Free consultation for Peyronie's in London and advice

[SunSeeker]

Hi All,

Firstly I would like to introduce myself and say what an amazing community has been built.

I am 29 years old and have been suffering with a 30-40 degrees curvature since 2 years and have lost a bit of length.

In any case, I had been very reluctant to visit a doctor mainly because my partner did not mind the curvature (and where able to have sex) but last year this relationship was finished and want to do something about it.

I decided to visit NHS and my GP has not been helpful arguing that it is not severe for a few visits. Whenever I went to him I was scarred and ended up agreeing to everything he said leaving dissapointed every time. Eventually I was referred to NHS urologist who firstly said that I did not need surgery if I can have sex. After insisting he said I should do a Nesbit operation and wait for 7-9 monts for a surgery date.

I am now thinking that I should go private since I do not want to wait that long and secondly judging from the care I have received todate I would hate it to have to go through my GP and wait months everytime I want a follow up. Also I do not want to loose more length, I am already average and have lost length due to Peyronie's. I do not want to loose more. Also I have heard some terrible stories about Nesbit.

I recently came across a clinic in London called London Andrology Institute, where Dr Kuehhas (for whom I have read great reviews) is operating together with Dr Djakovic and Djordjevic both of which are fellows of Sava Perovic, who I read is the father of genital surgery.

I have tried to send a couple of private messages to members but for some reason I cannot. As such I decided to make my first post:

1. They seem to offer free Peyronie's consultations - has anyone had any experiences with them? Comments for Dr Kuehhas seem to be very positive in this forum. They also have a very long list of publications in their website.

2. In their website they mention a technique called the Egydio that is superior to Nesbit - any comments? They say that their doctors have been working closely with Dr Egydio who sounds like the world authority is this operation (hence the name).

3. I am a clinical biologist and have a research background - after a lot of bibliographic research it seems to me that none of the conservative treatments are really backed by solid scientific studies (double blind, placebo or systematic reviews) with the exception of Xiaflex and interferon. In the forum I have seen comments that Pentox+PDE5+VED might make things better but not definitely but the concept of increasing blood flow to the penis makes some sense so as to slow down disease progress. Xiaflex is not yet available in Europe and sounds very expensive, what about interferon? Has anyone heard about it?

4. Any advice for the consultation? What should I ask if they offer me a surgery?

5. Has anyone else had a bad experience with NHS? Are there any alternative doctors in London that I can consider?

Thank you all in advance and I am sorry for the long email, but it very important to me that I take a good decision as I am looking to restart my sexual life after some years.

Thank you...

[Jonbinspain]

Sunseeker;

If yiu enter Dr Keuhhas into the search function, you will find all our members experiences of him and his work.

[james1947]

SunSeeker

Dr. Kuehhas is a great doctor, but I think he is mainly specializing in surgeries.
On this forum, surgery is considered as last instance, if nothing else not help.
You may want to get a free opinion from him about how to proceed, but in my opinion don't jump too fast to surgery.
Regarding Interferon, if you will make a search on the forum home page you will find 50 posts in the subject.
Regarding Xiaflex, in Europe is Xiapex if I am not wrong and should be available in Europe this year.
From the forum experience with this new treatment, I would advise it before going under the knife.
Expressing my own opinion, you may chose your treatment way as you find it correct for you.
Regarding other doctors in the UK you may find one here:
https://www.peyroniesforum.net/index.php/board,37.0.html
or here
https://www.peyroniesforum.net/index.php/topic,4063.0.html

James
 

[welshwales]

Hello sunseeker,

1. If you are seeking a surgeon, then by all accounts Khuehas is the guy to see. The London Andrology Clinic do seem to have a great deal of positive feedback. But London is too far and too expensive for me to travel to personally.

2. I have only read about the Egydio procedure, probably from the same sources as yourself. As far as I am aware there are no current posters on this site who have undergone the procedure.

