If you scan over all my Hospital letters they all make reference to my bladder problems which has not been addressed and causes me a lot of life limitations.
Today I had a new gp as mine is on maternity leave. I was anxious but also very emotional at the moment so seeing a new doctor was a big ordeal today as it meant repeating my story. Anyhow this doctor was a female and most definitely younger than me so I kind of felt a little uneasy about addressing my bladder problems. But it needs to be addressed so out it come and I was completely blown away by her response
“ it is possible for autoimmune /connective tissue to affect the bladder which needs to be dealt with separately”. She will be contacting my rheumatologist and getting him to do an in-house referral to urologist as she feels it will be the quickest way .
I feel pretty overwhelmed but this issue has never been addressed until now! So my question is, are we about to enter into a new world of medics where they are taught more about these illnesses , because the only difference between her and other professionals I’ve seen is AGE!!!! I don’t want to discriminate against our older specialists but this really has me thinking 🤔
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Lisalou19
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I have other Lupus friends who have bladder problems, because this could be something that could be linked to our Lupus – since it affects every organ.
Please update us with your findings as you meet with your new young doctor – that is willing to take time to work with you 💜💜
Thank you for your post and hope you are better and get the help you need 💖💜
Lisa, I don’t think you need to jump to MS. I am no expert on MS but so far your very capable doctors at the lupus center are not seeing typical MS signs. MS and systemic autoimmune diseases can affect nerves, so it makes sense some symptoms will be similar. Try to remember that your young and attentive GP first wants to rule out a connective tissue disease cause. She didn’t mention MS.
Hope you get an appointment soon and some reassurance!
Thanks, Lisa, for posting about this issue. And good for you for facing it head on! Too many women suffer needlessly. It seems there are many ways that autoimmune disease affects the bladder. And, as the urologist told me a few weeks ago, « there is so much we can do. »
I think there is hope for your problem, Lisa. Good for you for advocating for yourself in such a positive way. Can you switch over to this GP?
If I’m honest, I thought it would go away or perhaps it was in my mind. I try so hard to fight through all this but it’s there lingering in the back of my mind and causing a lot of negative thoughts.
I will stay with this gp until my other one returns. It’s so strange when someone actually acknowledges the problem is being caused by the overall problem.
I’m going to ring guys everyday and chase this up!!!!! I shouldn’t be suffering such a life restricting problem. As you say there is help for me. I’d be interested in any information you have on this subject. Thank you xxx
Hey my lovely. Now I’ve had 3 kids admittedly. So I guess you could add them together and you get the answer. But this is very different. I can go from complete bladder control, all pelvic floor is doing what it should be doing I can clench there and let go. But during these flares it all becomes non existent. There isn’t anything to clench it’s all gone and I will pass urine as quick as I consume liquid. It just has an empty feeling, and I can’t tell if it’s muscle or nerve related.
It’s not because I’ve had 3 children , it can’t be , because out of my flare I have complete control. Some days I can pee in excess of 20 times a day
Lisa, I think that's a really good deduction. If you've got control sometimes, 3 babies later or not, then it's not due to babies. I love that this GP is giving you this right attention and sending you to someone is the know. Excellent! P x
Have sent an email to my consultant this morning. Trying to get hold of anyone on the phone is near on impossible. So potentially by me sending an email I might get myself marked as a nuisance patient lol xx
Hi Lisa , reading your initial post about lupus and frequency of urination: I’m identical. I’m fine on a fairly good day on a flare it can be needing to wee every 15 mins. There’s virtually no control. When I need to go I need to go. It’s extremely life limiting & very embarrassing. I’ve mentioned every time I see a health professional, doctor or consultant and they just brush it aside. Like you I’ve had children, I’m in my early 50s but I do have perfect control at other times. It’s marvellous you’ve been taken seriously and even better you’ve been referred to a urologist. It certainly might be an age thing as I tend to see more mature people. I wish you every luck with your appointment.
Hi Lisa , no I’ve never seen a urologist. But I’m so in tune with your post & all your symptoms.I’m now thinking I should request an appointment to. I see my lupus nurse soon & im thinking of pushing the matter a bit harder for a referral . So thanks for the initial post. It’s given me a good prod. X
This site is so helpful. I get more from here then from family and friends .
