My Story - Looking for Advice for Unique Situation

[GGGOz]

Asked my uro for amitriptyline and he wouldn't prescribe it until I tried a treatment of antibiotics first. Off for a second opinion.

Any advice for convincing uros for this prescription in case this next one is also reluctant?

[webslave]

May be worth trying a family doctor. When you consult a uro, you're seeing a surgeon about a pain syndrome many of them don't understand or care about.

[GGGOz]

Good news! Saw my general practitioner and he prescribed amitriptalyne. I’ve now been on it for 3 weeks or so and I definitely think it’s helping! I still can cause some irritation with bad foods but all in all I feel like I’m trending in the right direction again. 95% of burning pain gone and haven’t felt tightness for some time now. (Side note: swimming regularly seems to reaallly help with my pelvic tension)

My question now is should I bump it up to 10mg or just keep with what’s working? I don’t know if adding an extra 5mg would accelerate my recovery.

[webslave]

Keep going on low dose unless you have breakthrough pain. That drug can make you somnolent, increase weight and it's an anticholinergic, so less is more.

[GGGOz]

Well, I had a really good run. Minimal symptoms for a few months, but I think a combination of slipping up on diet (sugar, citrus,etc), sitting more than normal lately and neglecting to take quercetin has caused a remission. Sucks to have lost ground and be back in pain. Back on 1000mg a day of quercetin and off all trigger foods.

Burning is my issue, not muscle tightness which I have under control. I've also been having hip pain which I don't know if that is related to my pelvic floor issues. The pain radiates so much, it's almost hard to figure out where it is originating from.

[webslave]

See https://ucpps.men/viewtopic.php?p=57811#p57811

[GGGOz]

Hmm, I don't have any testicle pain but I do buy that they're related since my hip pain seems to come/go with my pelvic pain.

A couple questions:
- When I start to feel better, I tend to reduce quercetin to 500mg and eventually stop it all together. Is this a mistake? Should I be taking it forever? Or do I just need to stop cheating on my diet when I feel better?
- I have had relief with Prelief but you warned me that it's problematic due to studies showing that it increases fatigue. Is it worth using then at all? Or only when absolutely necessary?

Also, my condolences on your loss.

[webslave]

You could reduce quercetin to the smallest possible dose, but don't stop it completely. Stick to the diet too, as many of us do. Use Prelief when you are symptomatic only, if it helps you. In other words, don't take it all the time.

[GGGOz]

Happy to say I've been feeling very good the last few months. Minimal symptoms. The key I think is that I finally created my own cushion. All of the premade ones I tried off Amazon turned out to be too soft. For some reason, I benefit greatly from a cushion that is very stiff and doesn't deform hardly at all. If the cushion is too soft, the pressure on my perineum remains, even if there is an appropriately placed/sized cutout. This combined with the other measures I had been taking (stretching, diet, quercetin, sitting with good posture etc) has me 95% symptom free again, even while sitting at work full-time. I am very happy.

Admin Comment: Excellent. Making your own cushion

[Impressivesafe]

Do you experience any more pain after sex

[GGGOz]

No, I do not.

[GGGOz]

Still fixed! For me, its all about making sure to avoid sitting on cushiony surfaces and keep diet clean. Quercetin used as needed for minor flares, and occasional stretching for pelvic tightness.