By Jandra Mueller
Jennifer was referred to PHRC by her urogynecologist who diagnosed her with interstitial cystitis/painful bladder syndrome (IC/PBS). For more information on this condition, check out Melinda’s webinar on IC/PBS.
She was diagnosed with IC in 2012/2013 because she had been experiencing significant cramping in her bladder, as well as urinary urgency and frequency. After a series of (positive cultured) UTI’s she was put on VESIcare, a medication used for overactive bladder, and Cimetidine, a medication used to reduce acidity. The medications did not reduce her symptoms.
At the time of the evaluation Jennifer reported the following symptoms:
- Urinary Dysfunction: Bladder pain and cramping, urinary frequency and urgency. She reports that she would go to the bathroom about once every half hour.
- Aggravating factors: worse with core exercises, certain foods (tomatoes, coffee, and other acidic foods) and one to two weeks prior to her menstrual cycle.
- Dyspareunia (pain with sex): She reported that this gradually became worse and initially would only notice pain with certain positions as well as initial penetration. However, the year prior to her seeking PT, it became worse and was now with any position and throughout the entirety of intercourse.
- Right hip pain: Which she had injured during running previously and had positive findings for a labral tear, which she ended up getting surgically fixed during the time she had treatment with me.
- Pain with gynecological exams: In addition to the pain with intercourse, she also experienced significant pain during her gynecological exams.
Other relevant information was that she was using bioidentical hormones (estrogen, progesterone, and testosterone) to help treat premenstrual dysphoric disorder (PMDD) because she experienced depressive symptoms that seemed related to her cycle. She also had a dermoid cyst removed in 2007 from her right side. Prior to physical therapy she had also tried bladder installations and a biopsy.
Her main goal for physical therapy at PHRC was to have less pain overall and resume previous activities without pain (sex, working out, and less restricted eating), as well as not needing to take medications for her bladder due to side effects.
The main findings from Jennifer’s examination included:
- Severe connective tissue restrictions and scar tissue in her suprapubic, abdominal and bony pelvis regions (around labia, sit bones, and sacrum).
- Muscle trigger points throughout her abdomen musculature, right iliopsoas, glutes, hip external rotators.
- Hypertonic pelvic floor muscles at rest (too tight of muscles) in both her superficial and deep layer.
- Erythema (redness) throughout her vestibule (the tissue near the entrance of the vagina)
- (+) q-tip test throughout the entire vestibule – this finding tests the tissue at the entrance of the vagina and when pain is provoked everywhere, there can be a hormonal component causing this. This can be a sign of hormonally induced vestibulodynia (a subtype of vulvodynia).
At the time of her evaluation, based on her history and objective findings,it is plausible that her prior use of oral contraceptives caused changes in the vestibule (inflammation, irritation and likely pH changes). These changes predisposed her to recurrent infections and were the primary cause of her pelvic pain, urinary dysfunction, and dyspareunia. As she had been dealing with this issue for approximately three years by the time she came to see me, I suspected that her central nervous system was also involved which was further worsening her symptoms. With central nervous system involvement and “IC,” one of the mechanisms for pain is mast cell involvement. Certain foods can then activate this system and be a trigger for pain.
She also presented with significant pelvic floor hypertonus and tightness in many of the muscles attaching to her pelvis like her abdomen, glutes, etc. This can be due to many factors including a response to her pain, lifestyle, high intensity workouts, compensation, etc. Imaging also revealed a labral tear and Jennifer presented with findings suggesting that was likely a contributing factor to some of her pelvic floor issues.
Considering her findings and her goals, the goals we created for Jennifer include:
- She will have at least 50% reduction in bladder symptoms in eight weeks.
- She will have at least 50% reduction in her musculoskeletal findings (connective tissue restrictions, muscle hypertonus, muscle trigger points) with PT and her home exercise program in eight weeks.
- She will be able to exercise and have a less restrictive diet without a significant increase in pain/symptoms in eight weeks.
I originally recommended Jennifer to be seen weekly for eight to twelve weeks. In the treatment sessions, we focused on manual therapy techniques to decrease the myofascial impairments found upon the evaluation. This included myofascial release, myofascial trigger point release, scar tissue release and connective tissue manipulation to allow for improved blood flow to the underlying tissue/muscles and improved tissue mobility. In addition to this we also discussed dietary changes and possible referral to Joshua Gonzalez, MD, a urologist specializing in sexual medicine to address the erythema and pain at the vestibule that may have been a result of her previous use of oral contraceptives. PHRC’s therapist Katie Hunter did a webinar on vulvodynia in which she discusses this further in detail! Her home program initially consisted primarily of pelvic floor relaxation techniques and foam rolling to address the tight muscles and fascia to complement what we are doing in our treatment sessions.
