Michelle N. Johnson is my next guest for the Chronic Illness Support Guest Blog! You can find information Michelle has provided about endometriosis and adenomyosis as well as some of her journey below. 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, when you were diagnosed, how and what led to the diagnosis, etc.
I am the founder of the Fighting Fiercely Endometriosis Awareness movement and author of Fighting Fiercely: Unveiling the Unknown about Endometriosis. I am also a patient advocate with the Chronic Disease Coalition. I was born and raised in Chicago and was 33 years old at the time of my diagnosis. I had been experiencing excruciating pain in my midback on the left side for quite some time, and after being sent to the ER for what was thought to be a ruptured appendix and an eventual 10 day hospital stay, I was finally diagnosed with stage 4 Endometriosis. As it turned out, what was thought to be the ruptured appendix, was actually a large endometrioma that had begun to press against my bladder and kidneys, causing an infection.
How long did you suffer from symptoms before you were diagnosed?
At the time of diagnosis, I was told that I had one of the worst cases my doctor had ever seen, and that based on the severity of disease present, I’d had if for at least 10 years. In hindsight though, knowing what I know now, I believe I’d been having symptoms as early as 16 years old.
What treatments have you tried? Did they help? Did you have side effects? Etc.
Over the years, I have tried many treatment options, with varying degrees of success. I have tried high dose pain killers, including: (Ibuprofen 800 mg 3x’s/day, every day), Dilaudid, Fentanyl, Tramadol, Elavil, Neurontin, Mefenamic Acid, Vicodin, Norco, and Oxycodone. I’ve also tried hormonal therapies with continuous birth control and Lupron. I’ve tried nutrition and dietary changes as well, along with herbal and homeopathic remedies, pelvic floor therapy and therapeutic massage. I’ve had 2 excision surgeries and a hysterectomy.
Elavil helped really well for a few years. But, it took quite a bit of experimenting to find the right dose to control the pain and allow me to function for daily life activities; as higher doses can cause marked drowsiness. After experimenting with many types of birth control, I have found more long term relief the past few years taking Sprintec continuously. Though I’m not committed to any particular dietary label, I have found that eating a more plant-based diet and continuing to eliminate my trigger foods gives me even greater relief than most of my medications.
I’ve had the worst experiences with Neurontin and Lupron. Neurontin gave my equilibrium imbalance and vivid night dreams. I also had terrible vertigo and severe nausea. Lupron was the worst of them all. Almost immediately upon starting the drug, I experienced hair loss, rapid weight gain, severe acne breakouts, night sweats, severe hot flashes, vertigo, seeing spots, hearing sounds that weren’t there, blurred vision, memory loss, headaches, vaginal dryness, bruising very easily, and extreme mood swings. I developed severe depression, anxiety, and suicidal ideations. I still experience severe TMJ and teeth clenching/weakening 11 years later. I also still struggle with episodic anxiety and depression as well.
My best experiences have been with excision, pelvic floor physical therapy, and hysterectomy.
My first excision was is 2008 and it would be another 10 years before I’d need another one. I received pelvic floor therapy after both of my surgeries and I feel that it played a big part in strengthening my core and helping the muscle spasms that I used to have. I recently had a hysterectomy one year ago, and that was for my severe diffused adenomyosis, which I was diagnosed with several years after endo.
What are five must-haves that you can’t live without that help you cope with your chronic illness (Ex. book to read, coloring book, heating pad, bath, etc.)?
Five things that I must have, especially on a bad pain day are:
My hot water bottle, herbal tea, my microwavable neck wrap, valerian root extract, and Netflix.
Do you have other illnesses? If so, would you like to mention them? What are they?
In addition to my endometriosis, I was diagnosed with severe diffused adenomyosis. I recently underwent a hysterectomy last May for it.
What is something you wish you would have known when you were diagnosed?
I wish I had known that there was no cure. My first doctors left me with the impression that once I had surgery, that would be final and I would never have to worry about it again. If only I had known then, how wrong they were.
How does it affect your daily life?
Since the surgery, it doesn’t affect me in terms of pain and discomfort as much as it used to. However, I still need to be mindful of what I eat. I still need to take care to not physically over-exert myself and keep my stress levels at a minimum. I still need to monitor and track my symptoms, being sure to note any significant changes. I still have to remember that absence of symptoms does not equal absence of pathology and I still have to use all of my management tools at 100%, even if my symptoms are repressed or negligible.
How are you doing now with symptoms etc.?
Right now, I’d say I’m about 90% pain-free, following my last surgery. I do still have my right ovary, so I do have mini flare-ups from time to time. I also struggle with occasional fatigue, but overall, I would say my quality of life and health has improved significantly.
Is there any other information you would like us to know about your illness?
The main thing I want people to know about my illness is that it does not define who I am. It has definitely repositioned and restructured many areas of my life. It has caused me to look at myself and learn to love myself in a new and different way. While it has become an additional part of my life, it does not control my life.
What piece of advice do you want to give readers?
I would say to readers, please don’t discount or ignore the toll that this disease can take on your mental health. Consider making therapy or counseling an integral part of your treatment plan. Depression and increasing suicide rates among endometriosis patients are steadily increasing, yet it is largely left out of the discussion when we talk about treatment plans and symptom management.
How can someone show support?
If someone in your life has endometriosis, one of the best ways to show support is to simply listen. Don’t listen to respond. Don’t listen to always offer advice. Just listen and let them be heard. Often, we are dismissed in so many ways by so many people, the biggest show of support we can receive is to have someone simply say: I hear you, and I believe you.
How can readers connect with you?
Readers can connect with me through any of the following:
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.