I know what it’s like to have invisible pain. The kind that torments you but no one else can see. I felt alone. I felt hopeless. I felt as if I was thrown off to the side. I felt completely and utterly unimportant. If you feel this way, know that you are not alone. There is hope and you are important.
I was desperate to have someone acknowledge the pain I was enduring. I am going to take this opportunity to acknowledge you and the fact that you are in pain. I hear you, I see you, and I feel your pain.
Jump To Section:
- How My Invisible Pain Began >>>>
- The Confusion Of Positive And Negative UTI Tests >>>>
- Invisible Pain Leaves You Feeling Hopeless >>>>
- The Voice of Hope >>>>
- Learning To Be My Own Savior >>>>
- Putting Invisible Pain Behind Me >>>>
How My Invisible Pain Began
I didn’t think it was a big deal when I got my first UTI. It was more of an inconvenience. If I am to be completely honest with you, it took me a while to get to the doctors because I didn’t really understand that I had one.
This was the first time in my life I was having sex regularly, so I didn’t quite understand what was happening. I also ignored it because I was in school and had finals. My GPA seemed more important to me than my own health.
“I thought I just didn’t have time to take care of myself. Little did I know I didn’t have the time not to take care of my health.”
When I went to the CVS minute clinic, they did a quick dip test and sent me home with antibiotics within 20 minutes. The first day I took the antibiotics I was so sick from them that I had to go to the emergency room late that night. I wanted the ER doctors to change my prescription because my body was not handling them well. I could barely stand. I was so nauseated and dizzy.
No, I’m Not Pregnant. Yes, I Am On My Period.
I waited for hours to be seen because my pain was not an imminent threat to my life. The pain felt pretty imminent to me, but I understand as they do the best they can in evaluating who to see first. When I was finally seen, the medical staff looked at me sideways because they couldn’t understand why I was there.
I told them I needed to switch the antibiotics I was on because my body did not like them and something was wrong. Instead of trying to figure out why I was in so much agony, the nurses and doctor repeatedly accused me of being pregnant. I told them I was on my cycle and that had nothing to do with how I was feeling.
The medical staff kept asking me if I was pregnant as if I didn’t just say I was on my period. They insisted that I take a pregnancy test and when it was negative, they just sent me home with anti-nausea medication. They did not change the antibiotics like I had asked.
I felt absolutely defeated and unheard. I walked away with more pain and frustration than I had entered. That ER visit also cost me more than $1,500 out of pocket, just for them to give me anti-nausea medication that I could have easily gotten over the counter. I felt as if I grossly overpaid them to accuse me of being pregnant. I was sick for days, and taking the rest of those antibiotics had ruined my overall health at the time.
My History Of Antibiotics
I was already wary of antibiotics because I struggled for over 7 years with recurrent vaginal yeast infections and candida overgrowth in my gut. This probably had something to do with a year-long treatment of antibiotics I had to take as a child following a surgery.
When I was younger, I did not know and was never told to take probiotics with antibiotics to lessen the effects on my microbiome. As I got older, I avoided antibiotics when I could, but still took them when necessary. This time, I knew it was necessary but they didn’t get rid of the infection or the pain.
My body was screaming at me. I wasn’t fully listening and I had no idea the UTI journey I was about to embark on.
The Confusion Of Positive And Negative UTI Tests
The first course of antibiotics helped dull the pain for a week or two. When the symptoms became full blown again, I was so confused. I then went to go see my physician assistant for my regular check up and had them perform a standard urine culture. The PA said, “I really don’t think you have a UTI based on the dip test, but we will get it cultured.”
I went home super excited I didn’t have another UTI because I knew that more antibiotics would continue to destroy my health. However, I was confused about why I was still in pain. The next day my PA called and said that the culture came back positive for E. coli. She said I needed more antibiotics, but they were going to give me antibiotics specifically for that bacterium.
I didn’t realize it at the time, but a positive test result somehow validates your pain in the eyes of others. Invisible pain, with conflicting or negative tests, is another thing altogether.
I was reluctant to take another set of antibiotics, but I did to get rid of the pain. The pain seemed to get more intense as the days went by. I handled these antibiotics a little bit better than the first round, but again, it only helped lessen the agony for two weeks. I still had a feeling in my gut that something was off.
The Dark Rabbit Hole Of Invisible Pain
When I started to feel intense pain again, I went back to the doctor’s office. I was told if this test was positive that I would need to take low dose antibiotics each time I had sex.
I was not going to do that regardless of whether it came back positive or not. I knew that long term antibiotics were not a viable choice for my body. The test came back negative. I was again confused because now the pain was becoming more and more severe.
I now realized I had developed an invisible illness and I had no idea how to find respite.
As the symptoms worsened, I started to become agitated and very anxious. I have had panic attacks in my life before, but these became more intense and frequent. As it worsened, I began to feel as though I was always going to be in torment.
