Trapped in My Body
Walking around the courtyard of the hospital where I worked, I felt trapped in a body that I didn’t want. I felt like a flaming vagina in a human body costume. I was sure anyone who walked by me could tell. Pain, pressure, and burning occupied my thoughts, so I imagined it must be visible on the outside too.
Chronic pain messes with the mind. Chronic pain of an intimate nature is its own hell. It's private and isolating. I wished I had a broken arm or an arthritic knee. I felt shameful. I tried to hide from it by ignoring the pain and going about my life.
Even after I finally received a seemingly legitimate diagnosis of interstitial cystitis, I felt alone and hopeless. Many are unfamiliar with the condition and its symptoms, and so was I. So are many practicing medical professionals.
What Is Interstitial Cystitis?
Interstitial cystitis, IC for short, is an often misunderstood and difficult-to-treat bladder condition. It is chronic and idiopathic. The patient will never have all the answers, and they can expect to make life changes in order to deal.
A diagnosis of interstitial cystitis comes after all of the testing has found nothing and the pain persists. Doctors can’t seem to agree on how to diagnose it or how to best treat it. This is the challenge that the patients face.
An estimated 3.2 million to 7.9 million women suffer from interstitial cystitis. The condition affects more women than men, with a reported 1-4 million men having been diagnosed with interstitial cystitis.
The IC Network website provides a clinical description of interstitial cystitis: "An unpleasant sensation of pain, pressure, or discomfort of the bladder and lower urinary tract more than six weeks without an active infection or other identifiable cause."
Symptoms, Causes, and Treatments
Symptoms interfere with sleep, work, sexuality, and the ability to live normally.
The cause is unknown, but there are several proposed etiologies; Hunner lesions, bladder wall injury, pelvic floor injury, pudendal neuralgia, and chronic overlapping pain conditions / central sensitization syndrome.
Treatments, and their effectiveness, vary from patient to patient. Dietary changes are often recommended, and this offers some relief for a subset of patients. Stress management is endorsed, as it is for most chronic pain patients. Amitriptyline, as a low-dose antidepressant, has the effect of calming nerves, and is typically offered to patients along with dietary and lifestyle changes.
Next in line if those treatments have proven effective, is bladder installations. In this treatment, an anti-inflammatory “cocktail” is instilled directly into the bladder using catheterization. This treatment has varying success rates, depending on the specific cocktail and the patient.
Pelvic floor therapy could be a helpful complement to any of these treatments, though it is often not covered by insurance.
Even with these diverse treatment modalities, and the list changes frequently, it may take months for patients to feel relief and they may still experience flare-ups of pain. As a result of all this and more, 52% of IC patients report experiencing panic attacks brought on by symptoms, and 30% report co-occurring depression.
The fact that I experienced pain with intercourse as a symptom was difficult for me to discuss with healthcare providers. This symptom is often undisclosed by patients, or it is dismissed by doctors. My discomfort during sex caused me to cringe. I would literally curl into a ball with my hands up over my face like I was dodging a blow to the face. This is not romantic. Further challenging, I felt like I had to hide the pain. How unsexy and unappealing.
I struggled with thoughts that I would never be able to have my sex life back, or feel like a sensual being again. I had never been faced with these thoughts before, and I wouldn’t have thought it would bother me the way it did.
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I’m not someone who would be described as sexy. Cute, maybe. I’m barely five feet tall, slender, no curves. I mostly shop in the children’s department and could be mistaken for a young boy from behind, but I still wanted some sexuality.
A Loss for Words
I felt at a loss for words to explain my needs, fears, and discomfort. My communication skills were disconcertingly underdeveloped, further proof that I couldn’t be in a relationship. I would say time and time again, “I’m more trouble than I’m worth.” I wanted to give up on myself half of the time. How could I expect someone who actually had a choice to stick around? No one would want someone who was broken.
I settled into this feeling a little too much, and I took a break. I’m still triggered by phallic-looking items, as I imagine I may feel obligated to engage such an item orally or manually to make up for my broken vagina. I would pay a handsome sum of money if someone could promise me that I would never face the indignities of someone’s hard dick jabbing into the side of my thigh as some erotic come-hither foreplay.
I wanted a redo. Like if you’re playing a video game, and your Mario character misses a jump or gets creamed by a fireball or floating mushroom top. That life is over, and you just start back over at the beginning of the level using one of the backup lives. I was pretty sure this life of mine was beyond repair, and I wanted my do-over. I wanted a clean slate. No failed body. No cloudy mind overgrown with weeds of worry and pain.
I wanted an out. My body had failed to live up to its promise. My life was not on track. I used to be pretty okay in my body: a young-ish petite brunette who kept herself well put together. The blow-out. The manicure. The outfit. Cardio daily. Smile nicely. I was pretty unrecognizable to myself by this point, having given up all these things, and any discernible amount of giving a shit. Now, I was my inflamed bladder.
I was officially diagnosed by the second urologist I saw. He came into the exam room. He said he had looked over my records, and I had already had all of the tests that could be run. He questioned me about my level of stress and my history of an eating disorder. His interpretation was interstitial cystitis brought on by stress and drama.
His advice was to start on an aloe supplement, get rest, and cut out all caffeine, alcohol, acidic foods, fake sugars, chocolate, etc. Apparently, I hadn’t left restrictive eating behind when I recovered from my decade-long battle with anorexia.
He told me not to bring myself back to the hospital if the pain got too bad. There was nothing they could do. He said this was just something else I had to deal with now. It would become manageable, he claimed. I just shouldn’t go out all night drinking margaritas.
