, the brand new department we sat in.

Personally, huge tv screens, smart plastic seating etc, are not what I sought, I needed the right treatment plan for my worsening symptoms. The smart room has not made me feel better.

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I have often wondered if Venus Williams having Sjogren's (maybe, I'm far from convinced personally) may be doing a great disservice to the ordinary patients who can't afford private medical care and a chef to prepare the raw vegan diet she swears is what keeps her going. Obviously my suspicions were correct.

Who was looking round? Mr cHunt?

To be fair - there is still care in the NHS in many places. You drew a short straw tonight. Doesn't make it right.

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Hi Webar. I’m amazed that a nurse even knew enough about Sjögren’s to know Venus Williams has it?! Makes me think she’s scared of having it herself and therefore trying to rationalise - maybe this is her issue more than yours??! A lot of nurses do seem to get chronic/ autoimmune diseases compared to the general population I think. Stress as trigger?

I’ve had some great care from the NHS over the past few weeks but I have seen one clinic (ophthalmology) brimming - my appointment was one and a half hours late! However everyone I’ve seen in the hospital over the past few weeks has been friendly and polite and all have appeared to take me seriously.

But then this was only in outpatient clinics. I haven’t been to A&E for a few years - not since relocating thankfully. That nurse you saw would have had a piece of my mind if she’d said that to me when I went in to check out severe thrush. I think A&E nurses and doctors often only give acute/ emergency life threatening cases time of day. They just can’t sympathise or deal with with chronic illnesses. Too close to home as I have suggested earlier?

When I was an inpatient a lot in 2015 nurses seemed to always want to tell me they too have RA symptoms or are hypothyroid but can’t get anyone to listen or investigate further.

I have to say that there is all too often a lack of joining up of the dots. And when we try to compensate by doing this ourselves we are often met by an eye roll or worse. They should have thanked you for swabbing yourself and saving nhs time and money!

I too have vaginal thrush and a widespread fungal infection presently and I didn’t feel the male GP was at all comfortable about examining the skin under my breasts or around my mouth and ears - let alone giving me a swab below! He made me feel rather unclean by commenting that they see a lot of this kind of fungal infection in elderly people in care homes. He wasn’t interested in the CTD appointment I’d just come from and didn’t take my temperature or ask me how I was feeling with these red spots and pustules all over my trunk!

I’m not yet 55 and extremely well washed so this comment about care home residents rather offended me I must say. I wanted to tell him that I have a bath daily and point out that having a widespread fungal infection going on is actually very autoimmune/ Sjögren’s and immuesuppressed.

But I thought better of it. I decided that, if he can’t work out for himself that max dose of Mycophenolate and my autoimmunity are the culprits then he must be a bit thick as well as prudish!

So maybe you wouldn’t have fared much better with a GP?!

Twitchy xx

PS struck dumb that the hospital could discharge you with a BP that high?! Bizarre and totally negligent!!

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" I wanted to tell him that I have a bath daily "

Actually that probably DOESN'T help. Apart from the likelihood of those folds remaining slightly damp and creating a loving home for yeasts, frequent washing with cleaning products of any sort upsets the balance of organisms on the skin - the relationship of good and bad is upset and makes room for the big baddies to push the goodies out and take over. Just like the balance of gut organisms becomes upset when you are on abx.

One way of helping the damp problem is drying such areas with a warm (not hot) hairdryer. And showering with just water will remove all that needs to be removed. I haven't used soap or deodorant (they don't help either) for about 13 years. It goes with that other discussion about body smells in various diseases. Very early when the PMR started, I noticed I smelt awful after a gym class, even Pilates - despite a shower in the morning and using deodorant. I tried a load of different deos, difficult as I was allergic to any with aluminium in, but none worked. So I went about it by deciding to just wash thoroughly and repeatedly with minimum soap and use no deo. After a couple of months all was well - and over time I also gave up using any deo as the only one I could use was taken off the market. And I promise - I don't smell. I smell fresh sweat on me but it never becomes that stale horrible smell.

Can I also just say that I get the impression YOU were uncomfortable about seeing a bloke - and I have no doubt he picked up on that.

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You see I’m coming from a different place to you Pro. My hubby has worked in care homes with the elderly for 20 odd years and I know too much about the older generation’s tendencies to see water and soap as the devil!

My 88 year old mother in law disclosed quite jokily to my husband the other day - that she hadn’t had a shower or even a soapy wash (or any kind of wash - judging from the pong when we visited) for 3 months since being in a nursing home. She thought this was fine. They had probably offered to help her but she had adamantly refused as is her right. My hubby says this is very typical.

I can’t shower because I can’t stand up for longer than 20 seconds. I need the heat to reboot my freezing core and extremities so baths are my favourite daily luxury. And I use a very luxurious bar of soap very sparingly. I do my MBG eye pads. Afterwards I dry everything very thoroughly indeed!

