Amy Lynn Di Cristo is my next guest for the Chronic Illness Support Guest Blog! You can find information Amy has provided about multiple pain generators as well as some of her journey. We hope you find this information helpful in your journey with multiple pain generators and/or chronic illness.
Topic: Multiple pain generators
Tell us a little bit about yourself:
Amy is an artist by day and a graduate student by night. She has been married for almost a decade to her husband Dan and has two children. She is passionate about helping create awareness and knowledge for endometriosis, which she personally has had for several years, and for chiari malformation, a condition her daughter was diagnosed with in 2014. She is working on becoming a mental health therapist, hoping to work with people coping with chronic illness.
Types of multiple pain generator illnesses (there is an x by the illnesses Amy has):
Polycystic Ovary Syndrome x
Irritable Bowel Syndrome x
Pelvic Floor Dysfunction x
Hip Impingement x
Labral Tear x
Occult Inguinal Hernia x
Pelvic Congestion Syndrome x
Small nerve fiber neuropathy x
unspecified autoimmune disorder x
What piece of advice do you have for readers about multiple pain generators?
I am a person who lives with multiple pelvic pain generators. I am a non-medical professional, who has been coping with chronic pain for the last ten years. My medical odyssey started a few years ago when my pain disrupted all aspects of my life. In my younger years, pain played a part, but it was not constant. Pain would rear its ugly head for many days of the month, but I did have pain free days. As an adult, the pain free days became less and less. And then suddenly, there were no pain free days.
So began the endless shuffles between multiple doctors. Some doctors, through no fault of their own, shrugged their shoulders and referred me onto someone else. Most doctors truly wanted to help, but they didn’t know how. Some doctors were less than kind and made my pain worse.
It took years to receive the correct diagnoses. Eventually, I would receive several diagnoses, each plays a part in my pain. When I saw one doctor, who gave me all the possibilities of what my pain could be, I remember her saying “or it could be all of them”. I never imagined all the possibilities she gave me for my pain would actually be what was causing my pain.
I view my chronic pain as Horcruxes, a term coined by author JK Rowling in the Harry Potter series. A horcrux is a dark magical spell that puts a part of one’s soul into an object, so that one can never die. In the Harry Potter series, most of the latter books are spent looking for and destroying these elusive horcruxes. As someone with chronic illness, it sometimes feels like we are looking for horcruxes, blindly going after clues and hoping that it indeed leads towards relief and respite. Sometimes, when we figure out one of our horcruxes, it ends up being an incidental one, one that doesn’t really help things, but it’s good to know we took care of it. Other times, it is one of the important ones and it brings significant relief. This can lead to a multitude of procedures and therapies. The question remains: what to do when you are coping with multiple pain generators?
This is something I myself have searched for, many times. I kept trying to figure out on my own. Like, what was causing my pain? What can I be doing to change it? Often, I would find myself to be incredibly frustrated with not only my inability to figure out the pain, but my doctor’s as well. It was not until the last 3 years that I started receiving proper care for my conditions.
Looking at chronic pelvic pain, one must understand that often there isn’t just one cause for pelvic pain. There are so many systems in the pelvis and for that, our bodies may have a hard time interpreting the pain messages going on. There can be a lot of overlap in terms of where pain is and what type of pain is felt. Many times, I have had doctors blame my pain on my endometriosis, when in reality, it was a hip issue, and I have had other pains and conditions be blamed, when in reality it was endometriosis and adenomyosis.
With having both adenomyosis and endometriosis, it was hard to tell what was causing more pain. Both caused its own special brand of misery. Both conditions caused pain at all times of the month. Both caused pain during intimacy as well. But, for me, adenomyosis made me absolutely bed-ridden. I was unable to function when I had a uterus (and eventually a uterine remnant after I had my partial hysterectomy). It wasn’t until I had the cervix taken out that I saw a difference in some of my pelvic pain. Once my uterus and cervical stump were removed, it was clear a good portion of my continued pelvic pain was coming from endometriosis, which lead me to eventually pursue excision surgery. Eventually, it would be discovered I had other issues as well, nerve damage, pelvic floor dysfunction, a hip impingement and labral tear, and occult hernias. All of these issues caused pelvic pain, but there was such an overlap of symptoms, it made it incredibly difficult to find why I was having pain.
How did I figure all this out? Just like multi-factorial pelvic pain, there is not just one way to “figure it out”. There are multiple (ba-dum-ch) ways to figure out multiple pelvic pain generators.
Having multiple diagnoses, it is important to know our bodies. We need to have a good understanding of how our minds and bodies work. We have to be aware of how we manage our stress, how we manage our day-to-day living, and our triggers for pain. Symptom journaling can be an incredibly valuable asset. By noting when pain is occurring, one can look at pain patterns on paper. Looking at pain on paper can help note if there are dietary triggers, event triggers like intercourse, physical activity, menstruation, or even stress reactions.