No sign of a treatment plan. A lack of patient-centered information and instruction. Was I taking this all in correctly? This doctor clearly thought he knew me in and out after a glance at my records and a minutes-long consultation. Did he know I hadn’t had a sip of alcohol in over a decade? I don’t drink. The door closed behind him. Okay then. If he prescribed elimination diets, fine. I’d do anything to get rid of the discomfort.
I Googled a lot after the diagnosis. I researched the real story, and I learned way more than any doctor would have taken the time to explain to me. I found out about the most up-to-date and effective treatments. I read other patients’ stories about how they dealt with it and what worked for them. It seemed life-changing.
I had the dreaded impression, true or not, that I could not weather this on my own. I shoved my meager possessions in the car and drove. I was hyperventilating at times, but relieved to be done with it all. I moved back home, to my childhood bedroom. I could get through this, just maybe not on my own, or with any of my dignity left.
A New Urologist
I made an appointment with a new urologist back in my home state. This doctor, a woman, was four weeks away from retirement and had one foot out the door. She didn’t know if she agreed with the diagnosis, but nonetheless, she prescribed a more restrictive diet and signed me up for as many bladder instillations as I could handle.
I would be catheterized and a concoction of anti-inflammatories and antibiotics would be shot up into my bladder. I only made it through three treatments, having nearly thrown up at the sight of the equipment each time. The doctor was nonplussed by my failure to get better and tolerate the instillations. Take off your pants or don’t was about as much concern she was able to muster up. She shrugged and made her exit, to her retirement presumably.
Yet Another Urologist
That third urologist had at least accepted something was off with me and followed up on a treatment plan, so when she retired I figured I should still be followed by a urologist. I actually had hopes that a new urologist might even be better. She was well-regarded and worked with a prestigious university hospital system. Maybe he or she could even propose a treatment plan that wasn’t god-awful painful.
Admitting that she hadn’t had enough time to look over my records and my previous testing results, the fourth urologist proceeded to come to her own separate, differing opinion and she ordered duplicate testing. Nothing was wrong. She ruled out my previous diagnosis of interstitial cystitis on the grounds that I wasn’t urinating multiple times a night and her examination found no gross abnormalities. She ordered duplicate testing to justify her diagnosis, and I prepared myself for more days off and more genital violation.
The cystoscopy was bad. I tried to zone out and ignore the pain. I shut my eyes tightly. Was she really trying to talk to me during this?
Ironically the testing she ordered proved her assumption. The tests found no red flags. This is despite the fact that these diagnostic tests are no longer the standard for diagnosing the condition I had been diagnosed with.
She was confident that she had nothing to offer me. I had the healthiest bladder she ever saw.
She recommended a pain management specialist. Pain management wasn’t what I was looking for at this point though. Optimistically, I was still expecting relief from pain and a cure. When I heard pain management I heard “it’s all in your head.” Pain management specialists can offer opioids or something of that sort, to block pain. I foolishly still wished to know what was going on, why, and how to treat it.
My Journey Continues
Some challenges that life throws at us are more difficult to navigate than others, and we can’t do it on our own. I’ve had fourth and fifth opinions at this point. I have an ever-growing team of healthcare providers. I have a cache of prescriptions and supplements that may or may not make a difference on anything but my budget. I have pelvic floor therapy weekly for a not-insignificant sum of money. It’s like vagina boot camp.
Pelvic Floor Therapy
For anyone who is not familiar with pelvic floor therapy, the idea is to move things around, release tension, and find and work out trigger points. I am grateful for the unrushed appointments and consistent check-ins I experience there. My pelvic floor therapist was the first one to give me hope. She listened to me far more than any other provider.
Small Rays of Hope
The more I know what’s going on, the more in control I feel, the more okay I am with it. It doesn’t always result in the absence of symptoms, but it does something for the isolation, stress, and hopelessness. To have agency in my health means a lot. There are actions I can take that have an effect on the pain. I follow my diet rigidly. I go to physical therapy. I take my medications. I practice yoga, and take deep breaths. I try to live life between the pain and depression that comes with it; finding joy in the small things. It could be worse.
I have a new gastroenterologist. It turns out I’m not pooping right. All these years and I didn’t know. I’m learning that everything is connected; mind, body, spirit, stomach, vagina, anus. Breathing too is also important. It’s something else I didn’t realize I was doing incorrectly. I can try out new breathing. It apparently helps the pelvis, so my pelvic floor therapist is working on it with me.
Doctors get paid whether they heal patients or not. That is why I would tell anyone to listen to your body first and foremost. If you’re still in pain don’t give up. That will damage your quality of life, and you deserve more.
Don't Give Up
When in doubt, all we can do is put one foot in front of the other. The answers may present themselves, or problems just may not seem so insurmountable the next day. I understand that this is a season of my life, just like any other. A season with pain, withdrawal, loss, doctors and more doctors, diagnostic tests, ice packs, and heating pads, but a passing season, like any other. I will see it through, and come out the other side, with decidedly different priorities and goals.
Further Reading and Resources
- Chronic Pelvic Pain - FamilyDoctor.org
Chronic pelvic pain can be caused by multiple medical conditions, many of which can be treated or managed with proper medical care.
- Chronic Pelvic Pain in Women - Yale Medicine
Chronic pelvic pain is comfort anywhere below the belly button and between the hips that lasts for six months. Learn about symptoms and treatment.
- Interstitial Cystitis & Bladder Pain Syndrome - Symptoms, Treatment, Diet
Support for patients with interstitial cystitis (IC), bladder pain syndrome, Hunner's lesions and pelvic pain. Diagnosis, treatments and diet.
- Interstitial cystitis - Symptoms and causes - Mayo Clinic
Bladder pain and urinary frequency flare with certain triggers if you have this condition. Learn about treatments and self-care.
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
© 2022 Karen Michelle C