NUMBNESS - Pudendal EMG nerve conduction test. PLEASE READ

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JP1985
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NUMBNESS - Pudendal EMG nerve conduction test. PLEASE READ

Unread post by JP1985 »

Hi all. Hoping I have some interesting information (below) but first, just a little about how I got PSSD.. I was taking citalopram for 6/7 years and was perfectly fine for most of it, sex felt amazing. About the last year or 2 of taking it I started getting numbness in my penis, had no idea whatsoever that it could be to with citalopram, I thought it was enlarged prostate because of my weak pee stream so carried on taking them. Then I found this forum and was like shit it could be the citalopram so weaned myself off them. I’ve probably got the same numbness as I did when I was on citalopram and that was just over a year ago so it’s a bit annoying that it’s not really got any better although the odd few days here and there I’ve had amazing sex, but 95% of the time I have the same numbness between 40-50%

Anyway.. I went to see a neurologist about genital numbness in 2019 who referred me to a couple of people, I paid over £1500 on 2 tests. 1 was an MR scan of my lumbar spine which didn’t show anything really and the other one was a pudendal nerve test which showed a possibility of nerve damage. I wonder if the info I’ve got could help someone understand anything more about the nerve damage due to SSRI’s. I suffer with I’d say on average.. around 40-50% numbness. Varies slightly day to day, week to week. Recently I keep reading about people saying the pelvic floor exercises are helping them with sensation and last night I remembered about the pudendal nerve conduction test I had last August. I think I must’ve literally just read the part that says it could recover on its own and then forgot about the results and just went looking for supplements as he also said there isn’t a cure for it (Not that I fully believe that now knowing no docs know what PSSD is) but it could recover alone in time. I can’t think of any way I could’ve ever damaged any of my nerves down there as I don’t ride a bike or horses etc and never had any trauma to it.

After reading the neurologists notes again last night I wonder if there is something in the theory that the SSRIs have damaged the pudendal nerves? I’m not the cleverest with all this so I’m posting it here (BELOW) to see if anyone else can dissect what he says and understand it and if they think it could actually be damage to the pudendal nerve that’s causing the numbness?

What I suffer from:

Low sensation in penis when touched
Weak orgasm that doesn’t last as long as it used to
Slight pain in head of penis almost all the time
Penis feels lifeless a lot of the time (not always)
Very weak pee stream (always)
Struggle to start peeing without pushing hard
Pain in my pelvic floor muscles when having an orgasm (only sometimes)
Burning pain after sex (rarely)
Burning pain after peeing (sometimes)
Low sex drive? Sometimes I can go a week without sex or masturbating, although some days I want it 2/3 times a day (this is normally after a night drinking alcohol)


THIS IS WHAT THE NEUROLOGIST WROTE BELOW...


I am referring to your appointment with me in Spire Manchester Hospital on the 10 June 2019. You saw me because of the decreased sensory in your penis.

I then did an MR head which was normal. The MR of your lumbar spine just showed some wear and tear. I discussed the scans again with my colleagues and the mild compression of the left S1 root would actually not explain your symptoms.

You have now had your pudendal EMG and nerve conduction studies. This was done in Manchester Royal infirmary on the 21 August 2019 and I am really very sorry that this all took so long, but as you probably noticed quite a complex and difficult examination which has to be planned long term and actually only Dr MacDonagh is the consultant who can do this.

We had a look at the results here and the EMG actually showed some chronic neurogenic changes. Therefore, this gave us some evidence that a peripheral nerve problem would cause your problems.
Dr MacDonagh thought that the cause is probably a partial lesion of the lower sacral nerve roots on both sides. However, this is also mild and also could very well recover. I am aware that this has been going on for 2years. Dr MacDonagh and I both agreed that there was definitely no serious nerve or muscle problem causing your symptoms and hopefully this peripheral nerve problem will resolve. There is unfortunately no surgery or another curative treatment which I can think of at the moment.

I am happy to see you at any time again, but I have not arranged another review appointment. If you wish to discuss this further or would like to add further information to your symptoms then please contact my secretary, Jill.

I send you my very best wishes.

Yours sincerely


Dr Stefan Schumacher
FRCP MD
GMC 6158328
————————————

If I’m honest I don’t even fully understand what he said and should’ve gone back to see him again so he could explain it to someone who doesn’t really understand the words he uses! Could pelvic floor exercises actually help us going off what he says? Could muscle be pressing on the nerves or are they damaged for good? Any supplements that could also help this?

