My Life with Endo - My Personal Story
I have attempted to write about my life with endometriosis before, however I have never felt like I could truly express what it's like in the right way. Here I am trying again, and I am going to try and show what life with endo is like, at least for me. Please keep in mind that it may present different for each individual, and this is my personal experience.
My earliest memories of something not being right are from around 6th grade, I was about 11 years old at the time. I can remember when I first started menstruation, and how terrible my pain was, and how heavy each period was. They became worse and worse, and heavier and heavier. The embarrassed 11 year old girl who would wear tampons and mega pads, and still end up at the nurses office needing a change of clothes. Often I was given a coat or shirt from lost and found to tie around my waist and sent back to class. I did not know any better, I did not know this wasn't okay, and I did not understand that my medical issue was being pushed off.
It didn't stop there. Eventually I believed that I was living in a body that was slowly trying to destroy me. I would be sick 3 out of 4 weeks a month. The week prior to, the week of, and the week after my period. I missed school, went in late, left early, until eventually around the age of 14 I had my first laparoscopic surgery where they found endometriosis. This was not surprising to my mother, as she too suffered for years with this debilitating disease. She had a hysterectomy after I graduated high school, and has luckily not had a flare or build up since, however it's important to remember a hysterectomy is not a cure. There is no cure.
There are many symptoms associated with endometriosis, including, but not limited too, heavy and painful periods, painful intercouse, anxiety, chronic fatigue, increased pain during bowel movements, weight fluctuation, exhaustion, mood fluctuations, migraines, constipation, nausea, lower back and abdominal pain, pelvic pain, digestive and GI issues, bloating, joint and nerve pain, and infertility to name a few.
I experience almost all of these symptoms. I don't remember when I started taking birth control to try and regulate and maintain my periods and endometriosis, but I do know I have tried just about everything on the market. I have failed on almost every medication as my body rejects most of them. I even attempted to do a medical trial though a local hospital, however I got violently sick from the medication and had to step down from the study. Several laparoscopic surgeries, and it's possible there could be more. After my last one a year and a half ago I was doing well for several months, then it was another emotional roller coaster when I started being very symptomatic again.
I have had an IUD for about 8 years now, and yes, it was swapped out once as each is only good for a certain amount of times. For me, it wasn't a great experience either time with the placement, however it's been the only thing that has given me relief at this point. I have been through more OBGYN's than I can remember, and currently see a wonderful endometriosis specialist.
I have dealt with the physical pain, missed out on events and opportunities, and dealt with the emotional pain and mental anguish not only caused by the disease, but also by professionals in the medical field who have said things to be that there was no evidence behind.
Telling me without even doing tests I had a 40% chance of having kids, then another doctor telling me I shouldn't bother trying, while yet another said I was too old to now even consider it with "your condition." It has taken years to grasp that these things were said with no evidence. However, now, at 35, I have come to terms with the fact that I most likely will never bear children. I have come to realise that I don't need to have a child to be happy. On my own, I found inner peace and let go of the notion I had, that in order to be happy I had to conceive. To this day, pregnancy and birth announcements are hard for me, being around babies is hard, yet somehow I find a way to be happy for the joyous occasions in others lives, even though I may always grieve in some way about my own inability due to endometriosis.
I share this because it's a part of my journey living with endometriosis and I know the same is true for every other women battling this disease. 1 in 10 women have endometriosis, and it goes undiagnosed or misdiagnosed far too often.
Being an invisible illness, often time others have no idea how much harder I push myself to be "normal" or how much more effort many things take, especially during a flare. People don't see me falling over in pain, crawling up the stairs, and spending hours attached to a heat pad.
I have learned to live with his disease, to live with the pain, to push through the pain, to cope with the pain. Again, there is no cure, so for me, personally, it's about the mental attitude. I stay positive as much as possible, of course it's not realistic to be positive 100% of the time, however I do my best. I stay active, honestly, for me, movement and fitness not only help me cope, but also help my symptoms be less intense. This isn't true for everyone. I try to be mindful about what I eat, I know certain foods are more triggering to my body than others. I don't necessarily cut them all out, but I have them in moderation, or infrequently, and never during a flare up. There is after all, no point in adding fuel to the fire.