Health Organization for Pudendal Education

Hi Aussie,

Sorry, I just noticed in a previous post that you requested to have your account deleted. I can't delete it but I deactivated it instead. If you decide you want to reactivate it, you can contact us via the contact form on the website. https://www.pudendalhope.info/contact-us/

Wishing you all the best,

Mod3/Violet

Tuchka204 wrote: ↑Fri Sep 01, 2023 12:45 am

Staypositive wrote: ↑Fri Aug 04, 2023 10:36 pm I contacted Dr Aszmann, excellent plastic surgeon specialising anything nerve related. I've just regained sensation in the glans pretty much a day after microsurgery so far. It still feels funny down there but I have sensation and I guess the nerves need a bit of time to heal properly.
After emailing him he took a few days or a week to email me back indicating that this is most likely my problem dorsal penile nerve compression, I told him that I suspected dorsal nerve compression as in my case for 2 months I had no glans sensation and this is pretty much the only explanation (and I have no spine issues, diabetes no testosterone issues). He scheduled a webex call 2-3 weeks and a consultation fee of EUR500 after replying to my email. During the email reply I asked how soon could I have surgery as I was 100% sure this was my problem (its very specific just ED and no sensation in the tip of the penis the glans) and he was able to schedule me for surgery a month after our webex call.
Surgery was quick 90 mins, full anestesia, not really too invasive, not painful in my case. Nurses asked me if I needed painkillers after surgery and the pain was very bearable like 2/10. I was able to walk the next day around the hospital and released that next day at night, and was in Vienna post surgery for a few days as per his recommendation (not that it is needed just as a precaution being in the country to make sure I'm fine - unlikely there would be any complication but let's say there was it would be inconvenient and a big hassle to return back from my home country and get checked by him) so I was chilling in my hotel and I was walking around slowly and fine around the streets.

how do you feel now?
Was the operation one-sided?

Operated on both sides.
First few weeks some pain (bearable) and lots of weird sensations I saw improvements (it was probably a result of healing and decompression etc).
Now after 1.5 months I have some sensation in the glans but I don't know if it suddenly got worse or not but the sensation I have feels VERY LIMITED actually (I feel a tiny bit of touch but again very limited like 10-15% out of 100% if I have to put a number and I do not feel temperature at all - its been a while since I have feeling there that I cannot even remember how things should feel like before).
Also I was constantly waking up with erections just some time after the surgery but now these past few days, not so much.
I can get erections, not super easy as before but I can get erections, just not as easy as before I had this issue of nerve compression, but I can get them - so this is just very confusing.
I think the fact that I'm circumcised as a teenager 15-20 years ago, also doesn't help as a circumcision itself leads to some level of desensitized glans.
I do remember asking the doctor if there was a chance of compression happening again, he said extremely low like 3-5% chance.
I may give it a bit of more time and consult with the doctor especially about the part of having a compression again or the nerves not been decompressed properly.

Thanks for the update!

This could be a temporary thing as the nerve continues to heal. It’s not always a linear healing path post surgery. Unfortunately, it’s likely no one will know for sure until a couple months passes what exactly is happening.

Dr. Aszmann had mentioned to me that the dorsal canal is a very very tight space to begin with (even in a healthy person with no symptoms) so it’s one of those things that is very hard to predict.

Please continue to keep us updated on your healing!

Aussie, please let everyone know what made you better

Staypositive wrote: ↑Fri Sep 15, 2023 8:35 am

Tuchka204 wrote: ↑Fri Sep 01, 2023 12:45 am

Staypositive wrote: ↑Fri Aug 04, 2023 10:36 pm I contacted Dr Aszmann, excellent plastic surgeon specialising anything nerve related. I've just regained sensation in the glans pretty much a day after microsurgery so far. It still feels funny down there but I have sensation and I guess the nerves need a bit of time to heal properly.
After emailing him he took a few days or a week to email me back indicating that this is most likely my problem dorsal penile nerve compression, I told him that I suspected dorsal nerve compression as in my case for 2 months I had no glans sensation and this is pretty much the only explanation (and I have no spine issues, diabetes no testosterone issues). He scheduled a webex call 2-3 weeks and a consultation fee of EUR500 after replying to my email. During the email reply I asked how soon could I have surgery as I was 100% sure this was my problem (its very specific just ED and no sensation in the tip of the penis the glans) and he was able to schedule me for surgery a month after our webex call.
Surgery was quick 90 mins, full anestesia, not really too invasive, not painful in my case. Nurses asked me if I needed painkillers after surgery and the pain was very bearable like 2/10. I was able to walk the next day around the hospital and released that next day at night, and was in Vienna post surgery for a few days as per his recommendation (not that it is needed just as a precaution being in the country to make sure I'm fine - unlikely there would be any complication but let's say there was it would be inconvenient and a big hassle to return back from my home country and get checked by him) so I was chilling in my hotel and I was walking around slowly and fine around the streets.

how do you feel now?
Was the operation one-sided?

