Welcome back to Writing Endo. This blog is meant to be a place where I can sort my feelings about this diagnosis, but also, I’m hoping it can be a place of education and advocacy.
A gentle reminder that I am not a doctor and if you are experiencing symptoms that are concerning, you should seek a medical professional’s opinion.
When my pain first started, exercise was the absolutely last thing on my mind. How the heck was I supposed to exercise when moving hurt so much?
Often times, chronic pain that doesn’t have an obvious explanation is blamed on weight and mental health. So, many doctors recommended working out without giving me the facts– just making me feel like being ‘fat’ was my issue, when I knew it wasn’t.
Fast forward to now, after attending my pelvic floor physical therapy appointments, I now I understand why exercise is important. None of my current doctors are recommending body building or marathon running, of course. But they do recommend moving.
So, I joined the gym. Some days, I do more than others. Some days, I just do my PT exercises there. Sometimes, I lift light weights. Sometimes, I do yoga. On nice days, I go for walks.
Not only have I lost 13lbs, but this is helping my mental health, as well. And it also helps the pain.
Now, I’m still having daily pain. Exercise and weight loss are not cures for chronic illness, despite what some people like to say. However, if your doctor thinks it’s a good idea and you don’t over do it, the benefits are nice. Typically, the exercise I do doesn’t flare my symptoms– it often helps calm a flare.
Knowing my body, knowing how much I can do, and not overdoing it are all ways I make this work for me.
Please consult your doctor before beginning any exercise routine. This works for me, but I can’t speak for everyone.
Welcome back to Writing Endo. This blog is meant to be a place where I can sort my feelings about this diagnosis, but also, I’m hoping it can be a place of education and advocacy.
A gentle reminder that I am not a doctor and if you are experiencing symptoms that are concerning, you should seek a medical professional’s opinion.
Quite possibly one of the most harmful things I’ve heard is, “you don’t look sick.”
I know.
I don’t look sick because, not only is my illness invisible, but I also hide it well.
I use a lot of my spoons (or energy, if you’re not aware of the spoon theory), to put on a brave face. I shower, do my hair, sometimes put makeup on. I try to work as much as my body will let me. I clean my house. I take care of my cat.
But, the reality is, I am in pain 24 hours a day, 7 days a week. I function at pain levels that would bring most people to their knees. And I can say that confidently because it used to bring me to mine…and sometimes still does.
When you live with debilitating pain and other symptoms, you begin to get used to it. It doesn’t make living with it any easier, but you start to learn that you can’t lay in bed all day, crying. I had to find a way to live. Because even though I am sick, I want to live a fulfilling life.
So, yes… I don’t look sick. But I am. I am even when I reply “good,” to someone when they ask “how are you?” I am, even when I work, cook, clean, exercise, etc.
Now, most people who say “you don’t look sick” are likely meaning it as a compliment. But I’ve spoken on toxic positivity here on Writing Endo, and it really isn’t a compliment. The true issue though, is that often, it’s used to invalidate. Looking sick is used like it’s somehow a way to measure how someone feels, and it unfortunately is yet another reason why diagnosis and treatment is delayed in the medical field.
What to say instead.
I’d like to use this blog to educate, so please don’t take offense if you’ve said this to someone in a complimentary way. Use this opportunity to learn and grow. Here are some things you can say that are more validating:
I’m here for you. What can I help with? How are you feeling? I can’t imagine how you feel.
The best thing you can do is help your chronically ill friend or family member in whatever way they need. We are all different. I need space when I’m having flareups. Other people may need someone to sit with them or check in on them.
But even if you can’t be there physically for someone, saying “I believe you,” and truly meaning it is the most validating response.
Welcome back to Writing Endo. This blog is meant to be a place where I can sort my feelings about this diagnosis, but also, I’m hoping it can be a place of education and advocacy.
A gentle reminder that I am not a doctor and if you are experiencing symptoms that are concerning, you should seek a medical professional’s opinion.
