Hopeless - Xiaflex injury

[Iwanttoheal]

I developed Peyronies almost exactly a year ago-with a slight dent and slight hour glass and a hinge effect. . I went on pentoxifylline, but it gave me anxiety and made it hard to sleep so I did it twice a day. I went to see local urologists who also suggested getting a Trimix injection and a sonogram. I did not do a sonogram. Then I heard about Dr Eid and went to see him.

I saw Dr Eid a month after it started (last February) and he looked very concerned and said the only thing we can do is xiaflex. I technically did not qualify since I had a slight hourglass at the base and a hinge affect rather than an actual curve while erect.

He warned against Trimix because he said it could cause scarring" and did his own sonogram with an injection of just one drug. Good thing he only used one drug because I developed the priapism that had to be drained after the sonogram. He found a significant cord of plaque along the top and some on the sidetold me I should get the xiaflex injection sooner rather than later.

I wound up getting approved for the xiaflex injections in August. I got my first injection, and then the second injection four days later. The first injection caused some bruising and then the second injection four days later caused massive bruising and swelling.

Unfortunately, weeks later, the second injection caused massive plaque buildup, the size of a grape and a "cobra head deformity". Since August I have experienced progressing,horrible curving to the left. It's been progressing every month since and I am now beyond 30° whereas before I was straight with a slight hourglass and a hinge effect. The first injection four days earlier I believe did resolve some of the plaque on the top. But it was the second injection 4 days later that caused massive bruising and the giant plaque.

Dr Eid is very nice and cares about his patients. He said The Giant plaque it's probably "progression of the disease" whereas I disagree because know for a fact the second xiaflex injection caused the rapid, significant scarring. The plaque literally appeared within one month after the injection after eight months of no change before the injection. I love Dr Eid, but I don't think Xiaflex is completely safe for use. I know it helps some people, but apparently it can make things worse. Dr Eid recommended I see Dr. mulhall. I have nothing but good things to say about Dr Eid despite the Xiaflex injury.

I then saw Dr. Mulhall as per Dr Eid's recommendation and he he was not very optimistic. I saw him in September when I only had a cobra head deformity. He wanted to do another sonogram with trimix. He talked about grafting to help the deformity, but that it would only be aesthetic. He said he needed to assess me on his own and dismissed my pictures of the curve and wanted to see it for himself and then he would talk about the options. He told me to try Viagra and see if I can live with the hinge effect . After the priapism from a single drug for the sonogram, I was worried about getting another injection of anything. I then got a second opinion from another urologist who said I might need surgery.

I then saw another local urologist who wants to low intensity shockwave with PRP, which will cost $3000. I've already spent well over $5000 in doctors visits and out-of-pocket costs thus far.

After seeing Dr. Mulhall and the local urologists in September started topical 70% DMSO for about a month while on pentoxyfilene.  Unfortunately, the curvature got worse very quickly. I was also doing restorex and it wound up causing a lot of pain.

I then stopped bith oentox and DMSO after a month whilefiling because I developed severe, progressing insomnia. I do not know if the insomnia was related to the pentoxifylline, or the DMSO were stress from this and other things that we're going on including the progression of this disease, which I believe could also have caused the insomnia. To this date, the insomnia is not fixed despite trying sleeping medication.

I'm at the end of my rope. I am extremely depressed and hopeless, and also have massive anxiety at the same time about this.  It's progressing and I don't know what to do. I'm afraid to get another xiaflex injection. I'm considering trying the PRP or trying Thacker's formula or the vitamin C DMSO and castor oil that the forum member "melting" suggested.

Nobody is really offering me any type of hope, except the shockwave therapy urologist who stands to profit significantly from it.

I'm hoping for some guidance and help and some hope. Please let me know. Thank you.

[Mikel7]

Welcome Iwanttoheal to the forum and thank you for filling out your signature line. Also please download our survival guide if you have not done so -->Survival Guide .

I am sorry for what you have gone through. I do agree that Dr Eid has an impeccable reputation and is very gifted in his treatment of men. Xiaflex has worked for some men and others not at all. Remember that peyronies is a mysterious beast as to how and when it attacks men and how long before going dormant then reoccurring. One thing you have not mentioned is if you have tried traction or VED therapy? Have you looked into heat therapy. It is possible that your peyronies is still active and doing more damage. Also remember that anxiety in itself will do a lot of damage all around.

If I were in your shoes I would possibly get an appointment with Dr Trost who may have some opinion as to where you are right now and what he would suggest. Getting a clear set of eyes on your situation could prove to be helpful.

Yes pentox can cause insomnia in some men. When I was taking it I had a terrible time sleeping at night.

The one thing you have going for you is that you are here among the best group of men on the internet who share one common goal - surviving peyronies! Interact and read the postings ..

Mikel7

[MunichPatient1989]

Hi Iwanttoheal,

very sorry about what you are going through.

I had a similar experience with doctors. None could really help or wanted to support me with the treatments I wanted (e.g. no one prescribed me Pentox even so I wanted to try it in acute phase.). Each offered treatment feels like a huge tradeoff between risk and reward.

I would definitely try Dr. Trost has he is super friendly and has a lot of experience with Xiaflex. He might also give you peace of mind if Xiaflex could caused your additional scarring and plaque as he did a lot of Xiaflex treatments.

One thing that helped me beside going to urologist is to start working on the mental load of this disease. Therefore I started psychotherapy which gradually helps me to better cope with the situation.
The 2nd thing that helped me with the mental load was to open up to close friends and family, telling them about the issue I have. This took away a lot of felt pressure from me as I was not alone with the condition anymore.