3. The general lack of quality research on the effects of pentox and PDE5 inhibitors (predominantly tadalafil/Cialis) is unfortunate and I had my own doubts about their efficiency when I first read about them here on the forums. But the big pharma US and EU drugs companies obviously don't see Peyronie's Disease as much of a money spinner, or we'd have seen the necessary research groups undertake the trials years ago. All I can say is that the theory behind Pentox makes sense, given that it is often prescribed for other similar fibrotic conditions. As for daily low-dose Cialis, if it doesn't treat the condition itself it certainly treats the symptoms, and it aids in general penile health by promoting healthy blood flow. VED is another ballgame entirely when it comes to research as I'm sure you can understand, given the amount of variables from one user to the next - it would be difficult to gain any kind of precise statistical accuracy. That being said, like the use of tadalafil, using a VED to promote healthy blood flow into the penis is only going to be beneficial. But the use of a VED should come with a great big warning label - moderate and responsible use is of the utmost importance. If misused, a VED can cause more harm than good.
Regarding Xiaflex/Collagenase clostridium histolyticum, it is currently available on the NHS for Dupuytren's Contracture, and certain urologists are willing to use it to treat Peyronie's Disease once all the legal blah is through the EU bodies. I am currently on an open ended waiting list for the treatment.

4. As for the consultation, it very much depends on who you see. If you get an appt with the LAC then you will be in the best hands available in the UK, and they know their stuff. They will of course promote their own surgery foremost, so bear that in mind. If you wish to pursue a non-surgical route then make sure you make that clear. They will likely tell you that Peyronie's cannot be cured without surgery, but you only have to read deeper on this site to see that many men resolve their problems without resorting to surgery.

5. If you see an NHS uro it can be very hit-and-miss whether or not they are knowledgeable about the disease. Many urologists know VERY little about the condition. Although saying that, most urologists seem content advise a prescription for the tadalafil (2.5mg/5mg/10mg depending on certain variables such as venous leakage etc.) and can do so in a letter to your GP. It is usually down to your GP surgery to fund it, which can be problematic. Although I'm told most English surgeries are willing to foot the cost, I had to argue my case here in Wales and get a second opinion from an ED specialist. In any case, if your GP surgery is not willing to foot the bill you are quite entitled to request a private prescription from your GP - I've never known anyone to be turned down when asking for a private script.
Pentox is a different matter entirely, most men are refused a prescription for it, and if your fibrous tissue has calcified then arguably it may well be too late for it to do much good. Most men in the UK use a Canadian online pharmacy to get a hold of the stuff, and of course it isn't strictly legal. If you do choose to do that, make sure it is OK for you to take it (if you suffer from any digestive disorders such as stomach ulcers, you might do well to avoid pentox).

I'm in my early thirties, and midway during the last four years my condition went from mild with no ED to severe with equally severe ED quite abruptly. I wish I had sought treatment earlier, and I very much urge any man to do so at the earliest convenience. I personally take daily low-dose Cialis, and use a VED while waiting for Xiaflex treatment. I lost 2 inches and a considerable amount of girth before I began treatment, and have not experienced any further atrophy since beginning treatment (even though I have developed further fibrotic lumps). So anything you can do to arrest the progression of this progressive condition is well worth it.

[james1947]

I am with welshwales except one point:

Pentox...if your fibrous tissue has calcified then arguably it may well be too late for it to do much good.

My treatment of calcified plaques was VED, Pentox, low dose Cialis, they become soft during this treatment.
Also 3 hourglasses disappeared.

James

[SunSeeker]

Hi All,

Thank you so much for your comments. I am quite convinced that I will now try VED+cialis and ask the London Andrology Insitute guys about Pentox and if I am a candidate for it.

Welshwales I also tried to send you a PM but was not able to do so for some reason. I will try again.

