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Do you experience penile numbness?

Discussion in 'Neurological/Neuro-sensory' started by lauluce, Nov 18, 2016.

?

Do you experience some sort of sensibility loss at your penis? what kind?

  1. numbness, total or partial

    5 vote(s)
    27.8%
  2. cold

    3 vote(s)
    16.7%
  3. heat

    1 vote(s)
    5.6%
  4. pain

    4 vote(s)
    22.2%
  5. pressure

    1 vote(s)
    5.6%
  6. all of them

    0 vote(s)
    0.0%
  7. none at all

    9 vote(s)
    50.0%
Multiple votes are allowed.
  1. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    argentina
    That, I experience numbness in a large area of my penis, which is nearly total at the glans as i cant feel any soft tactile stimulus (passing a soft cloth over the glans skin, passing a finger, etc). I also cannot tel where in space my glans is without seeing it. It is however, sensitive to pressure, heat, cold, and pain to a degree. Clearly is also sensitive to something you might call "sexual stimuli" as I can enjoy sex to a degree and reach orgasms... after 40 minutes sadly). This may sound a little out of place to some, but I think sex is an important part of life and it being disrupted by disease is a serious matter. I of course have tenths of other ME symptoms including decreased sensibility at hands and feet, to name some related to this, but I'd like to discuss this particular symptom in this thread. Any input would be appreciated, thanks!
     
    frog_in_the_fog likes this.
  2. Cheesus

    Cheesus Senior Member

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    You need to include an option for none.
     
    barbc56, lauluce and *GG* like this.
  3. AndyPR

    AndyPR RIP PR :'(

    Yeah, agreed. The symptoms you describe I don't personally recognise. My initial reaction was go see a doctor about this but I guess you have already? Sounds like the kind of nerve damage that can happen with diabetes to me (please note I have had no medical training, this is therefore not a reliable diagnosis).
     
  4. charles shepherd

    charles shepherd Senior Member

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    This is a rather unusual survey for an ME/CFS discussion forum - because penile numbness is not a characteristic or diagnostic symptom of ME/CFS

    Having worked in a large teaching hospital sexual diseases medicine dept, I have obviously dealt with this distressing condition (i.e. penile numbness) on a number of occasions

    It has a number of possible causes - one of them being nerve damage from diabetes or MS, as Andy has correctly pointed out. But there are several other reasons…..

    So if anyone with ME/CFS has penile numbness then they MUST go and see their doc - who can take a proper history, examine the peripheral nervous system, and arrange some blood tests (it can also be caused by low testosterone)

    Useful basic patient information here:

    http://www.healthline.com/health/numb-penis#Riskfactors4

    Dr Charles Shepherd
    MEA
     
    Last edited: Nov 19, 2016
  5. Skippa

    Skippa Anti-BS

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    Nope, it appears to work just fine, I have never heard this in relation to ME... but... it is perhaps important that you mention this, given that men tend to not admit that kind of thing, maybe you will uncover an unspoken symptom that needs investigating if you get many respondents.

    @charles shepherd this is NOT an unusual question don't scare folks off, it might be relevant if other guys started saying "yeah I get this too".
     
    Cohen2, lauluce, AndyPR and 2 others like this.
  6. themjay

    themjay

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    Penile / pelvic pain and change in sensation were some of my first symptoms - along with TMJ pain. They continue to be a major problem. I endured testing for other problems and a cystoscopy but nothing was found and it was written off as "just another" M.E symptom. It certainly may not be a common issue and not in any of the "official" symptom lists, but I think the problem is that there are more overwhelming symptoms, many sufferers obviously don't possess a penis! and it is an embarrassing issue when talking to your doctor who only usually gives you ten minutes to describe the 20 odd other symptoms that are causing your life to fall apart...
     
    lauluce, AndyPR and Skippa like this.
  7. Tammy

    Tammy Senior Member

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    I hope you don't mind a woman interjecting here. To some who replied...... Just because it is not on a list of ME/CFS symptoms means nothing with this illness. Numbness in all different areas of the body have been mentioned a lot in association with CFS/ME so I don't think this is so farfetched. I've had a stocking glove kind of numbness that occurred on all sorts of different areas of my body including my womanly parts. Of course mentioning it to the Dr. would still be a good idea.
     