On the medication side I can tell that daily Tadalafil helped me extremely (better then Viagra). It allows me to have sex reliably even so I have hourglassing, etc.

Also there is hope. Hourglass often gets a bit better over the long time and there are always options to keep having sex: surgery, implants, etc.

I wish you a lot of strength and patience for coping with this disease.

KR
T.

[Iwanttoheal]

Hi, thank you for the replies. I tried restorex, but it hurts quite a bit and causes pain under underneath the head and I believe it may have made the curve worse even though I'm bending away from the curve for 10 minutes at a time. I believe I am still laying down plaque one year later.

I tried daily Cialis, but it causes depression in me. I don't believe it helped me at all when I was doing it for over a month back in June or July.

As for vacuum pumps, what has happened with this deformity, is that the base of the penis on the underside bulges out. When I try a vacuum device, it seems to bulge out even more.

I would rather not go the direction of surgery or an implant. I would like to try DMSO again-pharmaceutical grade maybe mixed with castor oil or vitamin C. But I understand that these are unproven and have had mixed results. I can have an erection, although it's not the greatest quality, and the hinging and bending is causing it to be painful to attempt intercourse.

Dr. Troost is in Utah? Does he do telehealth appointments or do I have to fly to Utah to see him?

I remember Dr. Mulhall explaining to me that Xiaflex does dissolve the Tunica and that Dr. Charles tries to induce a fracture in the office to get it to repair. That scared me a bit. I'm not sure how accurate his information is.

[Arthur]

Hello, dear brother! And welcome to the forum!

I'm sorry that you are going through such a time but please keep trying.

Dr. Eid is said to be one of the best doctors out there on peyronie's disease so if I were you I would go back to him because most probably he has some ideas of what had gone wrong and what could be done to treat it or minimize further harm.

If traction therapy causes pain or worsen your condition then I would stop it for now and maybe try it when my condition has stabilized.

You should also look into intermittent fasting, many folks here swear by it that it helps with the inflammation part of the disease, and healthy keto diet and high quality carnivore diet can also help.

All the very best!
Take care!

[MunichPatient1989]

As you stated anxiety I can tell you everything I did that helped me reduce the mental pain:
- Tell partner, close friends and family about my condition.
- Start psychotherapy. I have OCD and the disease treatment became the target of my OCD. Therefore I am currently doing exposure response prevention therapy. Basically it is all about accepting that the disease happened, that it might never get better, that no cure will be ever available and that the disease.might progress and cause impotence at some point. It sounds scary, but it helped me a lot.
- Take some supplements like Propolis and basic vitamins to have the feeling of a bit of control.
- Change Diet to Low Carb and drink lots of water
- Cut Alkohol, Smoking and Coffee entirely
- Daily exercising (30 minutes)
- Regular walks in a closeby park
- Guided breathing sessions
- Warm baths in the evening

Stay strong!

[Iwanttoheal]

The underlying thought that it's continuing to curve and get worse. Every month is there. Everything I do, all day I can't help but feeling underlying panic.

Everything I've tried to do to help it has made it worse. I have that massive lump of scar tissue on the left due to Xiaflex and I have developed scar tissue on the right side-I believe due to the restorex. When I was using the device to bend away from the curve, I believe it was compressing the right side and more plaque developed.

I think someone said it best that getting Xiaflex or certain interventions during the acute phase can only make it worse for people. I am surprised urologists are pushing to get Xiaflex sooner rather than later while it's still acute. I'm not sure what to do at this point. I set up an appointment with Doctor Trost, but it's not until March as that was his earliest.

Should I try Xiaflex again with Dr mulhall or a local doctor? Shockwave therapy?

[LWillisjr]

I haven't seen any evidence that shockwave therapy does anything.

[MunichPatient1989]

I was at the Dr. who did this study who showed that Shockwave Therapy had no effect (at least back in 2013): https://pubmed.ncbi.nlm.nih.gov/23898925/
He did not recommend Shockwave therapy for treatment of my plaque in acute and chronic phase.

The acute phase is really mentally taxing due to the felt time pressure of treatment.
Stay positive.

[BentKnob]

I spent £3,995 on shockwave therapy when first discovering I had peyronies disease.

I hadn't found this forum and wasn't educated on the disease.

I thought it was a straight forward problem that was solved by paying a few thousand pounds in treatment.

The reason being is my wife had paid for a gastric band, tummy tuck and breast implants. She paid the fee and got the results.

I paid £4,370 to a clinic in London and got no results. My curvature didn't improve.

Shockwave therapy doesn't work. It's all sales and marketing.

[Iwanttoheal]

I will hold off on the shockwave. Unfortunately, it seems like everything I do in the acute phase makes it worse. Xiaflex made it worse. Stretching traction seems to cause more plaque and soreness. DMSO seems to make it worse. Pentoxyfilene prevents me from sleeping. What do I do?

I'm panicking. The curve worsens each month. It was stable from January to August with no curve-just hourglassing. Then in August, I get Xiaflex and the hourglass improves, but the curve gets very bad every month since August with new plaque that formed. I need to stop this from progressing.

[GaussRifle]

Use restoreX asap. By the way I developed 2 plaques on the left I never had before xiaflex. RestoreX is the only device that can help you with little to no side effects.

[Iwanttoheal]

I'm getting pain from the restorex. The left side where some of the plaque is is hurting and it's hurting when I'm not using the device. I stopped it for a few days and the pain continued like a dull ache. It's the same pain I was getting when I was developing the disease which has me worried.

Use restoreX asap. By the way I developed 2 plaques on the left I never had before xiaflex. RestoreX is the only device that can help you with little to no side effects.

Did the xiflex help you at all? Or did the new plaque cause more issues?