So Confused With My Body
Hello!
I've been going through a lot of health issues over the past 10 years, jumping from diagnosis to diagnosis. It's all making me feel like a hypochondriac and has been a constant struggle and impact on my life. I've always been extremely motivated and hard working, the person who goes the extra mile at work and usually takes a leadership position. But I kept running into the same cycle of my life falling apart every other year. It's cost me jobs, relationships and overall functionality in my life. My main problems have been extreme nausea/dizziness, pain, and sleep episodes. I've been diagnosed with severe/manic depression, POTS, fibromylgia, CFS, and even hypothyroidism in high school though my thyroid levels were just low normal. I've been told to eat several different diets, hydrate more, exercise more, exercise less, sleep less, sleep more and other advice over the years. I get sleep spells that knock me out for 20 plus hours, tunnel vision, abdominal and joint pain, foggy brain, constipation and diarrhea, and a myriad of other issues. Finally, this year, a doctor ordered a sleep study which revealed I'm narcoleptic. This explained half my symptoms but not the pain. My grandma told me recently that she had a hysterectomy at my age from endometriosis and her mother had the same condition. So I've gone to the gynecologist and they did an ultrasound which came back perfectly normal. But I'm still having constant abdominal, pelvic and joint pain. It seems to get worse after my period and after sex. The doctor wants to start treatment for endometriosis as a way of diagnosis but with my past, I'm so tired of taking medication I might not even need. I want to get better but I want to know for sure before starting treatment. Should I push for a laparoscopy? Would love some advice right now, feeling super emotional and slightly crazy.
Hey
, firstly I want to say that I SO hear you! I went through so many diagnoses, and so much unexplained pain, that I get how frustrating it can be when you are on this sort of path. The thing is that, ultrasounds may come back completely clear, and you may still have endometriosis, since adhesions can appear at deeper levels of the body, or hide behind other organs. So the way to properly diagnose it, would be to do a laparoscopy.
When I suspected I had diagnosis, I looked for a specialist, via Nancy's Nook on facebook. This page has lots of information and resources, as well as listing the names of doctors that know about this disease and their locations.
Would it be possible for you to see an endometriosis specialist?
In the meantime, please know you are not crazy. It's OK to feel emotional, tired, angry, frustrated... all of the feels! And we are here to support you through it. You are not alone - Jessie (team member)
You have a lot going on!
First, know that you are NOT crazy! And you are not alone in your experience. I'm glad you finally found someone to take your fatigue issues seriously. You clearly learned how to advocate for yourself in dealing with that, and those skills will help you move forward in figuring out the pain problem.
I think there are several ways you could approach next steps. If you haven't already, you could try telling your current doctor that you'd really like to have a diagnosis if possible, before adding new meds. Have them discuss pros and cons with you. If you are not satisfied with their responses, a visit with a gynecologist who has a lot of experience with endometriosis may be a good idea. Jessie already mentioned Nancy's Nook, or you could call your health insurance company to see if they have a specialist on their list. Here's a link to an article with more ideas about finding a specialist, and the site has several others as well: https://endometriosis.net/living/find-doctor-specialist.
Please take good care of yourself, and keep in touch with us here to let us know how you are faring. Best wishes! -Audrey (endometriosis.net team member)
Wow! That's a lot to go through. I'm glad you've finally gotten a diagnosis of narcolepsy. There's evidence now that narcolepsy is an autoimmune disorder. And while there's not a direct connection with endo, that I know about, people with endo often have co-morbid autoimmune conditions. It's also super common for people who have a chronic condition or sleep troubles to also have mental health conditions, including bipolar, anxiety, or depression. I was diagnosed with depression when I was 17. Generalized anxiety disorder (GAD) came at 23.
Jessie and Dr. Sheridan gave you some good advice already. And I'll add that I definitely think you should push for a proper diagnosis, and the only way to do that is through a laparoscopy. Birth control or hormonal suppression is can't diagnosis endo. Personally, I could not tolerate most kinds of hormonal birth control because of severe mood swings. An endo specialist also told me he would not recommend hormone suppression for me because of my past history of serious depression. My most recent surgeon is Dr. Patrick Yeung, who is the most understanding doc I've ever seen. He's in Seattle and approved on Nancy's Nook and through icarebetter.com -- which is the site the Nancy's Nook website sends you to if you want to search for an endo specialist. I'm keeping my fingers crossed you find someone who's near you and can give you some answers soon. And always know you're not alone! - Keri (endometriosis.net team member)
It is not uncommon for many people with endometriosis to initially be misdiagnosed or dismissed. It can make you feel crazy and alone.
Laparoscopic surgery is the best way to know if you have it or not. As far as the medication thing goes, I understand, I’ve had numerous side effects and allergies to certain treatments over the years but remember laparoscopic surgery doesn’t come without side effects and risks either. You know you and what your willing to live with the best. Medications can be a good option for some but oftentimes with this diagnosis surgery will also be an aspect of the medical management.