I have now booked my consultation for this Friday. They told me that they are a new clinic recently established in London and work with Dr Kuehhas and other Peyronie's European specialists (Dr Djakovic and Dr Djordjevic who were both students of Sava Perovic). Even their patient co-ordinator seemed to be quite knowledgeable about the condition and we discussed extensively the difficulties in treating Peyronie's and natural progression of disease - which seems to make it particularly hard to scientifically establish which treatment works or not. It is quite annoying that for such a subject that affects a significant amount of men, there is no good research taking place. I think it would be great if an advocacy group would fund some of the clinical trials so as to see what works and also pressure the pharmaceutical companies to reduce the cost of treatments such as Xiaflex, $28,000 for a full treatment course just seems ridiculous.

I will update the forum regarding my consultation and what they say.

Once again, thakn you for your replies.
   

[welshwales]

I haven't received a pm. There might be a minimum amount of posts required before you can do so, I'm not sure, but I've known other forums to have a minimum of five posts. I'm sure a mod can clear that up.

[skunkworks]

Sunseeker - The thing about surgery vs less invasive treatments is that surgery is a irreversible with possibility of quite a negative outcome, while the other, the only real negative outcome from trying the oral treatments here is that they might not work for you.

Loss of length, post operative infections, hell even just the surgery not going well or surgeon error could mean you lose a lot of length or even loss of function completely. This is why the forum (who have as a group read and discussed in detail most every study on peyronie's in existence) see surgery as a last resort.

You say that none of the conservative treatments are really backed by solid scientific studies, but that does not mean they do not work, just that there is not a solid body of evidence proving that they do. Moreover, do you know the success/failure rates for the surgical procedures? Do you know the success/failure rates for the specific surgeon who might be doing your surgery?

I also come from a background in biology, and with a disease that gets so little by way of $$$ or attention, you have to take the evidence that exists and work from there. Pentox has a few studies behind it, coq10 has a couple, alc just one I think. It may not be gold standard evidence, but it is what we have and one needs to use the best evidence available to make decisions. Also you have to hold surgery to the same standard, so how does the evidence for surgical intervention stack up against it?

Traction has quite a few studies while the VED has a couple , but due to the nature of both treatments placebo control is impossible, as is double blind. That said, the same is true of xiaflex studies, there is no true placebo control as simply perforating a plaque is a treatment in itself. So xiaflex studies are in fact comparing xiaflex+plaque perforation to plaque perforation alone.

When you have to make a decision and can't wait around for double blind RCTs which may never happen, the evidence available is what you need to go on. Same as nutrition in some ways, nutritional studies will always be hugely flawed simply due to how they have to be run. You won't get double blind RCT level evidence, so decisions have to be made with what evidence is available.

[SunSeeker]

Skunkworks - I completely agree with you. My only concern is that there have been some double blind RCTs for some of these treatment that have shown that they are not effective.

In any case, I did have the consultation with London Andrology Institute yesterday. I saw Dr Kuehhas and Dr Djakovic. I have to say that I was quite pleased with their perspective. Their overall approach with conservative treatment modalities was the following:

Scientific validity X Side Effects X Cost X patient's preference

Based on that they have created a very nice ranking table of the different treatments. We went through all these options and they suggested that I start with Pentox+VED+Cialis and follow up in 3 months. In the meantime they have asked me to log data (degree of curvature, erectile function and subjective plaque size) on a bi-weekly basis so as to track the progress and evaluate the treatment.

We also discussed extensively surgery - they took me through the different operating techniques (Nesbit and Egydio, which is incision and grafting) and the advantages and disadvantages. Overall, their professional opinion is that there is no reason to offer Nesbit if pre-operative erectile function is good as incision and grafting is superior.

In any case, thank you all for your support. I will keep the forum updated on the progress in case other patients are interested in them.

Regads.

[skunkworks]

Could you post the double blinds that gave you concern?

Quite often surgeons only see surgical solutions, but it sounds like the guys you've seen are taking a good approach.

Random thought: I do always wonder why doctors see the VED as a medical device and yet traction is not seen in the same light, despite having more evidence behind it.  

[james1947]

This topic has reached the end as an introductory topic.
Please discuss specific subjects on the adequate boards.

Regarding VED vs Traction, in my opinion the doctors support more the VED because it is increasing the blood flow into the penis that is healthy. Traction in many doctors eye is a penis enlargement device.

James