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Author Topic: Women Speak Out about Peyronie's Disease  (Read 156900 times)

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qweeny

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Re: Women Speak Out about Peyronie's Disease
« Reply #300 on: September 22, 2011, 10:46:57 AM »

Wow! Really, how cool is that!  ;D I guess you've been through everything we are going through now. It's fantastic to see how positive you are and you must be over the moon with your little one! Really makes me feel good about the future.

Would you mind if I PM you sometime with regard to some of the stuff that's coming up with peyronies, the relationship and trying to conceive?

queeny
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Skjaldborg

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Re: Women Speak Out about Peyronie's Disease
« Reply #301 on: September 22, 2011, 01:50:52 PM »

Qweeny,

Feel free to PM anytime.

Best,

Skjald
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qweeny

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Re: Women Speak Out about Peyronie's Disease
« Reply #302 on: November 14, 2011, 07:48:50 AM »

Hi everyone! I though a bit of an update would be nice. Things seem to be getting better, my partner has continued with the oral treatments (supplements and pentox) and it does seem to be helping. He has noticed a reduction in the curve, has really hard erections, the 'lump' seems to have gotten smaller and sex feels the same as it used to!

There is a slight downside that with all that extra blood flow, my partner says it actually hurts more at the moment when he has an erection. He has been taking the meds for around 2 months now.

So far we are keeping sexual activity for around my fertile time as we are trying to conceive, which means we generally have sex twice around that time and once the week before.

We are both feeling much more positive and can't wait until the pain issue resolves; that at the moment is the biggest issue for us.

Hope this brings hope to all those on pentox and the other supplements- we think they DO work! :) xx
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mike67

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Re: Women Speak Out about Peyronie's Disease
« Reply #303 on: November 14, 2011, 08:42:23 AM »

Thanks for this encouraging post Qweeny. I am sure everyone here is happy for you and partner with the progress being shown to his condition. I am still waiting for the suppliments to show they are working and probably will have to go for V I or surgery. But my priorities are different than yours as a couple. I turn 69 today so life is a little different at this age. I hope things continue on an uphill slant for you and yours.
Mike
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Mikey

qweeny

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Re: Women Speak Out about Peyronie's Disease
« Reply #304 on: November 14, 2011, 10:17:23 AM »

Thanks Mike! a very Happy Birthday to you!!! All the best to you too, whichever route you decide to go for.  :) xx
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Skjaldborg

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Re: Women Speak Out about Peyronie's Disease
« Reply #305 on: November 14, 2011, 12:41:52 PM »

my partner says it actually hurts more at the moment when he has an erection.

I experienced this symptom as well. This went away completely for me by the 3 month mark, probably due to medication. Best of luck to you guys!

Skjaldborg
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qweeny

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Re: Women Speak Out about Peyronie's Disease
« Reply #306 on: November 15, 2011, 05:14:46 AM »

Skajald- thank you! We are thinking it's a part of the process that will pass, hopefully it will be as speedy as it was for you! Thanks again, your positive story has been inspirational xx
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HFB

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Re: Women Speak Out about Peyronie's Disease
« Reply #307 on: February 20, 2017, 07:18:38 PM »


I know you are far from this but 10/08 I had a successful implant and now have a normal sex life. Surgery is always the last option.
IMHO get him on Old Mans VED exercise as soon as possible. This should help keep his penis healthy and keep size loss to a minimum.
With his sex drive down he should have his testosterone checked. Not just total but all the most important testosterone is the bioavailable, disregard the total T the bio should be at least 70% of the upper range of the lab.
I know this may be too much information all at once. Just encourage him to have sex as much as possible, sex is not defined as penis in vagina there are many ways to have sex, use your largest sex organ The Brain.
You are a long way from where I started. The other important advice I can give you is not to try shots in the penis for Erectile Dysfunction, that is what caused my corporal fibrosis.
Good Luck, there are many here that are willing to help. Peyronies is different for all of us. FYI I am 66 now.
Jackp

