Getting worse & the doctors can't help

[Kipper]

Fast approaching 50 and my life just seems to be falling apart.
Noticed some lumps summer 2012 & then the pain started
My first Doctor was petrified when I asked him to look at my manhood, go figure, went to a sexual health clinic who didn't diagnose, saw another doctor who finally referred me to an Uroligist who hit the button on the head, but said wait and see & then probably surgery... That's it....
Now have an hour glass which fills out at the base, feels like a tight elastic band wrapped around the middle of my penis, and the top fills out but is soft. If i'm very aroused the pain is unbearable and it feels like my penis is about to explode.
Size wise I have not measured but it has definitely shrunk during erections, now I have found this site I'll start a diary and measure regularly.
Noticed a slight bend upwards this morning but the plaques are circumferencial so the top of my penis can bend in all directions so hoping that then bend is not permanent.
Re treatments, not tried anything as hate all drugs and really don't want to take anything that I don't understand how it works. This is due to a previous bad experience.
As I'm in the UK I get NHS for most things just not VED, which I think I would like to try.
My head is trying to remain calm but my sex life and relationship has taken a nose dive after 20+ years and we are trying to work through this and agree drugs are not an option.
Can I start with a VED now of should I wait until things calm down, and if I should start where can I source one in Europe?
Kipper

[Kipper]

Re health & diet
95% of my food is freshh and cooked at home, I eat almost anything and not disgusted by eating all the horse we have been consuming over the last few years, that is apart from the cost which should have made things a lot cheaper!
Fitness & health, I work outdoors, don't smoke, drink in moderation and feel great... Apart from the pain below my belt....

[Jonbinspain]

A list of recommended VED's you can find on this site. You will also need to have a rethink of your attitude to drugs, etc. Promoting and maintaining good blood supply to the penis is crucial.

Read all you can on this site, everybody here is in the same boat to one degree or another. It sounds to me as if you need to get on Pentox ASAP, it will not only help with the pain, but will increase blood flow. If your doctor or Urologist won't prescribe it, you can find where to buy it on the site.
Also helpful are L-Arginine, ALC, CoQ10. You really need to get a plan of action going as quickly as possible.
Good luck, try not to get down, be proactive and fight back.

[Kipper]

Looking for lubricants for my VED if & when it arrives, can I use the gel used for ultrasound / pregnancy scans as can source at ridiculously cheaper prices compared to lubricants.

[Old Man]

Kipper:

OK, you can use most any good brand of personal lubricant for your VED. However, it must be of a water soluble type. And, do not use a petroleum based lubricant as this presents a very serious problem when cleaning up the components of the VED after use.

The gel that usually comes with the VED package is of the personal water soluble type. In the USA I use the Walmart Equate brand of personal lubricant with is much less in price. I am sure that you can locate an equal to it in your stores or pharmacies there in the UK. KY Gel or a generic of it is a suggested type.

Old Man

PS: Some guys have reported using the ultrasound gel with their VEDs. Some say it does not clean up easily, but that may be due to its physical makeup. Guess that you could try it to see if it works all right and cleans up easily. The guys using it might jump in here and let your know their success or failure, etc.

[GS]

Kipper,

I've been using ultrasound gel for well over a year now and it works great.  The key word is "gel", don't get ultrasound lotion.  The gel is blue and the lotion is white.  I ordered gel once and got the lotion; I tried to use it anyway and it irritated my penis and was difficult to clean up.

GS

[0x5555]

I would suggest that if you have pain try to abstain from sex and things like that.  You really want to make sure that the tissue has healed as well as it can before you start VEDs and other treatments.  

[phatcat]

ox5555  Do you mean wait till the pain goes away to take orals like pentox, arganine, coq10  etc..?

I've been thinking about this. The pain makes me feel like I need to stop having erections for a while to heal but all the orals seems geared towards increasing blood flow which would seem to in turn increase erections (frequency, hardness).  

There are times in the morning when i'll wake up from an erection, get it to go away, then as soon as im starting to fall asleep another one will pop up.   this is super frustrating and i'm wondering if i should lay of the  meds for a while.

[ashtown]

Phatcat, you absolutely need the blood flowing as well as possible to help with the healing process. At least some pain is almost inevitable when you have Peyronies and I know it can be bad but sometimes we just have to live with it.

Those supplements help with circulation and to some extent with the pain. Not long ago I ran out of CoQ10 temporarily and I was shocked at how quickly the pain returned but it stopped within hours of restarting. Diet is also very important and underestimated by most I suspect.

