Caitlin is my next guest for the Chronic Illness Support Guest Blog! You can find information Caitlin has provided about adenomyosis as well as some of her journey. We hope you find this information helpful in your journey with adenomyosis and/or chronic illness.
Illness: Endometriosis, Adenomyosis, Interstitial Cystitis, Adrenal insufficiency/Cushing’s disease
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.
My name is Caitlin, I’m 29 and from Boston, MA. Some of my favorite things include watching horror movies, traveling, spending time with my family, and my pets. I was diagnosed with Endometriosis at age 17, when I quickly learned that what I thought were normal things everyone felt was due to a chronic illness. At that time, I also didn’t feel fully prepared for what life as chronically ill would look like. I was told that things would be fine as long as I had surgery and took medication. Unfortunately my illnesses, although invisible, have had a significant impact on my life and functioning. I’ve had to medically withdraw from college a few weeks in, defer my admission to graduate school, and pass on other opportunities. It’s also been very isolating. Since I was a teenager, I’ve found so much support and a community through social media. I’ve been blogging since I was around 14 years old which has always been my outlet. Since that time, I’ve been diagnosed with multiple pelvic pain and musculoskeletal conditions. I also was diagnosed with a pituitary tumor from a rare disease called Cushing's four years ago. I’ve had 6 abdominal (laparoscopic) surgeries, a brain surgery, jaw surgery and many other procedures. I lost my left ovary due to misdiagnosis of torsion almost three years ago, and had a really difficult time. For the last three or so years, I’ve been working on healing my physical and mental health.
I learned at a young age that I needed to be my own advocate, and that all of the information I was being told was not necessarily fact or “end all be all” as I had been taught. It hasn’t been an easy journey, but I’ve learned a lot.
How long did you suffer with symptoms before you were diagnosed?
I remember always feeling very uncomfortable and sick when my period was coming, since my first one at age 12. I was diagnosed five years later with Endometriosis. My mom first suggested we bring up how sick my periods made me when I was 15 years old. I knew something else was wrong other than endometriosis when I was 21 and was having very different pelvic pain, and I was diagnosed with possible adenomyosis around age 22, which then was confirmed by MRI at age 24. My interstitial cystitis diagnosis was made during one of my surgeries for Endometriosis at age 22 as well. I was diagnosed with Cushing's Disease at age 25, after symptoms for four and a half years.
What treatments have you tried? Did they help? Did you have side effects? Etc.
It feels like I’ve tried almost everything! From western medicine to holistic remedies as well.
I was on continuous birth control for five years, which means I did not have my period at all due to the medication. It helped significantly basically until it no longer did. After some time, I developed headaches that would cause vomiting episodes which became frequent. Not only was this miserable, it was also causing me issues with work and school. Additionally I tried other forms of birth control including the IUD and NuvaRing. I’ve tried a variety of medications (oral, patches, suppositories) for my symptoms. I have been in some form of physical therapy (including pelvic floor specific and aqua therapy) for years. I’ve had some more invasive treatments such as sacroiliac joint injections and nerve blocks into my pelvis and pelvic floor as well. Lastly, I've tried alternative treatments such as cupping, acupuncture, dietary changes, supplements, CBD, meditation, heat, and ice. I’ve also most recently had a lidocaine infusion, and bladder instillations (infusion of medications into the bladder).
Many of the medications have had side effects, especially the hormones. I wasn’t pain free while on hormone therapy but my pain was much lower. Many of the medications we have tried for pain or other symptom management have caused some side effects such as nausea and fatigue. Quite a few things I’ve tried just have not worked, which is so frustrating.
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.)?
This is such a great question! I love hearing others’ must haves. Mine are definitely my heating pad (I have multiple so I can bring it to travel, or have a back up), the bath tub, music, my dogs and some form of CBD.
Do you have other illnesses? If so, would you like to mention them? What are they?
