Should my Physiotherapist be showing me how to self treat?

[LivingRoomFanatic]

Hi guys,

I notice a lot of those with a Pelvic Floor Physio are being shown how to self treat/self manage. Is that the norm? I’ve been with my PT for a few months but all I’ve gotten to do myself are some stretches/excercises.

1. Should I be getting shown how to do internal stuff on myself with a wand?

2. Am I able to do work on my own perineum? I’d like to not have to rely on paid PT forever.

3. What about abdominal massage? Can that be be done by myself?

[LivingRoomFanatic]

Going to bump this thread as I’d also like to know when to stop going to PT?

I always have mild perineal ‘electricity’ that comes and goes. But I’m starting to notice that if I have a blip/experience mild pain or discomfort it resolves the next day after sleep.

1. Are we supposed to go to PT regularly until the pain element resolves, and then use it as a resource as and when needed going forward?

2. What kind of ‘homework’ does your PT give you guys?

3. What about when the perineum hardens a little. Do you do anything to soften it yourself at home?

[webslave]

Unlike other forums on this topic, where people hang around for years, most members here get better and stop visiting, so you may not get answers. But my answers would be

1. Yes
2. Usually stretching exercises; we have plenty here for you to try
3. Never heard that discussed before.

[LivingRoomFanatic]

That's good to know. I thought it was a bit ‘quiet' lol. I've been in the catastrophising stage for a long time and I've been doubting that it could get better but what you've said gives me hope. Thanks.

3. I just meant homework as in how to self manage really'.

Can I also ask… (sorry):

1. Am I still able to masturbate during the recover period?

(I know about the 2x per week thing and the lump pelvic technique I just wondered if I'm still able to masturbate during this period or if abstinence is important. I'm going on a year since onset (severe case). No real pain now since I started Tadalafil. But it's increasing my sexual drive. But unfortunately that means the testicles go up and get stuck up there a bit. I don't think any amount of PT will resolve that. I'll need to see if I can live with it rather than get surgery.)

2. Am I able to recover without internal trigger point stuff like going to Wise Anderson?

3. Why is it people here get better as opposed to other forums? The resources and info available on the ‘what helps FAQ' etc?

[webslave]

1. Yes, it's a good idea to clear out secretions on a regular basis. 2x weekly is a rough guide, but more or less may work better for you
2. Intrarectal massage of the pelvic floor is nominated as a key strategy by many men who recover fully. You can try to get better without it, but it lowers your chances of success
3. Other forums are just a lot of men complaining and catastrophising about the condition. This one is goal oriented and full of success stories. I am trying to make Reddit the same, but it's challenging.

[LivingRoomFanatic]

Thanks very much.

2. Is that guys doing PT initially but then doing internal stuff themselves?

3. Is there a general rule of thumb or ‘guide book’ as to how to proceed? I just feel a bit lost now with all the information out there. Would appreciate a bit of a steer. This is where I’m at…

Onset 1 year ago. Severe case.
Never fully recovered.
‘Relapse’ in Feb.
Hyperactive testicles.
Physio from March till now.
Doing stretches 3x daily.
Reading HITP book. Doing those stretches.
Started Duloxetine 7 weeks ago(helping mentally)
Started Propanalol (beta blocker helping)
Started Tadalafil 3 weeks ago (helping)
^ I’ve had none of the “really bad pain” since starting the Tadalafil.

* Bought Prostate PQ but yet to start until I come off the propanalol as they interact.

* Bought PEA but it has yet to arrive. Will start this once it appears (and I’ll wait a while before starting the PQ to be able to discern efficacy)

Where do I go from here? I’m a bit concerned about doing my own internal stuff. I did stick a therawand in there, but I wasn’t able to find any trigger points. My PT person doesn’t believe in them.

[webslave]

Some guys never do internal stuff themselves, some guys do it for years, some get better without internal work, some say their trigger points are external (abdomen, inner thighs etc), some swear by their PTs ... unfortunately it's hard to advise because it's a mixed bag. Going to a good PT for a while and then learning from them and doing it yourself seems to be the best way to go. If your PT does not believe in trigger points aka tender points in muscles, maybe look for another one who is well known to UCPPS patients.

The rest of the stuff you are doing is all good. The one thing missing is patience and calmness. You cannot treat this as some sort of challenge to be completed in record time, you have to relax and allow months for recovery, cherishing every little improvement, and looking for a two steps forward, one step back course to play out.

[LivingRoomFanatic]

The calmness is a difficult one. I think it’s because my mind tells me this isn’t going to get better. I was pretty traumatised by how bad mine came on and the isolation of going through it during lockdown. Developed a pretty serious anxiety disorder as a result. I’m having severe panic attacks. I literally just had one this morning between our messages and I’m now sitting in the garden.

Its sunny here this summer. But I live in a generally colder, wetter climate. I might lose my job. If I do then I’m going to try and move to somewhere sunny, as I’m aware that’s when I’m at my calmest. Light, space and air help me. Being stuck indoors doesn’t.

There is the question of this testicle issue. And for that I’m stumped. As I say I don’t think any amount of PT is going to sort it. And I’m really reluctant to try surgery for it. I’d maybe try going to Wise Anderson but it is expensive and again I’m not sure if they would be able to address the testicle thing. Seems a more difficult issue than they will be able to help with.

[webslave]

Panic attacks, anxiety disorders, catastrophizing: these are elements that can delay or prevent recovery (as conformed by studies, not just my opinion).

Cold climate: not good for UCPPS.

Testicle issue may subside with the UCPPS, so concentrate first on beating that.