  8. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    argentina
    done
     
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  9. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    argentina
    thank you for your reply, I guess... no offence intended. Perhaps you have not done enough research on this disease, but the list of symptoms reported by sufferers and even some confirmed by scientific studies is virtually endless. Since at least today nobody knows exactly what ME is, and what is the extent of it underlying anomalies (perhaps yo do, you tell me please) it would surprise no one suffering or informed about this disease to hear that some people report symptoms not commonly acknowledged. In my particular case, and I feel no shame at all in saying it, besides complying to the ccc criteria for ME, and even having some objective confirmation as for example a 24hs double exercise test with CO2 measurement showing PEM, a positive tilt table test for POTS, etc, I have all shorts of pharesthesia, included but not limited to "numbness" and/or a decrease in skin sensibility to many stimuli. At least one of this paresthesia have been somewhat confirmed: a test shows c thin fibre impairment in both of my legs, explaining my heat insensitivity at the feet. I would find strange that this large quantity of paresthesias are unrelated to ME and instead are the product of another disease that is casually present. Of course understand that my bad English is a product of it not being my primary language. Sadly, part of the face many ME sufferers face is that there´s not a single ME community in our own language. Again, i would like to say that I feel zero shame talking about the sexual/genital symptoms that any disease can cause, I'm not ashamed of sex or my genitals and I know you and mostly everyone is a product of sexual relationships and also have genitalia, one kind or the other. I believed doctors where not afraid of these things... well, goodbye and have a good day
     
    Last edited by a moderator: Nov 18, 2016
  10. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    argentina
    thank you for your insight, I´m not surprised at all to hear that for the very reasons you cite. The full "ME BOOK" is hardly finished yet, or maybe even the first page is incomplete. One can't be so blind to believe that only the currently known and reported ME symptoms do exist, an nothing else. Doing so goes against common sense, not to mention scientific thinking such at it should be taught at medical school
     
    Tammy likes this.
  11. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    My penis became cold after I became ill with ME. But my whole body became cold-sensitive and my core temperature dropped too - taking synthroid has bumped my core temperature up about half a degree Fahrenheit, decreased my cold sensitivity quite a bit, and my penis is less cold now too.
     
    lauluce likes this.
  12. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    argentina
    good to hear you somewhat improved... well, there is another ME suferer with penile symptoms. They are pilling up folks. Mayby the posting dr can learn a thing or two from this thread
     
  13. Kina

    Kina

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    I have removed a number of personal attacks on this thread. It is one thing to criticize the content of a post but when comments turn to posting very rude and negative comments about another member, that is a rule breach. If there are any further personal attacks on this thread, those posting the personal attacks will be immediately banned from the thread.

    Thank you.
     
    Jennifer J, Sushi and lauluce like this.
  14. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    argentina
    well though, those are good reasons for this to be a Me symptom but not be aknoledged
     
  15. Kina

    Kina

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    Seriously, saying that penile numbness is not a symptom of ME is not a reason to call a member pompous, hostile etc, etc. Please show us where in the ICC or CCC documents where penile numbness is mentioned as a symptom. It was a statement of fact. Move on.
     
    Valentijn and lauluce like this.
  16. purrsian

    purrsian Senior Member

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    I notice you mention you have POTS @lauluce - this may be related. I also have POTS and have found decreased sensation when standing and sometimes when sitting (female btw). Lying down, everything is completely normal. Take note of what position you are in when the abnormal sensations occur and whether they are worse with standing or even sitting. You also mention parasethesia elsewhere in your body, so it could be related to that too. Have you mentioned it to your doctor?
     
    Jennifer J and lauluce like this.
  17. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    I'm writing this to help people out, and unite. I think people will agree with what I have to say, but 'forgot' we knew all along, as (per usual), no one helps us out as patients, and we have to do all the work ourselves, due to the people who are meant to help us (government specialists) focusing on fatigue - and thus, the title of this thread immediately to (most people with CFS who are female) would seem weird, but to males with CFS would seem honest.

