Diabolical Duo

“There are two things in life for which we are never truly prepared: Twins.”

--- Josh Billings

Scenario 1: “I have always had painful periods; but my mom was very understanding, and bad periods are common in my family. My periods only really put me down for a couple of days a month; and I could deal with that. Then I started getting bladder infections, or so we thought. They didn’t respond well to antibiotics, and very soon I felt like I had constant lower abdominal pain. I was urinating 20-30 times a day, waking up several times a night, and it seemed to get much worse with my period. Finally, I was referred to an urologist that diagnosed me with interstitial cystitis. He started me on rescue instillations, elmiron, and pelvic floor therapy. I feel sooo much better. I still have flares around the time of menstruation, and my periods are still very painful, but my bladder is under control most of the time.”

Scenario 2: “I don’t remember having really bad menstrual cramps when I was younger, but by the time I was in my mid twenties, I began having a lot of lower abdominal pain, which worsened after ovulation every month. I began having overactive bladder symptoms, and occasional bladder pain, particularly if I didn’t make it to the bathroom on time. My gynecologist thought I might have endometriosis, so we did a laproscopy. There were multiple lesions, which were removed, and my symptoms all but disappeared. 2 years later, my symptoms returned, and we did the same thing, this time it didn’t seem to work as well. I got some improvement, but I am still having pain, and for some reason there are more bladder symptoms than before.”

These are pretty common scenarios, and both of these found progressive doctors that were able to hone in on the dominate symptoms and quickly find a diagnosis and get these women some relief. Sadly, in both cases the diagnostic process ended too quickly. I am constantly reminding people that quality medical care requires a team approach, and as patients we must be the captain of our team. Endometriosis and Interstitial Cystitis frequently occur at the same time in the same women. There are many articles on the web that discuss the concurrence of these two conditions; prevalence is listed as high as 80-90% in some articles. That means that the majority of my IC patients are only being treated for half the problem, and many endometriosis patients have not received the urological work-up they need. Symptoms are very similar, so treatment for one often relieves symptoms significantly enough that we feel pretty confidant that we “got it.” If symptoms persist, ask your doctor about more diagnosis.

If you are lucky and your doctor is aware of the comorbidity of these conditions, she may be using the “chicken or the egg” approach and trying to get symptoms of one condition under control before tackling the other. If this is the case, great! But, make sure that communication is open, and that your lesser symptoms are not being ignored. If you are seeing a gynecologist for endometriosis, ask for an urology consult. If you are seeing an urologist for IC, ask your gynecologist about endometriosis. You may be one of the 20% of patients that has only one of these conditions to worry about, but it would be best to know for sure.

EndoKnowledge

I would like to acknowledge Niva Herzig, MSPT of Marathon Physical Therapy in Boston, and Amy Stein of Beyond Basics Physical Therapy in New York, for their recent article in “Visions,” the professional newsletter of The International Pelvic Pain Society. The article is titled “Physical Therapy and the Treatment of Endometriosis.” Full text of the article can be viewed at www.pelvicpain.org. Click on “provider resources” and choose “read the pelvic pain newsletter” from the pull down menu.

The authors explain in detail how physical therapy can benefit women suffering with the pain of endometriosis. The relationship between pelvic floor muscles, abdominal muscles, pelvic organs and connective tissue can create patterns of pain that can be relieved by manual physical therapy, proper stretching and exercise, and using relaxation techniques. Often, the surgical procedures used to eliminate the endometrial lesions result in scarring. Scar tissue can cause pain, trigger points, and poor movement patterns. Physical therapy can help with all of this.

Endometriosis is primarily a medical condition, characterized by the appearance of endometrial tissue (the tissue that lines the inside of your uterus) around (or in) the tissue of other abdominal organs. This tissue is hormone sensitive, and reacts to the ebb and flow of estrogen that happens during a normal menstrual cycle. This is why endometriosis pain is most common just before or during your period. Some women have endometriosis pain at other times in their cycle, and some are most sensitive when they use or stretch the effected tissues. Endometriosis can occur in women at any age, and is a common cause of extremely painful periods in teen-agers and young women.

I recommend that any woman with painful periods discuss them with her gynecologist. I also feel it is important to track your pain patterns for a while; it helps in the discussion with your doctor, and will help you see patterns that might not have been obvious before. Many pain diaries can be found on the internet. One I found is a Weekly Pain Diary. It is helpful if you think that your pain may be associated with your menstrual cycle. The one shown here has a place at the bottom for comments or "other" – use this area to note what day you started menstruating, and how heavy the flow is during the week.

If you are diagnosed with endometriosis, discuss the benefits of physical therapy with your doctor, but remember that PT is most beneficial as part of a multidisciplinary team. Unless the proliferation of tissue and reactivity to hormones is addressed, you will probably continue to have pain, regardless of the skill of your physical therapist. Let me know how you are doing, and if you have had success with PT, or have information that would benefit others, please post a comment.