|November 2, 2004 at 2:17 pm|
|November 2, 2004 at 2:17 pm|
Unfortunately, Peyronie’s Disease (PD) can bring with it a loss of penile length and or girth.
It may also bring other conditions, commonly known as “hour glass deformity” and “buckling”. While all these conditions are related, the latter two warrant their own discussion topic thread.
Every man is affected differently; some are affected minimally while others can experience a substantial loss. As a man experiences this physical loss, he often experiences a pyschological loss as well. Make no mistake, this can be profoundly traumatic for a man and by extension, to his wife or partner as well.
What can be done about it, what options are available (including surgery, injections and VED), how to cope, and anything else related to the subject — please post it here in this topic thread.
Please keep in mind that those who offer advice, help, or share their experiences and opinions are, with rare exception, laymen and not doctors.
|November 3, 2004 at 9:43 am|
The following post is reproduced from the BTC Peyronie’s Forum. I was responding to a man who sadly reported a profound change in the appearance of his flaccid penis. I have added a few additional thoughts as well:
Your comments to me about the shrinkage you have experienced and the apparent reduction in blood supply making your flaccid penis smaller is something that I and others have experienced. Whether it is due to PD or something else remains unclear. But in any event it is extremely disconcerting; and can leave a man feeling a bit like a eunuch.
Unfortunately many doctors dismiss these complaints as not being signifcant if the man is still able to have intercourse. Of course, as men with this condition, we know that it’s not as simple as these doctors would have us — and themselves — believe. A penis is an important part of a man’s anatomy and self-esteem, just as a breast is important to a woman. A deformity or vast reduction in size or appearance to either would be distressing to either sex.
Given the number of women who undergo breast augmentation (implants) it is clear that the size and shape of a woman’s breast is very important to her feeling of well being and self-esteem; its biological function of providing breast milk often ranks second to size and appearance considerations. Accordingly, why should men be treated any differently, as regards their concerns over the profound changes in their penis and associated self image?
|November 8, 2004 at 7:29 pm|
Ok , well if this is a place where one can vent some or just talk a bit about how this is impacting them emotionally I will. If it is not meant for that I apologize in advance.
|November 9, 2004 at 2:10 pm|
>I live in California somewhat close to So Cal – does anyone know of a specialist in that area ? Thanks for listening.<
You are definitely in the right place to seek advice and solace. Welcome!
First, I would personally recommend a very fine doctor — an expert in PD — in Burbank, CA. His name is Dr. Martin Gelbard. He even has his own very informative website at: http://www.peyronies.org . Do check it out.
As to the other issues, I will respond in the next couple days, and in the meantime I am sure that others will pipe in as well.
Best wishes to you, and your wife. We have a section just for Women, by the way.
|November 9, 2004 at 8:36 pm|
Thanks for the welcome and the response. I will check out the doctor you mentioned. Burbank is several hours away from where I live but it is a possibility. I am off tomorrow to the hospital for a biopsy of my bladder for some other issues I am dealing with. When it rains it pours I guess
|November 10, 2004 at 6:17 am|
As a man who has suffered with PD for the last four years I can understand every word you wrote. The mental aspect of this disease is so difficult to deal with just because of the nature of the disease. Believe me, you and your wife are not alone in your frustration.
I have spent many hours over the last four years researching PD, and I find that this has been a great help from a mental standpoint. Of course, I am also under the care for a good uroligest to fight my disease.
As a member of this forum I also welcome you, and offer you any help or support possible as you fight your disease.
|November 11, 2004 at 8:42 pm|
I want to thank you for the warm welcome and your kind words. This is a tough one for sure. The nature of it makes it difficult to discuss with friends etc – it’s not something you want to shout from the rooftops. I think what I want most right now is to be able to be intimate with my wife. The pain is such that I don’t even go there so there has been no contact for almost 2 months now. It seems from what I read that men are able to have sex with this disease but so far I cannot. Does the pain only last for the first few months ? or is it always there and you just have to deal with it ? Just one of many questions I have. Even if I do get an erection the “quality” of it is not what is should be so maybe I am experiening several symptoms and it will be a while before I settle in or something.
|November 15, 2004 at 7:56 am|
One thing for sure about PD is that it is not a “one size fits all” disease. I never had any pain until just recently, and I’ve had it for four years. Some get pain early and it goes away, in my case it’s the other way. This is one of the problems with PD, as it seems to affect each of us differently.
The mental aspect of PD can also cause problems with sexual activity, espcially the ability to achieve a functional erection. There have been many discussions concerning those with PD who also suffer from ED, and whether it’s a mental or physical problem. The bottom line appears to be that it can be one or the other, or both.
It is also difficult to deal with a disease that so few of the general population understand, or know about. Tell someone you have PD and in most cases you will get a blank look. Explain it to them and many will find it humorous. Believe me, those of us with PD find no humor it.
