Recovering from Fibromyalgia, Endometriosis, and Fibrotic Alopecia

I went to every kind of doctor I could think of, and some of them I went to more than once: a gastroenterologist, a spinal orthopedist, a hip joint orthopedist, various rheumatologists, a neurologist, different gynecologists, pain doctors. I underwent countless tests, many of them privately, just so they would finally figure out what is wrong with my body. The first diagnosis I received was endometriosis. At first, it was unclear, but a few years later, several lesions were identified and I got the official diagnosis. I underwent surgery in hopes that it would resolve all my problems. Of course, it didn’t. A month after the surgery, after a difficult recovery, all the pain came back. I continued with medical evaluations and eventually received the diagnosis I feared the most: fibromyalgia.

I was so afraid of this diagnosis because I understood that from here, there is nowhere else to go in medical terms. There are illnesses where the moment a diagnosis is reached, the patient is sent to a specialist or clinic and there’s a designated protocol of treatments. With fibromyalgia, there is a sense that the whole medical system gives up on you, for the simple reason that they have no solution. The rheumatologist said that from her perspective, she had completed my case. She prescribed amitriptyline and wished me luck. I went to a private specialist and got the same diagnosis: fibromyalgia.

At the same time, I received treatment from an endometriosis pain clinic.I started a journey of trying various medications, which caused side effects that were no better than the pain and other physical symptoms. At one point, I was approved for medical cannabis, and the oil helped a lot with my sleep, but not with my pain.I also tried every alternative treatment I could think of, including psychotherapy. No treatment provided the significant effect I was looking for.

At one point, I reduced my hours at work to half-time, and after a few months, I stopped working altogether. I felt like a complete failure. When the endometriosis pains become unbearable, I was advised to undergo another surgery. I was suffering so much and I again pinned all my hopes on this surgery.
When I consulted with an orthopedist who had been seeing me, he was adamantly opposed to the operation; he believed it would worsen my pain and suggested I seek another opinion.

I did, and Dr. Uri Dior recommended declining the surgery and treating the general pain syndrome. He said, “When the whole forest is burning, it won’t help to put out a single tree.” He referred me to Dr. Efrat Suraki.Dr. Suraki sat with me for a long time and listened patiently to my whole medical history. She explained to me at length about neuroplastic pain, completely real physical pain that is not caused by a structural problem in the body. Pain that is created by the brain (neural pathways in the brain and central nervous system that get stuck) and it’s possible to train the brain out of it. She said something that really encouraged me: “A woman your age shouldn’t be living on pills, there is another way.”

Efrat explained to me that I needed treatment that is largely psychological focused on chronic pain (there are specific therapists who specialize in this). Additionally, she recommended that I try nutritional counseling, relaxation techniques, exercise, and the Curable app. I emerged from her office with mixed feelings, hope blended with many fears and exhaustion. On the one hand, this was exactly what I wanted: hope that I could heal without medications. On the other hand, it was an unknown and unfamiliar journey ahead that didn’t sound easy, and in some ways I still had this expectation that there would be a shortcut I didn’t know about — a surgery or medication (spoiler: there is none).

My husband Tomer was present at the appointment and when we walked out, he said to me, “You are going to do exactly what she recommended.” And that’s what I’ve been doing since I met Efrat. She is the most special person I’ve had the privilege of meeting. Efrat recommended a therapist named Lihi Lisser. I have received psychotherapy at various points in my life, but therapy with Lihi was different than anything I’ve ever experienced.

Lihi gave me tools to work with and homework to do, and we slowly opened up the wounds and the traumas and events that I didn’t even realize were traumatic for me. We broke down the doubts I had about the process, and she taught me self-compassion, and how to recognize and hold space for various emotions, how to send messages of safety to my brain. Alongside the process with Lihi, I asked Dr. Suraki if I had any limitations in terms of what physical activities I could engage in, and she said as long as I took it slow, I could do anything.

I started running, and within 3 months I ran 5 kilometers in the Tel Aviv Marathon. After 6 months, I ran 8 kilometers in another race. During my sessions with Lihi, we started to process and break down various personality traits that contribute to the pain cycle, defense mechanisms I’ve developed over the years: a tendency to please, perfectionism, self-criticism, taking responsibility for others’ feelings, an inability to set boundaries. How were they expressed in my life? Why did I develop them in the first place? In what ways do they serve me? In what ways do they control me?I had to learn to listen to myself. To ask myself questions I had never asked myself before: “What do I need now? What will help me?”

Over time, the therapy moved to deeper, more unpleasant places, places that required complete honesty and openness, not just towards Lihi but also towards myself. How did I feel navigating this world as a child? How much was I really motivated by my own free will, and how much by a desire to be loved, or the worry about what others would think of me? Is there anyone else in the world I rely upon other than myself? How do I cope when someone hurts me? Or when I am anxious? Do I give it space? Do I choose how to respond, or do I respond automatically? Do I love myself? Do I know what compassion is? What kind of a relationship am I building with my children?

I learned to alter my inner conversation and make it less critical and more compassionate. I learned what self-compassion is, and how it’s an important tool that I never used or knew about. It opened doors for me, options in situations where I saw no way to respond other than reactions born from my self-criticism and self-judgment.

In therapy, I learned things about myself, and I’m still learning. I’m learning how to acquire new skills, like a baby learning to walk — to understand what I want, to say it aloud, to stand up for myself, to set boundaries when necessary, to recognize the progress I’ve made, to love myself, to build a healthy relationship with my surroundings, to ask questions out of curiosity and not judgment or fear, to hold space for the emotions that arise in me.

‍My automatic patterns sometimes come back, but they control me much less than they used to.Slowly, carefully, I am learning to feel more excited and less afraid of the new path I’m paving for myself. To anyone who is somewhere along this journey, or is wondering whether to start it, I must confess I completely surrendered to it from the moment I met Dr. Suraki. She said exactly what I wanted a medical authority to tell me, that there’s another way, a better way.
One of the biggest challenges of suffering from chronic pain, in my opinion, is that there is no medical authority to turn to. It’s very hard to find a doctor who will guide you through the whole process in a way that helps you heal. I had doubts and fears and that’s completely natural, but in my gut, I felt I was on the right path.

‍It takes time, and it’s not easy. Find support for the process — people who can speak the language you’re seeking, communities that encourage healing. Read recovery stories, speak to people who have been through it and are going through it, find your inner voice that knows what’s best for you.

I’d love for you to join my Facebook group where I share my recovery journey
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