One of the hardest things about this illness is missing out on events/activities.
People invite me to do things and I can’t always go.
It hurts them. I know it does.
I feel incredibly guilty.
And that guilt eats me alive inside.
I know I have to prioritize my body. I know I have to say “no” when I need to…
…but that doesn’t ease the heartache when I get the, “oh…okay, I hope you feel better,” response because I have to turn down the invite.
People love me and understand, but it doesn’t make them less disappointed.
I hope, someday, it isn’t like this. I hope, someday, I can make plans ahead of time without being concerned I woke make it.
Until then, I hope, if you’re in my life, you know I love you even if I can’t be there all the time.
Welcome back to Writing Endo. This blog is meant to be a place where I can sort my feelings about this diagnosis, but also, I’m hoping it can be a place of education and advocacy. 💛
A gentle reminder that I am not a doctor and if you are experiencing symptoms that are concerning, you should seek a medical professional’s opinion.
When I first started down this endo journey six years ago, I didn’t talk about it as much as I do now. I was afraid people would think I was attention seeking, especially considering I didn’t even have a diagnosis until August of 2021.
Now, though? I talk about it.
A lot.
I post on Facebook, I have this blog, I have an Instagram dedicated to this blog, and I cross post to my Twitter account. I don’t just write this blog, I talk about my daily struggles on most of my social media.
Why?
Well, it started as a coping mechanism. This blog was meant to help me get my feelings out somewhere and there were days I just needed to vent. But it’s become much more than that.
Endometriosis is misdiagnosed, misunderstood, not taken seriously…
Often, people wait years to get diagnosed because the only certain way to diagnose it is through laparoscopic surgery. And unfortunately, regardless of how “well known” this disease is, many OBGYNs just don’t understand or know enough to do more for people.
See, people who get periods are told from a very early age that periods will cause cramping and pain is normal. What they aren’t told, is pain that causes you to call off work, miss school, stay in bed, etc., is far from normal.
Not to mention the other symptoms. The bowl and bladder issues. The nausea and vomiting. The temperature sensitivities. The food sensitivities. The pain before, during, and after the period. Painful intercourse. And so much more.
It’s not normal.
For 6 years, I went to many, many doctors. So many, I’ve lost count. I even flew across the country. The doctors would run their tests, find nothing, and say, “sorry, can’t help.” Eventually, I began to hear, “have you considered seeing a psychiatrist?“
Now that I have a diagnosis, I feel it’s important to share my story. I was silenced and dismissed…
…and now I can’t be.
People don’t know enough about invisible, chronic illnesses. If there is a possibility this blog can help one person feel less alone or help one person understand their loved one more, then I feel like I need to talk about it.
Welcome back to Writing Endo. This blog is meant to be a place where I can sort my feelings about this diagnosis, but also, I’m hoping it can be a place of education and advocacy. 💛
A gentle reminder that I am not a doctor and if you are experiencing symptoms that are concerning, you should seek a medical professional’s opinion.
Being positive is not inherently negative. Positive self-talk helps me control my anxiety sometimes. However, there’s a difference between healthy positivity and toxic positivity. So, if you’ve said things like this, please don’t take this post as an attack. I’ve been guilty myself. Spreading awareness and learning ways to support is important!
What is toxic positivity?
So, what is this toxic positivity, anyway? It dismisses negative emotions and encourages being positive all the time. It comes from feeling uncomfortable with negative emotions. While it’s meant to be supportive, it often invalidates normal human emotions.
In a distressing situation, it is normal to feel sadness, anger, depression, loss, hopelessness, etc. While these emotions are not healthy to live in, it is very normal to feel these emotions throughout our lives.
Examples of toxic positivity:
“Good vibes only.”
“Other people have it worse.”
“Just be positive/don’t think about it.”
