chronic pain, Mental health

Ugly Truth 62: Proper Diagnosis is a Long Hard Road

“Calling it lunacy makes it easier to explain away the things we don’t understand.”

-Megan Chance, The Spiritualist

Dear Readers,

Welcome back to Deskraven, your mental health forum. If you’re looking for a vehicle to elevate your voice, please email me at Contact@Deskraven.com!

I don’t know when this blog shifted from topics of mental illness to chronic pain, but I’ve been going through my diagnosis process for the better part of five years. The truth is chronic pain and physical illness can have a profound impact on your mental health.

To recap, in 2017 I became unable to work for four months and applied for disability. I was denied, and had no choice but to reduce my level of functionality from very active roles to a desk job. At that time we thought my pain was related to a car accident that took place in 2015. Last year my leg pain worsened and my ankles swelled up. I was hospitalized for two days where we ruled out neurological conditions and autoimmune disorders.

After seeing a chiropractor and receiving a lumbar region MRI it was discovered that I have a 2mm L5/S1 disc herniation, mild spinal stenosis, and early signs of arthritis. Shortly after I was referred for epidural spinal injections. When I met with my pain management doctor, he started me on Gabapentin to assist with nerve pain and scheduled a nerve conduction study also known as an EMG (see previous post). This test came back unremarkable.

At my follow up appointment this week my pain management doctor pointed out that none of my test results so far explain my pain levels. With that said, he referred me to an OBGYN for a pelvic exam to asses for endometriosis.

Endometriosis is a condition where endometrial tissue grows on the outside of the uterus and nearby organ systems. Every month, the tissue swells and sheds on the inside of the uterus leaving the body in what we know to be the female menstrual cycle. With endometriosis, the tissue behaves the same way, swelling and shedding, although because it is outside the uterus it has no where to go resulting in internal bleeding, scar tissue, and immeasurable pain said to be worse than child birth. This condition creates lasting damage and health concerns as the body attempts to cope with the strain of chronic pain, incorrect autoimmune responses, nerve damage, hormonal imbalances, infertility, and digestive troubles. Aside from severe chronic pain, women often report fatigue, headaches, pain during sex, and mood swings that significantly interfere with their ability to function, participate in social activity, or maintain a quality of life. No two cases are exactly the same, and women’s health continues to be a pressing stigmatized issue.

There are four stages of endometriosis depending on the severity and depth of tissue damage. Some women may be in stage one and experience debilitating pain. Others may be in stage four and have no symptoms at all. Surgery is almost always required and may result in anything ranging from laparoscopic procedures to a full hysterectomy. Endometriosis never completely goes away, and must be monitored through out a woman’s life to assess the need for additional surgery. Treatment options also include pain management, pelvic floor physical therapy, and hormone therapy.

I meet my OBGYN on the 31st. My pain management doctor added Cymbalta to my Gabapentin in the mean time. I follow up with him in two months. I have mixed feelings, but I’ll try anything.

I’m in pain everyday. It is tearfully worse around my unmanageable monthly cycles and I do have a history of cesarean surgery. My pain is localized in my lower back, hips, pelvis and shoots down into my legs with what feels like warm stabbing nerve compression and muscle spasms. I feel tingling on the top of my feet. The right side of my body hurts more than the left which consistently throws off my balance. I have trouble walking, standing, driving, sleeping and can not tolerate exercise at this point. I also have a history of migraine, vertigo, mood instability, and my mobility has dramatically decreased.

It stands to reason that I would assume this was a spinal injury, but I’ve been taken down another road entirely. I experienced improper diagnosis and treatment as a teen sequestered in the psychiatric wing of a local hospital as well. It wasn’t until my mid-twenties that I was correctly diagnosed with the mental health conditions I manage now. I am now 31 and there’s a real possibility that I have been experiencing endometriosis for the past ten years masquerading as something else.

The truth is you can think you know what’s wrong with you and it can be something you never suspected – or – more than one thing. I have had to contact my physicians to confirm prescriptions have been ordered and amend my medical records. I have had to do extensive research of my own, and seek second and third opinions. The truth is we expect doctors to know it all, but they don’t. The truth is doctors make mistakes. It’s so important to advocate for yourself in the medical setting and work as a team. Working with mental health conditions and psychiatrists is no different. I’ve been doing well for a long period of time, but I’m considering returning to therapy.

In some cases medical trauma can meet acute clinical criteria for PTSD. If you’ve read this blog for any period of time, you know this has been a hurdle of mine. The truth is trauma and grief are not linear. We can not always anticipate recovery or relapse, which is why strategic coping skills are so important to develop if you have any intention of coping well. No amount of meditation or eastern scrap of religion could have prepared me for this, but it does help.

Discuss: Have you ever been misdiagnosed or the subject of a medical mystery? Share your story in the comments below!

**If you’re a mental health survivor or mental health provider and want to tell your story – please email me at contact@deskraven.com!**

For more excellent insight and entertainment through a collaborative approach to all things mental health, including a guest post from yours truly, visit the Blunt Therapy Blog by Randy Withers, LPC! For additional perspectives on suicide prevention from master level mental health providers visit, 20 Professional Therapists Share Their Thoughts on Suicide!

In collaboration with Luis Posso, an Outreach Specialist from DrugRehab.com, Deskraven is now offering guides on depression and suicide prevention to its readers. For more information on understanding the perils of addiction visit, Substance Abuse and Suicide: A Guide to Understanding the Connection and Reducing Risk! In addition, for a comprehensive depression resource guide from their sister project at Columbus Recovery Center visit, Dealing with Depression!

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