I think the best way to fight it is with the help and care of a good PD uro, and the help and understanding of your wife or partner. Also, do as much research as you can on PD to understand the condition and what may help your own condition. An understanding and supportative wife can go a long way in helping to restore some level of sexual relations.
I don’t mind discussion my own condition, so feel free to ask me any questions, and I’ll be glad to answer anything within the limits of my knowledge concerning PD. However, make sure you start to actively fight your PD now with the help of a good uro that understands the disease and the latest developments in PD research.
|November 15, 2004 at 7:49 pm|
well one thing I have plenty of is questions. I am hoping that the uro I am seeing now will turn out to be a good resource. He is just not a real warm and fuzzy kind of guy. I need to find out how much he knows about PD and how many men he has treated. When he diagnosed it he said he would answer any questions I had but at the time I had no idea what to ask – now I feel a bit more prepared to ask. I go in friday to get the results from my bladder biopsy so I will use that time to ask etc. I can’t thank you enough right now though – just to have someone willing to talk about this and share your own experience is huge – so thanks again. You are right about how guys react – I have told 4 good friends of mine and so far no one has ever heard of it and they do make jokes about it – just because they don’t know what else to say I suppose.
|November 16, 2004 at 8:44 am|
Let me give you a little background on myself so you will have an idea of who your are talking to, as I found this helpful when I first started posting several years ago.
Yes, I’m married, and to the same lady for 37 years. I’m 61, and developed PD at age 57. We have two grown and married sons, and five grandchildren. We live in coastal Virginia near the Chesapeake Bay. I’m the military sales manager for a Chicago based company, and as such travel a great deal to all 50 states.
PD came on me out the blue with a slight indent at the base of the glans with a bend to the right at this point. I knew exactly what it was as a friend of mine had confided in me about a year before, that he had developed PD, and explained it to me.
I read all I could on the internet from medical sites, and the course of action most stated was to do nothing for about a year, as the disease may resolve itself. I did start on Vit E. as that was recommended, but I did wait a year before finally going to see a uro. That was a mistake, and I think that advice is harmful, as I think aggressive treatment should be started at once.
Durning that year the plaque spread from the right side to the left side, and then started to move down the shaft causing an upward bend. With no improvement I went to a large and well respected urology group in Richmond (uro.com) and was put on 800IU of vit. E for three months. Seeing no improvement I was then put on Potaba, 24 caps a day, which my system couldn’t handle. I was then turned over to one of their ED and PD uros that specilizes in PD treatment. After some consideration I decided to go with Verapamil injections, and to date have had 12 treatments, but no improvement. In fact the condition has reached a point where almost the entire top of the shaft is now plaque. Did the injections create more of a problem than they helped? I don’t know for sure but I fear that they did. I know they did soften the plaque, but it is an invasive proceedure, and as such, may have caused additional trauma to the tunica.
Durning all of this time I have had very little pain, no loss of desire, and good erections. My wife and I can still have relations even though I have about a 45 degree upward bend (maybe a little more) loss of 2″ in length, and an hourglass constriction. I must add that for my part sex is far less satisfiying, but still possible. For the last several months I have had increased pain at the base of the glans when erect. Not a put off to sex, but an indicator that the disease is still not stable, which I believe is unusual for such a long time.
As for my wife, at this stage in our life she can take it or leave it, but says she really see very little difference. This may be an indicator of just how pathetic I was as a lover before the onset of PD (just a little humor, hope you don’t mind).
Anyway, that’s where I’m am now, as I consider how next to fight my PD. One of the best PD researchers and surgeons in the country, Dr. Gerald Jordan at Devine Tidewater Hospital in Norfolk is close, and I may see him just to get a second opinion as to the current state of my condition.
My emotions with PD have covered the board. I know that I am fortunate (if you can say that anyone is fornutate to develop PD) to have developed this disease later in life. I hurt for the many young men who have PD, as I know the effect it can have on marrages. However, regardless of age, PD robs you of your manhood, and no man can accept that without emotional scars. A helpful and supportive wife is one of the best tonics available to us as we fight our problem.
You touched on an area of great importance, that is being under the care of a uro who is on the cutting edge of PD treatment and even possibly research. A good bedside manner is nice, but not necessary. Cutting edge knowledge is! Even then the best in the area of PD don’t always agree. Dr. Laurence Levine of Rush Presbertian in Chicago is the moving force behind Verapamil injections, as is Dr. Mulhall in New York. Dr. Tom Lue at the Uni. of CA is against them, and so on. It’s up to each of us to do our own research, find a doctor that we feel fits, and them use him/her as a tool in our treatment. Take a look at the doctors on this web site. If you don’t feel comfortable with your present uro you may find one listed that is close by, if not, it’s worth the travel to see one that is on top of this disease.