I have endometriosis, adenomyosis, interstitial cystitis, Cushing’s Ddsease (which is in remission since surgery, and I did have issues with Adrenal Insufficiency postoperatively, which thankfully resolved), ovarian torsion (not necessarily an “illness,” but I did lose my ovary), pelvic floor dysfunction, chronic fatigue syndrome, migraines, and some other musculoskeletal issues (mainly related to my back/spine, hips and pelvis - it would be too lengthy to write it all out).
What is something you wish you would have known when you were diagnosed?
I wish I would have known that I wasn’t alone. It was extremely isolating and confusing being diagnosed with a chronic illness as a teenager, especially a pelvic pain condition. I didn’t know of anyone that was my age who had a similar chronic illness. I didn’t know how to talk about it for a while. I was not sure what to expect. I was in denial that I was chronically ill, which is a normal response to such a life changing event. I wish that I had a mentor at the time. It would have really helped to have support for not only myself, but my family as well. They were also adjusting to this life change. I had a really hard time, and I wasn’t prepared for the toll that this was going to take on my life in every aspect. I had to medically withdraw from college during my first semester and transfer schools due to a severe flare. If I had been prepared for that, then I possibly could’ve considered alternative options.
How does it affect your daily life?
Everyday I wake up with chronic pain and fatigue, regardless of what I do or do not do. I struggle with daily symptoms such as bladder pain, muscle spasms, and brain fog as well. There’s a lot more that goes into living with a chronic illness. Something else that others may not realize is how you need to plan ahead, and walk through what each day is going to look like. Constantly weighing the pros and cons for things that others may not take more than a second to consider.
How are you doing now with symptoms etc.?
I’m doing alright- I’ve had a hard time for the last year with managing my pain, fatigue, insomnia and weakness. I’d say things are definitely improving! It’s been very overwhelming and frustrating but I’m hopeful that I’ve found a good regimen. I’ve also been in physical therapy for the last three months and have made significant progress especially with my back pain, which is exciting. I still have high pain days, but have reduced some of the issues I was having such as vomiting from pain.
I am often asked if I’m pain free since having a hysterectomy for Adenomyosis and other treatments for my chronic diseases. The thing is, these diseases are whole body diseases. There are long term effects to chronic pain such as the toll it takes on the central nervous system (central sensitization). Unfortunately, it isn’t as simple as having surgery and removing the uterus. I have other health issues, and am still working hard to build up my strength. There is a lot of healing to do!
Is there any other information you would like us to know about your illness?
I have been working on a social media campaign to discuss the myths that exist for endometriosis and adenomyosis specifically. One of the most important things is that not every person will have every symptom of a specific illness. Not everyone will fit the text book diagnosis. I see a lot of information shared about the staging system and endometriosis. What stage endometriosis someone is classified as does not correlate with pain.
What piece of advice do you want to give readers?
Do not give up on yourself. You know your body best. Invisible illnesses are very complex, and affect more than the associated organ or body part(s). If you are told you are fine, tests are not ordered, or a plan is not created - seek another opinion. Do your own research (with caution: only the most negative things are typically posted online, and not everything is factual, accurate information regardless of how it is presented). Keep a journal to track your symptoms and any trends.
Also: There are amazing organizations even for rare/complex illnesses such as NORD (National Organization for Rare Diseases), which was such a great resource for me when I learned I had abnormally high cortisol, which lead to my diagnosis of Cyclical Cushing’s Disease.
How can someone show support (awareness colors/ribbons, etc.)?
Endometriosis : yellow + Center for Endometriosis Care centerforendocare.com, Endopaedia : endopaedia.info, Vital Health Endo Center :vitalhealth.com
Adenomyosis : purple : endopaedia.info, centerforendocare.com
Interstitial cystitis : yellow : ichelp.org
Cushings Disease/brain tumor : grey , Cushing’s Support and Research Foundation: https://csrf.net/ & Brain Tumor Foundation braintumorfoundation.org
How can readers connect with you (Ex. Instagram, Twitter, Facebook, Website, etc.)?
Facebook (under construction!): @chronicallystill
Website/blog: www.chronicallystill.org (under construction!)
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.