These stories can help other women so they do not feel so alone when trying to cope with effects of this disease.
by Kelsey
(Saint Louis)
I am 28 years old and have been suffering quite some time now. After a bad divorce at 24 and a lot of pain and suffering I pulled my life together. I got my undergraduate degree, lost 85lbs, I got my first real job, then got my masters and got hired on a fortune 500 company.
I got engaged and bought a nice house, and it seemed like I had the world in my hands. I was doing yoga, kayaking, hiking, running and loving life.
The last two years, something has felt off and it always seemed to be around my period. My periods were very long and very painful, I started having bad mood swings and started getting very dizzy and shaky and having hot flashes. I visited the ER many times, even saw my regular doctor and gyno, who put me on birth control.
Every time I go on birth control, I end up gaining 5lbs in 2 days, and get so sick I can't function. I lasted 3 days on birth control and decided I would rather deal with my periods than birth control.
I moved to take a better job and be closer to my fiance about 9 months ago and it seems like that is when hell broke loose. I got a job at a great company, one of the best companies in the area, but immediately I started getting sick. Within a few weeks I was staying home at least once a week from headaches, dizziness, or period pain. Then the constipation, bloating started, mood swings got worse.
My coworkers looked down on me for being so sick and my boss had a hard time understanding. I felt like a worthless loser. My boss got to the point of threatening my job.
December 2015, I got pregnant, and was in shock, because with my health problems, I didn't think it was possible, even before endometriosis. I couldn't accept it, I was about 6 weeks pregnant and finally believed this could happen after about 3 positive tests. A few days later, I had severe cramps and pain and started bleeding, I had lost it.
I missed events and parties. I have had to leave occasions early because I was so sick. I have gone to things and completed or was in a horrible mood because I felt so bad. My severe pain and mood swings ruined a trip I took my fiance on for his birthday.
January 2016, I had an MRA, heart tests, blood tests, everything, put myself $1000's in debt from medical bills and no answers. My parents put guilt trips on me for missing so much work and events and occasions. My fiance is always upset and mad at me and can't deal with my mood swings.
After my last period, I got so depressed I truly became suicidal, and started seeing a counselor. I take depression medicine, and just couldn't understand why i suddenly was so depressed.
My health has ruined my career and self esteem. Sometimes I feel like I am just waiting to get fired.
I saw a new gynecologist 4 weeks ago and she recommended a laparoscopy asap. I had my laparoscopy 2 weeks ago, and was diagnosed with severe endometriosis. My ovary was destroyed and non-functional. She had to remove it. It was also found on my bladder and rectum.
She couldn't remove it there and said lupron or a second surgery was the only way. She said I had a very small chance of getting pregnant immediately after treatment. She said if I waited too long I would just have miscarriages or become infertile or my second ovary could be ruined.
I am getting married next April, and had to tell my fiance that we have to have a child asap. He is having a hard time dealing with it. He doesn't want a kid and isn't ready for one. He is only doing this for me. I am scared he won't help me and be distant and angry for forcing him to have a kid with me. This too makes me depressed. What option do I have?
Upset my fiance, probably raise a kid practically on my own and have to have a kid before I am ready or miss out on ever having a kid. The thought of never having a kid kills me. I wanted to wait until we had some bills paid off and were together a little longer, but I literally have no choice.
I was supposed to go back to work last Wed after surgery, but I have been back to work two half days. My surgery actually wasn't bad, but the lupron is awful and I am scared I am going to loose my job because of it. I have had a few good days, but some days are so bad I can't even get out of bed. I cry all the time. The first day on it I cried 5 hours.
I am not sure if it was reality of everything setting in or the lupron. I have horrible hot flashes, so bad I almost pass out. I am scared to leave the house because of it. Headaches haven't been too bad. I had one really really bad one the first day and have had one since yesterday afternoon. I tend to have nausea off an on most days.
I have sat in the bathroom at work for an hour, scared of vomiting or passing out. I feel best just sitting at home where I don't have to worry about a side effect coming on.
I am sad and miserable. I am completely out of vacation and sick time from my surgery and being sick the last year. I am pretty sure everyone at my work thinks I am just lazy and worthless. My boss is somewhat understanding, after several doctors notes and telling him how severe my disease is.
I am now sitting at home, not getting paid. I don't know how I am going to pay my bills, or pay for my wedding next year. I don't even know, how long my job will keep me before deciding that right now I am completely worthless too them.
I used to be so happy and energetic. I loved life and now I am insecure, scared and sad. My relationship and job are getting destroyed and I feel very alone. I wonder each day how this could happen and why. I know that it could be worse, I could be dying. But sometimes it feels like I'm dying inside.
The only good thing is I know that this is the worst of it all and hopefully one day it will get better. I am terrified I won't ever have a kid. I feel like my life is out of my hands and I have no control.
I am crying writing this, because this hurts so much, and I feel like no one understands. I have received so many text messages and flowers and people I hardly talk to anymore have told me they're thinking about me, but they don't really understand. My fiance doesn't really understand, my parents don't understand. Even my mom had endometriosis, but I still feel like she doesn't understand what I am going through.
I really thought I was a strong person, but this has made me feel weak, it has made me feel like a failure and a loser. I don't know how I am going to get through this and survive this. I am so scared of how hard the next year is going to be. I don't really know what to do but cry and distract myself from the pain and sadness by watching hours of TV and playing candy crush.