I don’t break sweat at all anymore - it’s a very common Sjögren’s thing. But any smell I do get off myself is disgusting and very yeasty so I’m super vigilant about drying and use a daub of tea tree in cotton wool for larger folds! Never had a fungal infection or even sore patches for years despite all this so I don’t think, in my case, that it’s the baths or soap.

When we lived in the emergency flat over the bridge while our housing crisis was in progress in 2016 - there was only a really rubbish shower with a light bulb directly above! My feet were covered in dry skin and Livedo all the way up my legs and this was when my eczema and pompholyx returned so I think I do much better hygiene wise with daily baths followed by doublebase cream rub on my extremities.

The GP is actually a bit of a sweetie but of a different culture to mine and definitely not good with examining women. He was all I could get that day but it was definitely his issue not mine. I just desperately wanted relief as the sores were driving me mad!! My friend had a fall out with him when he failed to help her husband to get help for his severe clinical depression. At the time I thought she was being a bit too needy about this but I can see that this doctor is not good at certain aspects of primary care. Woman’s health and mental health aren’t his strengths it seems!

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PS and re Venus - there are those who say that she can’t have Sjögren’s as claimed because she sweats copiously! I had to quit Zumba 3 years ago because I would overheat and faint - same with anything aerobic - we need to sweat it keeps us healthy. And this is why we with Sjögren’s are so prone to thrush and fungal infections I believe. No sweat not good.

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I do see your view perfectly despite being the other side. I can't do baths - I can't get out!! If I couldn't stand we'd have to have a bigger shower put in so I could sit as my friend does!

I also struggle big time with male doctors with certain cultural backgrounds - I've had a few really bad experiences.

No doubt the riposte would be that she has her Sjogren's controlled by the diet...

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Hmm more likely Prednisolone and Pilocarpine and maximal physio and therapeutic input I would say! I say this because, according to a very bitter gentleman scientist with Sjögren’s - a US journalist did get hold of her medical records - listing medications in relation to sports federation blood testing exemptions I believe. Prednisolone was defintely on there but of course this may just have been to get things under control in the early days. The sweating, not drinking much during breaks and not applying eye drops etc is very perplexing but then it’s a massively broad disease - hence the term syndrome. No one would ever guess my son has Aspergers unless they spent a period of time in his company!

And of course cancer can be mild and no life threatening. MS and Lupus and RA can be mild - or very severe. So why anyone with half a brain would apply Venus’s experience of Sjögren’s to Webar’s I just don’t know?? Some with a Lupus can run marathons where others are wheelchair bound - same thing applies to SS, RA and most autoimmune diseases of course. We see all spectrums here on this HU.

Getting into to our small bath is fine but getting out again is becoming increasingly challenging.

I had a nasty slip slide a few weeks ago - nearly knocked myself out - so no locks on door and only have my bath when someone, preferably my hubby, is in the house and knows to keep his ears peeled for cries for help!

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I think a lot of "Staff Nurses" who used to to have 4 years experience on the wards & OP departments, now have a lot of book learning with a Nursing Degree, but not enough experience of real life patients.....with real life symptoms.

I also find a lot of them are more interested in exotic ilnesses they have read about, & will probably never see, but us poor mortals with"just RA" don't spike their interest, hence the thoughtless remarks,

I hasten to add, I don't include the wonderful NHS rheumy nurses I have met over the years.

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Thank you for replies, and sharing of experiences.

I wrote a long reply. And, not for the first time, suddenly, my iPad started singing and dancing, and 3 times strange icons appeared saying sent. I had not posted! All I can think the first reply is in blue yonder... so many companies interfering with technology, I will probably get bombarded with asking me to buy products for vagina now!!! Lol..

Twitchy, I didn't go to A/E, I was directed to walk in centre via 111, as no GP or nurse app or out of hours doc left. Only 7 patients in there lots of staff. Numerous officials and hospital staff meandering in the New premises.

I agree 're BP and she did it twice. What can I say?

It's first time I've ever had vaginal fungal/bacteria problem. You were lucky to get examination. I wasn't examined, didn't have urine tested but told take nitrofurotoin. Still not sure the reason I'm taking it.

Yes, you would think they be pleased I bought swab test! Apparently, they not worth £10 as he said irrelevant to nhs! It's so exasperating! Test showed one of two bacterial infections. If only I could've bought antibiotics OTC. Anyway, you have made my day! All sjogrens related o joy! Lol so probably first of many to come?

When I was diagnosed myxodema, 25 years ago, I had ablation of endometrial. That's not going to help with sjogrens and infections, is it?

PMRpro, I agree, no soap. Vagina self cleaning system.

I guess I am now researching Candida.. just in case. Hopefully, alter diet again to prevent reoccurring problem.