Is increasing size or girth a possibility and to what extent with an implant or is it only to get rid of the bend and make it stable for intercourse?
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LWillisjr

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Re: Women Speak Out about Peyronie's Disease
« Reply #308 on: February 24, 2017, 06:07:07 PM »

jackP hasn't been on the forum for awhile. There are others though that have had implant surgery. I believe in some cases some length and girth can be regained. You might check in the 'surgeries' section for some of these responses.
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james1947

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Re: Women Speak Out about Peyronie's Disease
« Reply #309 on: February 25, 2017, 06:58:03 AM »

HFB

You may want to checkout:
FT
FT is a serious website dedicated specially to Erectile Dysfunction including thousands posts regarding implants

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

KikiO

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Re: Women Speak Out about Peyronie's Disease
« Reply #310 on: February 10, 2018, 06:05:04 PM »

My husband of 10 years just had his first injections yesterday. He is in pain and feeling so down. I urged him to join this group, but he didn't want to admit that he needs help. I miss his old 'self' too, but how can I help him know or believe he is loved just the way he is? If he doesn't believe it himself... Any thoughts on what you, if you're a man, wish your significant other had said while you were going through treatment? Whats the best support a wife can offer? Thanks for any advice....
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Stabler

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Re: Women Speak Out about Peyronie's Disease
« Reply #311 on: February 10, 2018, 06:22:20 PM »

Hello Kikio,

Welcome to the forum, has your husband done any other treatments? When you say that he cant admit he needs help can you explain that more... He is getting the injections (Xiaflex I assume) so it sounds like medically he knows he needs treatment and if he is getting injections then he must be seeing a urologist that is at least knowledgeable about Peyronies. It will be good for you to hear from the men in this forum to help you understand what kind of support your husband may need or how to help him understand you are there for him.

It is good that you have told him about the forum, there is a great support system here for him if he becomes interested. Maybe if he knows that he can just browse the forum without having to post that might help him.

If you have any questions please feel free to contact me

Stabler67
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Moderator since 2015- Missouri- I work in the medical field and have strong knowledge of insurance and how to obtain coverage for medication and other treatments. Being a woman I do not have Peyronies but you can ask me anything. I am happy to help.

Discofeet

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Re: Women Speak Out about Peyronie's Disease
« Reply #312 on: July 22, 2020, 03:49:52 AM »

Hello everyone, thank you for being on this forum, I have spent the past 3 months reading through and trying to get through this situation. My wonderful boyfriend has peyronies, we met in December, it was love at first sight. He started with the acute pain in March and since then We have seen 2 urologists (1specialist) and are following their advice.

What we have found to help the most is daily massage of the penis with pure vitamin e oil.

I am finding it so hard to cope with the lack of intimacy.  He feels unsexy, and I try to do everything I can to boost his confidence(he is the sexiest man alive in my eyes and the condition doesn’t affect how I feel about him).

I want to support him 100% but I feel so undesired and just sad. He is able to have an erection with pain. Sorry if tmi but He doesn’t like going down on me, so he usually touches me to get me off - about once a week.

His social media habits make me feel so insecure, for example in the last 2days he has followed 4 hot girls on Instagram. I don’t get it. He says he doesn’t want to masterbate and feels unsexy, so why follow them? I spoke to him about it; He unfollowed a bunch of the ones I voiced my concern about, (ie huge titted 18yr olds :|) and then a few weeks later followed them again - one of them was an old date.



We have a great relationship otherwise and I would do anything for him to make his life easier  (I do all the housework, cooking, daily massages etc). It devastates me when I see another hot girl that he’s added. Maybe I am overreacting and if we weren’t affected by the peyronies I wouldn’t care who he was looking at, but knowing he is lusting after other women when he isnt doing it to me or have a normal intimate real life relationship makes me feel so depressed. I posted here instead of the women’s forum because I’d love male input.