Please do mention it, we shouldn’t have to suffer in silence. I believe we do because we never put our symptoms down to our illness and if your like me, I hate to be a burden x
Totally agree it’s so difficult to get friends or family to truly appreciate how awful living with this disease is. It’s great to have a supportive place you can go to & be understood. The knowledge gained here is also so helpful for everyone. X
One friend with Lupus that has bladder issues of incontinence, but she found out through many visits with the urologist that the urethra was not functioning correctly. The actual opening was too narrow and the doctor was able to give her medication and over the past couple weeks it has been a little better. Here's an article below that goes over this particular situation with the bladder.
My first area of concern about what you said, is that "we cannot ramble our symptoms" off to the doctors. They will cut us off, I have seen them get up and back out of the room as a patient was describing symptoms because there was not a list written before them from which they were "reading".
We have to go in prepared.
We have to have a list of our symptoms.
- dates symptoms occurred
- what organs were affected and how much pain and how long it lasted
-A checklist provided below is a good place to start.
There are many on the Internet, mini do their own in an Excel spreadsheet- which can get really extensive.
If they see we are taking it very seriously, we have researched, and we are prepared Dash they have to listen to our entire list, it is required.
Plus you could always bring them a copy to put into your file for records – if for some reason they have to leave for an emergency with another patient.
Keep a binder and take notes during each doctor appointment.
You can refer back to what other doctors have said by looking back in your notebook to certain other issues that you may have had if you had to go to a specialist, keep blood results in the notebook, keep CDs of x-rays in the notebook, they will respect you for taking so much care in your own health.
I hope this helps, because the doctors need to listen to all of our symptoms. We do end up with comorbidities and they need to figure out if we are experiencing any other diseases along with Lupus.
Good luck to you and to all of us living with Lupus. One day at a time 🙃☺️😊💜
That’s so interesting about pelvic floors when in a flare! I thought I was nuts as sometimes my pelvic floor muscles are so so good and other times it’s as if they switch from side to side all on their own or don’t even do anything when I exercise them!
yes, this is me. Now to try and work out why? is it due to muscles being affected, or is the bladder inflamed, there are a few possibilities, but I am on a mission to find out.x
Very, very interesting. I had to overcome ridiculous embarrassment about my bladder problems after my PIP assessment concluded I had no medical record and bulk buying Tena Ladies didn’t count. I saw a wonderful female GP who immediately said what I had was urge, rather than stress, incontinence (eg I have no idea my bladder is full until the last minute) suggested a med and a referral to the specialist centre. I now get prescription Tena Ladies, super absorbent, delivered in huge boxes every 3 months.
The urology nurse prescribed another med, but I couldn’t tolerate either because of my low blood pressure. At my last appt I asked if getting some bladder control would help my faecal incontinence, which the Tena Ladies were helping. She examined me and was horrified at the general state of my under carriage plus my bony bum. She covers both kinds of incontinence.
All the muscles are extremely weak. I was to have seen a specialist nurse and have home bowel irrigation explained but the equipment hadn’t arrived. We are trying again this week.
All this has been fed back to rheumatology by my GP and because rheumy has always found protein, white blood cells and blood in my urine, I had a kidney, bladder and urethra scan last Saturday.
This sounds quite traumatic , bless you. I hate how these pip people see away around granting help in an area that is very personal to you. Why should you have to explain yourself. It is embarrassing at times to talk about and especially to a person that most likely has no idea of what your overall health concerns are.
I do hope that in time this area will become more tolerable for you.
Thank you. In a way the dreaded PIP did make me get something investigated. I can slap them in the face with my prescriptions now, without needing to go into detail.
I had the full daily care element reduced and with the help of a Welfare Rights Officer, a very detailed submission to Tribunal is in place. The WRO says I’m actually well over the 2 points I lost. There’s such a waiting list for Tribunals that I’m thinking of asking WR whether to just reapply for a worsening condition. My last rheumy letter was a three page stonker!
Sorry to hear this. They do not realise the stress this causes on top of you having a health condition. I was reading the other day that these idiots that do the assessments are on commision, how is that fair!!!! they most likely have no medical skills or training.
I do hope you get what you deserve. I am sure you would replace any amount of money in return for better health xx
Reading the responses find it interesting as i have a lot of the above problems days where I am almost constantly peeing and when I need to go i need to go and im male so can't put it down to having kids i have been referred to urology so will mention it, didn't know about it but will mention it. 😁
Thank you so much for adding this valid information. You being a male is very significant . You are explaining exactly the same as what us women get, and if this is also happening for men, then children can not be too blame.
