Greetings all- I'm here looking for help and support. Hope you can help!

[Jinshanmu]

Hi everyone. First off, I'd just like to say what a nice forum this is that I've been looking through. Most of these forums regarding male sexual dysfunction issues are absolutely depressing and do nothing but make me worse. Whilst things are most definitely crap right now, it's good to remain positive and it would be nice if some of you could help me out.

Basically, I'm pretty sure I have Peyronie's and my doctor + urologist have done absolutely nothing to help or diagnose me and I feel so lost right now. My penis curves slightly to the left when flaccid and most definitely does when semi-erect, erect it's hardly noticeable (but I'm suffering severe ED at the moment). When it does start to get erect, it's like the bottom and middle get blood flow and the top of my shaft takes a long while to follow suit. I have pain under the glans and horizontally under the glans is what looks like a hard thread. My doctor said it's a vein and it will sort itself out, urologist also said it will sort itself out...I feel helpless.

Has anyone ever heard of Post-Finasteride Syndrome? From the hairloss drug? I'm experiencing symptoms from that, but from Saw Palmetto, I took a high dosage of it and it works in the same way as Finasteride (blocking DHT) and I'm suffering some severe side effects. I think Saw Palmetto is good for some people, but I don't think 1800mg a day for a 26-year old male does any good. Anyway, some people suffering from PFS have reported a development of Peyronie's and my curvature began at the same time as all the other symptoms. Whilst I know none of you here can diagnose me, could you suggest where I go from here?

I'm going to see a Chinese doctor soon, he has 30+ years experience so I'm hoping he can help me at least hinder the symptoms in this early stage. What a nightmare. My main concern is, I'm in a long-distance relationship, I really love her and I don't want this whole thing to end it. But it's a really difficult situation. Life sucks at the moment.

I'm usually a positive guy and I have been really positive about recovering recently, have a whole regime set-out but today I tried masturbating and I noticed the curve was really bad and the thread on my penis is hurting. Has anyone here had a successful relationship whilst living with Peyronie's?

[Stabler]

Hello Jinshanmu,

First of all welcome to the forum and I am glad that you found us, yes we are a good group here and we try to stay positive. Many of our members have been where you are in regards to having physicians that have little or nothing to do in regards to helping or giving them any hope of a better outcome. This will not "work itself out" unfortunately, In the Welcome letter I sent to you, there is a list of Urologist that specialize in Peyronies, please have a look at the list if you cant fond one on your own, the list is broken down into areas of the world so it is very helpful in searching,

On the boards you will be able to search through countless posts of men who experience and live with Peyronies every day and have done so, some for many years, use their knowledge, ask them questions and if it is something you wouldn't want to post publically you can send a "Private Message" like I did with your welcome letter. We are all here to help.

My personal advice on your long distance relationship is to simply be honest, share with her what you are going through and try not to shut her out if she wants to help. I understand that I am not a man and I don't know what you all personally go through, but as a woman, we are giving caring creatures so let us be there for you.

Okay have a great day and let the posting begin!!!!

Hugs Mamma

[Jinshanmu]

Thanks for your warm welcome Stabler! The link you sent me was much appreciated, I have just googled for a Peyronie's specialist in London and I have found one. I'm moving there in a couple of weeks so hopefully there's some better specialists kicking about in the big smoke. My only problem is, I'm not made of money and all these scans etc. could cost me dearly. We have free healthcare (NHS) in England, but it takes too long for anything to happen via the NHS so it's better to go private. I spent £150 (approx $200US) for a 30 minute meeting with a urologist who prescribed me some viagra and sent me home. Great.

So yeah, it's more the uncertainty of what's going on with me right now that's REALLY getting me down. Once I can find what's wrong 1 million percent, I can work on recovery. I know Peyronie's is untreatable, but as long as I can get it hard (which is something else that's not happening right now); I'll be happy.

My girlfriend knows about the ED I'm experiencing from taking the herbal supplements and she's being really supportive. But, it would just be nice if a medical 'professional' actually helped me for once.  

[Stabler]

Just make sure you research the new urologist, make sure that he really knows his stuff about Peyronies, Also, we have members from all over the world here in the forum, you can post asking if anyone knows a good urologist in the area where you will be moving to, USE this forum really, that's why we are here.