At the end of the initial eight sessions, she reported 80% improvement in IC/bladder cramps and was able to be more carefree with her diet. Despite this improvement, her right hip pain was continuing to be aggravated with most exercise. Our goals moving forward were to further evaluate the pain generators in her right hip and continue to improve her bladder symptoms. In addition, she began to use a combined hormonal topical consisting of estrogen and testosterone compounded in coconut oil and applied to the vestibule daily.
Over the next three to six months, Jennifer reported improving urinary symptoms (less urgency and frequency), improved entrance pain with sex since using the hormonal cream, but continued issues with her right hip. Additionally, she started noticing more consistent flares with her bladder symptoms with her diet and also consistent aggravation with symptom flares related to her menstrual cycle. During this time, she had ended up having a labral repair as well due to the unchanging nature of her right hip symptoms.
The AH-HA moment!
At this point, it had been approximately one year since she started PT, with some breaks throughout that year. She had just completed an anti-inflammatory diet protocol without much change in her symptoms. Her symptoms had improved significantly since she started PT although consistently flared with her menstrual cycle and diet. As we discussed her menstrual cycle in depth, she mentioned that she does have a history of heavy, painful long periods in addition to the PMDD diagnosis in which she had been treated for in the past.
At this point, I suspected that she may have endometriosis and I referred her to an endometriosis specialist who confirmed my suspicion with her evaluation and examination. She recommended that she undergo laparoscopic surgery and excision of endometriosis. I continued to see Jennifer during this time approximately every two weeks, mostly for management of her symptoms. In January of 2018, she underwent laparoscopic surgery and it was confirmed with biopsy that she did have endometriosis.
Surprisingly, shortly after her excision surgery, she found out that she was pregnant. She and her husband had discussed getting pregnant and having a baby, but due to her health issues she was wanting to wait until everything was addressed. Prior to the surgery, she was using the bioidentical hormones which everyone suspected was essentially providing “birth control;” she did not change this before, during, or after her surgery. Because her and her husband weren’t purposefully trying to conceive, despite having intercourse, it could be that she was indeed experiencing infertility and after the endometriosis was removed, she was able to get pregnant.
I saw Jennifer for a while after her pregnancy and she reported intermittent bladder symptoms, some due to increased pressure from a growing baby on her bladder. She had also opened a cafe at that time and was sitting a lot more which increased her hip and lower back pain, which we were treating as well.
Jennifer ended up having a beautiful baby boy in 2019 and was able to have a vaginal delivery and recovery without a significant increase in her symptoms as well as return to regular exercise. She is doing well today. Here are a few words from her:
“I came to PHRC because I had been diagnosed with Interstitial Cystitis. I had never had pelvic physical therapy before in the three years that I knew of the diagnosis and I feel lucky that PHRC was one of the first places that my urologist referred me to. Jandra was my PT and every week she gave me new insights into my pelvic condition and helped alleviate my symptoms with various manual techniques. She also gave me exercises to do at home. I felt that I learned something every week. My symptoms improved and became manageable. After some time, Jandra suspected that I might have endometriosis. She referred me to an excellent physician (Dr. Iris Orbuch), one of the best in the US and one of the few who practices excision surgery. She excised my endometriosis during surgery and six weeks later, I became pregnant. I had been on estrogen supplements which worked similarly to birth control pills, so I didn’t think I was able to get pregnant. After the surgery, I was still on my supplements, and I became pregnant. It was a pleasant and unexpected surprise and I am grateful that I was able to take care of the endometriosis before I actively started trying to become pregnant and possibly encountering trouble conceiving. Overall I am thankful to this company, Jandra and their resources. I highly recommend them to anyone looking to heal pelvic related pain.”
A little bit about endometriosis
Endometriosis can be a tricky disease and it has many faces and all too often gets dismissed by doctors. It takes an average of seven years for diagnosis and it affects one in 10 women. Because of the role the nervous system plays in this disease, many women have other issues, known as overlapping pain syndromes like irritable bowel syndrome (IBS), interstitial cystitis/painful bladder syndrome (IC/PBS), and chronic pelvic pain. In addition to pain, many women experience infertility; for Jennifer, she hadn’t been actively trying to conceive, but it appeared she likely would have had difficulty if they were trying and luckily she was able to have an appropriate surgery before this was a known issue; for many women, this is not the case.
Excision surgery is the gold standard for diagnosis and treatment. This gold standard is important because many surgeons will perform ablation – which is where they heat the tissue and burn it; however, this does not thoroughly treat the disease and many women will still suffer afterwards. To learn more about endometriosis, check out my webinar Pelvic Pain Explained: Endometriosis as well as my resource blog here to find out where you can find providers and other resources if you think you have endometriosis or know someone that does.
And thank you to Jennifer for sharing her story!