Last Thursday I had a botox injection; bilateral 3 injections on each side. I think I am quite encouraged, it seems to have dialled down the discomfort and burning a fair bit already so I am pleased, A positive effect by 48 hours is anticipated according to my Pain Consultant - with the full effect in a month's time. I have been suffering with CPPS for 6 years now, and having tried everything I had improved about 50% on what it was at worst - but I just wanted to achieve something really definite against this nasty condition.
If anyone has relevant experience I would be really pleased if you would share it with me.
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Harrythecat
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Thanks for sharing. What sort of Symptoms has it helped? I have burning just about everywhere from the waist to the knee (pelvic/back of legs) but I also have other symptoms too. And where did you have it if you don't mind sharing? as this is a treatment I may consider pretty soon
Hi I see that you live in the UK can I ask where you got the botox injections, I have drawn a complete blank on the NHS and been told more or less to live with it !!. I do not want to give up therefore when I see something positive maybe there might be an answer. Can I ask what PT you have had? I am a 67-year-old male in the southeast.
I have had 12 years of chronic pain following multiple (approx 10) gynae operations. Now have multiple abdominal adhesions, embolisation of fallopian tubes to starve fibroids of oestogen..did not work also bladder attached to one scar (opened 3 times - 2 myomectomies, C section. Other major op was hysterectomy - had to be opened up 3 times due to bleeding, plus more. I am a nurse and had to give up work 12 years ago and I feel broken. I am in a good pain clinic where I have acupuncture into my scars. Also Tuina - Chinese deep tissue massage, in my back - which gives me release in my abdomen. I am on various painkillers but in agonising episodes of pain, nothing works and I often just have to stay in bed for 4 days. It comes with all the mental health problems as mentioned by others. Would botox help?
Am I looking in the right forum Of CPPS? Any suggestions? Thank you
There are so many nerves in the pelvic area that affect so many of our every day bodily functions that doctors tend to stay away from this area. I have had chronic pain in this area for 4 years and have read so many stories on this site and the Pudendal Hope(less) site, and it seems that very few people get back to feeling 100% pain free. When you consider that some of these nerves are not visible even on an MRN, it's hard to imagine that a physician even wearing magic goggles can see them, let alone fix them. We all have different causes of our pain, and all we can do is try different techniques that people share on this and see if they might ease your pain. We all just have to figure out on our own what works best for our particular situations and keep on going and trying to enjoy life as much as we can every single day. And, I've learned over time to just accept that my situation may never be completely healed, and that helps out mentally. God bless you all!!!
I know, it can be just crushing. But I do go on the Reddit Prostatitis site quite a lot - by Prostatitis they mean Chronic Pelvic Pain Syndrome - and you do get success stories published on there, a couple of mods have completely recovered
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