The lack of bladder control and the need to wee update

[Lisalou19]

Thank you again to this wonderful site, where I gain so much clarity in others sharing similar experiences. I can honestly say I feel my medical anxiety is slowly starting to disappear and I’m started to get my “I need help” voice back .

So after my last post I sent my hospital the same email every morning for 4 days 🙈 I was sure I was going to get the “mental patient “ label added to my nhs file .

The response was much different, the hospital called Thursday and they booked me an appointment for Friday morning . I must be honest it has taken years to get to this point where I feel like I’m finally being listened too. My specialist wants to rule out a neurological disorder so I am being sent for a brain scan. Also my referral to a Urologist has been processed as it’s not unheard of to have bladder issues .

I was covered in livedo on Friday, so full bloods were taken again. Apparently it’s unusual to see it active on the arms and hands 🤷‍♀️

Anyhow , thank you once again and if there’s anything bothering you whether it feels embarrassing or not , please share on this site, it may just give you the strength you need to have your symptoms investigated

Xx

[KayHimm]

Such a great example of strength, courage and honesty. The hardest thing for so many of us to say as you did so simply, “I need help.”

😘🌺💐🌺 K

[Lisalou19 in reply to KayHimm]

It has been easier having you and others to guide me xx

[EOLHPC]

🤩 Well Done 👍👍👍👍👏👏👏👏

You’ve taught me something: now i know i should be taking note of the liv. ret. that’s always on my hands & arms...your info makes sense to me, cause my version of this does colour up even more when any of my stuff is flaring...so THANKS lisalou 💐💐💐💐

Take Care, keep that chin up & 😉 that funny bone healthy ...please let us know what happens next

❤️🍀❤️🍀❤️🍀 Coco

[KayHimm in reply to EOLHPC]

You and Lisa could be used as examples when medicine has to become an art to bring things to light!

[EOLHPC in reply to KayHimm]

😍 ...such a beautiful comment....well, IF, one way or another, we all have to suffer this ordeal of overlapping immune dysfunction & connective tissue disorder diseases...then at least art & science can be employed to our benefit....following the recent media emphasis on how far&fast HIV treatment has come along (and for sure art & science have been employed there) i can’t help thinking That Could Be Us...someday

[Krazykat26 in reply to EOLHPC]

When HIV first hit the headlines I was working as a CPN with drug users in a treatment clinic..money poured in from the NHS.. suddenly we had resources!! Unfortunately the hospital I was in decided to have its HIV clinic next door to the treatment clinic which really did upset many of our clients..u can imagine!! I had to attend many long lectures n a couple of courses all about HIV as we prepared ourselves for the onslaught of hiv+ patients but it never happened..we did however get good needle exchanges going so people had easier access to clean needles etc!! I too think that it's only a matter of time before lupus n autoimmune disease become more prevalent in this modern world..so we're all pioneers in a way..everyone has an immune system after all so anyone can be affected..no one is immune to autoimmune disease!! 💐Xx

[EOLHPC in reply to Krazykat26]

😺WOW...you have TRULY been working @ the coalface: am sending you a BIG HUG OF RESPECT 😻...this is fascinating & encouraging...for quite some time i’ve been thinking that IF i could go back to Uni, i’d study the history of medicine....i ❤️ your: no one is immune to autoimmune disease!

👍👍👍👍🌟🌟🌟🌟🌟👏👏👏👏

[Lisalou19 in reply to EOLHPC]

I’ve been quiet , very tired today. As always the support, comments are what we all need and this site is the place to get it. Thank you xxx

[Lisalou19 in reply to KayHimm]

Deffo some sort of art going on here 😬x

[KayHimm]

Hoping so!

[Annethlowen]

Thanks for sharing, so pleased you are being listened to at last. I did have bladder issues but now take a tablet each day but I'm not sure if it was lupus. The people who post on this sight are amazing, thanks again.xx

[foxglove in reply to Annethlowen]

Would you kindly tell me which tablet you take for bladder issues? Thanks

[Annethlowen in reply to foxglove]

The tablet is fesoterodine fumarate they work really well just give me a dry mouth. I can live with that.

[foxglove in reply to Annethlowen]

Thanks! I have tried a few others - no joy. Good to hear of something that works!!!

[Lisalou19 in reply to Annethlowen]

Thank you for your beautiful reply. It’s these comments that help us and each other xx

[Lupiknits]

Excellent!

[Krazykat26]

Yayyyy..u go girrlll!! I'm so happy that u now feel able to be more assertive with the people looking after u!! Your still young n have many years to go living with these conditions..it has to be looked into!! So big pat on the back n gentle cyber hugs heading your way from me lady ✋🤗🤗🤗

I agree this site is fabulous!!! Big up to lupus UK n healthunlocked!!! Thank goodness that we have each other via the internet..we would never know each other personally coz I for one don't get out much..n now I know that I'm not alone!! It gives me comfort..I had an imaginary friend when I was a little girl..now I have many cyber friends!! So pleased for u Lisalou xx

[Lisalou19 in reply to Krazykat26]

Awe thank you. I feel connected to so many of you on here. I couldn’t get through half of this without you guys xx

[Krazykat26 in reply to Lisalou19]

💖💕💖 xx

[CecilyParsley]

I am so very pleased that they are listening to you at last. Good luck with the tests Lisa. Please let us know how you get on x

[suemh2]

Thank you for your comments on bladder issues. Having been told by a GP my urgency problem was due to an irritable bladder, I was tempted to say doubt it but I'm one irritable patient. Instead I rang the Specialist Nurse who reassured me I was more likely on the right track with it being Lupus related and wasn't too happy I'd been asked to do a 24hr wee output check and try to delay going for a wee. I have moderate kidney disease related to the Lupus. After a sharp intake of breath, he said trying to 'hold on' was a no no for anyone with kidney issues.

Anyhoo, seems I have a partial prolapse too, adding to the pressure, not checked for by the GP. That's been sorted and has helped.

It is an embarrassing problem that affects so many people, Lupies and many others alike.

On the livedo, many doctors ignored my 'rashes' over years. It was the Rheumatologist who made the link and hey presto, SLE diagnosis, having linked my symptoms and blood tests together.

There needs to be better diagnostic tools at general practice level to point to conditions such as Lupus sooner for referring on, even if the GP doesn't have a lot of experience of the less prevalent conditions.

Best wishes