First Post - Frustratingly slow wait for NHS appointments. This forum is amazing

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PDYorkshire

The story so far .....

18 months ago, I split from my partner of 6 years. During these 6 years I had some intermittent ED which I put down to getting older, or being tired, stressed etc. Other observations during this time: weakened urine flow, less sensitivity in the head of the penis, erection strength slightly variable. I had blood tests to rule out prostate cancer (PSA), diabetes, amongst other things.

6 months ago, I started seeing a new lady. During our first attempt at intercourse, I sensed something wasn't right. But I wasn't sure and feeling embarrassed, didn't say anything, but it wasn't exactly a success. But the 2nd time, we stopped and had a discussion as something definitely wasn't right.

Similar to our first attempt. I didn't have a full erection, there was some curvature, and the erection soon subsided.

I made an appointment with the GP (UK version of MD) who advised more blood tests. Which all came back OK. I was told the issues "must be psychological" and that the curvature was due to a lack of blood flow as a result. I wasn't convinced but it took a few weeks for me to get back in touch with the GP.

My girlfriend suggested I got my testosterone levels checked. I had to fight to have these test done. The tests checked all the major sexual hormones and I was told "a few of them were elevated".  Elevated testosterone has similar symptoms to low testosterone. The GP referred the results to an Endocrinologist and I had to wait 3 months for an appointment to discuss the results.

The endocrinologist said a few of the hormones were mildly elevated but not sufficient to warrant investigation or treatment as they were within tolerance levels. I was shown all this on screen. Mid January 2022 (4 months since the realisation of a problem)

So I again got in touch with my GP and had to fight to get a referral to a Urologist. This came back as the end of June 2022 for an initial clinical assessment. I decided to pay for a private appointment (to see the same consultant) but the appointment date is next week 8th March.

My girlfriend was very sweet about all this, but we have ended up in friend zone. Not completely because of my erectile problems but I am sure it hasn't helped matters.

My ah-ha moment arrived when I googled curvature of the penis ( I don't know why it took me so long to do this????) and I read about peyronies disease. I suddenly remembered around 10 - 12 months ago - a one off sexual encounter, which is when I believe I sustained some sort of injury. There was a definite feeling of the penis buckling / bending back / even possibly snapping. That's what it felt like at the time. I don't remember any pain / bruising / other signs of damage in the days following and so must have put it out of my mind.

Finding this forum whilst doing research has been a great help. At least I am starting to understand what's possibly going on, and my potential options. The waiting and not knowing, was in itself a worry. Being in your early 50's and having these sorts of issues, you can't help but wonder " is this it?    ... no more intimacy and sex? .... "    

Whilst I can see that there isn't going to be a quick fix, I have been relieved to read other peoples stories of success and educate myself ahead of my appointment next week. There is some great advice during the introduce yourself board (Thanks Hawk) and links to a couple of informative videos.

So I am going to continue with my research on this forum and see what the Urologist says. I think my approach will be a mix of supplements & VED to start off with.

My curvature is quite severe possibly 90 degrees (I need to take some measurements as suggested) the base of the penis seems reasonably firm when erect  but not fully, I have a definite flop / hinge thing going on, and a less firm head area. Night erections seem stronger (again measurements would help to confirm this).

Any comments, suggestions appreciated. Thanks guys.


52
Symptoms noticed Aug 2021.
Diagnosed Peyronies Disease April 2022 - 35 degree up curve - Private Urologist recommended Vitamine E, SOMAcorrect
Single (but would like to start dating again)
Likely injury during sex early 2021.

Vit E, Co Q10, tadalafil

PeyroniKirai

Hey PDYorkshire,
Thanks for your post and all the info.  I know how frustrating NHS is.  I remember when I lived in the UK, my wife had something wrong with her stomach and needed a CRT scan.  The doctor told us there would be a six-month wait. Then I asked, what I if pay you the full price and do it private?  He said, well, what time are you free this afternoon, tomorrow, or the next day?  In the end we simply paid him 1000 pounds and got the CRT scan an hour later - and also the service we got was much better than under NHS too.  As I used to say, if anything happens to me, put me in an ambulance and take me Heathrow so I can go the hospital in the US.
 Such comments aside, you're doing the right thing to go private and I'm sorry to hear that the GF relationship has become sexless for the time being.  Stay positive and hopefully you can get back with her.  It's definitely not the case that there's no more intimacy, even with Peyronies.  Sex too - though it may be different from before, at least for a while.
 Keep us posted on your progress as there are lots of Forum members in the UK.
Age 64, Peyronie's history 4 years, left side hourglass, 20-degree bend to left, no ED

Mikel7

Welcome PDYorkshire to the forum.  I'm sorry to hear about your situation.  I am interested in your hormone testing results as I have been on full hormone replacement for 18 years now. When you were told that some of our levels were elevated, which ones were?  One that will cause problems for every man is Estradiol or E2 as it is referred to. If it is elevated it will cause a bad cascade of events and a downward spiral of chain reactions in your hormone profile. I have never heard of an elevated testosterone level itself unless someone is on a run of steroids for muscle building. I know that finding an educated hormone Dr is very difficult. :)  Mikel7
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 :)

PDYorkshire

@mikel7

E2 wasn't tested as far as I'm aware. I don't remember discussing it. I'll bear your comments in mind thanks.

Testosterone was higher than average on both occasions, but not sufficient for concern.
Luteinising Hormone, Follicle-stimulating hormone & Prolactin were elevated as well. I was told that it's not understood what role prolactin has in males.

I was asked if I was taking steroids or other supplements :)
52
Symptoms noticed Aug 2021.
Diagnosed Peyronies Disease April 2022 - 35 degree up curve - Private Urologist recommended Vitamine E, SOMAcorrect
Single (but would like to start dating again)
Likely injury during sex early 2021.

Vit E, Co Q10, tadalafil

Mikel7

I think you need to find another Dr for your hormone situation. There is a book you should read --> https://www.amazon.com/Testosterone-Guide-Second-Nelson-Vergel-ebook/dp/B003JBI22A/ref=sr_1_1?crid=194PI10XLPAYL&keywords=testosterone+a+mans+guide&qid=1646172297&sprefix=testosterone+a+mans+guide%2Caps%2C189&sr=8-1 . This will give you all the knowledge you need before you go into another Dr.  It will give you insight into how our hormones and tests for them are ran.

If your LH levels are high that means the signal is being transmitted to your testicles to produce testosterone. High prolactin can screw things up .
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 :)

PDYorkshire

52
Symptoms noticed Aug 2021.
Diagnosed Peyronies Disease April 2022 - 35 degree up curve - Private Urologist recommended Vitamine E, SOMAcorrect
Single (but would like to start dating again)
Likely injury during sex early 2021.

Vit E, Co Q10, tadalafil