Endometriosis, or “Endo” for short, is one of the new hot topic items that is getting a lot of screen time. There are many more people that are coming out and saying they have Endo – some actually do and some don’t. There are also a lot of health care providers that claim they are experts on Endo and can help, but many only know what was in their textbook.
I have been living with Endo all my life but as I get older, it becomes more pertinent and more debilitating. This may be TMI but I got my period at nine years of age -way earlier than a woman should, and spent the majority of my adolescence in pain and calling out of school because of my symptoms. When I finally went to the OB, I was told it was all normal and probably not as bad as I expressed because what did a young teenager know. I was put on birth control to regulate my periods and that was it. But I never got better.
In fact, it wasn’t until I moved to Florida that I found an OB that took more than 5 minutes to examine me. Ultimately he realized that something was indeed wrong with me and we started a plan. Since it has been almost 20 years, and I ultimately wanted children, we did not want to do surgery but started a DepoLupron injection series. That meant 1 shot per month for 6 months and by shot I mean an actual horse tranquilizer- I even had nurses try to change the needle to no avail.
For six months, and several months thereafter, I was less than 30 years old and menopausal. I had all the symptoms. I had the hair loss, night sweats, nausea, hot flashes, insomnia, weight gain… I felt like a shell of myself but the monthly pain did stop. So did I do the right thing?
It has been about six years since those injections and I have moved across the country. The monthly pain has returned. The nausea returned. The debilitating cramps and bleeding have returned. Many don’t understand what I’m going through and I don’t want many to know… I pop aspirin and OTC pain killers like Tic-Tacs. I live with heating pads and always have one in my purse. I go without eating for 24-48 hours and I’m famished. I can’t move much. My back hurts. I usually don’t sleep but I’m so tired. I want to be held but don’t want to be touched. I want to cry but can’t show emotion. I can’t stand up straight or lay down. My head starts to pound and I usually get a migraine.
So what have doctors told me? Honest to God…
“Hurry up and have children so we can do a hysterectomy.”
Most say that because pills don’t work for me and I have stopped altogether because of the side effects. Surgery is not something anyone wants to do because of the risk of scar tissue plus the surgery is temporary and the Endo will return.
So what do I do? I live with it. Every day. Every month. Every year. And I am surrounded by some of the best people in the world that understand that even though what I have cannot be seen, it exists. Also, I have lost weight. I research my disease. I have joined support groups. I talk to my friends that have it too. I apply heat. I exercise often. I meditate and do yoga to help push through the pain. This all helps. And I have found a cocktail of multivitamins and natural supplements that help alleviate a degree of the pain. I smile. I get up in the morning. I breathe.
I don’t let the pain live through me, I live through the pain.