Love and healing to you all xx
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Hawk

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Re: Women Speak Out about Peyronie's Disease
« Reply #313 on: July 22, 2020, 12:47:23 PM »

Peyronies Disease or no Peyronies Disease I think you have legitimate concerns.  I can't help but think he would feel the same if you did the same with photos of guys with six-pack abs and bulging swimwear.

I have to be truthful here.  I can also not relate to him not liking to perform oral sex.  If he can please and drive the woman he loves wild then why wouldn't he?  The only way I see these behaviors as being Peyronies Disease related is if intimacy with you makes him feel pressure for intercourse which he cannot perform and flirtation on the internet makes him feel safe because nothing is expected.

I think you need to consider how sex was prior to Peyronies Disease for some of these answers and maybe have a long, direct, sit-down talk addressing all of these issues for the rest of the answers.  If he does not want to sit down and communicate then you have an additional problem.

Experimenting to see what works and what does not with no expectations or demands can add more spice to a relationship after Peyronies Disease than existed prior to Peyronies Disease.

How does he feel about joining the forum and seeking help and education here?


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projectpd

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Re: Women Speak Out about Peyronie's Disease
« Reply #314 on: July 22, 2020, 07:25:58 PM »

wow, what a possibly complex situation. Hawk's reply seems very insightful: I can only add not every man likes oral sex in any situation , e.g.  I didn't like it with my extremely beautiful gf because she was extremely hairy (otherwise I would have ).
Can you tell if he still desires you (e.g. thinks you're beautiful, wants to draw/paint you, massage you, gets jealous of other men's attention, has fantasies about you, etc)  , or if he's gone off for some reason unrelated to Peyronies.
"What we have found to help the most is daily massage of the penis with pure vitamin e oil." Massage is helpful, but otherwise this statement seems a bit naive, and really just scratching the surface- there is far more to learn. .  "vitamin e" is a joke (unless you look up the latest research on it which is actually very interesting)
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Hawk

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Re: Women Speak Out about Peyronie's Disease
« Reply #315 on: July 22, 2020, 09:16:45 PM »

Not to sidetrack the topic but a person who does not immerse themselves in the pleasure of performing oral sex cannot be good at it.  Not sure how you cannot love something that gives your partner pleasure.  Not sure what my line would be but it is way past there.
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Discofeet

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Re: Women Speak Out about Peyronie's Disease
« Reply #316 on: July 23, 2020, 03:59:37 AM »

Thank you Hawk and Projectpd for your thoughtful replies. 

Last night he was very upset and said he is feeling depressed, I suggested therapy & he dismissed it. I suggested joining the forum he said no. None of his friends understand, Apart from the urologist I’m the only person he can talk to about it. I let him vent and try to reassure him. I think he’s really scared, it’s heartbreaking I can’t imagine how he must feel.

Projectpd, I meant the massage helps with his pain management. He is taking supplements, viagra, lots of exercise, no alcohol& a low inflammation diet. We have been told by the urologists (UK) that his only options are to manage the pain and use the pump towards the end of the acute phase. That’s it - we just see what he’s left with at the end of the acute phase.   
We both read the forum but most advice seems anecdotal. Do you think we should add something else to aid the healing? Do you have an opinion on heat therapy lamps?


Unfortunately I think modern relationships are different. There is so much choice on social media and women eager to post revealing photos it’s like a buffet. It’s sad that this is the norm but my friends have said that’s what guys do - have a wank bank on their phone of screenshotted women. I am going to continue to support him and just let it go, I don’t want to be ‘that’ kind of gf, monitoring him. I trust and love him, if he cheats I’m gone, but there’s no evidence of that. Maybe looking makes him feels better.

I have made it clear I’m not going anywhere and there is zero pressure from me for sex. My worry is that he’s actively trying not to get aroused by me (erections are painful) and it is changing his view of me. Any sexual intimacy is on his terms atm. I think I’ll do a night where I give him a full body massage with candles and try to be romantic. Arrgh relationships are hard! Thanks again for your insight, it’s actually helping me just to talk to people who understand. He would benefit so much from joining the forum. 
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Paolo

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Re: Women Speak Out about Peyronie's Disease
« Reply #317 on: July 23, 2020, 05:23:11 AM »

@discofeet.
I have had good experience with Acetyl L-Carnitine (ALC) for pain management during my acute phase, 1 gram x 2 day. If he tries it get it with Alpha Lipoic Acid (ALA) included. Many people who don't eat meat are deficient of ALA.
Pain should ease in about 1 week, if you try it please update thread.

