1) When did you start noticing symptoms, or that something wasn't right?
It wasn't until my actual period started, at 15, did I truly know something was not right. I was woken up by the pain. It was comparable to my appendix trying to rupture and emergency removal at the age of 10, we didn't know until later, that was actually the onset of my symptoms.
2)What age were you when you received your official diagnosis?
I was 28 years old.
3) How many surgeries have you had?
I have had one laparoscopic surgery to diagnose and excise endometriosis, adhesions and scar tissue from my appendec-tomy. So, two and counting. We are going to discuss further surgery options in March.
4) Besides endometriosis, what other illnesses/problems are you struggling with?
With the disease progression and delayed treatment, I suffer from Interstitial Cystitis (a bladder condition caused from the adhesions to my bladder) and also IBS (from the adhesions to my bowels). I also have large endometrium cysts that form and rupture. My largest has been a tennis ball size, on my right ovary. I have been diagnosed with anemia. I suffer from passing out spells as well. Sadly, I was misdiagnosed with hyperglycemia, along with dysmenorrhea. They even suggested Chron's disease.
5) What treatments have you tried?
Besides my excision surgery, I have been on every form of birth control they make, plus estrogen only pills. Then went to progesterone only hormonal treatments. I had horrific side effects and needed hospitalization. I have been going to Physical Therapy, along with Pelvic Floor Therapy for over 6+months. I have also completely changed my diet, with help from a Registered Dietician. Along with a lifestyle change to being more health conscious. Removing toxins, artificial and preservative ingredients from my daily life, along with incorporating yoga, meditation and gratitude practice daily, are also things I have tried and find helpful.
6)What, if anything, helps when you are in pain?
My heating pad is my bestfriend. Along with my bath tub. Heat helps me SO much, and also ice packs for when I have an IC flare, then alternate with heat. I use CBD products and have pain medication for when it gets uncontrollable. But there have been times I have had to be rushed to the ER and given pain shots, because nothing I've done has touched the pain. That is when it can get pretty scary.
7) What are symptoms you deal with?
Daily stabbing pain in my right side. I have a lot of swelling that occurs in my abdomen. Along with hip, lower back and thigh tightness/severe pain. At times it makes me unable to walk on my own. But my main issues occur two weeks before my cycle (ovulation) and then my actual cycle. I have severe nausea (dry heaving)and bowel issues (constipation one minute to diarrhea the next). I get severe pelvic pain to the point I have passed out on multiple occasions. When my actual cycle starts, I can only lay in the fetal position with my heating pad. The cramps are so debilitating, I can't move I can't talk and can barely breathe at times due to the pain, leaving me needing to be carried to the bathroom. I am solely dependent on my husband and family during this time. Over a week or longer ,(depending on my cycle flow, I have had them last for over a month) I experience pain with sex and bladder/bowel movement pain that makes you cry for hours and not able to function properly for days after.
8) Who is your biggest support system?
My husband hands down. My mom and family, who take care of me when I am unable to take care of myself. And my fellow Endo Warriors. I am fortunate enough to have met some amazing ladies. One I am even honored to call my best friend, Abby!
9) Do you have any advice for those suffering this disease also?
You are not alone. It feels that way, believe me. Especially when you are on the bathroom floor, bawling your eyes out and asking God why? I know you feel so alone, but you are not. Talk about it, express your pain and frustration. Do not allow it to consume you (it's hard), but meet others who suffer, share your story with them! You are making a difference every time you do. To someone somewhere YOU have made them feel not so alone in their fight. There will come the day Endometriosis is recognized for the awful disease it is. And YOU will have been a part of making that possible. Just by sharing your journey.
10) What is your favorite thing about the endo community?
Our fierceness. Our unwillingness to back down or be quite or stop, when the whole world is telling us to shut up. That it isn't "proper" or "that's gross" or "too much information" to discuss about our periods. That it's taboo. We call bullshit, we stand together and WE will make a change. That's my favorite thing about being an #endowarrior; the change we will make and the community we have built.
You can find this sweet lady on Instagram and follow her @malorabeath