Operated on both sides.
First few weeks some pain (bearable) and lots of weird sensations I saw improvements (it was probably a result of healing and decompression etc).
Now after 1.5 months I have some sensation in the glans but I don't know if it suddenly got worse or not but the sensation I have feels VERY LIMITED actually (I feel a tiny bit of touch but again very limited like 10-15% out of 100% if I have to put a number and I do not feel temperature at all - its been a while since I have feeling there that I cannot even remember how things should feel like before).
Also I was constantly waking up with erections just some time after the surgery but now these past few days, not so much.
I can get erections, not super easy as before but I can get erections, just not as easy as before I had this issue of nerve compression, but I can get them - so this is just very confusing.
I think the fact that I'm circumcised as a teenager 15-20 years ago, also doesn't help as a circumcision itself leads to some level of desensitized glans.
I do remember asking the doctor if there was a chance of compression happening again, he said extremely low like 3-5% chance.
I may give it a bit of more time and consult with the doctor especially about the part of having a compression again or the nerves not been decompressed properly.

How are you feeling now?

Staypositive - hey how are things going now for you post dorsal nerve surgery?

benraycamp0 wrote: ↑Wed Dec 06, 2023 10:15 am Staypositive - hey how are things going now for you post dorsal nerve surgery?

It's a bit hard to explain things re my case.

I have not completely regained sensation in the glans (and i don't that i will) but I think my case is just very odd. i.e. i cannot feel temperate on the glans, touch a very little.

It could be that some nerve damage is severe and irreversible or something completely different and my loss of sensation there in the glans may have to do with the fact that I'm circumsized.

Anyone with similar situation doubting surgery I would suggest its safe and worth doing it and not to worry - I think it will most likely work and everything should be fine.

I'm relying on the sensitivity on my frenulum which is very strong there for my of my sensation in the penis - learned that the frenulum is not connected to do the dorsal nerve but some other never also i -i.e i can usually feel touch and temperature there but not in the glans.

I do wake up every morning with an erection like a man usually does and I can perform sexually but its not so easy to be stimulated like it once use to.

It's almost like i have to rely on 25-50% of penis sensation (shaft, frenulum etc) and that's all I have which is not the best but its better than 0%.

Good luck.

.

Staypositive wrote: ↑Wed Dec 06, 2023 8:41 pm
It's a bit hard to explain things re my case.

I have not completely regained sensation in the glans (and i don't that i will) but I think my case is just very odd. i.e. i cannot feel temperate on the glans, touch a very little.

It could be that some nerve damage is severe and irreversible or something completely different and my loss of sensation there in the glans may have to do with the fact that I'm circumsized.

Thanks for the update! I wonder if Dr. Aszmann has any thoughts for you?

To be honest, it’s really unlikely you have irreversible damage (almost impossible). You had symptoms for only a couple of months before doing surgery without any severe injury. Nerves, especially sensitive nerves are much much much more resilient than that.

The reasonable expectation for your case would be to eventually have nearly full recovery of glans sensation, but at the very least a 50-70% improvement.

I struggle with less than 5% glans sensation (barely feel temperature and only some touch), and from all the people I’ve heard about the dorsal surgery, nobody has gotten better from it.

You were the absolutely ideal candidate, so I believe it speaks volumes to the community that nearly 6 months after surgery and you are no better off than you were before surgery when it comes to sensation. Obviously I hope things continue healing, but frankly I'm skeptical of the surgeon's idea of waiting 2 years to find even a little significant improvement.

Erections are very hard to say it’s gotten better from surgery alone also since you started getting significant erectile recovery before surgery. An argument could be easily made that your erections naturally came back with time. But maybe that’s just me being overly skeptical

I really was hoping you’d say that you got 20-30% sensation back tbh. For your sake and everyone else trying for the surgery.