DMSO with Aloe Vera gel can also help pain relief, apply after washing or shower. Pain is extremely debilitating, physically and mentally.

Good luck
Paul.
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Discofeet

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Re: Women Speak Out about Peyronie's Disease
« Reply #318 on: July 23, 2020, 10:56:42 AM »

Thanks for your advice Paul, we’ll do some research and try those. Anything is worth a shot. I’ll let you know how we get on with it.

All the best



@discofeet.
I have had good experience with Acetyl L-Carnitine (ALC) for pain management during my acute phase, 1 gram x 2 day. If he tries it get it with Alpha Lipoic Acid (ALA) included. Many people who don't eat meat are deficient of ALA.
Pain should ease in about 1 week, if you try it please update thread.

DMSO with Aloe Vera gel can also help pain relief, apply after washing or shower. Pain is extremely debilitating, physically and mentally.

Good luck
Paul.
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GF of 30 yr old bf with peyronies. Acute phase began March 2020.

Hawk

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Re: Women Speak Out about Peyronie's Disease
« Reply #319 on: July 23, 2020, 11:42:50 AM »

I too would recommend the ALC.  There are studies that suggest it helps and it clearly helped my pain at least because I started and stopped it 3 times to made sure that was what was helping.  Hopefully, you have read the survival guide.  If not read it together, probably twice.  It is a lot to absorb with casual reading.  Here is the link https://www.peyroniesforum.net/index.php/topic,3180.0.html

Be a little cautious with the candles etc.  It might be perfect for him but many men think "Oh I see, she really wants sex and has it all planned out and I can't do that."  They then feel like they didn't satisfy your sexual need, feel like failures, get angry and there is a blow-up.   There is a saying that is generally true but of course with exceptions.  Women give sex with the goal of intimacy, men give intimacy with the goal of sex.  To a man, all intimacy ends in intercourse or what is the point and that is what he is apt to read into the candles, message, etc.  Now if he is up for sex, no problem.  If you both know in advance that sex is not the end goal, no problem, but communicate to avoid misunderstanding.
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Hawk - Updated 10/27/18 - Peyronies Society Forums

projectpd

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Re: Women Speak Out about Peyronie's Disease
« Reply #320 on: July 23, 2020, 04:10:14 PM »

Hi Discofeet, sorry, have only just got back to the forum.  Thank you for your kind words. I usually post on only scientific/technical matters, not personal/emotional, because that's my educational and professional background.  But it's appreciated to be able to post on that sort of thing.

So, yes, I am sure you should get a heat lamp.  In no particular order, this is because of about 3 reasons,

Firstly, the (albeit rare and small) studies on hyperthermia, which did not use a heat lamp to generate heat, but, they still did use heat and that was the assumption on what was the active agent.  Although there was weird stuff in one about energy dosage that I thought was bizarre: Heat is heat.

I posted about this, as you may have read from my previous posts. I was surprised the lamp I got seemed amazingly good value and is especially excellent at being able to position the light beam at just exactly wherever you want it. Much better than any normal lamp I ever had. I would even highly recommend it just to use for a normal reading lamp.

Secondly, using heat helps with both stretching and VED, this effect is really obvious, am sure everyone agrees.

Thirdly, heat usually helps with topical (=through the skin) substance absorption. (increases skin permeability)

I have been using fairly intense heat for some time since then and not found any noticeable adverse effects.

Rice socks or heat pads are not the same, because they use simply contact with hot materials to conduct the heat through the skin, this seems to me not as good as infra red light which irradiates it directly through the skin, with a lower capacity for blood vessels to transport the heat away.

