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sjogren's in men: erectile pain

Posted , 2 users are following.

p7777
p7777

hi,

I'm a 48 year old male with sjogren's...I am unable to have an erection without pain. I am unable to have intercourse. Are there any males that are having the same problem with sjogren's?

1 like, 5 replies

5 Replies

  • pam_87693
    pam_87693 p7777

    Posted

    Hi p777 I am Pam from the FB group British Sjogren's we have a member in our group who is a wonderful chap and I asked him as you are probably aware you chaps with Sjogren's Syndrome are a rare breed! He tells me he is OK in that but as I looked in The Sjogren's Book the bible on Sjogren's there is NOTHING relating to men with Sjogren's in that department! I will inform my Rheumatologist who is the President of the BSSA the charity for Sjogren's about that! To go back to you we, Ken and I both think your problem will probably be caused by the chronic fatigue of Sjogren's. If you would like to join Ken on British Sjögren's you would be most welcome. If you do when you see the link please say your from patient as I tend to be suspicious if men ask to join, they are usually from the other side of the world and are attracted to the British not the Sjogren's 😜
  • kitkatninja
    kitkatninja p7777

    Posted

    Hi mate,

    Pam informed me of this thread.  the effects of Sjogrens can play a part (chronic fatigue), plus also during a flare up you will tend to get muscular and joint pain anywhere from 1 part of your body to all over.  However since you are experiencing pain, I would get it checked out asap, as that could also be a sympton of something else (not trying to worry you, but better safe than sorry).

    -Ken

    • pam_87693
      pam_87693 kitkatninja

      Posted

      Lol oh dear we are a sorry bunch John and I can't stop laughing and he's getting brain fog and pain too but not Sjogren's related. However something I have wondered as I had PCOS, did your mum have fertility problems? As you know I had PCOS if the lady has a son they can have AI problems. Surgeon son snapped well I don't have ovaries! No he doesn't but he has Psoriasis and son 4 has IBS they are all putting on weight and grumbling about their genes they inherited. Of course I am Hypermobile too as you know, so are they its a domimant genetic imperfection of the connective tissue. Sjogren's is a connective tissue disease. Look up Klinfelters in NHS direct. My sons don't have most of the alarming problems but the youngest had gynocomastia which we had operated on the day after his 16th birthday poor chap 
  • dryguy
    dryguy p7777

    Posted

    Hi

    you are not at all unusual. I have the same priblems plus interstitial cystitis and urethritis all caused directly bySjogrens although you will find that 99.9% of all medics are clueless about this and most other manifestations of Sjogrens in males. Even worse if like me you are sero negative! There are several men I know via the internet who have this issue.

    I am a scientist and have a post grad medical degrees well as this most disgusting painful fatigueing and depressing of diseases. It's totally under researched and medics including rheumatologists are igmorant and years out of date on the disease and have no idea about SS in Men. children and young women!!!!!!!!!

    I have no good ideas for tretment but some evidence suggests that lw dose cyclosporine may help but good luck finding a medic who will prescribe in the UK and probably not in the USA either

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