I’m not as much concerned of the risk (which of course is not zero) of surgery as I am about the reward. And from all the reports we have, the risk greatly outweighs then reward (which is 0 from the 8 testimonials we have)

Hi everyone,

IMPORTANT UPDATE FROM ME - A BIT OF A LONG STORY BUT I HOPE IT HELPS PEOPLE OUT THERE

I have been receiving a lot of private messages.

•I do have some limited sensation in my glans (sensation to touch) - my penis doesn't feel like before but I can live with what I have for now (Today's update).
•I cannot really feel temperature....
•I can get aroused (maybe not with extreme ease as before but I can i.e. watching a video or with a woman's touch and even mental thought here and there)
•I can ejaculate (I can have intercourse and/or masturbate and I have done both occasionally) but the penis feels a bit dead at times
•I can feel some pleasure during ejaculation

The cost of the surgery with Aszmann is 16,000€ and my conclusion is that it did NOT work and it's NOT necessary if you issue is specifically dorsal/ED/numbness issue. For pain and pudendal neuralgia issues you could speak to him and other doctors and do your own research.
You'll also read below that you would need an MRN vs MRI to try to get to the bottom of your problem.
Read my story below and you'll understand why, but the long story short is that I strongly suspect my stem cell treatment had a role in whatever improvement or recovery I have.

WAKING UP THE LOSS OF SENSATION APRIL 2023

28 April 2023 I woke up with no sensation overnight and COMPLETE erectile dysfunction something that no doctors could help or explain to me. They told me I was stressed; I was crazy, some gave Viagra and a few that believed me simply said I don't know and can't really help you.
I did so many tests (blood, urine, MRIs spine, pelvis and even penis, testosterone, etc etc) I really panicked and didn't know what to do.

STEM CELL TREATMENT IN GERMANY JULY 2023

01 July 2023 (two months later) I had a stem cell treatment in Germany (Frankfurt) out of desperation since I had no answers from doctors.
If you do stem cell treatment direct through the clinic it's cheaper and 100% more costly via BookingHealth (Health Broker) is what I learned later while talking to the German doctor in person at the clinic. He revealed the commission/cut of BookingHealth. I did it through BookingHealth and I had a companion, a beautiful and very caring translator called Alina at ALL times with me those 5 entire days, we had coffee became friends so I don't mind that I had the extra cost, I was going through a very terrible time, feeling lonely, but if money is an issue for others stem cell treatment will cost 10,000€ if you go directly and 20,000€ through the broker. The don't speak much English in Frankfurt, but the doctor himself does, his name was Dr. Gerhard Siebenhüner. Anyway so these are MSCs stem cells (Mesenchymal stem cell). I learned what they were from this interesting video and then did so much more research: https://www.youtube.com/watch?v=GirGm3pqH2A&t=76s
Stem cells can heal & regenerate into any nerve of your body except blood. MSCs are the type of cells that are your own cells that created your body, that created you, your organs your heart your bones etc into a human being. How it works? They take it from your own fat, it's like saying you are injecting yourself with your own blood for example, it's not risky, it just costs money and if it works it works, if it doesn't it doesn't - no downside other than money is what I concluded.
How does it know what to heal or regenerate or what is wrong with your body, this was extra research that you can do - and during the 5 days clinic procedure in Frankfurt they would use a machine whereby some sort of waves would point at my pelvis so that later they would inject stem cells and they would go that direction.
Ohh - Why did I go to Frankfurt? Simply because I live in Asia and stem cells are not available in my country and BookingHealth was the first to reply to my email accepting to take me and saying they could help while a few other clinics rejected my application after explaining my complicated nerve ED issues. At BookingHealth they told me that people come for ED to them. I explained that my ED was not normal ed i.e not a blood issue and they just kept saying we can help we have seen your type of cases before of nerves (I suspect they kept saying yes to make a sale), but I still went for it and they were super helpful in many ways - on the phone, answering so many questions, with the booking in general, the forms, arranging a driver for me, recommending a hotel a block away, explaining their insurance coverage up to a couple of million euros (this is good and may not be available if going direct), providing a translator to me, I did really get a lot of service but their commission was quite steep). You can get stem cell treatments in many countries including some parts of the US; a clinic Dallas replied to my email 1 month after I got the treatment in Germany with a USD10,000 quote and a promotional offer of USD7,300 if I booked within a month. They were honest to say it may or may not work but there is no downside (i.e. no side-effects), so worth a try.
Prior to the stem cell treatment, I read that spine issues connected to the sexual nerves could be the cause (i.e. I read stuff like TOMAX surgery before even discovering dorsal nerve decompression was even a thing).
Just after doing stem cells therapy, I found pudendalhope.info and I learned about dorsal nerve compression from a 2010 post in pudendalhope.info and this made total sense to me so I immediately jumped on a call with Dr. Aszmann: he listened to my story which he has heard of before and he said it was possible that that was my issue dorsal compression and surgery could be done as early as 1st August 2023 and I booked it.