Well I could go on and on, but enough for now. As I said I’ll be glad to answer any other questions that my knowledge permits. I won’t recommend a treatment, as only your doctor should do that. However, I’ll be glad to give you all the background on treatments, possible causes, or anything else relating to PD that I have learned over the years, with the admonishment that these are my thoughts and may not be shared by others.
My Very Best To You,
|November 16, 2004 at 7:29 pm|
Well you have me beat on the number of grandkids – I have two. Aren’t they the best thing ??!! I may only be 43 but my wife and I have a grown son (25) married and the father of the two grandkids, then a daughter ( 20 ) who was just engaged this week. I started early in life – I don’t reccomend it but it worked out for us. So maybe since my sex life started so early that is why it seems to be ending early !!
I do appreciate the advice about not waiting – I have a feeling my uro does not want to do anything for 6 months – other than the Vit E and Potaba – 6 tablets a day which my body is starting not to like as well. I am considering the guy in Burbank or maybe San Francisco since I am kind of right inbetween LA and the bay area. I need my uro to be able to differenciate between the things I have going on at the same time, prostate issues, bladder issues – when it rains it pours.
|November 17, 2004 at 10:49 am|
Just a quick follow up.
“Kid”, the moderator of this forum is someone I know and talk to via Email off forum from time to time. He is extreamly knowledgable on matters relating to PD, and I hold him in the highest regard. You can take anything he tells you to the bank. I know he recommended Dr. Gelbard, and from what I hear he is really a fine doctor, and an expert on PD.
Another doctor north of you is Dr. Tom Lue at the Univ. of CA San Francisco. Dr. Lue is one of the very best in PD treatment and research. I believe Kid has also seen Dr. Lue, and can give you more in depth info on him. I think either would be a good and wise choice for you even though it’s a bit of haul.
I know your beautiful area well. I try to stay in Santa Barbara whenever possible. I had a project at Port Hueneme last year, and now have one going at Vandenberg AFB. I usually fly into LAX, pick up a rental, and drive up to Lompoc for my Vandenberg visits. I like to take the Pacific Highway from Santa Monica up to Oxnard because it pretty, and avoids the heavy 101 traffic.
If you would like to discuss anything in private, that is off forum, please feel free to do so. My Email address is firstname.lastname@example.org
|April 9, 2005 at 3:07 am|
I was re-reading your old post and something caught my eye which I thought I should bring to your attention if you are not already aware of it.
It is not uncommon for men, especially at our age, to experience both Peyronie’s Disease and pain and discomfort associated with the Prostate and or something now known as Chronic Pelvic Pain Syndrome (CPPS). Typical male complaints associated with one or both of these prostate area conditions include some or all: pain running down the center of your penis, pain after ejaculation, pain with erection and or sexual stimulation, pain with urination, pain while sitting and even pain while defecating. Pain may be worse when under stress. For some the pain may be excruciating and debilitating
In my experience, what had to be done — and was not for over 3 years — was to consider the possibility that PD and Chronic Pelvic Pain, and or Prostatitis (bacterial) could all be overlayed. This was in fact what I was experiencing.
Long story short, Dr. Lue referred me to Dr. Jerome Weiss up in San Francisco. Dr. Weiss’ practice is now solely dedicated to treatment of chronic pelvic pain. Similarly, Stanford University is aggressively addressing these debilitating conditions through the clinics they hold and a specific rehabilitation program they have developed (David Wise, PhD is a co-author of a book entitled “A Headache in the Pelvis”) You can read more on this subject at the Prostatitis Foundation website: http://www.prostatitis.org, or, at http://www.chronicprostatitis.com (Male Chronic Pelvic Pain Network). Both sites are excellent sources which can help to address both penile pain and pelvic region pain that is not coming from Peyronie’s Disease. Also, Dr. Weiss published an article in the Journal of Urology that may be helpful to you and others: http://www.jmweissmd.com/article.htm
I hope that this info is useful to you and to other men who are suffering badly from these pelvic region based afflictions.
The post above is written from the perspective of one patient talking to another patient. It is not intended to be construed as medical advice; rather it is for informational purposes only. If you are experiencing any of the painful conditions mentioned above, you may wish to consult a physician who specializes in the treatment of these conditions, such as a urologist.
|April 12, 2005 at 5:48 am|
David, I was diagnosed last year with PD. As a result of reading this forum, I made an appointment with Dr. Lue in SF. I saw him several weeks ago for the first time. FYI I had to fly from Portland to get there, so it was not a simple undertaking. I was very impressed with the doctor and even if mine progresses to a worse point than where it is now, I will know I am in good hands with him. I must say that in my case the comfort I now feel just knowing I am in good hands is worth A LOT.
My pain is not too bad, but there are times when penetration is uncomfortable…having been married for almost 40 years we have found over the years “other ways” to find satisfaction with sex. So if a partner is agreeable to working on it there may still be answers. Hope this helps.
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