Sex and Xiaflex?

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lmlalo

Hi all,

Today, I went to for my third ultrasound to check out the state of things (the first was at the beginning of this whole ordeal and the second was after the first six shots of Verapamil). As expected, things are not great. After the first six or so rounds of Verapamil, there was only mild deformation. But over the course of the next five Verapamil shots, my erect penis started to curve inwards at the lower of the two plaques I have. It now is at around 60 degrees. The top plaque is calcified and has caused an indent and curves a bit to the side. I've had Peyronies Disease for around a year now and my doctor recommended we move onto Xiaflex.

I have a question that might seem a bit insignificant by comparison to the overall situation but is still on my mind. My doc says you can't have sex or masturbate for at least four weeks after the shots. With a recommendation of four six-week cycles it doesn't look like I'll be getting off much over the next six months. For guys who have gone through this, do you get used to it? I can't remember the last time I didn't have sex or j/o for anything over a week or two.

Thanks.  


dru92646

Hi,
The manufacturer says NO INTERCOURSE for three weeks after your second injection.Better to be safe than sorry.I  would speculate that the degree of curvature might dictate how safe you want to be.I have only managed intercourse once in the last 6 months but I have an almost 90 degree bend.After a very active sex life this is like torture only it won't kill you .It certainly is a tough blow to complete sexual satisfaction(lousy pun noted). I actually talk to a few friends about it and can crack them up about the stories of treatment.I have had more attractive female nurses assist in treatment than you can imagine and I can only say it takes a bit of getting used to. Hopefully you have a good understanding partner who looks at it as a fun challenge and is willing to help you through this most difficult time. Good Luck

Bentwood

I'm just curious, what could happen if someone gently masturbates after a Xiaflex injection? Is the handling of the penis during masturbation the problem or does ejaculating cause the harm?

QuackAttack

Bent,

If you do something like that you are very likely going to have a penile fracture and you will be in a whole lot worse shape than you are now. Don't even think about sex or jerking off for two weeks.

pdpatient2017

@dru92646 and @quakattack, my uro told me that I can have sex after 2 weeks. Also xiaflex website and their pharmacist told me no sex for 2 weeks. What is the safe duration of time to stay away from sex after injection ?

betterbend

My Doctor, who has done hundreds of injections, said with each treatment course, sex stops after the first injection and that ban lasts for two weeks after the second injection.  WHich is the manufacturers recommendation.  Risk of fracture. For me that means I stop for three weeks, and can have sex for the next four.  
55 - Onset May 2017.  38 degree bend up.  Failed Xiaflex treatment.  Still functional so I decided to stop treatments.  Only take 400mg Co-Q10 and occasionally use Restorex

pdpatient2017


TonySa

My doc says 3 1/2 weeks I think to be extra safe.
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

betterbend

Is he recommending 3 1/2 weeks after the first injection or the second?  My last injection had a lot of bruising and I waited two weeks and had vigorous sex.  I am regretting it as I think with restarting the traction and the sex I feel sore.  I wonder if I jumped back in too fast.  Didnt have this issue the first round, but maybe started slower after the treatments.  
55 - Onset May 2017.  38 degree bend up.  Failed Xiaflex treatment.  Still functional so I decided to stop treatments.  Only take 400mg Co-Q10 and occasionally use Restorex

TonySa

After second as I understand
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

betterbend

Based off my last experience, I would consider waiting longer than 2 weeks, especially if the injection was a tough one.   I would definitely recommend that whenever you get back to it you do it cautiously.  Some mild hand action or oral for the first time, then well lubed penetration ...  
55 - Onset May 2017.  38 degree bend up.  Failed Xiaflex treatment.  Still functional so I decided to stop treatments.  Only take 400mg Co-Q10 and occasionally use Restorex

WhatNext81

"Do not have sex or any other sexual activity for at least 4 weeks after any xiaflex injection, and the pain and swelling have gone away, or until given permission by your healthcare provider."

Quote taken from the patient guide for treatment for peyronie's with xiaflex. Any Dr who admisnisters these injections sbould be going over all of the information covered in the printout and sending the paitent home with a copy. Pretty sure it's protocol. Hand modeling/stretching instructions are also included.  
Please go to PROFILE then FORUM PROFILE to replace this text with your profile info such as age, date of onset, symptoms, treatments tried, etc

pdpatient2017

whatnext81, I am not sure where you have 4 weeks. I just  pulled this from xiaflex website

Do not have sex or any other sexual activity between the first and second injections of a treatment cycle.
Do not have sex or have any other sexual activity for at least 2 weeks after the second injection of a treatment cycle with XIAFLEX® and after any pain and swelling has gone away.

https://www.xiaflex.com/

WhatNext81

From Mayo Clinic. Perhaps it has to do with their data collected by patients they treat, I'm not exactly sure. It was mentioned to me that their recent data suggested xiaflex to be more beneficial than previous information/studies had shown. Given that I'm a paitent undergoing xiaflex, using their traction device and under their care, it makes sense to me to follow their protocol. This is what I'm given after each injection.
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pdpatient2017

That is a huge difference between different physician and clinic. I am not sure anymore. Thanks for the info.  

