JoJo Higgs is my next guest for the Chronic Illness Support Guest Blog! You can find information JoJo has provided about Endometriosis as well as some of her journey. We hope you find this information helpful in your journey with Endometriosis and/or chronic illness.
Tell us about yourself, what illness we are talking about today (definition, symptoms, etc.) and when you were diagnosed, how, what led to diagnosis, etc.
I live in Southern Illinois, USA but was initially diagnosed in Southern California. I moved back to my home state just a few months after diagnosis. I am approaching 30 in December. I was diagnosed a month before my 23rd birthday. Only 4 years later I had a total removal of uterus, tubes, ovaries and cervix. Surgery each year escalated my endometriosis pain very, very quickly. My symptoms first started when I was 5 years old with breast pain, then 11 with first period, blood to my knees soaking jeans from just standing up in 6th grade health class.
How long did you suffer with symptoms before you were diagnosed?
Almost 20 years from 1st symptom. Daily suffering for 2 years before diagnosis.
What treatments have you tried? Did they help? Did you have side effects? Etc.
Laparoscopy each year- no relief
Lupron, Depot Provera, Mirena, Implanon, etc- no relief and terrible symptoms
Hysterectomy- quite a relief although they didn’t “find” adenomyosis.
What are five must haves that you can’t live without that help you cope with your chronic illness?
Cannabis, music, heating pad, a fluffy blanket, and a good book or coloring book to keep my mind busy but occupied
Do you have other illnesses? If so, would you like to mention them? What are they?
Endo, IC, Fibro, Sciatica, Scoliosis
I have also been diagnosed with PTSD and general anxiety disorder.
What is something you wish you would have known when you were diagnosed?
Don’t go to the ER unless you are legit dying, EVEN THEN they won’t take you seriously so you have to command the floor. And if they don’t listen… MOVE ON TO THE NEXT DOCTOR until you feel SAFE.
How does it affect your daily life?
3 years post hysterectomy and It feels like my bowels and bladder are adhered. I have daily severe bladder, bowel, and lower back pain that requires a cane, walker or wheelchair depending on the day. Other days Im able to walk without assistance but still in terrible pain. I haven’t been to a doctor for my endo since my post op.
How are you doing now with symptoms etc.?
Mentally, it is draining. Physically, it is draining. But the Endo Community is amazing and the Volunteers at Endo Crisis Connection are amazing. We are not only there for the whole community, we are great at keeping each other company and making sure no one is falling below the water.
Is there any other information you would like us to know about your illness?
Endometriosis is a full body disease that has been found to create its own nerves and hormones. Hysterectomy is not a cure for endo. Even though patient experience and community is SUPER IMPORTANT, every patient experiences endo differently than the next. Some have no pain. Some have pain only during periods. Some have excruciating pain daily. We are everything but cookie cutter.
What piece of advice do you want to give readers?
I believe you! Your pain is valid. You are valid! DON’T GIVE UP! The revolution has begun! Please hold out for the change to come. Until then, please don’t fight alone! We are always available at Endo Crisis Connection on Facebook and soon will have our own .ORG.
How can someone show support (awareness colors/ribbons, etc.)?
The Endometriosis awareness color is yellow.
How can readers connect with you (Ex. Instgram, Twitter, Facebook, Website, etc.)?
Guest Chronic Illness Blog coming soon! Guests will be asked to provide information about their illness and must haves while experiencing pain and other symptoms.
Samantha Bowick, MPH is the author of "Living with Endometriosis: The Complete Guide to Risk Factors, Symptoms, and Treatment Options" and "Living with Alpha-1 Antitrypsin Deficiency" as well as a fellow sufferer of multiple chronic illnesses and patient advocate.Write something about yourself. No need to be fancy, just an overview.