Managing Your Illness

One of the hardest things about being diagnosed with endometriosis is realizing that you have an incurable disease. The symptoms of endometriosis can be cyclical at first, in tune with your menstrual cycle, but as the disease progresses and you age further towards menopause, the symptoms can become more severe and increasingly more frequent, often becoming constant. It is worth giving some thought to how you can manage balancing an incurable, painful disease with your busy life involving family and job.

Talk to your partner and family

Not everyone understands what it means to have endometriosis, and you should never be made to feel like you're making it up or faking. You must explain clearly and remain firm in setting limits. You have to explain that some days you are not capable of doing certain activities, even if you were the day before or the day after. That particular day you cannot. It's hard for people to understand a disease they can't see, and one that is cyclical, but you must be clear in letting them know that there are liits on what you are able to do from one day to the next.

Find the right doctor

You need to find a doctor who is willing to work with you, who is willing to listen and discuss your treatment plan, and who is able to give you the medication you need and be willing to let you make decisions that you feel are right for you. Don't just accept the first thing they can write on their prescription pad. Do you own research and make a decision after talking with your doctor as to what you're willing to do. If you decide you don't want to take synthetic hormones then your doctor should be able to accept that and offer a different treatment option. If you need pain medication or your current pain medication isn't working for you, you need a doctor who is going to be willing to try a different regime that will control your pain effectively. If your doctor refuses to let you try certain medication or who doesn't take your pain seriously, find another doctor! Take control of your own health care!

Intermittent FMLA

If your employer has more than 50 employees then you may be eligible to apply for intermittent FMLA. This is a federal ruling that allows you to take off sick time whenever you need it and not jeopardize your job. Most employers only allow a select and limited amount of sick days, but when you have endometriosis you already know that every month you may incapacitated for a day or two because of your period. This ruling allows you to take off whatever days a month you may need (as long as it doesn't exceed the yearly limit) and your employer has to comply. You need to be approved by a doctor and have them fill in the correct paperwork, and your leave may have to be renewed every 6 months, but that is a formality as endometriosis is an incurable condition which means your health status is unlikely to improve. This is a very helpful and much-needed law....use it!

Don't feel guilty

Here's an important take-away point: if you take narcotic pain medication, you're not an addict...you're in pain. There is a stigma about taking narcotics because of the association to addiction. However, you are the very person this medicaton is available for. Take it when you need to, and don't take it when you don't need to. Try not to take it every day so as not to build up a tolerance, but if you're prescribed it, and you're in pain....please take it. If you are not prescribed it, and your pain is not being managed, seek out a doctor who is willing to work with you and give you adequate pain control. Be your own advocate.

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