Endometriosis is a chronic disease characterized by debilitating pelvic pain. Women with endometriosis report experiencing multiple pain types affecting many different body parts often varying in pattern and intensity. It can be difficult to track and prepare for these pain episodes. Besides, endometriosis symptoms are difficult to recognize and diagnose since the disease may cause no pain in some patients but can still be problematic. A personal record or diary of pain and related symptoms can not only help with the diagnosis of endometriosis but also come in handy while dealing with insurance paperwork and for work, school, or college. An endometriosis pain diary will also help you understand how your symptoms have been progressing every week.
How to create an effective endometriosis pain diary?
There are many ways to create your own personalized endometriosis pain diary. One effective way would be to dedicate some pages to a self-assessment questionnaire and including a weekly chart. The self-quiz is important as pain symptoms can range in severity and do not necessarily correlate with disease progression. The weekly chart should be able to provide an at-a-glance view of the symptoms you experience. The more detailed information you can include in these two parts of the diary, the easier it will be for your healthcare provider to help with proper symptom management. You can either write this record by hand or store it in electronic form. The important thing is that you have easy access to it whenever you need it.
What should I include in the self-assessment?
Be sure to include as much information as possible about your overall health in the endometriosis pain diary. This can be information about your periods, pain episodes, and symptoms.
Information about your periods
- the extent of bleeding i.e. whether light, medium, or heavy
- any bleeding between periods
Information about experience of pain
- pain during periods
- the severity of the pain
- area(s) where pain occurs
- any pain during non-period days
- any pain during intercourse
- pain during exercise, stress, or any other activity
- description of the pain whether it feels spasmatic, throbbing, shooting, sharp, agonizing, cramping, etc.
A handy pain mapping worksheet is available online at the Center for Young Women’s Health, Boston Children’s Hospital’s website. The worksheet includes a checkered diagram of the human body, which you can shade in different colors to denote the extent of the pain. You can then share this information with your healthcare provider.
Information about your symptoms
- any pain or bleeding during bowel movements
- any pain or bleeding during urination
- sense of feeling bloated and whether this increases during your periods
- frequency of feeling tired or fatigued
- mood swings or behavioral changes, if any
- changes to body features such as hair growth, weight loss/gain, etc.
- any other symptoms
It is also a good idea to jot down information about any current treatment regime such as birth control pills, for example, that you are following and any associated symptoms.
Try to be as descriptive as possible instead of just answering “yes” or “no” to the above questions. Even minor details can be of great help to your doctor.
How to prepare a weekly chart?
While it is possible to have both the self-assessment and the weekly chart in a single tracker, the amount of information can be hard to process over time. Therefore, it is best to record them separately, so you don’t leave out any useful information.
How you prepare the weekly chart is entirely up to you, but having something quantifiable will enable easier tracking as the weeks go by. There are many online resources from support groups and healthcare centers that offer sample weekly charts and trackers. A weekly chart typically lists the usual symptoms of endometriosis and allows for ranking them on a scale of 0 to 10, with 0 indicating no symptom and 10 denoting highly severe symptoms that are difficult to cope with. It is a good idea to make some space below the chart to add notes such as your overall feeling during the week, how the symptoms have affected your daily activities, what medicines you have taken, etc.
While regular tracking helps build a good record of your symptoms, it is completely up to you on how long you wish to track them.