Context:
I was born in 1988 (36 years old). I've had diabetes since I was 7 (29 years). 74kg, 183cm. Healthy diet. Male.
My blood sugar levels can vary on occasions. For example, I might eat something and get the wrong dose. But I microdose to correct these sorts of issues relatively quickly. Generally, my control is... excellent. Throughout my 29 years, I have had an hba1c averaging 6.2%. The highest which has happened once, was 6.5%.
About 2/3 years ago I got prescribed the libre 2 sensors. I find them to be relatively unreliable and have certainly had to use my finger pricker to ensure my reactions to my diabetes were correct. Nonetheless, I'm grateful for it as, at the very least, I get some sort of trend information from it.
Issue:
In January, I called the doctor because I had a stinging sensation in my penis. After doing a urine dip test for urinary tract infections (UTI), I was told on the phone it was negative "is there anything else I can help with". I decided to mention that ever since 2012, when I had a particularly bad UTI which could have also been me passing a kidney stone, I've never quite urinated the same. A follow up bladder scan showed no problems and < 60ml retention. And in the recent few months, I've noticed a slightly slower stream strength. The doctor booked me in for a bladder scan for February.
February came and the results were that I was retaining 500ml of urine. Not good. So I was booked in to a Urologist nurse in March 23rd. My retention was now at 1l. And a week later at 860ml, I was told to "clean self intermittent catheter". I was prescribed these and was told to use them twice per day. Only once per day if it started to hurt too much. I was in despair— Super shocked.
As I emptied out the 860ml to 0 from my bladder, and over the next week, my sensations of bladder fullness returned to normal. I was unable to empty my bladder and only drips would come out at around 750ml, but the sensation of needing to go would start at anywhere from 200 - 350ml. And at 550ml, I'd feel pretty full. (I measured retention volume with catheter and measuring jug).
I had 3 UTIs over the following month which were solved with short to long courses of Nitrofurantoin 100mg. Luckily I had no side effects to my knowledge from them and they seemed to help.
During the wait, I started to stand up for work (office job) and being on my feet for 6 hours a day was an interesting experience from the typical sitting. I've kept this up mostly. I also started to do various stretches with my back. Why? Hope I suppose. It couldn't hurt. I also have maintained exercise, at least once a week skateboarding for about 3 hours and various little things I do around my home to keep active like hopping on the spot, plunging into the cold sea... Etc.
On April 28th I saw my first NHS urologist. I had made note to him that I had managed to book a private cystoscopy recommended by a private urologist for May 6th. The NHS urologist had said he suspected detrusor muscle failure and it could be caused by diabetic neuropathy-neurogenic bladder. He was interested in the results of my cystoscopy and that he would follow up with Urodynamics after some time. I also forgot to tell them either my dog or my niece accidentally jumped onto my bladder this one time around Christmas... Related? Perhaps. I do try to pass the information on but it's so hard to reach them!
I had the cystoscopy and no blockage was found. Apart from a "snug outlet" there was no obvious issue and Urodynamics was also recommended by the private urologist.
During the last 2 months, I have noticed I have been particularly keen in keeping my glucose levels on point. My estimated hba1c is at 5.8% from my Libre 2, and I could well imagine it being 6.2% with a blood test version. No, I am not going low, I'm just doing a good job.
For Eurovision night around my parents, in the evening I noticed some slight tingling or burning, very gentle, subtle in my feet. The next day, the same, on and off, here and there. That night, I called 111 because I was under the impression I should probably stop taking the antibiotics I had been prescribed for the 4th time. But apparently there were no concerns with the antibiotics and that if my sensation got worse, talk to doctor again, but no cause for immediate concern.
Tonight, several days later, I was noticing the same.
And so here I am.
I have panicked. Is this the start of the end for me? 36 years old, good to excellent control of diabetes for 29 years... And it's finally getting me regardless?
The last year has been extremely tough. Super stressful:
- Proposing and marrying my wife from another EU country was extremely difficult to plan because of Brexit rules. The costs alone hit £9k all in. And everything is more expensive these days so balancing my accounts has not been fun. And after everyone's mortgages went up (Mine went up by £400 per month), it has been horrendous.
- My job has been difficult and I had been working long hours to show I was worth a pay rise.
- My wife had a dog, and we now live in an apartment in UK where we probably shouldn't have one, and so always thinking we'd get told to get rid of the dog was on my mind. In fact moving from her country to UK was a while ordeal taking weeks of planning.
- My wife having a chronic fatigue illness makes everything a subtle worry.
- My dad being diagnosed with a heart condition that needed double bypass. He got it last month and is now recovering well.
- My mother during his diagnosis got extremely ill and was sectioned for 3 months where she thankfully and seemingly fully recovered.
- The management of prescriptions for diabetes and catheters is insane and talking to doctors has become an absolutely horrendous chore. The system is in a sad and sorry state at this moment. I miss < 2016.
Life as a Type 1 diabetic is cruel most days. A constant hourly reminder that "I think I feel strange because of blood sugars, but my libre 2 says I'm fine. I best check on a finger prick. Oh yeah, the libre 2 is way off. Let me give it 15 minutes. Oh wow yes it really is way off". And now with the inability to urinate without a catheter... And worries that neuropathy is finally getting me regardless of my constant obsession to stay with good hba1c levels.
Wow. It's so tough.
I write this so that anyone else going through something similar knows that yes, it sucks and it's immensely worrying and sad, and all the swear words needed to express frustration.
I am broken at this moment in time. What will the future hold?
Is anyone else suffering from a similar set of symptoms/worries?