    Also note, that if this was about Women, no one would bat an eyelid, as Women's 'problems' are well established, respected and discussed (by Women) far more openly than men. The thread thus courted controversy, due to it being about men. Interesting, not because anyone here has any intentional discriminatory thoughts, but because this is how men have steered themselves, into oblivion (in sexual health) and society has just continued and supported this self censorship.

    But we don't make progress unless we talk about.

    Here is why the topic we're discussing is expected in ME males and when I say ME, I mean ME, not Chronic Fatigue, PEM, and one or more symptom (British CFS/ME).

    Firstly I agree with Dr Shepherd that the unrelated and multiple chronic fatigue conditions contained within 'CFS/ME' in the UK or abroad for that matter aren't known to be associated to neuropathy, but inside 'CFS/ME' are many unrelated conditions which makes the lack of evidence of something, not definite.

    For some patients then,sensory neuropathies are a symptom of ME and organic CFS - arguably this may be the wrong diagnosis, (they probably all have autoimmune ME/Lyme - including myself and not Fukuda CFS at all) however, due to disagreement over testing, and how CFS is said to be ME or CFS (of stricter CCC criteria/SEID) these patients are trapped within a 'CFS' type illness - be they males or females with 'numb genitals' or not.

    For example, I myself have a neuropathic pain diagnosis, of which 'numbness' of the private area was reported years ago to my doctor. Naturally, I don't go around advertising this, mostly out of politeness and always as it's taboo.

    The reason sensory numbness of the male private area is not known to physicians, even CFS specialist (biomedical researchers) is down to multiple reasons, I will now list to hopefully make people understand better, and perhaps understand each-other better. In other words, I think we are all in agreement, but we are keeping to our own ideas, because we all have bias, due to seeing ME CFS from our own perspective (normal) rather than a perspective of a complaint, practically no one would have heard of - so naturally it's rejected by many.

    Here's what causes the skepticism in terms of rejecting 'penile numbness' is associated to ME CFS:

    1) CFS and ME are predominantly affecting women. Women don't have mens reproductive organs. This massively reduces the reporting rates of what we are discussing here, because like it or not, CFS and ME are seen and researched (due to sex differences) as a 'Women's disease'.

    2) Patients with ME exceed Fukuda criteria and are excluded from biological research. Thus....

    3) The more severe you are the more likely you are to have nerve damage, or autoimmune CNS dysfunction which elevates pain. Numbness is one way people can report types of pain. Severe grade ME sufferers, are largely excluded from research also.

    4) Genital numbness is a taboo subject as already mentioned and thus is rarely discussed with doctors never mind 'researchers' who due to point 1, would not have come across patients reporting such a symptom, and thus would think their patient is 'odd' reporting or even a little inappropriate if their patients are male and they are female, precisely because they do not expect such a claim to appear in discussions about ME or CFS. If they did, then it wouldn't affect their opinions at all. This is what happens in clinical practice as we all know, what medical professions know and expect you to have, always affects how you are treated as a patient.

    5) Males in general, rarely report such things to their doctors, with females being much less 'shy', because women generally have a good rapport with other women about 'intimate' subjects. Men, largely, are bread to believe discussing such things is a sign of weakness or 'gay', and they learn this in the playground at school where girls in contrast learn it's OK to hug each other or hold hands when friends and this isn't 'gay', but normal.
    This hesitance boys learn, stays with them into adulthood.

    6) Logically, if patients with ME and/or with sensory neuropathies are trapped within a fatigue syndrome, of which is refuted to be organic in nature they won't in addition to this then be reporting embarrassing 'suspect sounding' symptoms, and thus few clinicians will ever have heard of such a thing - making the whole situation almost guaranteed to never be discussed. One exception to this is male impotence or ED. Men are now less shy to discuss this problem, which is you have ME CFS and are male, ED is likely to not be that a rare occurrence because normal functioning of the Autonomic Nervous System is required for male sexual arousal to work adequately for intimacy. Women are saved from this, and don't have to 'perform' to have sex, unlike men. NB: For those who may not have considered the obvious, if you cannot 'feel' your bits, then your bits won't 'work' due to lack of stimulation, which actually then means not only is pain an issue, but reproduction ability - so a serious matter.