Having said this, I keep meaning to make a little rig to allow tiny infra red emitters to be worn over the penis and shining on it , as this would be more convenient, and save electricity bills. Regarding the latter, I did get a lamp that came with a 125 W  infrared bulb.  I had read a recommendation here, to get a 250W bulb, but the electricity bill would be more, even if the bulb is compatible  with the lamp.  With a 125W bulb, you probably have to be more careful as it needs to be about only 6 inches from the penis. 



yes it seems hard to understand about his behaviour, if you mean that has changed directly as a result of the Peyronies Disease.  After all he'd have exactly the same problem with someone else, or by the sound of it even more so, and same problem with masturbating. It is true that painful erections are unpleasant, I remember the pain outweighs the pleasure! I didn't look into enough possibilities as much as I could have to fight the pain and inflammation. Antinflammatories seems to be the most obvious thing (e.g. dexamethasone, diclofenac, and many substances such as discussed in threads such as DMSO + X).  Options that seem likely to be useful to deliver them directly include DMSO, iontophoresis, liposomes, and yes massaging with oil and heat.  I did use serrapeptase, orally, which seemed to work a bit.

since you think massage helps, you may be interested I bought a 10,000Hz "percussion massager" from Aliexpress. I have no evidence whatsoever that this is either safe or effective - maybe it's dangerous! but I like it!

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Discofeet

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Re: Women Speak Out about Peyronie's Disease
« Reply #321 on: July 28, 2020, 07:47:15 AM »

Sorry for the late reply guys. You see I didn’t even think about that Hawk, it’s so helpful to have a mans insight on it. I asked him but he didn’t seem keen :-\ So nothing has changed really in terms of intimacy. The survival guide is very helpful! 

I too would recommend the ALC.  There are studies that suggest it helps and it clearly helped my pain at least because I started and stopped it 3 times to made sure that was what was helping.  Hopefully, you have read the survival guide.  If not read it together, probably twice.  It is a lot to absorb with casual reading.  Here is the link https://www.peyroniesforum.net/index.php/topic,3180.0.html

Be a little cautious with the candles etc.  It might be perfect for him but many men think "Oh I see, she really wants sex and has it all planned out and I can't do that."  They then feel like they didn't satisfy your sexual need, feel like failures, get angry and there is a blow-up.   There is a saying that is generally true but of course with exceptions.  Women give sex with the goal of intimacy, men give intimacy with the goal of sex.  To a man, all intimacy ends in intercourse or what is the point and that is what he is apt to read into the candles, message, etc.  Now if he is up for sex, no problem.  If you both know in advance that sex is not the end goal, no problem, but communicate to avoid misunderstanding.
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Discofeet

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Re: Women Speak Out about Peyronie's Disease
« Reply #322 on: July 28, 2020, 07:58:52 AM »

Project this is great info, thanks so much. I’m definitely going to get him one, he has been using a rice sock. The lamps are quite reasonably priced in the UK.

The percussion massager sounds interesting! I always thought aliexpress was a dodgy site, but if it give you relief then it can only be a good thing!

Thanks again, I’m going to do some more research into the lamps.  :)



Hi Discofeet, sorry, have only just got back to the forum.  Thank you for your kind words. I usually post on only scientific/technical matters, not personal/emotional, because that's my educational and professional background.  But it's appreciated to be able to post on that sort of thing.

So, yes, I am sure you should get a heat lamp.  In no particular order, this is because of about 3 reasons,

Firstly, the (albeit rare and small) studies on hyperthermia, which did not use a heat lamp to generate heat, but, they still did use heat and that was the assumption on what was the active agent.  Although there was weird stuff in one about energy dosage that I thought was bizarre: Heat is heat.

I posted about this, as you may have read from my previous posts. I was surprised the lamp I got seemed amazingly good value and is especially excellent at being able to position the light beam at just exactly wherever you want it. Much better than any normal lamp I ever had. I would even highly recommend it just to use for a normal reading lamp.

