SRPE problem, advice needed, thank you.

[Adamfg]

SRPE help and advice, hello and I will try to make this as understandable as possible.

So about 5 years back I started getting painful erection when I was sleeping, I thought it was fairly normal and that I was just one of the crowed, however things have took a turn, if I have sex or masturbate I get woken up with throbbing erections maybe 5-6 times through the night and now more recently without any sexual simulation they are occuring, I went to my GP with the issue and he said he had never heard of it and referred me to the urolagist, well today was my appointment and well... he has diagnosed pyrones disease and suggested that I take POTABA i believe its called which is not available on the NHS and cost £50 for 30 sachets of 3g, he said for it to be effective I need 12g a day, I cant afford that im on minimum wage, he also said he could put me on anti testosterone medicine that they give to cancer patients that would stop me EVER getting an erection whilst on it (I have a partner so thats not really an option) or eventual surgury.

What he was not listening to me on was the fact the reason I got pyronies disease, because of the suspected SRPE problem, he completely dismissed what I was saying and said we need to treat the pain and everything else will fall into place. I left feeling depressed and upset of the possible outcomes for what he had diagnosed, SRPE is very rare and poorly understood by healthcare proffeshionals, I dont know where to turn, but I do know that his idea of no more erections and some "googled in front of me" suppliment is not the way, it wont help the night time erections just numb the pain at best for the price of a small fortune, my plan is to ask for a second oppinion, however because no doctor actually knows this disease they will not listen to me.

I take Modafinil now and then when the 3-4 hours sleep a night catches up with me, I buy this myself not on prescription the doctors are aware I sometimes use it, im 38 and white, smoke 5 cigeretts a day roughly and drink 2 440ml cans a week of 4% beer, im not overweight and have a very physical job 6 days a week.

Any advice would be great, honestly I thought he would help but I have come away with no hope.

Thanks Adam.

[Clay237]

I don't know anything about this. Perhaps you should try to consult another specialist

[Adamfg]

Not sure there are any specialists in the Uk

[Adamfg]

So an update, still get the painful erections, also now I have loss of feeling so masturbating or sex takes too long to orgasm, my urologist has rebooked my appointment due to corona, its getting to me now, the end is now practically upside down and from base its almost 90o.

[Legin14]

Hi. Not being sure if you are going to check this again I will be brief. About 5 months ago I started experiencing similar night time erections. I am an otherwise healthy white 47 year old. My GP retired, the practice now only has female Dr’s and when I did visit and explained this was sent for an ultrasound of my bladder. I am not criticising her, my subsequent reading revealed how obscure SERP is so no wonder. I will check this forum ever few weeks going forward for a response from yourself, likely if we work together we will cover a lot more ground.

[Greyfi21]

Hello, I also have this issue for about 3 years now - not every night. Do to the rarity and the subject matter, I have not gotten any answers or treatments with a GP or a urologist. Both suggest seeing a neurologist. My episodes present when I sleep on my stomach. So I try not to sleep on my stomach. I've been managing it by walking around or stretching (knees to chest - butterfly groin). I live in the US and have not seen any research about SRPE (Sleep-Related Painful Erections) except for what being done in Europe. I want to pass a link to a study that suggests a muscle relaxer as treatment - Baclofen.

ncbi.nlm.nih.gov/pmc/articl...

[Adamfg in reply to Greyfi21]

Well sorry to hear about your issues too, I have not had an appointment due to them being cancelled, I still get it but it seems to have calmed down for now, I think it has something to do with testosterone levels, maybe ask for a hormone test to see if all is normal.

[Male54 in reply to Greyfi21]

Hi,

I'm 54 and have this problem for a few years now. If someone comes up with a solution, that would be great. I'll check back here again soon.

[Hidden]

Join the Facebook group named srpe. You will find lots of information there, and others with the same problem.