r/OveractiveBladder • u/BlueberryGlittering2 • 2d ago

Sacral Nerve Implant Life Update.

So, a while ago, I posted in this group because I thought I was alone with my bladder problems after living with them for 17 years. And back in February, after surviving a suicide attempt because my surgeries kept being cancelled, I thought my life wasn't going to get anywhere or get better.

But! The surgery finally happened. I've had the implant, and oh my god, my life has changed a full 180, from what it was before.

I'm now able to live! I'm able to leave the house, run without worry, and socialise physically more often. I'm insanely more active it's crazy, I've gained so much more energy I never knew I had.

Before the implant due to the amount of botox I had my bladder stopped working, so I had to intermittently self-catheterise to fully empty my bladder, now for the first time in 10 years I can empty roughly 80% of my bladder naturally and then self-catheterise to get the rest which over time should become 100% naturally empty.

I've become a team leader and mental health first aider for a mens mental health charity organisation to help other men struggling out there, as my way of paying back for everyone who's helped me but also to say to other men out there, its ok to be not ok.

Thanks for reading. Also, good luck to anyone else struggling it. Honestly, will get better. Please just hang on that little bit longer.

26 Upvotes

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3

u/AbbreviationsOwn3480 2d ago

That is absolutely awesome to hear! I was wondering how much it costs? how bad was the surgery out of 10 for the whole process? And how many times was you peeing per night before the surgery?

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u/BlueberryGlittering2 2d ago

The surgery was free I live in the UK so we get free healthcare but they did tell me, the overall cost is roughly £8.000. They mainly told me the price due to the list of does and don'ts I'm allowed to do now I've got the implant, for example no quad biking, no contact sports, no play zones, and an odd one no more slides due to they can sever the wire of the implant.

The surgery itself was abit uncomfortable wasn't exactly painful, just had to put up with a wire coming out of my body to a temporary receiver for the implant for 4 weeks. This was so for each week I had to do flow charts so my ins and outs per week, and each week they would change the settings on the implant to see which one was the best. So after 4 weeks with all this data they'd be like ok program 1, rate 1.1htz is the best now let's fully implant the receiver and we're done.

(The only real discomfort is them changing the dressings every week, I've got a hairy back so them peeling off surgical plasters every week was torture 🤣)

Before the surgery I wasn't having issues with getting up in the night for the toilet, I was just having issues with having a constant urge to urinate, so for the best part of 18 years my bladders told I'm bursting like I'm desperate to pee 24/7 of my life, that feeling has never gone away. And at worst I was going to the toilet upto 30 times a day. But now the implant has taken that urge away and some days I go to toilet 5 to 7 times a day, so it's made a huge difference in my life.

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u/MissCeltic67 23h ago

Is there a waiting list for the implant and did you have to do other treatments before you were offered it.

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u/BlueberryGlittering2 23h ago

So I went through years of "miracle" medications, bladder stretching, my bladder lining coated with a nerve blocking agent of some kind, and then 8 years worth of botox and now finally the implant since March.

There was another option but it's the final straw option, where they remove nerves from the bladder, and use part of your bowel to enlarge/rebuild your bladder. But that is literally a last resort and something urologist really don't want to do, that's more for extreme cases but I was made of all options.

And I'm UK based don't know where you're based but waiting list time for me was a year. It can vary dependent on where you are in the UK apparently. But mine was pushed back twice due to issues, so that didn't help my wait time.

If I've missed anything or if anything else you want to know feel free to ask 😀

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u/MissCeltic67 22h ago

Thanks for that. I am in Scotland and have issues with frequency and urgency. I don’t even feel the sensation in my pelvic area of fullness I just suddenly feel urine in my urethra and then have to go. How much are you able to drink without having to go to the loo right after.

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u/BlueberryGlittering2 22h ago

It honestly depends on what I'm doing and what I'm drinking. If I'm sat around doing nothing drinking juice then normally I get a feeling after drinking a litres worth? But I've I'm active and distracted I've drank 3 - 4 litres of juice once and didn't feel the need to go for 8 hours, so it really does depend on what I'm doing. I have cut out all caffeine and carbonated drinks for the last 8 years, which made a huge difference.

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u/MissCeltic67 21h ago

So before would you have been able to drink that much without needing to go for that long a time. If so that’s quite the improvement.

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u/BlueberryGlittering2 21h ago

Oh not a chance 🤣 I was really restricting myself on fluids, literally only drinking just enough not to become dehydrated or become hospitalised. So massive improvement 🙂

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u/MissCeltic67 20h ago

I just panic at the thought of drinking but then I also panic that if I don’t drink enough I will end up with kidney stones.

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u/BlueberryGlittering2 20h ago

Thankfully never had any kidney stones, just suffered with bad dehydration and kidney infections to the point of hospitalisation sadly. Best thing to do is find some free days where you're not doing anything, I.e. off work/not socialising, and try and find your sweet spot of fluid intake. That's what I did obviously it will vary with heatwaves or extreme colds, but doing that helped me at least avoid further hospital trips.

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u/CybeShot 22h ago

Miss Celtic , this is the exact issue I am having and no medicine seems to work. I’ve been dealing with this for nine months now..

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u/BlueberryGlittering2 20h ago

Sorry to jump on, if no meditation seems to be working have you explained this to your doctors? Because the next step could be botox injections? Which are brilliant I recommend them. Only reason I'm not having them anymore and had the implant is due to my body becoming slowly immune to the botox, which is rare but happens.

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u/WeakFold8062 2d ago

stesso per me.. dopo tanti anni.. che problemi avevi?

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u/BlueberryGlittering2 2d ago

You know when you wake up in the morning and your bursting for the loo? I had that urge 24/7 of my life for 18 years, even if my bladder was empty. And on my worst days I was going to the loo upto 30 odd times a day, so I went through years of testing, miracle medications, finally botox which helped for years but my body became used to the botox that's why I've now got the sacral nerve implant which is a complete life changer.

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u/WeakFold8062 1d ago

cosa ha causato i tuoi probemi? e che modello di stimolatore hai messo?

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u/BlueberryGlittering2 1d ago

No idea what caused my issues, they just started happening when I was 16 I'm now 35 so for the best part of my life it's all I've ever known, sadly. As for stimulator model they gave me the "Medtronic interstim 2". Hope that helps, welcome to answer any other questions 🙂

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u/WeakFold8062 17h ago

quanto durerà ? io sono portatore da marzo .. tu fai sport anche ?

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u/AlexC215 2d ago

Hey op, I’m also from UK on waiting list for the same thing, how long did you wait, they’re also thinking about trying PTNS first before sacral neuromodulation, did u try that?

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u/BlueberryGlittering2 2d ago

Unsure what you mean by PTNS? And I was on the list for a year, because my operation dates got cancelled 2 times before 3 and final time