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Author Topic: At a treatment crossroads after 3+ years of pain - Needing your advice buddies  (Read 732 times)

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Gabriel

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Hi guys,

Coming back after 1+ year of distance, I’m glad to read again from all of you. I just redacted this big post (https://www.peyroniesforum.net/index.php/topic,14622.0.html): it sums up my whole 3+ years of various experiments in order to deal with Peyronies Disease and never-ending active phase, and I encourage you to have a glance at, as far as it lists everything that has worked for me -and might work for you- so far.

After all this time, I am now at a major treatment crossroads, and I need the help of all of you who are willing to.

I admittedly managed to lessen my pain while having erections, but it’s still there and is clearly plateauing, letting me think that it will never disappear and bring me to a sustainable life without any further action. Though the diformity has sort of stabilized (general hourglassing, worsening at a very very slow rate now), the pain is still a major issue. Worse : while after 5 years of single life I think I might now have met the women I would like to spend the rest of my life with, the idea to go further and begin a sentimental/sex life with her terrorizes me, I feel like I’ll never be able to satisfy her –she’s 25, apparently very demanding about the thing, and due to my pain during and post-sex, I really can’t do it much.



To this day, I’ve been able from experience to distinguish between three forms of pain I endure:
1. A sharp burst of pain that comes with the erection process, irradiates into the whole shaft, but subsides when tissues become to get hot (caused I imagine by the plaque confronting the inflation process).
2 . A diffuse but gnawing pain while in erection, that resemble to the one caused tightening your fist a little too hard, and that does not go away in erection (caused I imagine by the plaque surrounding the whole shaft like a corset too tight for the amount of blood flow and the will of expansion of the tissue).
3. A sharp, burning and somewhat bleeding-feeling  kind of pain that manifests more rarely now, in a very localized manner, i.e. in a zone the size of a rice grain on the left right under the glans, where one of my first injury began. This is, I am pretty sure, the last surviving bit of proper injury-inflammatory process, as this pain is of the same kind that the one I was feeling in differents spots of my shaft when it all began.

The two kinds I am most concerned with are type 2 (hurts sexual life badly, probably causes the long-lasting pain sequel after sex sessions) and type 3 (probably reveals an underlying still active worsening process, with progression of the diformity and a new dent at this spot).


--> So, the question is: apart from everything I already tried, which way would you recommend I explore in order to at least lessen or try to eliminate this pain?


The possibilities I discern now, though not very encouraging, are:
- Keep on experimenting with home ESWT device (detailed post coming soon about it; nothing thrilling for the moment);
- Trying to have delivered in France some H-100 gel preparation, which gave very few but still one or two good results (eliminated the pain of buddy Diehardpatriot, if I’m not wrong);
- When I have the money or when it is finally available again in Europe, trying to go for a few rounds of Xiaflex (might at least release the “type 2” pain by digging holes into the plaque);
- Try to go this time for a 3-week water fast, which I actually really don’t have neither time nor psychological power to do.


So what do you think about them, and even more importantly, do you think about other possibilites that you would recommend? I’m open and ready for everything :-)…


Thank a lot for your patience and your help bros, and stay strong.

Cheers,

G
Logged
- 33 yo, very healthy lifestyle, Peyronies Disease with pain, general hourglassing with girth and length loss since 09/01/17. Still acute.
- Treatments tried: almost everything; few things helped (see my big related post on december 2020), but pain still there...

NeoV

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Nice posts and glad to have you back!

That sounds really frustrating man..

Just curious why keto did not work, yet fasting did. Have you tried doing OMAD plus keto or something a bit more sustainable? And did you have your protein too high?

Myself and a bunch of guys I've spoken to also notice that fasting truly does wonders for pain as you've mentioned it did for you, but I think if one can maintain that more consistently, that would be ideal. OMAD, or other day fasting, or weekly 42 hours, is what I do, and then I stick to a low insulin diet as you know. Even carnivore for me, does not work due to it being too high protein and causes me extreme pain in my nerves. Anyway, I typically do a 24h fast every other day, and a 42h fast once a week. My meal or meals are usually veggies in olive oil and a bit of meat, or eggs, up to 6 at a time or even more. Long fasts seem useful but wound healing studies on rats showed the best healing with refeeds every other day or so. I'll have to dig up studies on that.