THE CLINIC IN DALLAS (FYI)

Thank you for the email.
You would be able to do the stem cell treatment here in Dallas under the ED and Neuropathy protocols. The treatment takes 2-3 days and we cover your hotel expenses while you are here. There is no downside to the treatment other than there is always a chance it may not work.
We will harvest 100 million stem cells, fresh from your body on the day of treatment.
We do procedures on Mondays and Wednesdays. To schedule, I would just need to know what date you would like to arrive.

PROCEDURE OF MY STEM CELL TREATMENT

So my stem cells were extracted from my fat belly leaving no scars (everybody is happy to give away a bit of fat).
They are then injected intravenously through the arm. The German doctor said it would be a dose of more than 100 million stem cells which is what most clinics guarantee as a minimum (he said with them it may even be as high as 500 million).
I learned from some reading or from a video that if you have a problem i.e. in your knee its best to inject cells at the source because if you do it intravenously through the arm once it reaches the lungs or kidneys it may not spread much further down.
So, I personally requested the doctor besides injection intravenously through my arm to also inject it at the base of penis (below my belly) which hurt and I remember the doctor grabbing my arm knowing this was really gonna hurt quite a bit.
Then I also requested an injection at my lower back around the lower spine levels (so just above my butt). A few injections there as well thinking just case my issue was related to my spine even though a doctor online helped me rule out this Tomax thing I was reading about.

SUMMARY OF TIMELINE

28 April 2023 waking up with ED (again I had complete ED/impotence)
01 July 2023 stem cell injections in Frankfurt
15 July 2023 I start waking up with full erections (not much sensation in the penis or still a weird sensation or a bit of numbness) but now I could perfectly have an erection. I would avoid any masturbation but did do it a few times just to see if everything was working down there. I saw some improvement to start happening, its hard to describe but let's say 20-40% recovery at least at that time, not 100% which I wanted at that time but maybe it was the beginning of healing process, so I still proceeded with Aszmann surgery which was already booked. I wanted to move fast, thinking the longer nerve damage persisted, the worst it would be.
01 Aug 2023 surgery with Dr.Aszmann. After the surgery during the entire month of August I had very weird sensations, pain, electric shocks (no pins and needles) and I think that getting erections (which were a bit painful ones after the surgery for a few weeks) I thought that those weird feelings meant that healing was taking place. Those weird feelings went away after a month or so and things felt a bit weird a bit numb down there (like something really doesn't seem right). Now after some time and much more information available to me, I feel erections and recovery were due to stem cells and those weird sensations I had were just side-effects from the surgery.

Today I can have intercourse and ejeculate something was healed with the stem cells but yet very limited sensation ... still hopeful to get some treatment or surgery or even another round of stem cells....


RECENT VISIT TO DR.FILLER IN SANTA MONICA (NERVE DOCTOR)

