sjogrens syndrome personal blush

Discussion in 'Fibromyalgia Main Forum' started by mymichelina, Oct 16, 2006.

  1. mymichelina

    mymichelina New Member

    I have sjogrens syndrome but have more symptoms than just eyes mouth and skin. I have an atropic vagina, meaning my vagina has atrophied, dried up. This as you can imagine is personal, but it is also painful (even wiping) and makes sex almost non-existant. I am 45...my hormone tests have benn taken over and over and I am barely in the peri-menopausal stage. Doc gave me FEMRING any how to try to increase lubricant but it does not help. They said sjogrens syndrome can do this. Does anyone else have this symptom or am I the only freak with yet ANOTHER abnormal symptom? Sorry if I embarrased anyone.
  2. munch1958

    munch1958 Member

    I too suspect I have Sjogrens too but can't find a doctor to do the recommended tests to prove it. I'm sick of hearing that it can go along with my sarcoidosis. In spite of "normal" lab tests (FSH & LH) which show I'm not in menopause the dryness is unbearable. I'm swishing water in my mouth constantly but how do you "gargle" the other end?

    The most helpful thing that I have found is a compounded estrogen testosterone gel. I was having trouble just sitting in a chair without feeling like my clothes were stuck to me.

    I found this on a menopause website -- Google power surge. As suggested, I did the saliva test through the compounded pharmacy they use. My insurance paid for it.

    I also recommend highly using their hormone consultant program too. That's how I got some concrete proof to show my doctor that the amounts of hormones he had been prescribing was not adequate for my needs.

    On a humorous note...My 27 year old daughter was horrified to learn that her vagina has a shelf life. She had no idea it could shrink or dry out.
  3. lv2sing

    lv2sing New Member

    My doctor, before she moved, told me that I needed to be using Premarin cream, PLUS my oral hormone replacement therapy (I am in surgical menopause, for 15 yrs now). My GP had told me I didn't need both. Now that I see him after she moved, he listens to me! I actually shouldn't even be in perimenopause yet if it weren't for the hysto.) BTW, we are the same age...
    She also told me that Astroglide lubricant is a thicker consistency, & she also told me that having relations more will help w/ the thinning. But if you are atrophied, I would think your doctor would go ahead & let you try the Premarin cream. My past doc told me I should use, at 1st, 2 full tubes inserted, daily, for 1 week, then go to 1 tube daily a week, then 3rd week, just 2-3x a week from then on. So make sure you get lots of refills. You might write this down for your OB-GYN. Mine was a lady, & she was very knowledgeable about HRT, since she also had a hysto at the same age as me at the time. I really miss her, because she was the only GYN that was knowledgeable about Sjogrens. She's 3 hrs away now, but it's almost tempting to drive that long to get into her office. It's no further than I drive to see my family...
    I hope I didn't embarass anyone either, I wasn't trying to. I was only being truthful...& trying to help a fellow Sjogrener out.. So, forgive me if I bothered anyone!
    I wish you good luck.. as far as things being about non-existent, same for me. Everyone I have ever talked to online that has Sjogrens all say the same thing. I don't know if it's from the disease itself, or just because of the dryness. It would be interesting to find out. Anyway, I wish you well. :)
    [This Message was Edited on 10/16/2006]
  4. mymichelina

    mymichelina New Member

    Thanks for the communication and I am going to see about the creme. Hugs to all!
  5. tcpolchies

    tcpolchies New Member

    Hi! After reading this post I too have had much dryness in mouth, skin and both vaginal and recal area. I have not been DX with this syndrome but my labs indicated this was a possibility along with other suggested diseases (LUPUS, MS,crest syndrome)ect... speckled pattern. The doc simply said it was nothign to worry about and that they would monitor my conditions - organs. This was back in 2001 and since the increased dryness is driving me nuts to. Im curious to know if you had any sympotoms other than dryness in the vaginal area? About a year ago I noticed some pinkish - clear discharge from my vagina. Went in to get CK out and no cancer cells. Doc also said it was not perio- menopausal. Got a second opinion and was told to have sex....period. Thats wont happen cause I suffer from PTSD and am a times neurotic when it comes to relations. So...thanks for the tips but if oyu could answer my wuestion I would be so grateful to you!

    TC
  6. lv2sing

    lv2sing New Member

    You might go online to the Sjogrens Syndrome Foundation website, & it will give you all the symptoms. Dry eyes, nose, ears, joint pain, dry skin, parotid gland & salivary gland infections. It can effect your internal organs also in advanced cases, so you might want to read up on it, & see a rheumy if you think you might have it. Good luck!
  7. mellow

    mellow New Member

    Hi - I have just been diagnosed with Sjogrens after feeling as if I was crazy for a long time. My Rheumy didn't pick up on the cluster of symptoms I complained about and wrote me off as "difficult". I have had RA for 20 years and other symptoms for the past 8-10 years. I thought Sjogrens meant having dry eyes, mouth, etc. but there are other symptoms including fatigue, muscle pain etc. I was finally diagnosed by an Immunologist and am currently being treated with meds. Lets hope things improve. At least I know it's not "all in my mind".
    I know how you feel with your "symptom" - but, at least, it is a medical condition and can be controlled - more or less!
    Love
    Mellow