Also, I don't think I saw heat in your list of treatments! Heat has been one of the only things that has rid me of my pain and post sex deformity/pain since I was 17. Cold always made things worse (except for the obvious numbing effect). I was seeing a girl for a while who was a sex maniac and she would always heat up my rice sock for me after sex, happily, haha. It was that important for me, and still helps me keep my penis extra elastic. It scares me to think of what my penis would look like without having heat all through my twenties, even if I need it less now. The rice sock is the best method unless you have a infrared pad.

When you say she is demanding, what do you mean? She wants sex often, she wants a certain type of sex, or she needs penetration etc.?

TonySa

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Some additional considerations.

I agree three week fasts sound unsustainable.  If you can try what Neo suggests-great.  If not consider intermittent fasts (no food 12-16 hrs each night).

Are you regularly taking a NSAID for pain?  If you are and it’s not working maybe try another one. 

I especially found applying generic voltaren gel directly to my penis really helped.  Maybe 3x/day, or before or after sex.  Experiment and see what might work for you. 

Also, some have reported helped w the pain.

Welcome back, and please keep us posted.
Logged
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

Gabriel

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Hey buddies!

It's so so good to read you!! Thanks for your words, greatly and sincerely appreciated :).

Tony, I am indeed taking NSAID (ibuprofene) and rubbing voltaren (diclofenac, 4% version) on my junk, but only after sex or masturbation (I don't want to take NSAIDs on a daily basis, and diclofenac cream is super stinky lol). They tend to help, but only in a time and intensity-limited manner.

Neo, I have of course tried OMAD and all sorts of IF protocols: IF has been so obviously part of my life for so many years that I totally forgot to mention it in my original post haha (now edited and corrected!). Unfortunately, nothing in the nutrition range apart from a very long water fast had any observable effect on my Peyronies Disease pain. I am absolutely certain from my research and discussions that keto can be a life-saviour for many conditions in many persons, as you are living it (I read all your posts and watched your video aboutit it with great interest); I tried it a lot, but I am now positively sure from multiple self- and lab measures during two years, that glucose and insulin ranges does not influence at all my degree of pain nor progression of the deformity. Besides, abstinence and keto are a blessing for my gut, but on the flip side a nightmare for my athletic performance and overall anaerobic energy (even after a whole year on strict clean keto).

Actually, the one and only thing I have not thoroughly tried nutrition-wise in 3 years is going very low protein. I have been thinking for a long time that it might influence the collagen/cheloïd anarchic reaction via the mTOR pathway, but I'm too uncertain due to the general failure of nutrition with regards to my case (NOT saying that it's not important though: nutrition IS one if not the one most important thing regarding your health), and I am also (I confess it) too stupidely afraid of losing the muscle I have been building up during the last years (probably to compensate all this crap haha).


About the heat, I also forgot to add it in my previous post (done!), it was ambiguous: HotHands prevented me from getting the dreadful cold dick syndrome while doing long traction sessions, but seemed to awaken and foster inflammation and pain in other situations. But I actually never tried the rice sock method (so just a sock and some rice ^^??), and I have to say your experience does motivate me!! The girl that might be "the one" is actually a recent friend (that's how I know she is very active, like litterally fornicating all the time in what seems to be a vigorous manner), currently far away for studies during two month, but coming back in one week. We'll see then if things have progressed to the "relational tipping point" due to our daily electronic communication, and if kiss and sex is on the to-do list^^...




Logged
- 33 yo, very healthy lifestyle, Peyronies Disease with pain, general hourglassing with girth and length loss since 09/01/17. Still acute.
- Treatments tried: almost everything; few things helped (see my big related post on december 2020), but pain still there...

TonySa

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I’m always curious how tolerating pain is preferred over a daily medication?  If there is a specific concern such as impact on liver values-one could closely monitor it.  That said everyone has to weigh the cost/benefit ratio for themselves.  You sure are trying almost everything you can to address this.  Please keep us posted!
Logged
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.
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