Do you feel like you have a UTI (bladder infection) all the time? Are you fatigued and uncomfortable? Do you feel sick and you can't really explain why? Do you get so tired and fatigued when everyone around you has tons of energy? Are your relationships hurting because you don't really want to tell everyone that you private area hurts all the time and it distracts you from handling life well?
You are not alone!!
A few years ago I posted about how I was in the midst of a really long IC flair up. What I didn't say was that on a questionnaire I was sent by a specialist, I circled "sometimes" to the question "Do you contemplate ending your life". I am SUCH AN OPTIMIST and have never before or after ever even thought about ending my own life. But chronic intense pain does things to you you never thought you'd have to go through. Of course I wasn't really suicidal and I got all the help I needed - but just that the thought had crossed my mind to end the pain - that makes me so sad! If you are feeling that way, please keep reading. I am feeling so good now and I want to share the hope!
At the time of my last post, I was trying to control it with my diet, essential oils, and other at-home remedies. But they just weren't doing enough. So in August of 2013 I scheduled an appointment with Dr. Robert Echenburg in Pennsylvania. They couldn't see me until October. I decided to give my all to physical therapy and eat a low-oxalate diet and hope those could help me manage my symptoms until I was able to get a consult.
When I met with Dr. Echenburg in October, I was diagnosed with Interstitial Cystitis, pudendal neuralgia, and myofascial pain syndrome. I don't have time to go into details on all of these, but if you have questions, feel free to email me: email@example.com.
For about three years I've been very focused on healing and have begun to feel SO MUCH BETTER. I still get occasional flair-ups, but most of my symptoms that were most disturbing to my every-day-life are now under control.
Here is how we treated everything:
I was pregnant at the time, so I didn't start taking Elmiron until March of 2014, but I was on Elmiron (300 mg/day) from March of 2014-October of 2016. I did not lose my hair, though my eyelashes and eyebrows fell out in large clumps. They did grow back mostly, though. So that's good :). I really love Elmiron and I may get back on it soon if I can't get this most recent flair-up under control. I take 100 mg in the morning on an empty stomach and 200 mg at night.
This drug requires a post of its own. Ugh. I HATED tapering off of Gabapentin. I began taking it while pregnant with Will. I started at just 100 mg a day, but eventually leveled out at 2000 mg a day. I weigh about 120 and I'm 5'3" so that is a pretty big dose. This was used to treat the neuralgia and I feel like it worked. I could literally feel my brain changing the way it understood sensation.
For someone who doesn't understand nerve pain, certain parts of my body - my hands and my pelvic floor being the most affected, understood every sensation as being painful. This drug re-wired my brain to allow a wider spectrum of feelings.
Sometimes now I have to take a deep breath and say out loud, "This is not pain, this is discomfort." Or "This is not pain, this is just tired muscles".
My issue with Gabapentin is that when I decided to taper off (in January of 2015 when we decided to start trying for another baby - we got pregnant in June with Merit), my doctor didn't give me any idea how hard it would be to end this drug! I will do another post because I just don't have time right now to go into it. I will say that weaning off of Gabapentin was worse for me than childbirth.
People with chronic pain often experience some discomfort from symptoms that arise because our bodies' natural response to pain is to release adrenaline, which releases histamine. So with chronic pain, instead of a quick "boom" of adrenaline and histamine, you have a constant flow of both. Which leads to fatigue and itchiness. When my doctor mentioned this, Steven and I just looked at each other with so much gratitude. So I wasn't crazy! The fatigue was something I'd just learned to live with, but the itchiness! It was one symptom I really hated.
I loved hydroxizene. I feel like it really slowed down my histamine production and helped me to relax. It is also an anti-anxiety drug, so that was pretty nice ;). You can also take benadryl if you want to see if it helps. I took a small dose of hydroxizene at night. 3mg I think. I stopped taking it cold turkey in January of 2015 and I was fine.
Which now has another name. But I can't remember what it is. I hoarded Uribel (it's really expensive) for times when I really, really needed relief. It numbs the bladder and urethra. And I love it.
My doctor was really into prescribing ointments. He diagnosed me with lichen simplex, which is basically just irritated skin. So I used Triamcinolone and a combination of two other ointments (shoot, can't remember what they're called right now, but when I do remember I'll update this post). Email me with questions about these.