Hugs Mamma

[Jinshanmu]

Alright everyone. So I'm still having to wait until I can get an appointment with a urologist cos I have to do it through the NHS; I'm pretty broke at the moment and a private urologist who specialises in Peyronie's is out of the question for now. The thing is, I'm still trying to figure out whether I have Peyronie's or not, I know you can't diagnose me; but can someone here try and help me out maybe.

Basically, I have pain/discomfort a couple of milimetres below the glans. From the middle of my shaft (at this point below the glans), there is a cord which runs like a ring down to the side of my penis (parallel with the glans). There is more pain if I play around with it (so I'm stopping that), but I have been touching it to try and figure out if it's plaque, a thrombosed vein or is it sclerosing lymphangitis? When I google sclerosing lymphangitis, the cord on my penis looks exactly the same. When I push the cord, it does go down; it's soft-ish and I can't feel anything hard. Does plaque feel hard? I'm considering just buying some Pentox anyway, I know some of you may say this is foolish, but regardless of what I have; there's clearly inflammation in my penis and it needs to be solved.

Can anyone help me out on this?

Cheers.  

[J-A]

if you can muster up a couple of hundred quid make an appt with the London Andrology clinic. at least then you will get a proper diagnosis from a specialist who really understands the issues. Although expensive I recently underwent surgery with them and so far the result is amazing, not everyone is a candidate but you will get honesty. The NHS urologist i saw ws a total waste of my time and his

[Jinshanmu]

I hope I can get enough to go there, it's 300 quid for an initial consultation isn't it? Or have I got that mixed up? Basically, I'm a mature student who's about to start my first year of uni in London next month. So I'm really tight on wonga at the moment. I'm based in Cornwall at the moment, I recently paid £150 for a private urologist who told me I'm fine... so yeah, bit rubbish really.

Anyway, I will register with a new GP in London and will push to get tested. Also, once I get some part-time work and my student loan through, perhaps I can work out the finances to go and see the specialists.

[Jonbinspain]

You clearly gave a problem. However, I'm far from convinced that it's Peyronies, from what you've described.

If it is Peyronies, and you can't maintain an erection with Viagra - I assume you mean 100mg?, then you most likely have venous leakage. Either way, get to a competent, and I stress the word competent Urologist. All that I have heard about London Andrology has been good, so it's probably worth the £200.

[Jinshanmu]

Yeah I think you're right, just been doing my research via this forum and they sound really good. I'll get the money for it. Thing is, I really don't know why I have ED. I believe it's possibly linked to my Saw Palmetto episode. Are you aware of Post-Finasteride Syndrome? Basically, I took a herbal supplement which works the same way as this drug and it's given me some seriously bad side-effects. I haven't even tried the viagra yet, so not sure if it's a venous leak. But yeah, I have pain and nothing's working; I need a competent urologist. I'll get to the London Andrology and once there I'll let you all know what's going on.

Just one thing Jon, what makes you feel certain I'm not experiencing Peyronies? Is it the lack of 'hard' plaque? I would like to know how the plaque is supposed to feel, if anyone could tell me.

Cheers.

[Jonbinspain]

I'm not a doctor, and I don't wish to attempt a diagnosis, but the symptoms you describe certainly don't sound like typical Peyronies. Having said that, all cases are different and I wouldn't rule it out entirely.

It really is best that you see a competent urologist.

[Jinshanmu]

I've made some adjustments with my finances and I've sent London Andrology an email asking for an appointment. Hopefully they can get to the bottom of what's going on here. I notice that the doctors are all foreign; couple of them Austrian and German...this encourages me a lot. I'll be honest, I think one problem with my experiences in the UK are with English doctors culturally just being wishy-washy. My GP was almost embarrassed to have to look at my penis; how professional.

Anyway gents, thanks for your advice. I'm booking an appointment and this will hopefully show me the course of action I must do next!

On a side note, my nocturnal erections have been improving a lot recently; so I don't think it's venous leak. I would rather have Peyronie's than venous leak!

[Jinshanmu]

So I'm booked in for the 10/09 and they said they can give me an ultrasound for £150. Looks like I'm eating Tesco Value for a while!

