One of the worst and most unfortunate parts of having interstitial cystitis (or related conditions) is the length of time it takes for many patients to be diagnosed and start treatment. I was extremely lucky in that it only took about 4 months, although sometimes I wonder if my doc was too quick to slap on the IC diagnosis.
I have sat through appointments with PCP’s, gynecologists, midwifes, uro-gynecologists, uro-gyn nurses, pelvic floor physical therapists, naturopaths and nutritionists – all of whom had various ideas about what was contributing to my pain and what might help.
These appointments can be overwhelming and disheartening, especially when you’re in pain and just want some damn answers! Knowing what to ask and what to believe can seem impossible.
Below are a list of the things I’ve found to be most helpful to discuss with providers. Addressing these topics has helped me to find solutions quicker. It’s also limited the number of appointments I’ve had to schedule so I can actually move on with my life!
- Pain during your monthly cycle – esp. during period and/or ovulation
- Any significant changes or events – stopping/starting birth control, switching birth control, pregnancy, miscarriage, menopause
- Any chronic or recurrent infections?
- Other mild symptoms that haven’t been diagnosed (itchiness, burning,discharge – even with a negative test)?
- Other signs of yeast overgrowth – headaches, joint pain, lack of concentration, rashes?
3. Use of antibiotics/anti-fungals:
- Have you noticed worse or improved pain when taking prescribed meds?
- Does it hurt more when you’re constipated or after you poop?
- While urinating?
- After urinating?
- During sex
- Accidents where you’ve fallen on your pelvic bone, etc.
- Pain at the start (during penetration *shudder* I hate that word), during or after?
- Increased urinary symptoms in the following days?
- Pain in a particular area or when in a certain position?
- Specific items that have caused increased pain?
- Anything that seems to alleviate pain?
- Is pain worse when you’re stressed?
- Have you noticed a general increase in anxiety or depression?
- Other nervous system symptoms (tingling, numbness, headaches, nervousness, etc.)?
- Sleeping more or less?
- Have you been waking up to go to the bathroom?
- Worse in the morning/afternoon/night?
- Worse after certain activities (sitting for a long time, exercise,sex)?
- When do you feel the best?
Addressing these topics with my providers has helped us to identify other factors that could be contributing to my symptoms, as well as some alternative treatment options. Some may seem strange and/or entirely unrelated but when you consider the proximity of you bladder, intestines and your female parts it all makes a ton of sense!
For example, I was experiencing other signs of yeast overgrowth and adding probiotics and the Pau d’Arco tea has reduced my discomfort. This is not typical treatment for IC and not something your PCP or Uro-gyn will likely suggest. Yet they are simple, inexpensive and powerful options.
If your provider is dismissive and unwilling to look outside the box for your treatment, find another provider. No use wasting your precious time with docs that don’t have your best interest at heart. I’ve found that my pelvic floor physical therapist, midwives and my naturopath doctor are most open minded about alternative (and often less intrusive) treatments.
What did I miss? Anything you’ve found helpful to address that I haven’t mentioned? Share below to spread the word!