Venus Williams. What can I say? To be compared was an insult regarding sjogrens. For goodness sake, I have an issue requiring antibiotics, why even mention Venus Williams. I understand the post from twitchy, some time ago, regarding Venus. I see exactly what you meant!

I had 3 babies, all between 8-91b, I had no pain relief, whatsoever, does that make a midwife compare with millions of other women who require drugs, epidural, no... what is the point of comparing?

When will the medics who throw in personal opinions, learn, we are each, and everyone, individual? Please have some respect! What we have is a disease or may be a pregnancy label in common. That does not mean our experience is exactly the same!

Anyway, I am feeling a little better today. Antibiotics must be helping with whatever I have Lol xxxx

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Hope your rant has helped a bit too - and I'm with you all the way!!!!

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I am glad you are feeling better. I too have SS. Whenever I have to be on antibiotics, I make sure to eat yogurt daily. It helps to prevent kidney infection. I also agree with the using only water to clean vagina as, it is a self cleaning system.

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Glad your rant has helped.

But just one thing - I wasn’t examined either - just guess work at both ends - he half looked at the horrible rash under my boobs and declared me fungal is all! Still shocked about the BP though! Maybe they knew that they had given you such severe white coat syndrome that they were the cause of sky high BP- also probably didn’t want to sully their pristine new make over premises with anything other than full on blood and gore!!

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Thanks MNJones76,

I do have a yoghurt everyday. I also have yakult daily, which I was going to change for a better unsweetened macrobiotic, however, my private Dr for thyroid, suggested I continue yakult as my system ok with it.

I take heed of what you say regarding kidney involvement prevention. I was hopeful that I would not need antibiotics but my legs keep swelling (calf only), and that can be a sign kidney involved.

So, despite the remarks comparing Venus Williams, I am happy to have antibiotics even if it is prophylactic.

The nurse comments were ridiculous, judgemental, unnecessary, and opinionated. I'm sure, even Venus Williams, has to succumb to antibiotics sometimes.

When Twitchytoes posted, about poor awareness of Sjogrens, she did mention Venus Williams. At the time, I hadn't considered, that the very fact, Venus Williams, exercises her right, to keep quiet about SS, by so doing, she could be used negatively, as a comparative study by a medic.

Maybe, next time I see a medic, I start off saying, you know Venus Williams has SS, well I want the same treatment please. I want to play tennis! Lol

I walk at least 10 miles a week. I'm not doing too badly. Infections come to most people..

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Agedcrone,

I get what your saying. And, yes, there are many great nurses. I was one of them. This is why I comment; I know a nurse was never trained to make very personal comments.

Her comments go against RCN guidelines. I won't complain officially, because, a nurse like that, has poor understanding of how she comes across. Hopefully, she will learn, one day.

Wouldn't it be lovely if Venus Williams uses HU on her off days? Even better, if she realised she is in a great position to raise SS awareness?

Ah, we can but dream...

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Following on from my previous post 're ? vaginal infection.

Well, I spent Boxing day in bed, at my daughter's house. I had shivers, was dithering, hyperthermic, temp 35.. felt very unwell, despite taking antibiotics, as advised walk in centre (nitrofuritoin).

I duly attended GP practice nurse 4 th January, telling her hospital wouldn't do vaginal swab, wouldn't dip urine (I suggested I should get urine dipped, Dr agreed send sample off, no dip to show if urine infection was done), so, I was at GP for vaginal swab. As hospital would not accept result shown from self test kit, showing infection.

Nurse did swab, and sent off to same hospital that refused to do one ( hops staff told me GP must do, despite me going to walk in centre feeling very unwell, as GP got no appointments). My symptoms have since been on going, Christmas, New Year, to date, dragging me down..

January 10th, nurse phoned, telling me, profuse vaginal infection, go collect antibiotics from chemist. I collected antibiotic, which had sat in chemist from day before, whilst my symptoms worsened.

I am still feeling very uncomfortable, very unwell, so went back to nurse today for review. My legs feel heavy and swollen again. My hips are so painful. I continue to shiver, yet perspire, awful body odour. Advised carry on with erythromycin 250mg 4 times a day.

I told nurse my throat suffering today, glands up, could the recent outbreak on my skin be involved. Nurse thought those statements hilarious, "what, you gone from ankle, to flue, to throat?" I'm not amused.

I feel that if I had been treated, right patient, right time, right investigation (swab, urine, maybe bloods), I could have had the correct diagnosis and correct antibiotics 22nd December. Such professional care would have saved the nhs money (2 further appointments, one extra prescription for antibiotic), and most importantly, I would not still be suffering horrible symptoms.

Yet again, I feel the nhs has let me down. I never thought I would say, but say it, I must, bring on private health care locally. When it comes to my health, I would forgoe many things, to get the meds and support I need, in a timely manner, without personal, flippant comments being made.

If anyone here, has any helpful comments to make, that may help my symptoms improve sooner, I would so appreciate it.

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