I was born in 1988 (36 years old). I've had diabetes since I was 7 (29 years). 74kg, 183cm. Healthy diet. Male.
My blood sugar levels can vary on occasions. For example, I might eat something and get the wrong dose. But I microdose to correct these sorts of issues relatively quickly. Generally, my control is... excellent. Throughout my 29 years, I have had an hba1c averaging 6.2%. The highest which has happened once, was 6.5%.
About 2/3 years ago I got prescribed the libre 2 sensors. I find them to be relatively unreliable and have certainly had to use my finger pricker to ensure my reactions to my diabetes were correct. Nonetheless, I'm grateful for it as, at the very least, I get some sort of trend information from it.
Issue:
In January, I called the doctor because I had a stinging sensation in my penis. After doing a urine dip test for urinary tract infections (UTI), I was told on the phone it was negative "is there anything else I can help with". I decided to mention that ever since 2012, when I had a particularly bad UTI which could have also been me passing a kidney stone, I've never quite urinated the same. A follow up bladder scan showed no problems and < 60ml retention. And in the recent few months, I've noticed a slightly slower stream strength. The doctor booked me in for a bladder scan for February.
February came and the results were that I was retaining 500ml of urine. Not good. So I was booked in to a Urologist nurse in March 23rd. My retention was now at 1l. And a week later at 860ml, I was told to "clean self intermittent catheter". I was prescribed these and was told to use them twice per day. Only once per day if it started to hurt too much. I was in despair— Super shocked.
As I emptied out the 860ml to 0 from my bladder, and over the next week, my sensations of bladder fullness returned to normal. I was unable to empty my bladder and only drips would come out at around 750ml, but the sensation of needing to go would start at anywhere from 200 - 350ml. And at 550ml, I'd feel pretty full. (I measured retention volume with catheter and measuring jug).
I had 3 UTIs over the following month which were solved with short to long courses of Nitrofurantoin 100mg. Luckily I had no side effects to my knowledge from them and they seemed to help.
During the wait, I started to stand up for work (office job) and being on my feet for 6 hours a day was an interesting experience from the typical sitting. I've kept this up mostly. I also started to do various stretches with my back. Why? Hope I suppose. It couldn't hurt. I also have maintained exercise, at least once a week skateboarding for about 3 hours and various little things I do around my home to keep active like hopping on the spot, plunging into the cold sea... Etc.
On April 28th I saw my first NHS urologist. I had made note to him that I had managed to book a private cystoscopy recommended by a private urologist for May 6th. The NHS urologist had said he suspected detrusor muscle failure and it could be caused by diabetic neuropathy-neurogenic bladder. He was interested in the results of my cystoscopy and that he would follow up with Urodynamics after some time. I also forgot to tell them either my dog or my niece accidentally jumped onto my bladder this one time around Christmas... Related? Perhaps. I do try to pass the information on but it's so hard to reach them!
I had the cystoscopy and no blockage was found. Apart from a "snug outlet" there was no obvious issue and Urodynamics was also recommended by the private urologist.
During the last 2 months, I have noticed I have been particularly keen in keeping my glucose levels on point. My estimated hba1c is at 5.8% from my Libre 2, and I could well imagine it being 6.2% with a blood test version. No, I am not going low, I'm just doing a good job.
For Eurovision night around my parents, in the evening I noticed some slight tingling or burning, very gentle, subtle in my feet. The next day, the same, on and off, here and there. That night, I called 111 because I was under the impression I should probably stop taking the antibiotics I had been prescribed for the 4th time. But apparently there were no concerns with the antibiotics and that if my sensation got worse, talk to doctor again, but no cause for immediate concern.
Tonight, several days later, I was noticing the same.
And so here I am.
I have panicked. Is this the start of the end for me? 36 years old, good to excellent control of diabetes for 29 years... And it's finally getting me regardless?
The last year has been extremely tough. Super stressful:
- Proposing and marrying my wife from another EU country was extremely difficult to plan because of Brexit rules. The costs alone hit £9k all in. And everything is more expensive these days so balancing my accounts has not been fun. And after everyone's mortgages went up (Mine went up by £400 per month), it has been horrendous.
- My job has been difficult and I had been working long hours to show I was worth a pay rise.
- My wife had a dog, and we now live in an apartment in UK where we probably shouldn't have one, and so always thinking we'd get told to get rid of the dog was on my mind. In fact moving from her country to UK was a while ordeal taking weeks of planning.
- My wife having a chronic fatigue illness makes everything a subtle worry.
- My dad being diagnosed with a heart condition that needed double bypass. He got it last month and is now recovering well.
- My mother during his diagnosis got extremely ill and was sectioned for 3 months where she thankfully and seemingly fully recovered.
- The management of prescriptions for diabetes and catheters is insane and talking to doctors has become an absolutely horrendous chore. The system is in a sad and sorry state at this moment. I miss < 2016.
Life as a Type 1 diabetic is cruel most days. A constant hourly reminder that "I think I feel strange because of blood sugars, but my libre 2 says I'm fine. I best check on a finger prick. Oh yeah, the libre 2 is way off. Let me give it 15 minutes. Oh wow yes it really is way off". And now with the inability to urinate without a catheter... And worries that neuropathy is finally getting me regardless of my constant obsession to stay with good hba1c levels.
Wow. It's so tough.
I write this so that anyone else going through something similar knows that yes, it sucks and it's immensely worrying and sad, and all the swear words needed to express frustration.
I am broken at this moment in time. What will the future hold?
Is anyone else suffering from a similar set of symptoms/worries?
Last edited:
- I appreciate this.