I would stop breathing or start breathing rapidly. I felt that death was imminent. I was lucky to have amazing people in my life to hold my hand through it when it got really bad or to hold me when I didn’t feel safe in my own body.
The Depths Of My Pain
No matter the immense love and support I had in my life, it didn’t feel like anyone knew the depths of my invisible pain. I also couldn’t expect anyone to try to comfort me 24/7.
Waking up, multiple times, in the middle of the night was probably the worst part. I would have to pee so often and it felt like I was slicing myself on the inside as I let go of the hot, painful liquid.
When I went back into my bed, I would not be comforted by my soft blankets as I was distracted by the knives continually cutting inside my lower stomach.
“I couldn’t scream in the middle of the night as my family slept, but I was silently screaming inside of my head. I felt as though my whole body was on fire. I begged for mercy. I begged to just sleep because at least then I wouldn’t have to feel the pain anymore.”
Invisible Pain Leaves You Feeling Hopeless
As time went by, I was destroyed. I felt that I no longer wanted to live. I saw my doctor and asked many others for help, to no avail. My invisible pain was now unbearable. For months the problem would lessen for a day or two only to come back worse and worse.
I started to sink deeper and deeper into darkness. I was not sleeping at night because I was bawling my eyes out in pain and kept having to go to the bathroom. I became anxious about going to sleep because I knew that I was going to wake up in agony.
I was reading everything I possibly could about UTI, chronic UTI, IC and just about everything vaginal and urinary tract health related. Nothing was working. I would find something that would lessen the pain for just a day or two. I was desperate to escape the searing pain I was in. Actually, I don’t even think there is a word to describe how desperate I really was.
I was walking around in silent desperation. Praying someone would see the invisible pain I was experiencing and offer to be my morphine or save me from my misery.
“I was in endless pain for about a year with no respite. With no light. I was so confused and lost.”
I would go to the doctors so excited to finally find the answers, but after each appointment I was sprung into deep disappointment, frustration and confusion. As each appointment went by, I sank deeper. I was searching for someone to save me.
The Voice of Hope
Now what changed? What was the moment that changed my story from barely surviving to thriving?
Three prominent events happened to me that helped me start to change my mindset. First, I found Live UTI Free which was a game changer. I felt validated seeing that I was not alone.
I reached out for help and Melissa shared her protocol with me. Seeing her story gave me hope when I had none. I read every possible article on this site for answers. I learned so much valuable information that I then used to piece together what was happening throughout my confusion.
“I also finally saw inspiring women advocating for change about what felt like a grave injustice. I will forever be grateful for finding this site because it gave me my hope back and empowered me to start taking my health into my own hands.”
Another of these events was a conversation with my mother. She told me to stop feeling sorry for myself and do something about it.
I was shocked, and honestly I did not react well to this at first. How dare she say that to me. She had no idea the excruciating pain I was in. Even she couldn’t see my invisible pain.
But then it hit me. This was another reminder to take my health and life back into my own hands. I am going to be honest with you: My entire life was in absolute shambles and it took a while to fully heal. But nothing was going to stop me.
My Final Push To Reclaim My Life
The other big event, or events I should say, is that four of my family members died in this one year. It was an excruciatingly painful period. When my uncle died at only age 32, I knew that I had to reclaim my life.
I felt a duty to live my life to the fullest extent that I could. I had to love my life because it can all end so soon. I promised myself to be grateful for each breath I was gifted. This really turbocharged my healing journey.
Learning To Be My Own Savior
I learned I had to be my own savior. I stopped expecting one pill, one diet, one doctor, one tool to be the end all of my healing journey. I had to heal myself in a very holistic manner. I made a plan by my own design physically, mentally, emotionally and spiritually. For me, each and every part was extremely imperative to my healing journey.
My healing action plan was holistic and comprehensive because my goal was to have deep and lasting healing. It was essential for me to have a specific intention and vision for the healthy woman I wanted to become. Physically, I learned how to heal my body through radically changing my diet. This included everything that I ingested being as clean and nourishing as possible, utilizing detoxes, such as intermittent fasting, and implementing a daily exercise routine.
I was able to heal mentally through a process of changing my mindset, my outside environment and using mindfulness practices. I implemented emotional healing through embracing my emotions, and using them to enrich my life through evolving practices, such as self-love, forgiveness and gratitude.
Many spiritual modalities of healing were added to my action plan, including having faith in myself, my life and my higher power, using bliss states to radically reduce stress and incorporating energy work. I learned the powerful effect of combining all of these techniques, which each alone may not help, but together had a multiplier effect that is divine.
How My Healing Plan Changed My Life
Before my healing action plan, I had multiple types of chronic pain, chronic infection, and chronic anxiety. I had to prove to myself that I could manifest healing no matter what the ailment was. Healing was and is still my number one priority. I am committed to myself. I put myself first.