TonySa

I believe it's just how safe the MD is comfortable with, extending it to three weeks logically means fewer fractured penis' across hundreds undergoing the procedure.
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

WhatNext81

That makes sense as they've done thousands of these injections. Another possibility is that a lot of ppl come in from all over the country for treatments. My injections aren't spread out. Each cycle completed within 24 hrs. Say I go in on a Tuesday for the first injection, the second one is done on Wednesday. I suppose that's not too far off from 3 to 3.5 weeks since it's not spread out.
And maybe a little extra caution as a few times the cycle required an injection on the same plaque within 24 hrs. A little more time to safely heal?
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betterbend

I think it's in part a judgment call on the patients part after two weeks.  if the Xiaflex injections were uneventful with little to no brusing them two weeks is ok.  If it's was a difficult injection then maybe you wait 3 weeks.  Common sense would be to go very lightly the first time after injections to see how your body reacts to it ...
55 - Onset May 2017.  38 degree bend up.  Failed Xiaflex treatment.  Still functional so I decided to stop treatments.  Only take 400mg Co-Q10 and occasionally use Restorex

pdpatient2017

I agree. even after 3 weeks, go easy .  

WhatNext81

I agree as it's your dick. But, a lot of factors come into play that we probably don't understand. Men with larger penises are more at risk for peyronie's. Say the plaque is near the base of an 8" penis. Blood flow circulates around that plaque, and the weakest spot is at the base, leaving things more prone to injury. I've had bruising that didn't completely go away for 3 weeks. Everyone's situation is different and we know our bodies best. I just choose to follow guidelines from the guy who has  been studying the male anatomy and has achieved many accomplishments in regards to peyronie's and much more. That and I was single when I was diagnosed. I'd probably be singing a different tune if I had a girlfriend/wife. 😂
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Whyhellothar

My first series of injections was a struggle. You don't realize how much sexual content you're bombarded with in the radio and tv until you aren't allowed to get off for three weeks. The soreness down there, and mandatory tugging three times a day doesn't help you put that part of your body out of your mind either. It was all that I could think about for those first three weeks, literally counting down the hours. I even caved in and tried prostate massage on somebody's recommendation as a safe alternative for release but found it to be too difficult to be worth the trouble and incredibly underwhelming in general. Each series of injections gets easier to cope with though. I just finished my third three-week abstinence period and it was a breeze this time.

I asked my doctor about masturbation when I was having a difficult time coping during my first series of injections. She said that it's not recommended, but then followed up with, "But I suppose if you took extra care to be slow and gentle, it would theoretically be alright... it's mainly the risk of bending or blunt pressure that you're supposed to avoid." So after the swelling went down in my second and third series, I got a little brave and tried it without any issues. Just a gentle tickle with one or two fingers on the underside of the shaft if I got really desperate, and a little patience, was all that it took. But you can find something else that works too, I'm sure. Just be smart about it. Don't go grabbing anything if you value your safety, and listen to what you're body is telling you. If anything remotely hurts, then stop.  If you're afraid that it might still be too soon, then don't risk it yet. But compared to the straightening exercise that is recommended, a few minutes if gentle caress certainly shouldn't hurt if you're careful.

TonySa

I took the same approach.
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

betterbend

I fully get what you are saying, I was going crazy after the first series.  Being prevented made it worse then a voluntary abstaining.  It was a little easier after round 2, but I had more bruising and should have waited longer then 2 weeks.  Next time I know better.

I think the thing about sex is the unpredictability of the stress and forces placed on your johnson.  If your partner moves wrong, or shifts, or slips out during a thrust the weakened area might give out.  I would guess that gentle well lubed jerking off wouldn't present those kinds of dangers.  IDK, next round I will absolutely give it the mandatory 14 days, and if things are good, just settle for some nice oral for that week ;D
55 - Onset May 2017.  38 degree bend up.  Failed Xiaflex treatment.  Still functional so I decided to stop treatments.  Only take 400mg Co-Q10 and occasionally use Restorex

AussieDude

I was told wait 2 weeks, but longer of bruising or discomfort remained. I think that if one uses a bit of common sense one shouldn't run into any problems. If you're at 2 weeks post 2nd jab and bruising/swelling and discomfort has gone, then it should be quite safe.

betterbend

Just start off easy ... skip the "bucking bronco" routine for a while    ;D
55 - Onset May 2017.  38 degree bend up.  Failed Xiaflex treatment.  Still functional so I decided to stop treatments.  Only take 400mg Co-Q10 and occasionally use Restorex