I just got the stimulater I need advice from those who have the permanent or had a temporary one on the past.

[Debra13]

Hello fellow sufferers,

I’m reaching out to those fellow sufferers who have tried the stimulater or have the permanent one. I now have it since this past Wednesday the 3rd of April. For the first 3 days it was working really well. At least I thought it was. Now most of you know I suffer from PD AND interstitial cystitis. So last night my pain started to slowly creep back around 6 pm. By 10 pm last night my pain was an 81/2 on pain medication. So I texted the representative and he told me to change the setting to something different and it took the edge down a little bit but I’m still burning a little. I must tell you all that I did hold my urine in like an idiot yesterday and that’s when the pain started to get bad after I went and urinated. It burned really bad. Could thus be more to do with the interstitial cystitis. I’m going to need to make a decision on a permanent one soon and I don’t won’t to go through a procedure if it’s really not going to help me. Thank you so much. Deb🤗😂😃

[Alaine1 Administrator]

Hi Debra,

I’ve had two trials with this which didn’t work for me unfortunately but it’s early days for you at the moment so I wouldn’t worry too much. Having said that I think you hit the nail on the head when you said you put off urinating when needed. Up to a point the stimulation will in theory and for many help reduce the need to urinate and the reminder of the improvement will be from bladder retraining but ideally only when there is improvement especially in pain levels. I think at the moment the focus won’t be on the pain disappearing rather than reducing to more manageable levels and still not eating or drinking things that flare up pain and/or affect urinary frequency. Also women’s health physiotherapy is extremely important. No one treatment for any pelvic pain is all that is needed it’s usually a combination of treatments with a small proportion of it being surgical in nature. Failure to look at the whole package often leads to treatments that provide some benefits being discontinued too soon before they’ve been given the chance. So physio might help with the burning pain.

Are you doing a daily pain and frequency diary? It’s something that we have to do in the UK before a decision is made by the team as to whether the permanent stimulation will go ahead. I didn’t have even a 2% improvement but I’ve been told I’m not a ‘standard’ case. Even if this isn’t required I’d still recommend you do one as it might flag up a pattern that you had overlooked or you might see improvement that you hadn’t realised or that your pain/frequency fluctuations throughout the day which might help both you and your doctors come up with a solution to address this.

I’d also recommend that if you don’t already you might want to also look at using gabapentin or pregabalin which might only be short term to enable the pain memory to reset itself or at least reduce in severity. I wouldn’t recommend opiates long term though as they have been shown to actually make pelvic pain worse. I’ve been on morphine myself but was always very strict not to take it when not needed or keep increasing the dose each time I saw the pain specialist. This is very hard with the 3 pelvic pain conditions I have especially seeing that my last resort treatment for adenomyosis is slowly becoming less effective and I’m back to being in pain a lot of the time but fortunately not quite as severe as I’ve had - probably 6-7 out of 10 which is bad enough! I’ve got appointments this week with the pain specialist and endometriosis specialist where I will be discussing my options including using morphine only when necessary but also seeing if there is scope to increase the pregabalin again. Opiates are fine for acute flare ups so please don’t suffer unnecessarily but keep a balance. I hope this helps!

[Debra13 in reply to Alaine1]

Thank you so much. Yes I was neglecting all my other things I always do because I was feeling better. Yes I’m keeping a journal. I also talk to my rep everyday and tell him what is going on. I do the same with my pain medication. I use to just take it even if I could tolerate the pain. But then I noticed the pain medication wasn’t working as well so I cut back so as it would work on days when the pain reached a 10 and not my normal 7-8/10 on pain scale that I could get down to 7 with other means. So I completely understand. Now I take them when the pain is very severe more as a as needed but I also go for more procedures myself that I think help the pain. Without the procedures I would be in agony again. Not saying that 7 isn’t bad either but it’s better than a 10+. Yes it was definitely my fault. After I wrote this post today I realized it. Thank you so much for the reassurance. I’m probably gonna get the permanent. Deb.

[Hidden in reply to Alaine1]

Hi, I hope I have the right person here, but I believe I read a post of yours where you stated that you are taking steroids for your IC? Just wondering (if it is you) how that is working for you?

[Alaine1 Administrator in reply to Hidden]

No not me, I’m taking immunosuppressants but because my symptoms are so severe I was down to have my bladder removed and remade from Bowel. They think I have an autoimmune type but generally IC isn’t thought to be immune related in the vast majority of people

[Hidden in reply to Alaine1]

Yes that was it. I was recently diagnosed with eosinophilic esophagitis and while reading up on it I came across something called eosinophilic cystitis which is treated with intravesical steroids and a daily antihistamine. Not sure how doctors differentiate between it and interstitial cystitis when symptoms are severe. My symptoms only include frequency. Hematuria and pain generally go along with the eosinophilic cystitis. Thank you for the response.

