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Frustrations Getting to a Diagnosis

Q:  I have had a positive ANA for years and within the last couple of years have had symptoms including mouth ulcers, joint pain and swelling and skin rashes on my arms and legs. My PCP did a skin biopsy when I had a rash and was indicative of lupus. I also have enthesitis. My most troubling complaint is painful
intercourse which has manifested over the last year or so with the other symptoms. Once aroused there is plenty of moisture but the vulva is very painful. Very recently I have started experiencing swelling on one side of my jaw with pain on eating and general swelling of my lymph nodes. I am very frustrated trying to find an exact diagnosis. The rheumatologist refers me to a gynaecologist for the painful intercourse and merely indicates that she doesn't
know if it's connected to possible autoimmune disease. My PCP has been most helpful but is not specialised. I feel I need somebody to join all the dots together. I suspect I have lupus and sjogrens although the only other symptoms of sjogrens I have is burning eyes particularly when sweating and dizziness on
standing and extreme fatigue. Do you have any suggestions?

A: If you are in the US, the Sjogren's Syndrome Foundation http://www.sjogrens.org will have a list of Support Groups in your area. The Support Group Leader can offer local referrals that are knowledgeable about Sjogren's. You could suggest to your PCP and others on your Team that they can sign-up to receive a Professional Publication, Sjogren's Quarterly, without charge on the same website, under the Professionals tab. There are many GYN manifestations of Sjogren's. Painful intercourse (dyspareunia) can result from vaginal dryness, or other causes of pelvic pain (neuropathies).

If you are in another country, the Sjogren's Foundation also has information on International resources. Some countries, like France, UK, Netherlands have organized groups specializing in Sjogren's. Having a Consultation and suggested management options, may be very helpful to you and your treating physicians.

dr c

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