“Everything happens for a reason.“
There are more, but these are good examples. From the outside, these seem perfectly acceptable, right? But when you’re mentally or physically (or both) exhausted, sometimes you just want empathy. Being told ‘other people have it worse’ or ‘just be positive’ is invalidating. It makes someone feel like they shouldn’t be struggling, even when their struggle is valid.
Being positive all the time is impossible and if ‘thinking positive’ cured all ailments, no one would be sick.
Validating Statements:
“I’m listening.”
“I understand this is hard. What can I do for you?”
“It’s okay to not be okay.”
“It’s okay to rest.”
See the difference? These statements validate the suffering rather than offering ‘positive vibes only.’ Personally, when I’m in an endo flare or having a hard time with my mental health, I don’t want advice. I just want someone to listen. I just want to grieve the life I thought I would have so I can get back to accepting this life I have.
Practicing this is hard work. Social media memes are full of toxic positivity disguised as helpful quotes. I challenge you to really read these memes before you share them, and think, ‘is this validating or just avoiding negative emotions?’ It isn’t easy, but it’s worth it!
Welcome back to Writing Endo. This blog is meant to be a place where I can sort my feelings about this diagnosis, but also, I’m hoping it can be a place of education and advocacy. 💛
A gentle reminder that I am not a doctor and if you are experiencing symptoms that are concerning, you should seek a medical professional’s opinion.
I’m finally back and plan to continue to share my journey. Sometimes life gets overwhelming, and this blog just needed to be set aside while I figured that out. So, I thought mental health would be a good subject to discuss on my return.
I’ve been diagnosed with four mental health disorders. Generalized Anxiety, Panic Disorder, Depression, and Agoraphobia. I have some suspicion about a couple of others, but these are the ones I know for sure, so I will cover these. I thought I would go over what each is and how I deal with them.
Generalized Anxiety
Severe, ongoing anxiety that interferes with daily activities.
I experience anxiety daily. It makes phone calls, social activities, etc difficult. It’s easy for me to talk myself out of things because of anxiety.
Honestly, self talk is huge. Instead of saying, “I can’t do this,” I say, “I can do this.” It’s amazing what power we have over ourselves.
I also try not to give in to the anxiety. It’s harder than it sounds and I’m not going to say “just push through it,” because it’s not that easy. But, typically when something causes me anxiety, if I can manage to do that thing anyway, the anxiety goes away. So, I’ve trained myself to try. I tell myself, if I’m still feeling anxious when I get to the place or I get on the phone or whatever, I’ll stop or go home. Usually, that’s enough to get me to try.
This is linked with panic attacks but they are separate. You can have generalized anxiety without panic attacks.
Panic Disorder
Panic Disorder is an anxiety disorder characterized by unexpected and repeated episodes of intense fear accompanied by physical symptoms that may include chest pain, heart palpitations, shortness of breath, dizziness, or abdominal distress.
Panic attacks are scary. Truly, when I have a full blown panic attack, I feel like I’m dying. I’ve thought I was having a heart attack while I was having a panic attack. The worst part about a panic attack is that if I can’t get myself to calm down before it fully kicks in, there’s nothing I can do except ride it out, which usually looks like me curled on the floor in a ball, crying and struggling to take deep breath.
The good news is, with practice, I’ve been able to stop about 70% of the panic attacks prior to them getting to that point of no return. Deep breathing, meditation, yoga, and understanding what triggers them in the first place, is how I manage them.
Depression
A mental health disorder characterized by persistently depressed mood or loss of interest in activities, causing significant impairment in daily life.
Depression is something I’m still not very good at keeping away and dealing with when it’s here. It hits me at night more often, when I’m not busy. It makes me feel like I don’t care and I don’t want to do the work to feel better. Because of those feelings, it is very difficult to get myself out of a depression episode.
Keeping busy is one of the main ways I keep episodes from coming in the first place. At night, I read. That helps keep my mind from wandering to dark places, and gets me tired enough to fall asleep before I get depressed.
Agoraphobia
Fear of places and situations that might cause panic, helplessness, or embarrassment. Agoraphobia is an anxiety disorder that often develops after one or more panic attacks.
