Do I have it? Help?

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wtf-happened

I am 52 years old

I am very worried I may have peyronies? I am in shocked and completely depressed. I have always had a slight congenital curve to the left. However, I believe a recent change may have been caused potentially by an injury sustained during two recent cystoscopies I'd had. One for prostate concerns, and a followup when they noticed a red spot in my bladder. On the followup the red spot had cleared, but the doctor without my permission, had a new doctor take over, and I believe he injured me.

Very First Symptoms -

Within the last month or so I've noticed my erection is thinner. The head smaller. The other day, and more frequent occurrences, i am with increasing frequency - extremely small while flaccid. Smaller then in any situation ever before? This all started happening after the following:

A 2nd cystoscopy was performed Oct. 11, 2021. I did not have a UTI after, but noticed, that my urine had a smell to it. The pamphlet did say there could be some bleeding, but if I'd had a temperature or any other issues I should follow up. I didn't really notice anything, busy with work and life, probably drinking a bit too much and dehydrated, but this odd smell and slight discolouration in my urine was still there? Unfortunately when I called the Urology department they referred me back to the local GP Surgery again. What's odd, is that I even noticed this smell a bit in my stool?

I had a urine test and a blood test, and a stool sample test. All which came back without issue. Although at the time, of course, the symptoms seemed to have dissipated, only to come back a bit.

Recently the last few weeks my fairly normal sized penis has had episodes of massive shrinkage. These have increased dramatically in frequency where my penis feels slightly achy, slightly numb, and while flaccid is almost infant sized. It's actually shocking. Devastating. Although flaccid, it is hard to the touch at that size. My uncircumsised head, which normally hangs below, now because it has shrunk so much - is perpendicular and uncomfortable while walking as its straight out.

I am still able to have an erection, and orgasm but even then I notice that the shaft, girth is much thinner than what I am used to, as well as the head much smaller. I don't have any pain, and have always since childhood had a very slight curvature to the left when erect. Which has not increased. I'm feeling for plaques, but at the moment, not sure if I'm feeling anything different.

It is mortifying. I am utterly shocked and depressed and am completely at a lose as to what is happening.

My Peyronies Disease progression, Treatments (in order), Doctors, Psychological Stages, observable changes -

The shrinkage has only been happening a few weeks, and it has been very intermittent but increasing in frequency. I am going to just show up at the Urology department tomorrow, but I am wondering if anyone knows a specialist in the UK they'd recommend?

Where I am today, future plans -

I am absolutely devastated, and depressed, and am hoping and praying that this can be reversed. Please help me find a specialist in the UK. Thank you.

Also, I would like to start taking some Oral supplements right away to help. Does anyone have any recommendations for my symptoms and dosages? Thank you
52 Yrs old, Not sure I have Peyronies
Penis recently shrank dramatically, Wondering if it was injured during cystoscopy
Looking for advice on supplements and treatment in the UK

Muttley

Hi WTF,

I am sorry to hear about your plight.

i am fairly new to all of this myself but I shall try to help where I can.

Re Specialist
if you can get to London then you need to see Prof. David Ralph at UCL. He is a leading expert on Peyronies Disease and highly regarded as the consultant to see. He doe both NHS and private work. I asked my GP to refer mr to him and it took only a few weeks to get the appointment with him.
If you cannot reach London, let me know where you are. it might be that I know of somebody nearer to you.

I was able to get a VED on the NHS : if you speak to the SomaCorrect distributors in Watford, they can help you with that. Ask to talk to a medical rep for your area.

Re Oral Supplements
I was advised that Cialis should be taken ASAP. You won't get that  under primary care. I get my GP to prescribe it but it aint cheap.
I also take L-Citrulline and Pycnogenal (? -  Pine bark anyway). All these things are to improve circulation and blood flow to the target area. I was unable to get pentox my GP will not prescribe it but apaprently that is recommended.

My course of action was
-i had private Health care so booked an appt with a specialist in London (Not Prof R since he charges for surgery under Private medical care). Was told that  Peyronies Disease  was covered
- had initial consultation - Peyronies Disease conformed - told to wait 9 months to see if it was stable as surgery probable next step
-I was then advised that I was not covered after all
- Asked GP for referral to Prof Ralph to go via NHS
- Asked GP for VED prescription
- Been VEDing and on oral supplements ever since
- been searching the forum at every opportunity to learn as much as I can

That's it for now. I hope that is useful.




Late 50s
Nesbit Procedure July 2023 which was successful
Official diagnosis 12/2021: Bend at the end @70 degrees upwards/@35 left

Mikel7

Welcome Wtf-hapened to the forum. Hopefully you can fine another Dr in the UK and get a proper diagnosis. You should download and read the survival guide -->https://www.peyroniesforum.net/index.php/topic,3180.msg44057.html#msg44057 . This will give you a better understanding of the different treatments and supplements that are used. Using VED treatment and starting Cialis would be a great benefit. Be gentle with sex also.
Lump 4/2020, age 62 , Dr Levine 6-26-20, Dors Curve 11/2020, Peyronies
Vit E400mg, COQ10, Heat Therapy, Penimaster, Pentox, Cialis, Restorex
SNHL 7/2020 - Stopped all Meds because ototoxicity  Heat/traction/VED are working. CPPS Diagnosis - Stable :)

Jimmy123

I hope things are going better for you(?)

My non-expert opinion is that this could be "hard flaccid" and might not be Peyronies Disease. This in your post: "Although flaccid, it is hard to the touch at that size", is very informative.

Please see the Dr. Trost Q&A on this forum, and there are some excellent resources on the web including this article by urologists:
https://www.urologynews.uk.com/features/synopsis/post/hard-flaccid-syndrome
No deformity or ED. Discomfort (which is improving gradually). Months of stress preceded symptoms. Discomfort can be palpated on practically the whole penis but it comes and goes. I can't find plaque. Latest urologist doubts that it is Peyronies Disease.