Also, I used a litocane gel each night and it stung and burned like heck for the first month or so but eventually I really got to where I liked it. I don't use it anymore because I don't need it, but I have a tube on hand in case I ever do.
Oh man. Yow. I don't know how helpful these were for me. My doctor said that they would bring intense relief and they never did. In fact, I always felt kind of sick for a few days afterwards. But try them. They might help you.
I only did this once, and it was the worst experience ever. I cried for hours and spent two days in bed, unable to move my torso without horrible pain. It was awful. And embarrassing. But again - it might work for you.
I used a TENS Unit during physical therapy and while I understand the concept behind it, I don't feel like it helped me a whole lot. And I felt like it was more important for me to learn on my own, the skills I needed to learn to relax and calm those muscles without the unit.
Physical Therapy and Yoga
I am a HUGE BELIEVER in physical therapy for pelvic floor issues. After all, this part of your body is just another clump of muscles and nerves, just like your back or neck. I went to Sharon at Mauro-Bertolo Physical Therapy in Cicero, NY. There is another girl there who specializes in pelvic floor pain. They are fabulous.
I also did and continue to do yoga nearly every day. I used this very, VERY gentle (maybe too gentle) DVD for people trying to treat pelvic pain. It was so good for me when in the midst of a flair up. I really needed the stretching and relief that came from it. Since then, I can tolerate more intense work-outs so I do more cardi-yoga but I still go back to the same stretches before I go to bed to help my pelvic floor relax.
I did an elimination diet during my horrid 4-month-long flair up and lived on pears, scrambled eggs, dry bagels, and green beans. Not the most nutritious diet, but it saved me.
I've also down a low-oxalate diet, a candida cleanse, Whole30, and we ate paleo for about a year. Those diets all helped, but weren't sustainable for me.
Here is what I don't eat/drink: soda, caffeinated drinks, citrus juices, sugary drinks, anything with artificial colors or flavors, jalapeños, highly processed meats, grapefruit (sad day), chocolate (note - I completely avoided chocolate for a whole year and it helped me so much; sadly, I have relapsed and eat chocolate sometimes, but I need to just stop because the acid does not do good things for my body), processed tomato products. I'm Mormon so I don't smoke or drink anyway, but I'm sure that helps.
Here is what I try to keep in my diet: I pretty much only drink water and lots of it, but in small sips, all day long. I drink about 80 ounces of water a day. I need to because dehydration is my number one trigger for flair-ups. We try to eat paleo, but I've noticed that if I eat acidic fruits or vegetables without gentle starches or carbs (like sweet potatoes) to counter the acid, I can flair up. It's a bummer.
I can wear jeans again! Happy dance! I didn't wear jeans for three years and stopped missing them. But then after I'd felt good for several months, I bought some and have loved wearing them - but sparingly. I am most comfortable in dresses, skirts, and soft leggings. A few friends have commented on how much I wear leggings and it kind of made me embarrassed but I just have to not be sensitive about it. Clothing makes a big difference for me.
I mentioned before that strong cleaning products can give me pelvic pain. I avoid those. I also avoid chlorine (though I did spend a ton of time in the pool in Florida last month and I did okay), but I try to avoid anything that would hurt my skin if I put it on topically - so like bleach, for example. It's a good rule of thumb for me.
We were very careful to avoid physical intimacy during flair-ups. Things are a lot, lot, lot better now - email me if you have questions. I know this is sensitive and one of the hardest aspects of IC for many of us.
I tried essential oils (taken in pill form), meditation (which helped a lot) and biofeedback. All were helpful except maybe not the essential oils. Still not sure about those. I still can't smell Frankincense without feeling nauseated. Ha. But that may be more to the time period than the actual smell. Who knows.
But listen, if you are feeling like life is really, really unfair, you are right. Pelvic pain is so hard to live with because it's so embarrassing and such a mystery. But hang in there.
There is a poster at my doctor's office that says "Hold on - Pain ends." I love it. It's so true. Hold on, keep trying new things, and give it time and focus. You will get through this and be able to frolic and play and laugh and exercise and do all those things that matter to you. You just might not be able to eat all the things you love or wear all the things you love, but those things don't matter much in the bigger picture.
PLEASE email me if you want support or have questions. My last IC post had over 200,000 shares - which means there are LOTS of people out there who are suffering silently. firstname.lastname@example.org