    All in all....

    Again, due to points 1 and 2, the more sick you are, the more symptoms you get - but - you are excluded from ME CFS research. So, few would even be aware that there could be an epidemic of sensory neuropathy of a 'private' nature in subsets of ME CFS males but no one knows, primarily due to no research. With no research evidence, clinicians remain blissfully unaware what is going on in the patient community outside of what they read in medical journals like the BMJ/Lancet that focus on Chronic Fatigue, not the consequence of chronic low grade neuroinflammatory disease - such as ME and organic CFS. One consequence of chronic inflammation, would be CNS dysfunction.

    The CNS when dysfunctional, of course, will create symptoms such as numbness, be it in the genitals, or in the face or other periphery - commonly the feet with 'shooting' pains and burning reported - again not a known ME CFS symptom, or should I said a recognized symptom. In my opinion this is it takes years or decades to develop peripheral neuropathy from untreated severe ME CFS, and thus the 'average' person with ME CFS isn't doing a 30 year stretch when it comes to researching 'CFS' patients with blood tests, brains scans and putting then on exercise bikes to test VO2 max. Nope.

    Research has failed, utterly, to spot than in ME CFS - progressive subsets of the disease exist, as due to what we all know and as I've mentioned before, once you don't have unexplained fatigue, you get thrown out of the research studies - such as you develop Diabetes, Cancer, Heart Failure, Asthma, Seizures, Thyroid disease and nerve damage (neuropathies such as we're discussing here) as a consequence of chronic ME CFS - yet to this day, this still is not recognized.

    Peripheral neuropathy, well not a single paper on 'ME/CFS' will report this, but critically here, not researching patients to confirm or deny, doesn't mean these patients don't exist. As it stands currently, there is no test for ME CFS, meaning I can set up a study, tomorrow to prove that neuropathy isn't associated to ME CFS by using Fukuda, using patients sick for a few years and by not permitting people with explained reasons for fatigue (many exist in ME and organic CFS) in my study. Easy. Once autoimmune tests come out, things will change. Researchers light bulbs will switch on in their heads, and they will think that's odd, don't MS patients get this, or don't Diabetes patients get this? And the answer will be yes.

    What the human body can do to someone over 3 months vs 30 years is somewhat different.

    In conclusion I hope this helps people understand that:


    *Men are often trapped with embarrassing complaints that due to established protocols, they won't report.
    *Both sexes with ME CFS aren't believed anyway, so the last thing they will do is tell a doctor.
    *The doctor won't believe them, as there is no research associating their complaint to ME CFS
    *The people who would have reported this, are usually to sick to see a doctor, so the doctor never hears of it.

    Combined, the exact response we see in this thread occurred, not due to any nastiness, but due to the inevitable process of patients having different illnesses but all being told they have the same thing! Researching a far too wide spectrum of patients diagnosed with no test, and in addition excluding people with explained reasons of fatigue, (of which neuropathy is also associated to} will always end in situations such as the patients themselves, not realizing what's going on.

    Meanwhile a tiny proportion of people get rich off our suffering - the confusion we experience everyday, from all angles. Science is meant to overcome this, but currently, politics is preventing real science from taking place, due to the paucity of funding, and due to an incorrect focus on 'fatigue' being the core problem.

    On a lighter note, anyone with even basic clinical experience is well aware that neuropathy is felt in 'sensitive' areas, including the genitals, and thus if someone with an autoimmune disease claimed to have developed neuropathic pain in the genitals, I wouldn't be at all surprised.

    As we know that 'CFS' and 'POTS' are increasingly linked to some kind of autoimmune process, then have confidence that the central nervous system damage you experience causing pain and numbness in any part of your body, although nasty, will be explained sooner rather than later

    As is stands, that's all we can do for now until we find the pathogens/inflammation/immune dysfunction that causes so many problems, in a body.