I heard about this nerve doctor Aaron Filler in Santa Monica California in December 2023 (even though I have some good improvement it doesn't feel the same as before and I really want to be satisfied and get to the bottom of this still). So I booked an appointment on 15 Jan 2024 with Dr. filler because I discovered that one can do a MR Neurography (an MRI for nerves basically for USD5,000 in California and this might be a fraction if covered by your insurance) as I had read that with a normal MRI you cannot really see the nerves but its useful and with context it may indicate if there are nerve issues. I went to Dr.Filler for that and he has knowledge /experience on pudendal neuralgia issues and has written some papers on this (penis numbness, pudendal neuralgia, etc and maybe the MRN may help a bit more to spot something... which I'll find out soon once I get the results. I came across a 2008 YouTube video of Dr Filler referencing people coming to him with nerve problems down there and that they feel embarrassed to share this pain or numbness with friends and family and that doctors and other people overlook their condition and think they are crazy which is what happened to me exactly.
This is the YouTube video: https://www.youtube.com/watch?v=5suF07z42UE&t=83s
Once I meet Dr.Filler, and he performs a thorough physically exam on me and says he has heard of my rare problem from other patients but its mostly pain and pudendal stuff he has dealt with but few cases of penis numbness (I gave him my full super long story and journey he took notes on his iPad). At one point during the physical he presses my upper butt and uses a lot of technical language including impar ganglion aka inferior hypergastric ganglion, and other words like coccyx, nerve blocks injections, etc. He said he thought the problem was at the impar ganglion (this is at the lower spine just above the butt) and that depending on the findings of MRN perhaps he can make some injection to fix this or improve my issue but couldn't say much right now because he told me that it seems I have recovered to some extent and that my only issue now is the sensation to recover; a bit of problem in arousal but a bit manageable at the moment (unless it get worse later). I had no idea what he was talking about and I just kept taking notes of all those technical words on my phone. After the physical, I go to a nearby lab to do my MR Neurgraphy and when I go back to this office the staff tells me that the results and complete report will come back in 60 days which would be mid-march 2024. I was shocked and disappointed since I traveled all the way to California. I really thought it would be immediate (the followup) or at least within a few days and I was willing to stay. So now, I am just waiting for the results and to have a conversation with him (there are many questions I have). However, if I don't do anything my current recovery is acceptable for me. I'll report back soon.
Injecting a nerve block to numb the pain is not what I need and what I have read this is, I'm confused and need to do more research and talk to him in March because I don't need my nerves numb to reduce pain, because I am already a bit numb not in pain so this is a complex issue that I need to explore- his own literature does say that some nerve injections can help with penis numbness and other pieces of literature (not his) suggest that nerve impar ganglion blocks can in very very rare occasions cause some complications such as bladder and sexual dysfunction problems.
I told him about my surgery in Vienna and he said it did not make sense to him that both my dorsal nerves of the penis would get compressed. His rhetorical question was why and how would you have a nerve compression in the same place on the left and on the right and at the same time?

There is not much literature (really hardly any) on impar ganglion and the link of the impar ganglion to sexual function but I have done tremendous research including Dr Filler work/comments, PDF papers online, Google books, Websites etc and it's starting to make sense to me...

GANGLION IMPAR BING CHATGPT SEARCH RESULT:

The ganglion impar is a bundle of nerves located in front of the sacrum, which is the bony triangle at the base of the spine. It is part of the sympathetic nervous system and controls functions and responses in the anal area, lower part of the urethra, vagina and vulva, scrotum, tailbone, and/or lower area of the rectum 1.

There is some evidence that suggests that the ganglion impar may play a role in sexual function. For example, a study published in the Journal of Sexual Medicine found that patients with chronic pelvic pain syndrome who received a ganglion impar block experienced significant improvement in sexual function 1.

However, more research is needed to fully understand the relationship between the ganglion impar and sexual function. If you have any concerns about your sexual health, I would recommend speaking with a healthcare professional.

CONCLUSION

I injected stem cells intravenously which spreads through the whole body supposedly and at the base of the penis and also at my lower back near or exactly where this so-called impar ganglion is located but also close to all these other nerves pudendal nerves or near and or sex nerves L5 S1 S2 that connect to the pudendal nerve , and things started to improve quite quickly within 2-3 weeks I saw some recovery (by mid July 2023 the effects of stems cells start to kick in and my surgery with Aszmann was 1st August so my improvement started before the surgery actually. If you're asking why go ahead with the surgery? Well at that time I was 1000% convinced it had to be a dorsal entrapment (the only logical explanation to me) and I thought that if the stem cells were working to some extent they were simply healing some of the nerve damaged caused by the entrapment.
I would recommend stem cells if you can afford it and try more locations around the penis, lower bank, and especially target the pudendal nerves and ligament area - the middle of the butt cheek looks the best location I think...
The weird feelings after the surgery were just probably side effects of the surgery. Prof Azsmann said he found them compressed on both sides and shared some videoclips and photos. My theory is that my nerves may have been fine and what he thinks is a compression is really not and that's just the way those dorsal nerves are down there or maybe there is a compression elsewhere too in other areas (this is my opinion now but I'm not sure) He also said there is a small chance of re entrapment.... Some other user in this community told me that other doctors such as Michael Hibner MD does do surgery for pudendal surgery but does NO longer the dorsal decompression surgery (not sure if this is accurate). I don't assign any blame to Dr. Aszmann, he's a good plastic surgeon and it was actually me whom approached him and really wanted surgery asap. I'm still looking for answers and will consult other doctors and I'm waiting to see if the MRN is helpful... I'll post with some more updates in time....