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Feeling shocked by next step with urological stuff 🤯😳🥺

So I had an appointment today with the Bladder & Bowel team (first face to face appointment in around 5 years…!) as I’ve been getting worse bladder symptoms that, now I have the formal diagnosis of hEDS, I wanted to push to get actually investigated and not just assumed as linked to my back injury or severe B12 deficiency nerve damage… she wasn’t initially keen to refer me to Urology, but has now said that she will speak to her colleague tomorrow at the other hospital and see if they can suggest anything they can do in terms of investigations or if we just continue with the next stage of the plan with this team (that is happening regardless). This next bit is the one that has left me fully shocked as she has referred me to a nurse specialist to learn how to carry out intermittent self catheterisation (ISC) in the hopes that it resolves the urgency incontinence, frequent UTI’s and urinary retention issues I get. I don’t know of anyone who has ever done anything like this to themselves and so it has sent my anxiety through the roof, leaving my IBS playing up and a splitting headache. Not helpful as we have a heatwave again in the UK 🥺. Has anyone here had positive experiences with ISC that you are willing to share? Normally I’d ask for all experiences but right now I’m really scared and anxious so am asking that negative ones are not shared, just to allow me time to calm these feelings before I get the bigger picture - I have previously refused/delayed treatment after hearing negative experiences and ended up needing emergency hospital admission and far more invasive treatment to get me well (ish!) again. Thanks in advance! 🦓🦓🦓 #HEDS #EhlersDanlosSyndrome #ChronicIllnessEDS #ChronicPain #BladderIncontinence #BladderIssues

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I’m really scared…

Hey, everyone. I hope you’re doing as well as you can be, given the circumstances.

So, yeah, I’m scared. And very nervous.

I take 60mg Dihydrocodeine four times a day - I have been for about two years now. It’s the best painkiller I’ve been on (and I’ve been on a lot). However, sometimes when I have a bladder/urine infection, or a flare up of my Interstial Cystitis, I get pretty extreme cramps. Like my whole bladder locks out. And I often end up peeing myself a little because I can’t control it. Because of this, my GP and I made an agreement - she would prescribe me SIX diazepam tablets a month. No more, no less. Quite often, those diazepam tablets were a lifesaver. They allow me to leave the house without the fear of cramping and then wetting myself in public.

BUT… My GP has told me that she will no longer be prescribing me diazepam. She has said that new research has shown that in people who take opiates and diazepam there is a significant risk of respiratory failure.

I understand her reasoning… But I’m terrified. If I properly wet myself in public, I don’t think I’ll ever leave the house again. That diazepam greatly improves my quality of life. It allows me to perform daily activities without my bladder spasms getting in the way… And she’s taken it away from me… What do I do now?

Thank you for taking the time to read this.

.#ChronicPain #chronicillnesswarrior #BladderPain #BladderIssues #InterstitalCysltitis #Pain #PainKillers #scared #Worried

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Experience with #Pessary rings

Doctor just inserted a #3 #Pessary ring in me. Is it normal for it to feel like it's falling or coming out? #BladderIssues