Hi everyone,
Hate to be here but such is life.
I'm 33, diagnosed in Sep 2020 after an injury a few months before which, at the time, I thought nothing of - but of course now I associate it with what's happening.
I (think I) have included a signature which has all the salient info. A bit more detail here with a timeline of sorts:
- Injury in June 2020 during (slightly) rough sex. Wasn't the first time having sex like that but the pain was a first and was noticeable. Did nothing about it and went away after a few days
- In late-August/September I started getting some painful erections. Really painful. I noticed a small nodule on the dorsal shaft, quite high up, very near to the head. First doctor referred me for a variety of tests mainly for STDs and some bacteria were found in the sperm (Klebsiella oxytoca and Enterobacter cloacae). I found info on Peyronies Disease online at the time but it was still unclear whether the pain was caused by the bacteria or possible Peyronies Disease (or both). Took antibiotics, follow-up tests and bacteria were gone.
- Because of the referrals and the nodule I was given an appointment with a urologist who did a scan. Peyronies Disease diagnosed end of Sept. Told it was very early onset and to do nothing, but keep an eye on it.
- Pain improved after antibiotics and gradually went away by Nov-Dec.
- More or less when the pain stopped I noticed deformity: I have always had a bit of a left bend but the "new" bend was upwards.
- I started taking photos and measurements in early-Dec 2020 and I think I have an upwards curve of about 20-25% (keen to share pics as soon as I am allowed) and I have lost some length perhaps 1 inch.
- In Jan 2021 the urologist suggested weekly injections of Isoptin and Bentelan.
- However, as it happens I have moved for work, I'm now in a new country and started afresh with GP and then urologist. Here they don't do injections and the only available option is surgery! The referral is there, if I want it I can go for it, but I've taken a step back to consider.
I guess my main thoughts at the moment are that, if the pain has gone, I'm likely in the chronic phase rather than the acute phase?
The upwards bend of about 25% seems to have stayed stable now for just over 2 months (Dec to Feb), with only slight worsening perhaps.
I should add that due (I think) to the nodule being so high, it seems that just the head is tilted upwards. Despite loss in length, the shaft itself seems fairly straight. Not sure if that's unusual, good or bad. The nodule seems to have stayed more or less the same size too, from touch.
I'm not sure if I can perform as I have been single for a while now. I would also say my "desire" has gone down massively since September. I rarely masturbate and when I do it's only so I can take pictures and check my situation.
Surgery seems a little drastic so early on, from what I've read here. The fact that it's surgery or nothing is a little worrying. Of course I could travel back home and try the injections, though these would be expensive and I've been told by my current new doctor that they would likely do very little to improve the situation. My biggest worry is that the curve worsens - at which point at least I do have surgery as an option.
Thanks guys, take care.
Hello omla,
at first I would read the survival guide:
https://www.peyroniesforum.net/index.php/topic,3180.0.html
The most important thoughts, questions and so on are written down there. Surgery is the last option and maybe you can avoid it with the treatments of the survival guide.
Good luck and stay happy!
Nolte
Hello omla,
I was also told at the time that an operation would be readily available.
But I still think it's the final option.
I've been in this condition for almost 1.5 years.
I have stabilized myself mentally and believe that I have found a treatment plan for myself.
I advise you - be careful (!) with your penis and try things like Traction + VED.
The peak of my curve was at a 90 degree upward bend - meanwhile that has visibly reduced.
You need a lot of PATIENCE ... but never lose hope!
Conditions change ...
Thanks both.
Any comments/observations re the fact the head/tip only is curving?
And the fact that the pain is gone, is it possible the curve has stabilised, in your opinion?
Thank you so much :)
The deformities are different feom person to person. In my case, only my glans is curved to the left, because the plaque is right there.
No one can say, if you are in chronic phase.
Welcome! My uro told me that, if you're going to get Peyronies Disease, it is far better to get a plaque near the end of the penis than at the base. Less chance of significant deformity and erectile dysfunction there. My situation is similar to yours in presentation, although I am still experiencing pain both flaccid and erect. I am seeing a uro who specializes in Peyronies Disease in a couple weeks to find out more. My initial consult was the same - wait and see what happens. Even if your pain has subsided for now, I recommend you get a consult with another Uro who specializes in Peyronies Disease. He/she will be able to guide you through any recommended treatments and hopefully avoid surgery.
If only your glans is curved, then you basically have a more favorable case.
That the pain is gone is very good. I had pain (painful stitches!) For 2 months and it suddenly stopped. No more pain for over a year.
in my actual phase i had a lump, pain and a general feeling of inflammation.
This is no longer the case - you can't know 100%, but it feels more like a quiet phase.
I can only say what i do - VED + Traction (by hand) - 30 minutes every day.
Thanks everyone for your kind and helpful responses.
@Deek: when you say "this is no longer the case" are you referring to the pain going away, or the lump itself too?
I have started some gentle manual traction and I'm taking the supplements I could find: L-Arginine and Co Q10.
A question about dosage: the survival guide recommends 200-400 mg per day of Co Q10, the package I've managed to find in Denmark has capsules of 30mg so that would mean a minimum of SEVEN per day, can that be right?
The package itself states 1 per day with a meal so I'm a bit worried/confused.
Thanks again for your words of advice and support - I think I have been underestimating all along how important it is to try to stay positive. I am feeling slightly better now that I have a "plan", and will keep the surgery option as a last resort. Take care.
Quote from: omla on February 26, 2021, 02:33:45 PM
A question about dosage: the survival guide recommends 200-400 mg per day of Co Q10, the package I've managed to find in Denmark has capsules of 30mg so that would mean a minimum of SEVEN per day, can that be right? The package itself states 1 per day with a meal so I'm a bit worried/confused.
The survival guide is accurate.
I have a bottle of 200mg Ubiquinol which is a more bio-available form of COQ10. The bottle says to take one or two per day.
Here is just one very reputable supplier. They have no capsules smaller than 100mg. https://www.puritan.com/co-q-10-055
Brilliant - thanks very much!
the pain is gone and so is the lump.
the bend is there ... :-\
i believe that the scarred tissue has contracted and that is why the bend has arisen.
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