Agoraphobia is difficult because it plays off my pain. Often, I have to decide whether my pain is high because I’m flaring or my pain is high because the agoraphobia is kicking in and wants me to stay home. I think this stems from being afraid of having a flare up in public or at a social gathering. My flare ups can be incredibly excruciating and the idea of bawling my eyes out at a social setting is terrifying to me.
The best way I’ve found to combat this is to never stay in the house all day. I have to at least walk out on to my porch, every single day. I don’t necessarily have to go anywhere, especially if I’m flaring, but I have to walk out of the door. Otherwise, I get stick. And being stuck tends to lead to horrible depression episodes, and it’s a situation I don’t want to be in. When I’m not flaring, and the weather is nice enough, I go for walks or I go to the library.
I hope this gave some insight on my mental health. These mostly resulted from years of not knowing why I felt like I did, but I’ve had anxiety my entire life.
Hello! Since this is my first post on my new blog, I figured I would start with a little backstory. This is a very condensed version of events, and I will go into more details in future blog posts, but for now, I just wanted to summarize how I finally got my diagnosis.
I’d struggled with my menstrual cycle from the beginning. It would knock me down for a couple of days, but the OBGYN I was seeing at the time kept putting me on different birth control and telling me it was normal to have a little pain during your period. I accepted this as a fact. She was the doctor, so she had to know more about this than me and all of my friends said they had cramps, too. I figured my pain tolerance was just lower than everyone else’s.
Fast forward to the end of 2017. I woke up one morning with incredible pain in my pelvic area. It felt like someone was stabbing me with a knife, over and over. The OBGYN I was seeing at the time reluctantly ran an ultrasound (while also giving me attitude for making an emergency appointment), found nothing, and said, “go home and take an aspirin.”
I was in the hospital the next day.
And so began five years of hell. I lost my job. I moved home. I eventually won my disability case.
I have seen more doctors in five years than most will see in their lifetime. I flew across the country; I drove 6 hours; I tried every homeopathic remedy I could find… I did everything. Every time I saw a new doctor, they ran their tests and said I was healthy. I even had a doctor tell me I wasn’t “actually in pain.”
At some point, I think I started to give up. I was told the pain was in my head, so I did the only logical thing I could think to do. Work on my mental health. I was diagnosed with a psychosomatic pain disorder—which is a pain that is caused by underlying psychological issues, along with panic disorder, anxiety, major depression, and agoraphobia.
I stayed this course for over a year, but my pain was getting worse. I’d all but given up on continuing to look for physical answers, but my mental health team told me, if this really was psychosomatic, the strides I was making in my mental health would have resulted in a lessening of pain.
So, in a last ditch effort to find answers, I called one last OBGYN. Long story short, this doctor didn’t help me. At least, not directly. He mentioned something called the “Pudendal Nerve”—which, according to him, could be irritated and cause the leg pain I’d been experiencing. However, he did nothing for me, so I went home and once again, did the only logical thing I could think of: I googled Pudendal Nerve doctors in my area.
I met the most incredible team of pelvic health doctors and nurses. They got me in as soon as they were able (I waited about 4 months for my appointment), and made me feel like I was valid. After doing their own ultrasound, they got me on the schedule for a laparoscopic surgery, to look for Endometriosis.
This blog is getting long, but I’d like to mention that I saw a total of five OBGYNs over the course of five years. I asked each one about Endometriosis, and each one said there was no way I could have it.
On August 26th, I had my laparoscopic surgery, and they did, in fact, find severe endometriosis.
And that’s where my new journey begins, and why I’ve started this blog. I have a lot of emotions about my diagnosis, and I will cover all of that in future blogs. I need a place to put my thoughts, and I hope that maybe this will reach someone who is suffering, and possibly help them at least know they aren’t alone.
Thank you so much for reading this. I am looking forward to this new blog and sharing what comes next in my health journey.
Writing Endo 