Thanks

JP
Last edited by JP1985 on Wed Jul 15, 2020 6:30 pm, edited 2 times in total.
Last pill March 2019 - Citalopram for 7 years
Numbed penis and weak orgasm
Fatigue
Slightly blunted
Dizziness (this has improved a lot in the last 6 months)
Markc1113
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Re: NUMBNESS - Pudendal EMG nerve conduction test. PLEASE READ

Unread post by Markc1113 »

Thanks for posting this. I know Dr Healy has done studies on peripheral nerve issues from ssri. I hope that it resolves, but I am in the same boat. Along with no libido.
john099
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Re: NUMBNESS - Pudendal EMG nerve conduction test. PLEASE READ

Unread post by john099 »

So many nuerologists dont understand pelvic floor dysfunction - they looks soley at MRI of lower back and/or nerve damage - but there are tons of guys on hard flaccid / CPPS forums that all suffer from all those things you described and some have made 100% recoveries. I have seen this personally in the DCT facebook group - over 400 guys all collaborating on hard flaccid CPPS issues. Most all of them have same story of doctors knowing jack shit about the issue. Some have even done surgeries which did nothing. The general consensus is that the tight muscles impinge on those nerves causing those symptoms. So by stretching out those muscles it frees up the nerves. This is why people have been having great success doing ressitance stretching through DCT - dynamic contraction technique.

The problem for us is that these drugs somehow induce pelvic floor dysfunction - and so DCT can be a great tool to help alleviate these symtoms but its not solving the root cause. But some with PSSD have resolved their sexual dysfunction through pevlic floor PT so its still a great thing to do. Ive written a lot about this because what you have is a perfect storm of issues that the medical community knows very little to nothing about: PSSD and pevlic floor dysfunction or hard flaccid. So it has created enormous amount of work to try to figure out the connection of the two. From my own opinion and others on here - PSSD and other drugs induce pelvic floor dysfunction which includes hard flaccid, numbness, pain, tingling, ED, soft glans, cold penis, hour glass shape, lack of morning/nocturnal erections, loss of libido. Many people on here thing these issues are specific to PSSD but they are not- many men get hard flaccid. For us it seems that the drugs have induced it - how? Well that is the question. Meso has written about it and seems to know a lot more than I do. Even problems with histamine can cause pelvic floor problems - which alot of people seem to have too little / too much histamine after getting PSSD.

So in summary, most doctors will have no clue about either PSSD or hard flaccid - they are both extremely understudied - so dont lose hope when your doctor has no idea how to help. There is much you can learn online - also go to a pelvic floor therapist and have them evaluate you to see if you have a tight pelvic floor.

How do we fix this? - well we either solve PSSD or we do symptoms management - like DCT, pelvic floor PT, taking certain supplements (which is risky) etc

Hope this adds to our knowledge
john099
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Re: NUMBNESS - Pudendal EMG nerve conduction test. PLEASE READ

Unread post by john099 »

Probably PSSD induces pelvic floor dysfunction through the pudential nerve - but I dont think its permanent - maybe some kind of nueroinflammation?
Markc1113
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Re: NUMBNESS - Pudendal EMG nerve conduction test. PLEASE READ

Unread post by Markc1113 »

I think what your saying could be accurate. I know my resting flaccid state even seems disrupted for lack of a better word it seems to hang different and even draw up a lot. So it could be some form of entrapment with nerves and muscles around there. I notice much worse shrinkage and discomfort when on my feet or doing physical activity as well even in the scrotum area. So could all be tied together
john099
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Re: NUMBNESS - Pudendal EMG nerve conduction test. PLEASE READ

Unread post by john099 »

Many have noticed improvement through relaxing their pelvic floor or doing PT. It may not resolve issues 100% but could help provide some relief until we have a better knowledge of how to improve PSSD. But the problem is the solution for 1 may be different to someone else due to everyone having different genes etc. That is why this is such a hard thing to figure out. At least pelvic floor therapy wont make you worse like some supplements.
Markc1113
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Re: NUMBNESS - Pudendal EMG nerve conduction test. PLEASE READ

Unread post by Markc1113 »

Yeah. Where do you recommend getting info for the stretches to try?
john099
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Re: NUMBNESS - Pudendal EMG nerve conduction test. PLEASE READ

Unread post by john099 »

There is uptown mike on youtube which is free or you could do DCT - costs about $350 or something not sure - I do DCT and many others with hard flaccid induced by SSRI, Trazadone, Finasteride, steriods, etc

DCT is better - from the consesus of people doing both. DCT teaches you how to stretch out the fascia which could be too tight and restricting bloodflow to the genitals and putting pressure on pudential nerve (numbness)
john099
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Re: NUMBNESS - Pudendal EMG nerve conduction test. PLEASE READ

Unread post by john099 »

Again its not a cure - because it doesnt address the root cause of pssd but it helps provide relief to many - but you have to put in the time and effort and not expect results overnight - also costs money
Markc1113
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Re: NUMBNESS - Pudendal EMG nerve conduction test. PLEASE READ

Unread post by Markc1113 »

Where would I go for dct?
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