Looking at Oneself Holistically:
The concept of holistic has a bad rap for being crunch or natural medicine only. In reality, holistic is a concept that refers to looking at the whole person experience. Our lives do not exist in a bubble. What we do and who we are blends into other parts of our lives. Symptom journaling can encourage a holistic view of self. It helps foster an awareness of our lives. Are we too stressed? Is our diet contributing to pain?
We have a lot of organs, guts, muscles, nerves, ligaments, tendons, and bones in our body. When one is in dysfunction, it can create a chain reaction within our body. Many people with endometriosis, for example, also suffer from adenomyosis. Many who suffer with these also suffer from pelvic floor dysfunction. Conditions like interstitial cystitis and irritable bowel syndrome can be comorbidities associated with endometriosis. When the pelvic floor is in spasm, it can put a taxing amount of stress on the other muscles within the body, creating even more pain. And for those with fibromyalgia, the intensity of pain can be triggered by weather fluctuations.
Seeing a specialist and having a good medical team:
Even Harry Potter did not defeat Voldemort completely on his own; others were with him on the journey to find and destroy the horcruxes. Truth be told friends, I know this one sounds like a no-brainer. But the reality of it is, with complex conditions, a run of the mill doctor may not be the right fit. While they may be great at the everyday scenarios, many doctors are not equipped to handle difficult diseases like endometriosis, occult hernias, or nerve damage.
The other caviet to seeing a specialist is having one that plays well with others. Communication with other medical professionals is key. There are a plethora of medical professionals who are incredibly talented within their specialty, but every specialist is not equipped to deal with every single problem. Afterall, we wouldn’t want a dermatologist trying to treat a brain hemorrhage.
For example, in the endometriosis world, there are lots of great doctors, who are trained in the gold-standard of excision. However, even in the best of hands, pain can still persist. In my own experience, I had pain after endometriosis excision surgery. In my eyes, my doctor is the best of the best. He has always had my quality of life in mind and taken into consideration my health goals. My doctor very wisely sent me to two additional doctors. At first, I was frustrated, because after being shuffled so many times around, I didn’t want to add another doctor to the team. But this time, I was pleasantly surprised. One was a pelvic floor physical therapist and the other a pelvic pain physiatrist. These were not ordinary doctors I was referred to. These were doctors that COMMUNICATED.
The three doctors were able to converse on my case, share their observations, and together help lead me in the right direction. The pelvic floor physical therapist helped me cope with a mighty pelvic floor dysfunction I ended up with after years of having endometriosis and adenomyosis. She also was able to help me figure out that my posture and hips were contributing to my long-standing pelvic pain as well. I never knew before going to pelvic floor physical therapy that my range of motion was incredibly limited and was affecting how long I could sit, stand, or even walk. The pelvic pain physiatrist, especially since she was so well versed in pelvic pain, was also able to help recognize symptoms of a hernia and affirm that the hip was a source of pain via injections and imaging.The pelvic pain physiatrist was able to refer me to the appropriate hip surgeon and to a hernia surgeon for a consult.
See the best doctor for your situation. Be picky. Ask questions. Make lists. Symptom track. Ask how doctors deal with complex patients. These questions and tips may save a lot of time and energy.
A Good Support System
Our support system matters. When we have people in our corner, we have people to advocate on our behalf and want what is best for us. They are there to share the joy we have and also bear the pain we have. Those within our support system cheer us on and are present for us. Support systems come in many forms. From partners to parents, to friends to therapists; each of these support system members can help foster within us a sense of resilience, to keep trudging on when things are hard and to be our voice when we are weak.
Persistence and Resilience
There is a weariness to chronic illness, especially when there are multiple and complex conditions we are coping with. There have been many times where I wanted to throw my hands up in the air (and not like I just don’t care). I saw a lot of bad doctors before I had a good medical team on my side. And the hard work didn’t end there. It took a lot of testing, symptom journaling, different medicines, surgery, and treatments to get to where I am now. Harry Potter didn’t give up when he couldn’t figure out how to destroy the horcruxes. He, Hermione and Ron continued to work at it, until they figured it out, and then began to systematically destroy the remaining horcruxes.
The worst part about pain is that it changes everything. The best thing about pain is it changes everything about you. Pain sucks. And it is so hard to cope with. But, being in chronic pain has made me resilient. I look at what I have overcome and how I continue to fight, and I am proud. I am proud of the fortitude I have. I am proud of the empathy it has helped foster within my heart. The conditions I have, have helped to connect me with so many wonderful people. The pain I have experienced has moved me to make meaning out of my suffering and help advocate for better care.
While my experience is not typical and should not be used in place of medical advice, I hope what I have talked about what can help in some way. Know that if you are suffering with pain, you are seen. You are heard and your pain is real, whether you have a diagnosis or not.
You can connect with Amy on Instagram: LilyDayDreams and Facebook: Amy Lynn Di Cristo.
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.