Hello. I am new here. I was diagnosed with secondary sjogrens a couple of years ago and am thankful that it has been relatively mild thus far. I have been having pain and cannot determine if it is my vaginal or urethral area. I have been to both the gyro and a urologist and beyond some angry red and dry tissue noted by the gyno, they don’t see what could be causing my pain. The urologist put me on an abx though everything tested negative for infection. My symptoms improved for awhile, but has returned though not as severe. Has anyone here had anything similar? I did a search before posting this question and didn’t find anything posted previously. Thanks in advance.
http://www.med.nyu.edu/content?ChunkIID=11483
http://www.mayoclinic.org/diseases-conditions/interstitial-cystitis/basics/definition/con-20022439
Hi Felicity,
I posted a few thoughts, but please realize that I am NOT a Physician, and surely one you have seen would have diagnosed either. I also know from experience that spinal injuries, degeneration can cause pains of this type. An MRI of the spine would surely be of help here! If you see a Chiropractor, they can tell you exactly which rib and disc area of the spine would be a direct link to this area of the body, as would an acupuncturist.
I know it's frustrating when you have something like this occur, but cannot get a solid answer. I hope that the group will also have some possible suggestions for you to explore.
Wishing you well,
SK
Thank you for your response and links. I am self diagnosing urethral syndrome. I am pretty disappointed in my urologist for not suggesting it given my medical history. And I am married to a chiro. :). Love that suggestion. Thanks again!
I agree with SK that interstitial cystitis/urethitis and vaginal dryness are the most likely cause.
I have had these (not vagina as I am male) very badly. The medics said you're male must be prostatitis!!!!!!!!!
I proved it was as above but they didn't know how to treat it at all. As you they threw antibiotics at it no result then prednisolone (minor effect). I told them the only effective therapy was low dose ciclosporine.
Hm = brick wall evetually rheumatologist over ruled urologist and agreed with me. Some improvement but I am left with a "ladies" bladder ie no control when I need to go well ...! plus irritated urethra.
I had severe inflammation in my urethra and bladder and MANY infections and antibiotics for 12 years before I got diagnosed with Sjogren's. I did my own research because no urologist could come up with a reason for it, and they all did the same tests, catheterizations, antibiotics, etc. until I just QUIT. They were doing nothing to help. I got a book called "To Wake in Tears" by Catherine M. Simone which started me on my journey toward more natural ways of coping with it. I also self-diagnosed Interstitial Cystitis because no doctor suggested that at all. They acted like I was to blame somehow. Well, long story short...I learned all I could about herbal teas and the different herbs and what they were good for (anti-bacterial, anti-viral, anti-fungal, etc.). I found a time when I was totally free of bacteria in my urine and THEN started making herbal teas and drinking them daily. Marshmallow Root was the staple. It helps protect the lining of the bladder. I sometimes added Chamomile and Eucalyptus for the anti-bacterial properties. I drank about 10 oz. of this tea a day. Glory BE! I went over a YEAR without a bladder infection. That was unheard of in 15 years! Catherine Simone wrote another book "Along the Healing Path", which is a follow-up to the first book. The books were great for gaining knowledge about the herbs, but you MUST do MORE research on them! Learn what NOT to do, also, because certain herbs are too astringent for a raw and inflamed urethra and bladder. Acid food and drinks are killers. They set me on FIRE! Cranberry juice, which is GOOD for most people, is one of the WORST things for people with Interstitial Cystitis.
This is just my experience. I have had more relief since starting the herbal teas than I have had in YEARS. A low-acid diet is a must. I hope something here will be helpful for you. It sure was for me.
Thanks for your thoughtful replies. I will definitely look into some more natural ways of treating. I found a site yesterday that a gentleman wrote saying the same thing. Acidic urine and supplements he uses. http://www.urethralsyndrome.ca But he does recommend caution as with all supplements to consider other factors. One of them is contraindicated if you have heart issues. Looks like I have some reading to do.
Felicity … I have to say WOW! Because I have that same thing with the urethral pain 
ughh how frustrating it is, is right!! Ive always had recurring UTI’S and bladder issues since i was a teenager…Had a few pelvic surgeries in my early 20’s then ended up with a Full Hysterectomy by 25yrs old… Anyway, that definitely triggered more issues it seemed. But Since i started having more of the ss symptoms and i also have SLE lupus, my bladder issues have even gotten worse. I giggle a little cause i feel like im looking in a mirror with you 
I too recently have gone to gyn and urology and they did the same as they did to u… Antibiotic once a day and that numbing pill they give u if u have bladder pain geez what a joke! I dont show active infection in my urine but I do have white cells and small amount of blood in it (says the test results) ?? I guess we are just suppose to feel more uncomfortable then we already do with what we deal with huh?! 
i feel your pain and frustration hugs to u!
Oh Felicity, I would LOVE to be married to one! I have so much respect and admiration for them as they single handedly have kept me on my feet!
Felicity said:
Thank you for your response and links. I am self diagnosing urethral syndrome. I am pretty disappointed in my urologist for not suggesting it given my medical history. And I am married to a chiro. :). Love that suggestion. Thanks again!
Hi,Felicity,
Finally someone is describing what I suffered with (I believe) for over a year. At first I thought I had a bladder infection or a yeast infection. It was very painful to sit, urinate, walk, etc. Even the HMO docs could not figure it out. I thought I wasgetting a bartholin cyst or swollen glands. At last after many visits to various docs including a urologist, two GYNdocs diagnosed it as vulvodynia. It was very painful but the worse part was the HMO docs said there was nothing wrong with me.I eventually got better but it was a slow process. When I felt better I started yoga. There are some yoga poses which help the area down there! Some poses address the lymphatic system too. One GYN prescribed garabalin (not sure of the spelling) which is used for depression and other symptoms but I refused to take it. The other GYN did not want me to take this drug. Knocking on wood that I never get this again!!! Can't believe that two of the HMO doctors in the group I am assigned to did not know about this condition!!!! Those HMO docs want you to think that they can address female health concerns yet they had never heard of vulvodynia!!!!! It's on the internet!!!!! Hope this was helpful.
2akl
SjS and interstitial cystitis is a common combo and really bad to have. If you haven’t tried the IC diet yet, it may help over several weeks, or not. Elmiron is a drug they say helps. I have weekly bladder infusions with a cocktail of drugs including DMSO that is supposed to help repair the mucosal layer SjS likes to attack. Occasionally I have distentions to stretch the bladder and those can help a long time. I was up for a stimulator, but found out last week it won’t help for pain, so am not a candidate. Next week is an exploratory surgery to be sure nothing else is going on inside my abdomen, but we don’t really expect to see anything. Seeing nothing confirms all the trouble is the IC. It will likely cause a flare of both IC and SjS, but since I don’t have the money to get me to Johns Hopkins where everyone agrees I need to be, I am just doing my best to hang on. There are some excellent IC sites and vids you might want to look at. Might not be your trouble, but since it’s so frequently a missed diagnosis, learning all you can about it is probably a really good idea.
Ellen Schnakenberg