I have pudendal nerve damage

General Discussion
#27

@jrums01 Hey, quick two cents - I’d be very careful with Dr. Goldstein’s analysis. I know he’s very respected around here, and I’ve seen him twice. He’s done a tremendous amount for our cause and I don’t want to belittle his impact in any way. However, my experience was that he gives each patient very little amount of his analysis and time, and throws a lot of disparate ideas around with very little follow through. I found it borderline impossible to have any kind of meaningful conversation with him as he seems to repeat the same diatribe about Finasteride and how bad it is, and doesn’t really ingest your questions or listen to what you’re saying. He’s very very good at prescribing drugs however… Of course, open to anyone else who had a different experience.

If you suspect you actually have pudendal nerve damage; that’s a very serious thing and has a lot of implications. Simply my opinion here, but I would highly advise you get one or two more opinions from a neurological expert before heading down the path of believing you have actual nerve damage.

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#28

Did you consider any of the things he prescribed you to be helpful? I assume not if you’re still on this forum but thought I’d ask as I was considering visiting him this year

#29

No but I was to 2-3 months and then we will switch some things up.

#30

I agree somewhat that he is not fully on top of everything all the time and seems to have the same protocols. I’m not sure his theories are correct. Also don’t these doctors know that hormonal bloodwork doesn’t always matter and often shows normal. Doesn’t mean it is. Our receptors are fucked up. I’m sure he’s aware of this that’s why it’s so hard to treat. I don’t hold much hope either way man.

#31

I spoke to Goldstein again tonight. I’m skeptical of him and his spinal theory of genital numbness. He also thinks this will help emotional numbing. How? Will it also help my insomnia, genital shrinkage, loss of taste and smell, dry, thinning skin, etc.? I swear I am so screwed.

#32

Which ssri did you use again?

#34

That’s bullshit, there is no pudendal nerve damage, i don’t understand how a top Dr. can tell you this bullshit. I can smash his theory in 5 minutes with facts, and i bet there will not be any decent reply from dr.'s side.
I researched so much for last 4 years, this dr. make me laugh.

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#35

Agreed 100%.

#36

I used them all at one point but Prozac was the last one

#37

Hi
What do you mean exactly that it’s BS and it’s not nerve damage? I’m just trying to see what you’re alluding too
Thanks

#38

Hey. I am another PFS patient who went serious side effect and had wishes for death because the period was just way too hard. And I can relate to you how you feel. Right now I am recovered, although I had blurred vision, severe cognitive disfunction and sexual disfunction as well. I got them all back.

Although I may not be a medical expert, I am in college studying chemistry and biology & I have clinical experience as well while serving in the military. I assume although the tests may show your nerves functioning not properly, it may be only the signals not transmitting properly since we took medications that inhibits hormones, which basically are signals.

Sadly, I also agree that although Doctors are respectable for their time dedicated and their IQ, Ive seen many doctors not truly caring about the patients, and they only know what they learnt from textbook and conferences. Ive seen them make a lot of wrong judgements, minor or major.

Sorry about your condition, but believe it’s recoverable as many of the people here did. My prayer goes out to you tonight brother. Sincerely.

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#39

Awesome how you recovered happy for you! You should tell your story in the recovery thread! Thank you for coming here and giving us hope!

#40

I think you and the doctor should have gotten it clear whether he meant temporary neuropathy or damage. When it is really cold or you have been sitting in the wrong position maybe you lose sensation for a bit. It doesn’t mean your nerves are “damaged”. Likewise we may just have inflammation or something that impairs nerve function and isn’t “damage”.

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#41

Exactly. I couldn’t think of a way to explain it any better than this.

Just because there’s lack of sensation doesn’t mean it has to be permanent nerve damage.

#42

Please take Goldsteins diagnosis with a grain of salt. He seems to over exaggerate everyones diagnoses. I received very different reactions from his urologist in the office than him. He approaches his tests from the perspective of “if its not perfect, then you are fucked.” Try to remember that we are prone to believe the words of any doctor who recognizes this as a condition. Hes one of very few. It may be true what he tells you but I guarantee it is made out to be more extreme than it is.

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#43

Have you thought about writing Goldstein to clarify whether he meant temporary neuropathy or irreversible neuropathy? It seems that distinction might not have been made or communicated.

#44

It’s permanent in most cases unfortunately :unamused:

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#46

@jrums01 is no longer with us.

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#47

Jesus :man_facepalming:t2:

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#48

Thats terrible news - had he continued to get worse

Prayers for him and his family