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Sharing Her Story: Finding Treatment for Interstitial Cystitis

Many women, both young and old, from students to mothers and women going through menopause, suffer in silence for years with a variety of pelvic floor disorders. Sometimes, embarrassment or shame can prevent them from seeking help, and other times, medical professionals may brush off their concerns.

Below is a story from one woman who took her health and wellbeing into her own hands, advocated for herself, and found treatment that has allowed her to begin enjoying her life again. We hope this serves as inspiration to anyone who is currently struggling with any form of PFD that options are available to them, and that there is a light at the end of the, often frustrating, tunnel of seeking treatment.

My name is Mikayla. I’m 26. I have been living with Interstitial Cystitis (IC, or Painful Bladder Syndrome) for seven years.

It all started one morning in 2014.

I remember freaking out because I’d been up the night before urinating around every one or two hours. I was 19, a sophomore in college, and a CNA. I thought that I probably had a urinary tract infection (UTI), brought on from my job, dehydration, and not taking enough bathroom breaks.

After talking with my mom (who is an RN), we both agreed that a UTI was the best explanation for this onset of symptoms. She suggested I go to urgent care to get antibiotics, because that would be quicker than making an appointment at my doctor’s office.

I ended up going to urgent care and getting my urine checked. I was then given a five day course of antibiotics while we waited until the results came back.

Two days later, I got a phone call telling me that I did not have a UTI, which left me frustrated because I felt like I wasted time taking antibiotics. I continued to have feelings of urgency, pressure, and frequency. It was affecting my school work and my job performance. Everywhere I went I was staking out a bathroom, and I felt like my co-workers thought I was being lazy and lying about needing to go to the bathroom so much.

I finally decided to go to my doctor, who told me that I should visit both a gynecologist and a urologist. Going to the urologist office was a unique experience. I remember noticing that the youngest people there looked to be about my mom’s age, and they were most likely accompanying their parents. I was so embarrassed to have an ‘old lady problem.

During that urologist visit, I got tested for diabetes, had a kidney ultrasound, and was given a list of foods to stay away from. My urologist thought my symptoms sounded like overactive bladder (OAB). She gave me a sample of Toviaz to try and see if it would alleviate any of symptoms. It didn’t – I would have been better off eating candy.

I was really dreading my gynecologist appointment. I had never been to one at that point, and had thought I could stall it for a couple years. I decided to go to an all-female practice, because I thought it wouldn’t feel so bad if I were examined by a woman.

My nurse practitioner was wonderful. She explained everything and was very gentle, and she had the sweetest, calmest voice. That said, my pelvic exam was uncomfortable and almost excruciating. I didn’t say anything though, because I had read before that the only reason a pelvic exam would hurt was if you had a possible STD. And I knew I didn’t have one (editor’s note: there are many reasons a pelvic exam may hurt – see more myths about pelvic pain here).

During the exam my NP made comments, and she claimed everything looked normal. She also told me she didn’t think I had OAB, because if I did, Toviaz would have done something for me.

She asked if certain foods irritated me, and if I ever felt like if I didn’t go to the bathroom that I would wet my pants. I answered yes to all. She asked if I ever heard of Interstitial Cystitis, which I hadn’t. She told me she thought that was what I had, and told me to look up the IC diet list.

I finally had a definitive answer, but it wasn’t reassuring. I wondered what my life would be like. Would I ever be rid of this?

Looking back now, the early years of my diagnosis were hard. Adolescence is hard enough without feeling like an old lady.

During that time I learned about bladder installations. They helped for a time, but the symptoms would always come back sooner or later. For a short time I also tried taking Claritin and later Zyrtec. Some people find that antihistamines help with the urgency symptoms. They didn’t help me much, I think because I would take both drugs during the spring season when I had allergies.

In the midst of this I did find love. My ex and I were together from the time I was 20-24. He was there in the beginning of my diagnosis. I think he tried to be supportive, but it is a difficult disease to understand. I was 22, and I felt like I was ready to have sex for the first time. I had heard that painful sex was a common IC symptom. But somehow in my naivety I had hoped that this would bypass me.

My first time was almost like the movies. He tried to make it special. We spent the day together going to the movies and had a nice dinner. When we got back to his apartment he had decorated the path leading to the bedroom with rose petals, along with the bed. He also lined the room with candles. He started slowly and gently. He made sure to tell me how beautiful I was, and he touched my body like it was made of glass. We exchanged “I love you’s”. He made sure to go down on me (we had done certain things before and he knew how much I enjoyed that) and asked me one more time if I was really sure. I said yes.

He tried to penetrate me. It stung and burned. I remember him hardly being able to get the tip in. We tried multiple positions, none of them comfortable. But I enjoyed the moment, despite the pain. I remember hearing that your first time is always painful, and thought maybe in time I would get used to it.

Sex between us almost always hurt. It drove a wedge between us. I think he tried to be patient, but there were times he would end up very moody. He would complain that we hardly had sex, and I think he very much felt like I was exaggerating my pain. Sometimes he would blame himself, and thought maybe it was him stressing me out so much that caused me not to be able to relax and therefore have pain.

I felt like a failure as a woman. I was angry that everyone else was enjoying something that I couldn’t do. It was my biggest insecurity. I knew he loved me and he wanted to spend his life with me. But this problem kept coming up. Eventually we did break up – not only because of sex but it did play a part.

I was in the last semester in my Respiratory Therapy program. My mom was also in NP school.  She asked one day if any of my practitioners had mentioned pelvic floor physical therapy to me. No. Not even once. So I decided to look for a center that offered it and see what this was all about.

I had kind of given up on my IC. I knew it was chronic and I had no hope of feeling any better than I did. I wasn’t interested in doing more bladder installations. I was tired of medication side effects. I worried about deteriorating. I thought eventually I would become incontinent.

So I didn’t go with much expectation, but I was willing to try anything.

I am so grateful for my PT, even now at this very moment. She listened to me, when I for so long felt dismissed by my doctors and expected to live with pain. She gave me a list of stretches which were rather extensive. I was in a rigorous program on the cusp of graduating and sometimes the appointments and my home plan were hard to fit in. But I did it. Always. I bladder trained, and I kept track of my symptoms.

In about 2-4 weeks I noticed a difference in my symptoms. I was consistently able to sleep through the night (sometimes I would wake up around 1-2 times per night). Every visit concluded with her massaging my legs and stretching my poor hypertonic muscles. Some visits included internal exams. I didn’t realize how most of my pain was because of my IC. I had/have intermittent back pain, constant leg pain, bladder pressure, and lower abdominal pain. I had already known about my vulvodynia.

I was in PT for about 2 months when my PT told me she was leaving the practice. She was the practice’s only pelvic PT. Before she left she give me a list of places that had pelvic physical therapists in my area. She also told me I had done so well that continuing therapy was up to me (editor’s note: to search for pelvic floor specialists in your area, please see here).

At that time I was really busy. Finals and graduating were weeks away and I still had to take my boards. In a way, her leaving at that time worked out because with all I had going on I wasn’t sure I could commit to my appointments.

Fast forward to today … I graduated and passed my boards. I was blessed enough to have a job two months before graduation. I started this week. I hope to get into the swing of things, and I plan on starting pelvic physical therapy again.

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