Secondly, using heat helps with both stretching and VED, this effect is really obvious, am sure everyone agrees.

Thirdly, heat usually helps with topical (=through the skin) substance absorption. (increases skin permeability)

I have been using fairly intense heat for some time since then and not found any noticeable adverse effects.

Rice socks or heat pads are not the same, because they use simply contact with hot materials to conduct the heat through the skin, this seems to me not as good as infra red light which irradiates it directly through the skin, with a lower capacity for blood vessels to transport the heat away.

Having said this, I keep meaning to make a little rig to allow tiny infra red emitters to be worn over the penis and shining on it , as this would be more convenient, and save electricity bills. Regarding the latter, I did get a lamp that came with a 125 W  infrared bulb.  I had read a recommendation here, to get a 250W bulb, but the electricity bill would be more, even if the bulb is compatible  with the lamp.  With a 125W bulb, you probably have to be more careful as it needs to be about only 6 inches from the penis. 



yes it seems hard to understand about his behaviour, if you mean that has changed directly as a result of the Peyronies Disease.  After all he'd have exactly the same problem with someone else, or by the sound of it even more so, and same problem with masturbating. It is true that painful erections are unpleasant, I remember the pain outweighs the pleasure! I didn't look into enough possibilities as much as I could have to fight the pain and inflammation. Antinflammatories seems to be the most obvious thing (e.g. dexamethasone, diclofenac, and many substances such as discussed in threads such as DMSO + X).  Options that seem likely to be useful to deliver them directly include DMSO, iontophoresis, liposomes, and yes massaging with oil and heat.  I did use serrapeptase, orally, which seemed to work a bit.

since you think massage helps, you may be interested I bought a 10,000Hz "percussion massager" from Aliexpress. I have no evidence whatsoever that this is either safe or effective - maybe it's dangerous! but I like it!
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projectpd

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Re: Women Speak Out about Peyronie's Disease
« Reply #323 on: July 28, 2020, 12:20:43 PM »

that's great!, also it is easier than a rice sock, to do massages and/or stretches combined with heat. Also possible when using a VED.

The massager is also definitely quite an experience. There are no power settings, just different speeds. I looked for 10000 revs/min after reading a few comments such as:
https://patents.google.com/patent/US9265689B2/en
"For scar tissue therapy, a frequency range of 140 to 200 hertz is chosen with 170 hertz being optimum. "
(170 Hz=10200 rpm)
I could find no source for that claim, but thought I might as well have it. Most of them I saw did not.
I got the cheapest on Aliexpress that had that spec. I am sure it would be wise to only use a very little massage at first and see how it goes.

It's not a dodgy site, imo, but it can take an unpredictably long time to receive the goods, but that's well known. I usually have received exactly what I ordered.
 
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P1992

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Re: Women Speak Out about Peyronie's Disease
« Reply #324 on: July 28, 2020, 10:57:57 PM »

projectpd,

Could you say the specific name of the electric massager you purchased on the aliexpress website? Can it work for the chronic phase of peyronie's disease? Does it act similar to shock wave devices?
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projectpd

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Re: Women Speak Out about Peyronie's Disease
« Reply #325 on: July 29, 2020, 08:47:10 AM »

It is model Wil000012. Seems to be cheaper now than when I bought it, £22. incl. shipping.
Top branded models are not cheap e.g. £549. So I don't know how long it will last. There is no fault with it so far. Perhaps it should need to be looked after carefully e.g. not over used (overheated) or knocked about.

Can it help with the chronic phase? I don't know. There is no research on it I can find, and I will not be able to tell as it is not the only thing I am doing. I have read that "massage cannot soften scars over two years old".  I thought that even if it does not help the scars directly, it may help absorbing topical stuff .

Vibrations are not at all the same as shock waves.  Then again we don't know exactly by what mechanism shockwaves are supposed to help Peyronies Disease.  I would like to think that there  might be some overlap of the effects, and it doesn't strike me as being as risky. For example there is no pain whatsoever, it's just pleasant.
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