When Your UTI isn't a UTI—It's Interstitial Cystitis
One in five people with vaginas will suffer from a urinary tract infection (UTI) at least once in their lifetime. If you’ve ever had one, you’re all too familiar with the burning urination and constantly feeling like you need to pee. But if these symptoms are lasting more than six weeks, and accompanied by painful sex, then you may have interstitial cystitis (IC) or painful bladder syndrome (BPS).
Interstitial cystitis is a chronic inflammatory condition of the bladder lining that causes pain and pressure in the pelvic area around the bladder. It’s symptoms like frequent, painful urination often overlap with those of a UTI. However, interstitial cystitis is not an infection, and if you take a urine test, your urine culture results will be negative, meaning you don’t have an overgrowth of bad bacteria, as with a urinary tract infection.
IC affects 3 to 8 million people with uteruses. (Please note that we are discussing interstitial cystitis unique to people with uteruses, although the chronic pelvic pain condition can affect people with penises, too.) That range is so wide because chronic pelvic pain conditions are so difficult to diagnose—and treat. In fact, IC can affect you emotionally as much as it does physically, so once diagnosed, you may be able to manage IC symptoms with diet, warm baths, and eliminating stress. Tincture anyone?
What Causes Interstitial cystitis?
Like most chronic pelvic pain conditions, the full causes of pelvic floor dysfunction are still unknown. Doctors can, however, link Interstitial cystitis to conditions or events that affect the urinary tract or bladder. Possible factors include:
A leak in the protective lining of the bladder known as the epithelium, which allows toxic substances in urine to irritate your bladder wall.
A mast cell is a specific type of inflammatory cell that releases histamine and other chemicals that can lead to IC/BPS symptoms.
Something in the urine that damages the bladder.
Changes in the nerves that carry bladder sensations so pain is caused by events that are not normally painful (such as bladder filling).
The body's immune system attacks the bladder, which is similar to other autoimmune conditions
Bladder trauma such as from pelvic surgery
Bladder overdistention caused from “holding it” for too long or too often
Bacterial infection such as cystitis
Primary neurogenic inflammation (hypersensitivity or inflammation of pelvic nerves)
Spinal cord trauma
Factors Associated With Higher Risk of Interstitial Cystitis:
People with uteruses are diagnosed with interstitial cystitis two to three times more often than people with penises.
Your skin and hair color Fair skinned and/or red haired people have a higher risk of interstitial cystitis.
Age. Most people with interstitial cystitis are diagnosed during their 30s or older.
Having a chronic pain disorder Interstitial cystitis may be associated with other chronic pain disorders, such as irritable bowel syndrome or fibromyalgia or recurring bladder infection which may inhibit the growth of cells in the bladder tissue.
While no specific behaviors (such as smoking) are known to increase your risk of IC, certain foods may make symptoms worse, and it may be hereditary, so it’s important to ask your family members about their health history.
Pain Areas & Symptoms of Interstitial Cystitis
If you’ve ever had a UTI, you know how frustrating it is to feel the urge to pee, but unable to relieve yourself. People suffering from interstitial cystitis may feel this constantly; some report having to go to the bathroom 60 times a day. The frequency and urge to urinate disrupts daily life—travel, work, sleep, sex, all of which can lower one’s quality of life.
Symptoms range from mild to severe. For some patients, the symptoms come and go, but for others they don't go away. Although the symptoms are similar to a urinary tract or bladder infection, interstitial cystitis is not an infection (although symptoms may worsen if a person with IC also contracts a UTI) and lasts for more than six weeks.
Interstitial Cystitis Signs & Symptoms
- General chronic pain in your pelvis
- Painful perineum (the area between the vagina and anus)
- A persistent, urgent need to urinate
- Reduced bladder capacity leads to frequent urination, often in small amounts throughout the day and night, which disrupts daily life and sleep schedule
- Pain or discomfort while the bladder fills and relief after urinating
- Painful urination (dysuria)
- Pain during or after sex (dyspareunia)
Diagnosis Options for Interstitial Cystitis
There is no specific test to officially diagnose or rule out interstitial cystitis. However, if you’re experiencing typical symptoms and a negative urine exam showing no infection or blood, then IC should be suspected.
Your doctor may also perform a physical and neurological exam to look for the source of your symptoms, or rule out other health issues whose symptoms overlap with IC .They will likely examine your abdomen, pelvic organs, and your rectum. Physical exams include:
Urodynamic evaluation measures your bladder pressure as it fills and empties. If you have IC, your bladder will have a small capacity and you may feel pain while filling.
