Starting a chapter with a Suprapubic catheter

I have a Suprapubic catheter. 

I have this for multiple reasons but if comes down to my hEDS. I have a mixture of bladder retention, an overactive bladder and voiding issues. 

I'm under both urology and a Urogynaecology clinic. My Urogynaecology clinic believes that due to my mast cell activation syndrome it's causing the pain within my bladder. 

So how did I end up with a suprapubic catheter well I'll start at the beginning... 

Ever since I was a child I've had issues with an overactive bladder and small amounts of wee can cause a lot of pain but it was my normal. When I became more ill my bladder symptoms became worse so after taking to my cardiologist for POTS he referred me to urology. 

Now POTS itself can cause bladder issues such as struggling to get started and retention. At first my urologist didn't believe EDS could cause bladder issues and after my urodynamics test I was told that they weren't sure. 

Skip forward to around a year after I was transferred to a new urologist in the hospital. He realised the majority of my bladder issues were due to my EDS. So I had a rigid cystoscopy to make sure it wasn't anything else and he decided to try self catheterisation. 

I really struggled with self catheterisation. I have poor hand dexterity, my hips dislocate and lock and it wasn't helping my independence nor helping my Overactive bladder. 

Mr Red was shown how to do it for me but it could only be done on the bed so no way to do it outside. 

After speaking to my urologist it was decided to either have a suprapubic catheter to be fitted or a Mitrofanof but due to my health conditions that was a much riskier operation so I decided on a Suprapubic catheter. 

I chose the suprapubic catheter for many reason and I will list then below: 

• It was a much less risky surgery. I wouldn't have to stay in hospital and could go home. 
• Recovery was much better for the SPC compared to the mitro. 
• If I really didn't get on with the SPC it could always be removed compared to the mitro. 
• The SPC could combat both my Overactive bladder and retention. 

So they were the main reason I chose the SPC over the mitro but it's a very personal decision. 

So after waiting I think around 7 months my SPC was fitted. It's been a huge change but a positive one mostly. 

I finally don't have to wee 20 times a day (on my bad days) nor strain trying to have a wee for 3 hours (on my bad days). These numbers are the more extreme of what my bladder can be like but they happened too often. 

At the moment I'm using a leg bag and then a night bag hooked to my leg bag at night. It's a huge learning curve and it's very odd having this device hanging out of my body but it's already made so many positive changes in my life. My bladder is one less thing to worry about, I don't search and panic trying to find a toilet and it's hard enough to find a toilet let alone a accessible toilet big enough for my wheelchair. 

Its a learning curve. No one wants to be disabled and need any of these medical things coming out of your body but if they help and help get rid of symptoms it's a plus to me but you are allowed to grieve for the body you imagined you would have, no one can be positive all this time.