Hello,
I have been lurking on this forum for a little while, but thought I would post and introduce myself.
I am a man in my mid-thirties from the UK and have been suffering with Peyronie's disease for just over six months. I am married and have a child under one year old (so sometimes get less sleep than is ideal). I have reasonable general health, but I do have IBS (treated with mebeverine and amitriptyline) and suffer on and off with anxiety and depression. I have been a vegetarian for nearly 20 years (I am also trying an anti-inflammation diet where possible at the moment). I usually walk about two miles a day, but don't really do much exercise in addition to this. I work in a clinical coding department for the NHS so have some degree of medical knowledge.
I went to see my GP a few weeks after noticing painful erections at night and then an indentation in my penis and a curve of around 30 to 40 degrees to the left when erect. I already suspected Peyronie's and he felt I was probably correct, but suggested I should see a urologist.
I told my wife who was and has continued to be very supportive and understanding. We did not have sex while she was pregnant or for a few months after my son was born so at that time she was unaware that I had noticed anything unusual (I suspect I may have injured myself during masturbation, but am not certain of this).
I have private health insurance so went to see a urologist at my local private hospital. He examined me and confirmed the diagnosis after looking at photos I had taken and feeling the plaque on the left side about halfway down. He felt there was little I could do except wait before possibly opting for surgery, but suggested I see Mr Garaffa at Highgate Private Hospital in London about the possibility of injections.
I went to see Mr Garaffa and he too suggested there was little I could do, all oral treatments were useless, a series of injections would possibly be more traumatic than a single surgery and that if it was his penis he would do nothing!
I came home feeling quite disappointed and will admit to having felt quite depressed at this point. I had been taking Vitamin E, but gave up on this. My wife and I had sex a few times which was usually uncomfortable for me at first, but not throughout (she says she is not made uncomfortable by the curve). Unfortunately I fairly quickly lost interest in sex and tried to avoid it for some time.
More recently our sex life has improved, I have begun to research the disease and am in the process of arranging some help with the depression and anxiety (I have been in counselling previously and have been treated with medication in the past so I am not new to this).
I had a follow up appointment with the urologist I saw initially and asked his opinion on traction devices, oral supplements, etc. He felt that they wouldn't do any harm, but that I shouldn't expect miracles. He suggested waiting at least another six months before contemplating surgery. I also saw my GP again and asked why drugs that appear to be routinely prescribed in the US (pentox) haven't been offered to me here. He was of the opinion that drug companies in the US are more able to push useless but harmless drugs and that in the NHS this doesn't happen! I'm not sure how true this is!!! ??? ;D
At the moment I think my condition has deteriorated slightly, but not drastically since I first noticed symptoms. The curve to the left is possibly slightly worse and there is also now a slight upward curve. The indentation is less visible, but I can still feel it. I don't appear to have difficulty getting an erection and they are probably less painful, but still feel a bit uncomfortable. Sex is also sometimes painful to begin with.
I think I am now ready to look into what I can do about this myself. I would really like to avoid surgery if at all possible and have been considering traction devices and oral supplements. I have a few questions:
- There are some oral supplements suggested in the survival guide thread. Does anyone know whether these are likely to exacerbate my IBS?
- Is there any chance my IBS medication (mebeverine and amitriptyline) could be having a negative effect on my Peyronie's? I know mebeverine acts on the smooth muscle of the gut and wondered if this would have any effect on the structures in my penis.
- I don't feel I would be able to use a traction device during the day at work, but could probably manage a few hours in the evening or at night. Is this enough to have an effect or would it be a waste of time? I think I feel more comfortable with the idea of a traction device than a vacuum device.
- Sex is still uncomfortable and even painful at times. I have read that you should not attempt to bend an erect penis as you may make things worse, but sex would be impossible without some degree of bending! We are careful and use positions that are most comfortable for both of us and would stop if things were too bad. Is some pain / bending acceptable or am I likely to be making things worse?
- Is there anything else I could be doing? Is it worth seeking a third opinion from a specialist? I'm not even sure where I would start with this!
Thanks for reading. I would appreciate any thoughts or advice!
Hi unsnarl, have you ever been tested for low stomach acid?
Low stomach acid is 'unreported', some GP's when your report possible acid reflex problems automatically prescribe PPI (Proton Pump Inhibitors), I know because that person was me, it made me feel really crappy!
I take low dose Betaine HLC with pepsin, the difference is like day and night for me. I have never been diagnosed with IBS but since I am a lot older I don't think I produce as much natural stomach acid as when I was younger, below is a link to a site which may be of interest;
https://flourishclinic.com/low-stomach-acid-irritable-bowel-syndrome/
Am I saying try Betaine HCL with pepsin without speaking to your GP, certainly not, that would be foolish, I did tell my GP after she prescribed me PPI and she was 'dumbstruck' and had never heard of it!
This is the problem with some Doctors they are only interested in medicines to 'manage' the condition, not cure it.
Sorry you have Peyronie's, me too, simply arrived overnight for me with absolutely no warnings.
Have a think about low stomach acid as your body requires it operating at full steam in order for all nutrients in food to be fully absorbed :)
I personally think Vitamin E supplementation is useful (very hard to get from diet alone) but make sure it has mixed tocopherols,d-gamma in particular, if you wish I can PM you the brand I use and recommend.