Cystoscopy inspects the inside of the bladder for ulcers or cancer. If ulcers are present, and you are experiencing other symptoms of IC, a diagnosis is fairly certain.
Bladder biopsy can help rule out other bladder diseases. If you have bladder stones or tumors, IC can most likely be ruled out.
A neurological exam may help rule out other problems, since those with IC can have other mental health and/or anxiety disorders which may be linked to their condition—although there is really no way to determine if either are the case or the effect of the other.
You may be asked to fill out a series of questionnaires to figure out your baseline pain to help label your pain location(s), intensity, and other characteristics so that you and your doctor can come up with a pain management plan.
Treatment Options for Interstitial Cystitis
There’s no “cure” to interstitial cystitis, so treatments aim to control symptoms. Most treatment plans are done in phases to monitor pain and quality of life. Be sure to be open and vocal about your pain, symptoms, and concerns.
Most treatments are aimed at symptom control. IC/BPS treatment is often done in phases with constant monitoring of your pain and quality of life. It is important to talk to your health care provider about how your treatments are working so that together you can find the best treatment option for you.
Stay hydrated to reduce constipation and prevent your urine from becoming too concentrated or acidic
Warm bath infused with epsom salts or Tonic
Pelvic floor relaxation exercises Note that pelvic floor strengthening exercises like kegels are not recommended for patients with IC as it could make symptoms worse
Limit Stress Emotional and mental stress can worsen IC/BPS symptoms. Patients are encouraged to come up with healthy coping methods
Elimination Diet and Limiting Certain Foods & Drinks Most (but not all) people with IC/BPS find that certain foods make their symptoms worse including citrus fruits, tomatoes, chocolate, coffee, alcoholic drinks, caffeinated drinks, carbonated drinks, spicy foods
Electric nerve stimulation
Ultra sound therapy
Ulcer cauterization and injection
Surgery can be offered to patients with severely limited bladder capacity or severe symptoms that have not responded to other therapies. Most patients do not require major surgery for this condition.
Q & A with Christine McManemin
Christine McManemin @christinemcmanemin (she/her) is a New York based hairstylist and fiber artist. As someone who works with clients and is often on her feet all day, interstitial cystitis has disrupted not only her work life, but her relationships and mental health. Christine has spent years managing her symptoms and shares what has (and hasn't worked) for her.
What would you recommend to someone who is trying to find the source of their discomfort?
Go to a specialized doctor like a urogynecologist who can better determine what you have. I recommend going to a younger doctor because they tend to be more aware of newly researched conditions like IC. I went to an older doctor at first and he didn't know how to deal with it properly. It took about six months for doctors to pinpoint what I have: interstitial cystitis and endometriosis.
Once I tried an elimination diet for IC, I started feeling better, so it was more clear that was what I had. It was a lot of trial and error and took me about two years to better manage my symptoms, but everyone is different. I recommend trying one treatment method at a time so you can better determine if it works or not.
What products or methods have you used to help alleviate your pain?
Heating pads and warm baths with epsom salt and baking soda for some immediate relief. Physical therapy and TENS machine for pelvic floor rehab. Acupuncture works great at relaxing muscle tension and relieves stress. Various herbal supplements and teas (marshmallow root capsules, peppermint tea, chamomile tea) Number one thing (for me) is following the IC diet restrictions and managing stress.
It's different for everyone, but for me it's no alcohol, caffeine, citric acid, fermented foods, spicy foods, etc. Basic rule of thumb, if it would burn an open wound it would probably hurt your bladder.
How does chronic pain affect your day to day life?
I was in more pain when I didn't know my food triggers. I used to call out of work and be in a lot of pain. I flare up a lot less now, but I still have chronic pain and discomfort. I use the bathroom frequently, so that can interfere with travel, going out, and a busy work day. I also can't drink alcohol or caffeine, so going out can be uncomfortable at times. When people ask, “Want to get a coffee or a drink?” it can feel awkward having to explain myself or just simply saying, "no thanks" to people.
Chronic pain also affects intimacy and your mental health, which I would say are the most difficult to deal with. Accepting your condition and putting your health and comfort first is most important! Cancel plans if need be and don't be hard on yourself about it.
How did you come to find out your condition was IC and not another condition characterized by pelvic pain?
I'm still not 100% certain, because there is no test that will give you direct answers. I'm 98% sure though, because all of my symptoms point to it and the IC diet has helped a lot. I've gone to several doctors that have all said I probably have IC after making sure nothing was wrong with my ovaries via ultrasounds, and that I didn’t have any STDs that could cause pelvic pain. It's all trial and error and requires a lot of patience.
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