Please do keep us updated on your urology appointment. I am on a mission now to get this looked at xx
Hey... wait a minute. Lisa, you know how I said I didn't have any bladder issues to you just yesterday? I suddenly remembered something and went back to my notes to find that at about 6 months into this disease, I had an insane 2 days where I could not stop peeing. Notes say: 'Excessive & copious urination (12x between 9am-2pm)". The Rheumatologist recored it in my next letter, but I had totally forgotten about it because the function went back to normal and has been ever since.
Pertinently, I have not had babies either, despite not being a man. : )
It seems so common. I remember 2 years ago a work colleague approached me and said, I think you should see a doctor you need to use the toilet a lot. That comment went straight over my head x
Maybe as autoimmune diseases become more prevalent in society in general, the medical profession will update training in order to keep up!! We all have immune systems after all..lupus could affect anyone at any time..so I hope that doctors r being trained at last to understand a bit more about it. Fingers crossed on that one eh?
My very dear friend has MS n I have SCLE..we have a lot of similar symptoms but we r different..I say we're in the same boat..with different paddles!!
I think that younger doctors will have lots more to deal with in the very near future..already more n more youngsters r presenting with mental health issues..becoming more isolated n anxious etc..we live in a modern world with new health problems..the docs will have to keep up to speed!! I think it was eekt who posted that there's been a 5% increase in diagnosis of autoimmune disease in the past year? There's currently 5million of us worldwide!! Be hopeful for the future!!
That's fab news Lisa that you've spoken about this sensitive issue n it's being acted upon..onwards n upwards!! Xx
I became in continent after three years post diagnosis. I suffered repeated UTI which were not only painful but seemed to make my whole body agitated stopping me sleeping or resting . I was repeatedly prescribed MacroBID as it was the only antibiotic that worked. I was referred to a Urologist but as I had changed Rheumatologist and the new one refuted the diagnosis of SLE, they tried to catheterise me and I bled badly. I was admitted for tests and they found a diverticulum in my bladder. Ultimately they felt I could not self catheterise because of my balance problem and Raynauds so their answer was a pelvic portal. I was horrified and refused. I continued with pads and medication but I would complete one course of antibiotics only to need more in a few days. I was re referred to Urology and saw a registrar who told me that it was unsurprising that I had UTI’s given the amount of fat “ down there”. I felt mortified . So six years on I am still in continent and have to use nappies but I take triple strength cranberry tablets daily and so far this year I am suffering my first UTI. Sadly there seems to be no collaboration in our specialities and all the Rheumatologists that I have seen have no interest in coordinating approaches. I hope you have a better response and get some help. It is miserable and embarrassing
Sorry you have also been affected by this. It is dam right embarrassing and takes some to get it off your chest. I don’t think I’ve ever been checked for uti’s. All I know is this bladder has issues not me 😉x
Wow! Do you mind if I troll you for awhile. I've been experiencing my share of UTIs, along with not feeling like I'm completely emptying. I also would describe as to what I feel as a sting-ray hanging off my cervix....at times. Maybe this is early stages of an UTI? I talked to my gyno last month at my yearly. She gave me a couple names but unless they have a clue about auto-immune disorders I'm hesitant in making an appt.
You are not trolling, everything we all share contributes so thank you for your comment. I’ve had a few occasions where I needed to quickly get to the toilet and have sat on the toilet for ages to try and empty my bladder. I only leak a small
Amount when this happens buts it’s frustrating. But then it’s also frustrating not getting any warning until the last second that I need a wee
Thanks Lisalou19! I've learned a lot about my health issues since getting older. Looking back as a child raised in the 60's I recall the red flags being there....know one knew what to do with them. I know now autoimmune disorders effect people in different ways. No two are alike.
Hi lisalou I read with interest your post and I find that the newly trained young drs are more helpful before they get to the stage that they are weary of their job and their patients. Also I have real problems with my bladder it links in with food intolerances as I am highly allergic to most foods that are not natural. I ate whatever I wanted yesterday and am paying the price today. It’s really hard when drs only address one symptom at a time as they need to know them all. I have read some of you’re replies too which has helped me tackle my GP. Have a great day. Take care. Elena.
A friend did say the constant need to wee could be to do with what we eat! I’d say I’d keep a food diary but I eat so much I couldn’t keep on top of it 🤣🤣🤣x
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