[CMFCharlotte]

You may have a UTI. I get terrible bladder spasms on day one of a UTI until I start an antibiotic. I had a stim trial and am now waiting for my permanent one. It did not take all my pelvic pain away but sure took the edge off and worked well on my back and leg pain (failed back surgery syndrome). I am also going to have an Interstim trial for severe urinary retention.

[Debra13 in reply to CMFCharlotte]

Thank you. I immediately took my bladder medication when I got home that night. 👍Deb

[Lottie-Jensen]

Can I please ask what PD is??

[Debra13 in reply to Lottie-Jensen]

Sorry that was supposed to be PN Pudendal neuralgia. Deb 🤗

[Painplus]

Hi Debra, I have had two different stimulators in the past four years. Currently I have the one that is connected to my nerve endings. The one thing I have noticed is that if I start feeling any tingling ( for me it’s my left foot and leg) I need to turn my stimulator down. I usually run it with a slight tingling in my left foot but not so much that it bothers me.

When I first got my current stimulator it worked great for about three days just like yours. I find now that it helps with my pain but never takes it away. I still need my pain meds.

The one thing I would suggest is to have your company rep do a complete diagnostic for you. When I did this we found that only one of the four leads was helping so she turned the other three off. This is important because it saves on your battery life. If you haven’t talked about battery life, you need to do this.

Good luck. I hope this helps.

[Debra13 in reply to Painplus]

Thank you so much. I will before I take it out tomorrow thanks so much for the advice. Deb.

[Kap710]

My trial worked 100 percent. Had permanent placed 10/ 29/2018 for abdominal adhesions. Hasn't done anything for me. Going for surgery next week

[Debra13 in reply to Kap710]

Did it work or it didn’t. You say it did but then in the same breath you say it hasn’t done anything for me. I don’t quite understand. Can you please explain? Thank you. I’m still very much on the fence about putting metal in my body.

[Alaine1 Administrator in reply to Debra13]

I think Kap710 meant the trial worked completely but the permanent one didn’t help. I have heard of this myself which whilst it isn’t common does happen

[Debra13 in reply to Alaine1]

Thank you. I’m very undecided right now. They left it in longer because I wound up having a big problem due to a rectal fissure that I have. They thought it would help with the pain. It really hasn’t. So now I’m very undecided because I’m so flared up every where now. Ugh ugh ugh. Really don’t know what to do. I also heard of this happening to. I know it can be removed if this happens but I’ve gone through so much surgery already. I think what I’m gonna do is make a list of the pros and cons of before I had this problem and judge it from there. That will how I make my decision but only when it’s out and this problem is under control. Off to my gastrointestinal doctor now. Please pray for me. Thank you. God bless Deb 🤗

[Alaine1 Administrator in reply to Debra13]

Hi Debra,

I hope the appointment goes well. I’ve got 2 medical appointments today - one GP (on route as I type this) and then a hospital pain management consultation. They are my 3 and 4th this week. Just got two more to survive on Friday!

Yes I think writing a list of pros and cons is a good idea but also remembering that there are the add ons we talked about previously that might have an additive effect and enhance the treatment with the stimulator. Let me know how it goes or if you need anything else.

I hope this helps

[Debra13 in reply to Alaine1]

Thank you so much. I hope all your doctors appointments go ok. I’ll say some prayers for you ok. 🤗 yes I’m going to take everything into consideration. Can you believe I’m getting very itchy in the back area now. The bandages. It’s very annoying. My doctors appointment went better than I expected. I didn’t mention a few things because when one tells so many things that are going wrong then people start to question can this really be legit. Apparently i just have rotten luck. I really do. It’s almost like when it rains it pours. Just when things start to look like it could be getting better I get knocked down again. It doesn’t matter because I always stand back up and I never give up. I can’t. I will keep you posted on what I’m going to do. If I get the permanent I will let you know and the others what type it was because it’s different. I get the levels and the exact name of it. Thank you again Alaine and God bless you. Deb❤️👍🤗

[Kap710]

Hi Debra

First they do a trial stimulant which is placed on the outside of your body it worked butwhen they put the permanent in two months later it didn't work and I have had it revised 3 times. The battery is placed underneath your skin and the leads in the spinal column.