Interstitial cystitis: What does hysteria and urine have to do with it?

January 26th, 2020

Interstitial cystitis (IC), often called painful bladder syndrome, is a diagnosis that is often given when everything else has been “ruled” out. The medical community has no diagnostic test for IC, don’t exactly know what causes IC, there is no cure and not all treatments help everyone.

Though IC impacts all sexes, the actual number of people diagnosed ranges widely. According to the Interstitial Cystitis Association (ICA), a US-based non-profit, IC impacts 3 to 8 million females in the United States, 2-3 times more than men*. The ICA has fought to have IC recognized as a diagnosable disease after decades of it being treated has a “hysterical woman disease”.

So, what does IC look like?

  • Frequent urination
  • Urgency, the feeling you have to pee immediately, may include pain or pressure
  • Pain, pain with sex and pelvic pain

People with IC can also have Hunner’s ulcers (inflammation on the bladder wall), originally thought to be a classic symptom of IC, Hunner’s ulcers are rare.

Research has revealed that people diagnosed with IC also tend to have other health issues at higher rates than the general population. Including:

  • Allergies
  • Irritable bowel syndrome
  • Pelvic floor dysfunction
  • Vulvodynia
  • Endometriosis
  • Fibromyalgia
  • Migraine
  • Chronic Fatigue syndrome
  • Sjögren’s syndrome

How do doctors determine if you have it?

As mentioned before, there is no diagnostic test for IC. To get to a diagnosis, likely, doctors will run several tests, include blood panels and urine cultures to rule out other diseases or infections. Often times they run these tests over and over and over, while giving you prescription after prescription of antibiotic hoping to treat a urinary tract infection. They may even do a cystoscopy or urodynamic, again, repeatedly. After the repeated tests come back negative and the antibiotics have not eased the symptoms, you will likely get an IC diagnosis.

What comes next?

In the next post, I will address treatment options for IC, including how psychotherapy can be a part of your treatment plan.

*I am using the term females to include anyone who has a uterus and/or vagina and were given the female designation at birth, and male to include anyone who has a penis and/or testicles and were given the male designation at birth.

The information found in this blog comes from either knowledge I gain through working with people with IC or on the ICA’s website. The ICA is doing great work to try and make strides with IC, and I encourage everyone to check them out and consider supporting their efforts. https://www.ichelp.org

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  • Berrin Boyce on What is the Pelvic Floor?: “Hi Meghan, Thanks for your question! My classic PT answer is: it depends. I often find that people who have more pain with initial penetration or urinary symptoms such as urgency, frequency, or painful bladder, tend to have more tightness in the first layer that makes up the urogenital triangle. I also often find that people who report more pain with deeper penetration have tightness in the third layer. Beyond that, I always recommend if someone is curious about their anatomy, the best way to know is getting an internal pelvic floor assessment from a skilled pelvic floor physical therapist.Feb 24, 04:54
  • Meghan on What is the Pelvic Floor?: “Thanks for sharing! Nice break down of the three muscle layers. In patients with a hypertonic pelvic floor, which of the layers do you typically find the most tightness?Feb 22, 01:36
  • Jessica on I fall asleep by filling my head with thoughts: “Thanks Tamara!Jan 26, 14:48
  • Tamara G Suttle on I fall asleep by filling my head with thoughts: “Jessica, thank you! This is a terrific post filled with practical advice and not too much psycho-babble. I appreciate the work you do in our community!Jan 22, 16:44

 

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