Doctor Tip: Be Specific About Your Symptoms
In an ideal world, a doctor would talk with you for hours to suss out your symptoms. But in reality, the onus falls on endometriosis patients to paint a clear picture for physicians. That's why I try to be as specific as possible in the half hour I have with my OB-GYN, especially when I see someone new.
Here are a few ways to get more detailed.
What kind of sensation is bothering you?
With endometriosis comes a lot of different types of sensations. Each indicate something different. My ovulation pain is shooting and can affect my hip, side, or rectum. The throbbing after sex is sometimes dull and radiating throughout my pelvic floor. The week before my period starts, I feel a lot of pressure. This is all unique from the feeling of menstrual cramps that come as my uterus contracts at the start of my period.
Among some of the other descriptors I use are: burning, stabbing, pulling, twisting, nauseating, and sharp.
Where is the discomfort?
Is it in your inner thighs? Your tailbone? Your joints? Pain in your shoulder could be thoracic endo, whereas pangs in your left hip could be muscle tightness, a cyst, or endometrioma. If your tailbone and vagina ache for awhile after sex or bowel movements, it could be pelvic floor tension.
Sometimes pain is diffused throughout my entire midsection in a way that is hard to pinpoint its origin. But locating specifically where I hurt — ovary, muscles, bladder, rectum — has helped customize my treatment. (For meditation fans, the pain pack with the Headspace app can help you hone in on your pain origin.)
When in your cycle do symptoms flare?
I have short-lived, intense twinges at ovulation and longer-lasting aches during the luteal phase — when progesterone peaks — the week before my period. Then there's the 1-2 days of fierce pain when my uterine lining contracts and the bleeding starts. Each phase gets a different treatment: ibuprofen helps with true period and ovulation pain, but pelvic floor exercises relieve tension and cramping caused my muscle contractions that get worse with PMS.
Download some help
I have used the Period Tracker app for years. It lets me add any symptom I want, along with the option of noting when I have sex and in what position. It's designed to help gauge fertility, but it's customizable and I like the calendar options so I can see which symptoms occur at what point in my cycle.
The Phendo app is endometriosis-specific. It asks about everything from which medications and hormones you take to which exercises help you feel better and what kind of mood you're in. Most importantly, it gives very detailed ways to describe pain. There are more than 20 different options for pain placement, including pelvis (left, right, or entire), vagina entrance, back, and ribs.
Endometriosis patients are their best advocates, so speak up when you see your physician. I probably tell my doctor more than they need to know, but I figure no detail is too small when it comes to figure out my best treatment.
Have you had any of the following surgeries for your endo?