For Endometriosis Awareness Month, I have put some questions to my endo sisters, and have invited them to share their journey here with you.
How long you have been suffering?
I have been suffering for just over a year.
What does your pain feel like?
Emotionally, the pain makes me feel like I am on an awful roller coaster that never ends. I will sit and stew about how much I hate my husband and then I get in the car and hear a song and burst into tears because I love him so much. I feel paranoid that people are looking at me or talking about me. I get so desperate because no one will help me.
Physically, I get nauseous. I throw up. I get diarrhea and then when I am bleeding, I can’t go to the bathroom. If I do get lucky enough to go, I have waves of labor pains that follow. I pee blood. I limp because the pain goes all the way from my back down to my toes on one side. I bloat up like I am nine months pregnant. The pelvic pain feels like someone is stabbing and then twisting the knife. It makes me wish someone really would just so it would all stop. I can’t stand up but I can’t sit down. It is awful.
What you have tried in order to be pain- or symptom-free?
I have taken just about every non-prescription drug you can try. Over the counter pain relief doesn’t touch the pain. Gas X, stool softeners, acupuncture and herbal remedies as well as hormone injections from the doctor, special diets, etc. etc. I find the most relief comes from Tramadol, heating pad and my mobile TENS unit. I am still looking for, researching and trying other remedies. I will not give up.
Have you ever been discriminated against at school, the workplace or the public eye, just for being ill from Endometriosis?
My job made me fill out FMLA paperwork. They still make it extremely difficult to get time off. I had to go through the embarrassment of telling HR all about my problems, symptoms and doctor visits. They also were then allowed to ask my doctors God knows what before signing off on it.
As for my co-workers, they have made living with the disease even more difficult. “You don’t look sick. You are a hypochondriac. You need to stay off the internet. There is nothing wrong with you. Everyone has had that and they were fine after a hysterectomy. What’s the big deal? Look at what you are eating. No wonder your stomach hurts all the time!” Then after each doctor visit, with no new answers or cures, you get the smirks. They scoot together and whisper.
Do you have access to adequate health care?
I have very good insurance…for everything except an excision specialist. I cannot leave the state and there are no specialists in my state. I have gone doctor to doctor, always leaving with the same answer, “There’s nothing we can do. Lupron is your only option.” Unfortunately that is the one thing I refuse to try.
In August I had new symptoms arise (all of the veins in my ankle burst) and my doctor did an ANA test. As many women with endometriosis are at higher risk for autoimmune diseases, I tested positive. I have now also been diagnosed with Arthritis in my low back and ankle as well as Fibromyalgia and IBS. My last rheumatology visit discovered that I am also vitamin D deficient. I have been put on Gabapentin for my severe PLMD, daily meloxicam for my Arthritis and am taking extremely high doses of vitamin d trying to get my levels back up. I refused cymbalta because my rheumatologist has never said it, but I think he thinks it is all in my head. He is sending me to the gastroenterologist next week because he wants to confirm his diagnosis of IBS and not something like Crohn’s. The journey just never seems to end.
Do you have an in-person support system (family, partner, friends, etc.)?
My family has been great support even though they can’t always understand. For the most part, my friends have been very supportive as well. After a while, you just get tired of talking about it and think they must be tired of hearing about it as well. Sometimes they think I am doing better just because I haven’t said anything in a while.
What are your best coping mechanisms?
On the journey I have been on in the last year, I started journaling. It seemed to help and gave me something else to focus on when I get up at 2 and 3 in the morning daily. I decided to publish my story in hopes to help people like me not feel so isolated and alone. I wanted to share my story with people who love Endo sufferers because the things they sometimes say and do can inadvertently make you feel worse. I hope they will become more aware of how words can affect someone who is suffering or what it actually feels like to have this disease. Finally, I wish more doctors would read my story so they can truly know what their patients are going through instead of just listening to a laundry list of symptoms.
Anything else you’d like to say?
My book is called Endopocalypse.