[Brunobald]

Hello Jinshanmu

Finasteride killed my sex drive made my semen very watery and erection hardness was 50%. Its been 3 months or so since I last took Finaseride and I can report that my erection hardness is back to normal and my semen is roughtly as thick as it was. The only lasting problem I have is a bent flaccid and constant burning pain about half an inch down from the glans on the left side. I went to a uro and he said it could be peyronies but it is too early to tell, he very rarely gets someone into his clinc before 4 months or so of symptoms.

I am very interested to hear what your appointed with London Andrology tells you

[Jinshanmu]

Mental, that's exactly where my pain is; pretty much. But I have either a thrombosed vein or something too, I really don't know. It curves a bit to the left, it seems everyone who gets curvature from Finasteride has a curve to the left; very bizarre. Anyway, is that the only remaining side-effect you have now? Your libido all good? You been on the Propeciahelp forum? I recommend reading Chi's recovery, he had left curvature too.

And yeah, I'll let you know what they have to say at London Andrology and I'll let you know if it's worth it or not. To be fair, judging from everyone else's experience there; I think it's definitely worth it. End of the day, you can't get a confident diagnoses without a knowledgeable professional and an ultrasound scan. Without them, we're always gonna be guessing. In the mean time, I would recommend sticking to an anti-inflammatory diet and exercising.  

[Brunobald]

Thanks for the tips.

Yes within two days the burning itch in my scalp came back and I began losing hair. Finasteride is excellent at stopping my hairloss my scalp felt nice and calm. Sexual desire and erections were back within a month, during this period there were ups and downs. Watery semen stayed for 2 months but now seems back to normal. The only thing that remains is pain and bent flaccid/semi full erections seem somewhat normal and if they are bent they are not bent at the sight of pain but actually much closer to me body say maybe 1 inch.

The strange thing with my bending is sometime I can have a perfectly straight penis usually as blood is entering the penis but as soon as the smooth muscle begins to contract the penis will begin to aggressively bend to one side. It seems as if the blood is draining out of the left side faster or the  smooth muscle is contacting faster on the left side, sort of like I had hard flaccid only on the left hand side? Is your bending anything like that?

[Jinshanmu]

Yeah mine seems to fluctuate, I'm thinking pelvic issues may be the cause of many of our waist-down symptoms. You're lucky you have libido and erections back though! I've had improvements but it's still a nightmare, I've started getting watery semen too. Really bizarre, anyway; I'm happy to report that I have an appointment with Dr Franklin Kuehas, if there's anyone who can diagnose the problem; then he's the man!

How you doing mentally Bruno? I'm still getting bouts of depression sometimes, really annoying. I'm remaining positive though, I have no choice but to be!

[Brunobald]

Mentally I only get depressed when it gives me pain. It bothers me less and less each day, as long as it stops progressing I will be happy with my little man. Surprisingly the hair loss still bothers me more, it comes with a burning itching sensation all over my scalp that rarely lets up.

[Jinshanmu]

So then, I met with Dr Franklin Kuehhas and first off I just need to say, wow, what a man. Seriously, anyone in the UK who is having trouble getting diagnosis, understanding, sympathy etc. needs to put their hand in their pocket and book an appointment with this man. If only every professional was like him.

Anyway, I am fortunate enough to say that I do not have Peyronie's and I was scar tissue, fibrosis free. He found a possible cause of my pain and noticed on the ultrascan that my seminal vesicles are extremely swollen and he says I have an infection. Which makes sense because I have had weird semen as of late. He also found a 7mm kidney stone, ouch! He also knows about the effects of Saw Palmetto and has offered to give me full hormone/thyroid test and has emailed me a letter to show to my GP should I choose to get the tests on the NHS instead. What a bloke. Anywho, this journey of possibly having Peyronie's has been extremely frightening and it has given me much admiration for those of you who go on with your life despite experiencing this. It takes true courage to fight such a thing. God bless you all and again, anyone in the UK needing help regarding Peyronie's and ANY male sexual health matter in that case; should go and book an appointment with the International Andrology Clinic in London.

Thank you so much for the recommendation gents. Money well spent.

[james1947]

Happy for you Jinshanmu you don't have Peyronies
And yes, Dr Kuehass is the man. We have no any members that said something negative about him

James