What to do if you have SRPE?
Here are a couple of ideas regarding what to do if you have SRPE:
1. Join the “SRPE” subreddit and the Facebook group.
Make a post where you describe your condition, symptoms etc.
2. Read all the articles from this website, to get a better understanding of the SRPE condition.
3. If you find medical studies that you think are relevant or insightful, they usually contain the names of the doctors who were involved in the study.
Reach out to those people.
They are likely to be the foremost experts. (For example, the study about penile implants in individuals with SRPEs, included in the Resources section).
If their contact information can’t be found on the study itself, google them, find out what university or hospital system they are associated with, and send them a message.
This can be effective.
4. Make an appointment with a pelvic floor physical therapist in your area.
If there are none, finding an experienced physical therapist can still be of great help, especially if you know what is causing your SRPEs.
(Say your issues are caused in the lumbar spine, they can help with spine decompression, strengthening of the surrounding musculature, and mobility.)
At least one person on the SRPE subreddit community has seen a meaningful reduction in symptoms through PT.
5. Buddy up
SRPEs are a different sort of problem than, say, tennis elbow: it’s not a problem that most men are going to bring up in conversation with other people.
Not being able to talk about the problem only makes the situation worse and more isolating
Thanks to reddit and the internet, we are able to find and communicate with one another, and great relief can be found by talking to someone who actually understands what you are going through.
If there is someone in the group whose posts you can relate to, or who suffers in a similar way as you do, send them a direct message, and if that works well enough, maybe try a phone call.
You will quickly learn that you have more in common with this person than you do with most or all of the people in your day-to-day life.
Together you can compare notes, offer support, and more than anything, you can help each other maintain hope as you pursue solutions.
You might even find that with a brother-in-arms you’ll be able to comfortably share a laugh about this miserable condition.
It is truly game-changing to have a contact who understands your situation, who you can reach out to when you need another to talk to somebody who understands the difficulties and challenges that come with SRPEs.