I started this post 3 months ago when I was still struggling to balance work/school/children/home/marriage but as most of you things have gone downhill since then. It was a full schedule packed from 7:00 in the morning to past 10:00 at night. Now? Not so much. I don't love being on the go at all times but I did love that I had goals and I was absolutely killing it as a mother, student, and employee.
I really wanted to share this because I feel that some people don't realize how much my life has been affected by my illness. I feel as if I'm not being heard by my numerous health care providers so here I am-- shouting into the void of the internet in the hopes that someone will read this and either understand or maybe learn something.
1 in 10 women have Endometriosis. Most of these women are sick for several years before they are diagnosed. I won't speak for everyone but in my experience, most doctors like to say that I just have acute PMS symptoms and it's totally normal. To these doctors I would like to ask: Is it normal for a 26 year old woman to not be able to walk for more than 5 minutes before experiencing pain? Is it normal to hurt so badly every single day that eating is a struggle (because I'm too busy getting sick)?Is it normal to experience acute blood loss for 5 weeks straight? I had so much blood loss in the months after my son was born that I was told if I bled for an hour more I would have needed to receive blood. Did they act like that was an issue or even KIND OF a big deal? If you guessed "Nope" then you win a prize. How about the fact that I can barely hold my 4 month old baby? My son that loves to be rocked to sleep... I can't do that. Ask my husband. Don't even get me started on what this has done to my marriage. Not that Joey isn't an amazing, supportive angel (as always), but there are many things we can't do anymore. We plan our outings around how long I think I can manage before I run home to lay on my heating pad. I have basically bailed on anything social for a while now. The worst part of it all is that NO. ONE. CARES. I don't mean no one as in whoever is reading this. I mean no one like my OB. My primary care provider. My therapist. The specialists I have reached out to. I either get no answer at all or a pat on the back and a condescending smile. Even though I've been a patient for four years now at OB/GYN, they acted like I was a drug addict when I finally asked for pain medication to help me cope. I've been asking for a solution rather than something to treat the symptoms since day one but I think we all know I was playing the four-year long con in order to get drugs, right?
So now my day in the life looks like this:
Take care of the baby, cry, sleep, clean, cry some more, try to play with my children, cook dinner, wait till the kids go to bed, and then sit on the couch with Joey and CRY.
Every single day, all day I am experiencing a pain level similar to what I felt in the early stages of labor--between "maybe we should go to the hospital" and "GIVE ME THE EPIDURAL".
I have tried yoga, meditation, heating pads, exercise, begging for surgery, literally crying in my doctor's office and telling him that I am most definitely NOT OKAY and so far I have gotten zero help.
I had to take my health into my own hands and leave my position at the library so that I could try and minimize my pain due to the high activity level of my job. I only worked part-time and even that was too much. I can't begin to explain how much it broke my heart. I know a lot of women would be over the moon to be able to stay home with their children but I am very passionate about my library, my programs, and the teens I worked with for almost two years. Not to mention my coworkers. I stopped in today to bring them donuts and hugs and as soon as I walked through the doors I could feel the tears in my eyes. It was an exhausting job even when I was healthier but it was one that I was happy to go to every day.
Right now, my options are limited. I am taking 9 supplements a day in order to try and get through school now that it is back in session. I can't run. I can't play. I can't pick up my children. I can barely have sex with my husband. I want my life back.
If you know someone with endometriosis please, please do not think it is just like having a "bad period" because while PMS can definitely be debilitating and awful, I have never experienced anything like this and every single day I hope to see a light at the end of the tunnel.
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