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Real members of MyLupusTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

I haven’t been diagnosed yet with these two similar conditions “Pelvic Congestion Syndrome” and “Interstitial Cystitis.” Does anyone on MLT

A MyLupusTeam Member asked a question 💭
Belleview, FL

have any of these conditions? And can they be related to Lupus in some way? Both conditions can mimic a UTI and they cause severe pelvic pain that doesn’t go away. Only pain meds can temporarily help, if at all. Antibiotics do nothing as well because it’s not an infection. Would appreciate any kind of information that will help me understand these very similar conditions. Thank you in advance (TYIA) 💜🦋💜🦋💜🦋💜

August 7
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Answer Summary

Members responded warmly to a question about Pelvic Congestion Syndrome and Interstitial Cystitis and their possible connection to Lupus,... Read more

Members responded warmly to a question about Pelvic Congestion Syndrome and Interstitial Cystitis and their possible connection to Lupus, sharing that IC is fairly common with lupus and may have an autoimmune component. Several members with IC described managing symptoms through strict elimination diets, avoiding acidic foods like peaches, tomatoes, and onions, and keeping a food diary to track triggers, with some also mentioning medications like Elmiron and procedures called distentions. A recurring theme was that learning to tell the difference between a flare and a UTI takes time, and listening to your body is key to finding relief.

MyLupusTeam

Those are really great questions, and it's clear a lot of thought and research has gone into understanding what's happening. 💜 Pelvic pain is actually quite common among people living with lupus, and many MyLupusTeam members have shared similar experiences.

Yes, lupus can absolutely be connected to persistent pelvic pain Show Full Answer

Those are really great questions, and it's clear a lot of thought and research has gone into understanding what's happening. 💜 Pelvic pain is actually quite common among people living with lupus, and many MyLupusTeam members have shared similar experiences.

Yes, lupus can absolutely be connected to persistent pelvic pain. Here's why:

- Lupus causes widespread inflammation, which can affect the muscles, joints, and bones in the pelvic area
- The immune system is weakened, making the body more vulnerable to infections and other complications
- Lupus can affect the kidneys and urinary tract, which can cause pain that feels very similar to a UTI — even when no infection is present
- Lupus may affect how the brain and nerves process pain, a phenomenon called "central sensitization," which can make pain feel more intense than expected One MyLupusTeam member shared, "I have pain in my pelvic area, and when it's bad, it's hard to walk." Another said, "I have recurring pelvic pain." So this experience is far from uncommon in the community.

Because lupus can mask typical signs of infection or inflammation, symptoms can be tricky to pin down — which is exactly why getting a proper diagnosis matters so much.

The best step is to speak with a rheumatologist and possibly a urologist or gynecologist together, so they can look at the full picture. Keeping a detailed symptom journal — noting when pain occurs, how long it lasts, and what makes it better or worse — can really help your doctors narrow things down faster. 💜

August 7
A MyLupusTeam Member

How are you feeling, Cindy? I agree with @MiaButler--you are a sweetheart!😘💕

September 5
A MyLupusTeam Member

Praying for you sweet Cindy. My encourager when no one else does. God bless

September 3
A MyLupusTeam Member

I'm sorry you're dealing with this, Cindy. Interstitial cystitis is fairly common with lupus and can be autoimmune, but healthy women get it, too. Eliminating acidic foods and other foods that aggravate the symptoms can be helpful, so a food diary is worth considering to see if there's a connection.

Pelvic congestion syndrome usually occurs in women who have had multiple pregnancies and is often associated with varicose veins, and I don't know of a connection with lupus, though there may be one. I hope you get answers and relief soon, my friend.💜😘

August 8 (edited)
A MyLupusTeam Member

I'm so sorry your not feeling good but I'm happy your back maybe knowing how much your missed it will brighten your day

August 8

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