    Thanks.
     
    frog_in_the_fog, Jan, Skippa and 4 others like this.
  18. purrsian

    purrsian Senior Member

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    I've had this response from things that the ME/CFS would consider either common or at least not unusual. Things like I never get colds/flus, I bruise super easily, I have sinusitis type symptoms with nothing present on scans or tests and the intensity of those symptoms is very closely tied to the intensity of all of my other symptoms. Any time I mention things like this, it's "hmm that's odd" then they continue on with the appointment like I didn't say anything.

    There's also a vast range of co-morbidities common to our condition, so while CFS/ME may not directly cause these gyno types of issues, it definitely can cause problems that could lead to these issues. For me, I can definitely relate decreased sensitivity to posture due to my POTS, but it's not something I've ever read about elsewhere. I assume others have experienced it, maybe not all POTS patients (probably because most are smarter than me and don't try any sexy times while standing in the shower...:rolleyes:).

    I agree with @Research 1st that we're all on the same page, just from different perspectives.

    To anyone having these types of symptoms, it may be worth investigating with your doctor if you can't pinpoint it to other current symptoms or conditions (such as POTS or other neuropathy problems). You wouldn't want to ignore it assuming it was somehow related to your overall condition but have a completely unrelated issue that could be otherwise treated. I know it sucks talking to doctors about gyno stuff and possibly being examined, but doctors look at and talk about ALL kinds of things - it's a part of their daily job.
     
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  19. charles shepherd

    charles shepherd Senior Member

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    I'm very sorry if anyone was upset by my (possibly rather direct) reply to this question.

    I have therefore edited my opening sentence

    The point I was trying to make - having worked in sexual medicine in the past and having spent over 30 years seeing people with ME/CFS - was that this is not a characteristic or diagnostic symptom of ME/CFS, and it is a very long time since I saw a patient, or heard from a patient with ME/CFS who had penile numbness

    I fully accept that people with ME/CFS sometimes experience unusual sensory symptoms in different parts of the body - something I go into in some detail in the Clinical Assessment section of the MEA purple book

    But when this occurs, especially if it occurs in an unusual site like the penis - as is the case here - then other explanations MUST be properly investigated and excluded before it is concluded that the cause may be ME/CFS

    In relation to sensory distrubances, here is the basic information that I provide to our members when they report having some form of sensory disturbance:

    Brief notes on sensory symptoms:

    1 There are a number of neurological symptoms involving sensation - loss of sensation, increased sensitivity to touch/pain, unusual sensations/paraesthesiae/'pins and needles' - that can occur in ME/CFS. However, it is sometimes very difficult to know whether they are part of ME/CFS, or a sign of another medical problem

    2 Other causes of sensory symptoms include vitamin B12 deficiency, diabetes, hypothyroidism, MGUS/monoclonal gammopathy of unknown significance, Sjogren's syndrome - all of which can cause numbness or tingling in the hands and feet and balance problems

    Sensory disturbances can also occur in anxiety and when people overbreathe/hyperventilate.

    Reliable source of more detailed information:

    http://www.nhs.uk/Conditions/Peripheral-neuropathy/Pages/Causes.aspx

    3 So it is important to properly investigate these symptoms, especially where they are more pronounced, or have more unusual features, or occur in unusual parts of the body

    4 The investigation of sensory symptoms in ME/CFS is covered in more detail in the Clinical Investigation section of the MEA purple book

    If the problem continues, and your GP cannot provide a satisfactory explanation, I suggest you ask your GP if you could have a referral to a neurologist with an interest in ME/CFS - such as Dr Abhijit Chaudhuri at Queens Hospital, Romford, Essex

    Dr Charles Shepherd
    Hon Medical Adviser, MEA

    MEA purple book:

    http://www.meassociation.org.uk/201...ch-masterwork-is-published-today-1-june-2016/

    [​IMG]
     
    Last edited: Nov 19, 2016
  20. frog_in_the_fog

    frog_in_the_fog Test Subject

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    I have never made the connection, but it all makes sense now. Thanks @lauluce for starting the conversation. Now we have another symptom we can throw under the me/cfs umbrella.
     
    lauluce likes this.

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