I felt excitement as I explored these different modalities of healing. It became fun. It became a game. I had to enjoy the journey because, again, my goal was not only to heal but to live my life to the fullest. If I was going to accomplish that, I had to do a deep dive into healing with a lot of love and laughter.
“It was a slow process, and I had to become very patient with my body. With each step forward, I breathed life back into myself. Each step helped me believe in my healing. When I finally slept through the night with 8 hours of deep, restorative sleep, I woke up with immense gratitude. My invisible pain was subsiding.”
Invisible Pain: Taking It One Day At A Time
As the pain began to lessen, I started to forget about it for an hour at first, and then two, and then three and so on. I went through flare ups that became smaller and smaller during my healing process and I would continue to look at the progress I had made. I wouldn’t be upset when I had a flare up. Rather, I saw it as my body healing itself.
Small twinges that still come very rarely are at a 1, maybe 2 of pain when it used to be 9 or 10. I learned to fully trust the process. Healing is not a destination, but a journey just like anything else in life. I appreciate every moment that has become free of pain.
I no longer fall and freeze in fear at the mere tinge of slight pain or discomfort. Instead, I say, “OK body, what do you need right now? I am listening. I am ready to nourish you or rest if needed.”
I don’t like to say that I am healed, cured or anything of the sort. I like to say that I am in remission. Getting better and better everyday. I know when I heard those words from others, I was highly disappointed. But as I have gone through this process, I have learned that remission is a beautiful word.
Healing isn’t black and white. You will go through immense improvement that in itself needs validation. I celebrate every little win when it comes to my health.
The Happy Side Effects Of Taking Control
What has been so incredible about my journey so far is the surprising progress I have made in all areas of my life. I was able to heal what felt like my entire life. I healed myself so deeply that parts of myself that I didn’t even know needed repaired began to revive. By committing to myself, following my intuition and getting into action, I rehabilitated myself.
I have not stopped this worthwhile journey because I already feel amazing. Instead, it pushes me to keep going; to proactively heal before any new imbalance can show up. If something does happen, I will be able to get back in balance quicker as I have protocols in place already.
A happy side effect was that I alleviated many of the food allergies that I had for 15 years. I was ecstatic! When I learned of this new development in my life, I jumped for joy. A whole new world has opened up to me. I recognized that in every area of my life I healed.
Another prominent side effect of this adventure was that I lost 40 pounds. I have healthier relationships with others and have fallen madly in love with myself like I never had before.
Putting Invisible Pain Behind Me
I now have a nightly ritual. I fall to my knees with tears streaming down my face. I look up and say with all my heart, “Thank you God.” I am so grateful to be alive and so grateful for all my blessings and healing that have been bestowed upon me. I bask in gratitude and healing as if the sun comes out and shines in my bedroom nightly, allowing me to breathe in the elixir of life.
Now I can look back at this exploration of invisible pain and healing and be intensely grateful for this experience. Yes, I said it. I am absolutely grateful. Now I know I can deal with anything. I can get through anything. If something happens like this again, I have the tools and the power within myself to not just survive, but thrive.
I started to look back at all the progress I had made. I am thankful for this health crisis because my whole life has healed. It was my wake up call to love me. It was my wake up call to live in every moment, and it was my wake up call to make a commitment to myself.
All my new habits not only help me right now but also my future self. I wouldn’t change a single part of my journey because it awakened me. I transformed invisible pain into peace and passion to fully live every moment of my life, and it is my treasured gift.
My intention for sharing my story is so it may inspire even just one girl or woman to reclaim her power.
Let’s Start The Conversation
I know there is no one-size-fits-all to healing, so I’ve dedicated my life to helping other women with chronic illness. I am now on a mission to empower women with chronic illness to reclaim control of their health and provide the tools, knowledge and support necessary to accomplish holistic healing.
As part of fulfilling this mission, I’ve recently published a book, The Vibrancy Codes. In it, I hope my readers will discover vibrancy in their own health.
I’m also channeling my experiences into my own wellness coaching company, Envealing. Sometimes, a conversation with someone who understands is the best place to start.
I know you may be scared right now and you may not know where to begin. I am here to let you know there is hope, there is a way out of this pain and you can make it out of this agony better than you were before. I believe in you.
Thank you for sharing your story. I also suffer from UTI’s and it’s caused me to question if I’ll ever be able to have a normal sex life and a family. Did you heal the chronic UTI’s just through diet and spirituality? Were there other measures?
It’s nice for women like me to read articles like this because I can relate to all the pain and suffering, however, it’s difficult at the same time because the information on your healing process is so vague. I’m left feeling happy for you, but still very discouraged, like what am I missing?
Hi Jennifer, thanks for sharing your experience. You can get in touch with Cassidy directly via her website that she shared above: http://www.envealing.com/. Melissa