Poor blood circulation in your penis is absolutely the last thing you want. Personally I'm staying away from the VED and sex because they have both caused me damage but the erections are frequent and daily due to the combination of meds, diet and exercise. That way I have the healing benefits without the risks of damage.

Everybody's opinion will vary and no two cases of Peyronies are the same but staying off the meds until the pain goes away is basically the same as the "do nothing, wait and see" approach that only leads a lot of pain followed by surgery in most cases.

[Skjaldborg]

I concur with ashtown: blood flow is a must and so are erections. I too had painful erections but after a few minutes the tissue felt much better after stretching. Natural erections like "morning wood" are part of your body's natural healing process. Think of it like physical therapy, it's a little bit painful, but very beneficial.

Just to be clear, don't put stress on the erection by bending or do anything that could cause an injury (rough sexual activity). Natural erections should be just fine though.

[james1947]

phatcat

Regarding pain, Pentox is helping almost everyone who take it. It may really change your sex life.
Welcome to the forum

James

[phatcat]

OK Thanks guys.  That's encouraging to hear James.  I'm not on pentox but am going into a specialist in peyronies (after seeing a doctor who knew nothing) on Tuesday so i should be on it soon.   I really hope it helps.

[0x5555]

Phatcat, you absolutely need the blood flowing as well as possible to help with the healing process. At least some pain is almost inevitable when you have Peyronies and I know it can be bad but sometimes we just have to live with it.

Those supplements help with circulation and to some extent with the pain. Not long ago I ran out of CoQ10 temporarily and I was shocked at how quickly the pain returned but it stopped within hours of restarting. Diet is also very important and underestimated by most I suspect.

Poor blood circulation in your penis is absolutely the last thing you want. Personally I'm staying away from the VED and sex because they have both caused me damage but the erections are frequent and daily due to the combination of meds, diet and exercise. That way I have the healing benefits without the risks of damage.

Everybody's opinion will vary and no two cases of Peyronies are the same but staying off the meds until the pain goes away is basically the same as the "do nothing, wait and see" approach that only leads a lot of pain followed by surgery in most cases.

People on this board have a lot to say re: blood and circulation and stuff like that.  I understand the health aspects of getting erections and things like that but I also think that some of us have different levels of pain when they get erections - I think it's unfair and unwise to give advice regarding erections when you don't know the specifics of how much pain a person is in and the specifics of what their underlying medical condition is.

In my case the pain was at like an 8/10 and erections made them VERY bad.  It was a 24/7 pain and so severe it would wake me up at night for almost a year and a bit.  I read stuff on this forum like 'use it or lose it' so was not abstaining.  I think this has complicated my situation quite a bit. After I started to abstain I did notice that the pain has slowly started to get a bit better.  Anytime I get an erection the pain resumes.  

Again, each person is different and definitely the level of pain is different but from someone who seems to have had a rather severe issue with pain I think the 'use it or lose it' and 'just grin and bear it' advice is not helpful.  I think some caution is merited in the type of advice we give especially those who are in pain as what may be good advice who has a well-healing plaque/trauma may not be the same advice you'd want to give to someone with complications that are giving them pain.

[funnyfarm]

Wow ox 8/10 is very high, I hope you are better now.  I am in the same boat, sex is not possible due to pain, but the longer I leave it alone, the less problematic the pain is.  So I think you need to slowly introduce activity as your situation improves.  I wish I knew that earlier..   When you break your arm, you are not told to use it or lose it !  But yes I could see how someone with no pain, and bad deformity would need to evaluate this differently.  Peyronies Disease effects none of us exactly the same.

[james1947]

0x5555

I think you misunderstand the advice on the forum:

'use it or lose it'

is right, not always can be implemented and of course your first target is to reduce the pain.
Blood circulation is key to a healthy penis, this is the forum conclusion also, but first it is what leading urologists are saying. I don't have too much trust in doctors, but I do trust some of them if they have proved performances.
Last, you don't need to quote entire posts. You can just direct the people to the post if you want. It requires some more time then just to quote, but takes less space on the server and make the topics more readable.

James

[phatcat]

I've been on pentox for about a week now and so far it hasn't stopped the pain.  About how long should i expect before i get relief??  i've been reading anywhere from immediately to 5 months...

[Noway]

@phatcat

Pentox made my penis fuller in the flaccid state and better quality of erections. Pain is just something you deal with peyronies disease can flare up I get pain off and on and ive had it for a long time. For me after years of having it the pain just went away but flares up sometimes. Get on pentox and Cialis together they work good.

[LWillisjr]

Noway,
Pentox is the recommended drug for pain. Cialis is recommended only if achieving an erection is also a problem. Cialis and pentox are not required to be used together just to address pain.