Hello, w a systemic issue such as IBS- you may want to start w local treatments to soften the plaque such as heat (try hothands) and diclofenac gel. You can add supplements one at a time to see if you can tolerate them such as low dose cialis, pentox, etc. then add in physical therapy w traction and or VED.
From the pain you're experiencing it sounds as though you're still in the active phase. As has been suggested, low dose Cialis ( Tadalafil) and possibly Pentox if you're insides will tolerate it.
I would also suggest that you get into traction and/or VED. They will help mitigate any further curvature.
But the active phase is the time to act!..
Thanks for the responses, I will definitely investigate.
What sort of amount of time should I spend on heat treatment to have any sort of effect?
Could my GP prescribe cialis or is it something I could buy myself? I'm a bit hesitant about pentox as I've read digestive issues can be a side effect.
Paolo, the information on low stomach acid is interesting and something I've not considered before. I did briefly take a PPI for some reflux issues, but I didn't feel any particular side effects. My IBS symptoms seem to be mainly triggered by stress or anxiety and certain foods, but it is certainly worth looking into.
With the hothands you can get one inch wrap (sticks to itself but not skin) and wear around dick fir 2+ hours, prob the longer the better. There's heat lamps but I find the hot hands the easiest. Just be sure to get that brand for the hands and not feet as they get to hot and could burn. Then be sure to add VED or traction. You can get generic cialis-tadalafil-without prescription through the peptide stores online. Email me if you need a link...pretty cheap as well.
Lessor-ur message box is full. Here's the info. Blue sky peptide. Buy 2, get 1 free-tadalafil, generic liquid cialis. Also, tomorrow 50% off Black Friday sale. Safe and reliable!
Hi Unsnarl - I have just had surgery for my Peyronies in London at UCLH Westmoreland Street by a Dr Ralph - mine was carried out under the NHS but he does also have a Harley St clinic which is a few streets away.
I had mine Peyronies for at least 4 years and my only option was surgery due to the severity of the curvature - I am in Belfast so went to London for a consultation and then back again for the surgery, discharged the next day - I am back again tomorrow in London to get the catather tube removed and bandages. I was informed the operation was a success but will only really know from tomorrow onwards when the penis is unbandaged - not sure what happens after tomorrow but I am not looking forward to an hours journey on the tube and a flight back home if the penis is sore and bruised which I expect it will be.
My thread is: Operation on Penis - Peyronies Society Forums (https://www.peyroniesforum.net/index.php/topic,9194.0.html)
Quote from: Unsnarl on November 22, 2017, 04:44:32 PM
Thanks for the responses, I will definitely investigate.
My IBS symptoms seem to be mainly triggered by stress or anxiety and certain foods, but it is certainly worth looking into.
Yes, do what you can to
minimise stress and anxiety, dick problems just add to feeling crappy though for sure :(
Hi Unsnarl,
In answer to your questions as best I can:
1. Potentially. I can only suggest researching each one in turn. I'd recommend doing that anyway whenever you consider taking a supplement, particularly if planning to take in high doses.
2. I don't think so. While the relaxation of the smooth muscle of the erectile tissue is controlled by the parasympathetic nervous system, which mebeverine affects, unless you've experienced ED while taking it, I don't see how it could contribute to peyronies. It's worth bearing in mind that in most cases of Peyronies, the fibrous plaque develops on the tunica albuginea, which is a flexible fibrous tissue surrounding the smooth muscle, but is distinct from it.
3. I think you need to use a traction device for 4-6 hours a day to make it worth it. The penimaster pro has both a girdle and belt system. The belt system could be used during work. VED is apparently good for indentation and keeping blood flowing if you have ED. You don't need to take an either-or approach. Funds willing you can use both.
4. As long as you're careful, no I don't think you are making things worse.
5. The opinions you have already received - wait until you've exited the acute phase and then consider surgery - are standard across NHS practitioners. I don't think you'll gain anything from seeing someone else.
Cialis and pentox:-
Cialis - If a urologist writes to your GP recommending a prescription you can get it on the NHS. In the absence of this your GP can write you a private prescription, but it will cost you, and it's at the discretion of your GP. Most GPs associate cialis with just ED. Some men with peyronies take regular low dose to ensure good nocturnal erections as this may prevent increase in curvature during the acute phase. It's also potentially a mild anti-fibrotic. There are various online sources to buy it without a prescription. Welcome to RiverPharmacy.ca! > River Pharmacy (http://www.riverpharmacy.ca) is popular and approved by the forum.
Pentox - No medical practitioner in the UK will prescribe this to you - even privately - because the one study that showed it having significant benefits was withdrawn due to a cockup with the stats. Online sources have dried up in recent times, although you may be able to buy it Spain over the counter if you take a trip there. I think most people have formed the opinion that if it is to work, it needs to be taken in the active-acute phase.
Hope this helpful and good luck
Peety
Thanks for all the helpful information! Lots of food for thought.
It has been a bit of a boost just to feel like I can talk about it a bit more openly!
As an introductory topic the topic will be locked.
Continue the conversation on the adequate board or send me a PM to move the topic to an other board
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James