Posts Tagged: surgery: one year later

My Endometriosis Journey & Life One Year After Surgery

August 12, 2017 Katie A Uncategorized 0 Comments

Disclaimer: There is a lot of period talk in this.. a lot of honest period talk. Yes, that includes sometimes graphic talk about how sick I’ve been while battling this incurable disease.

This is a post that has been a long time in the making. It’s no surprise tat endometriosis plays a huge role in my life and always has. When Angela Lanter shared a post about her journey with endometriosis (you can read her post here), I knew it was time for me to do the same.

I started my period in the spring of my 6th grade year. I knew from the moment it had started (the office was closed because it was after school and I was in an after school program at the time, so I had to improvise in the bathroom while crying about my period starting) that something wasn’t right.

I felt sick, felt like throwing up from the pain and I was so nauseous. I remember sitting in the cafeteria at a table with my head down because I was so miserable. At the same time, I was worried I would bleed through my makeshift pad. Program coordinators kept asking if I was okay and I lied through my teeth that I was.

I wasn’t.

When my mom showed up to take me home, I burst into tears when I saw her and told her what was going on. She was thrilled that I had started my period, brought me home, called everyone (that was SO embarrassing) in the family to tell them and gave me some pads she had saved for me.

The next few days were miserable. I was passing large clots, bleeding heavily, feeling sick because of the pain. I missed school because I was so sick and honestly, I was a bit scared to go back to school because I knew the “friend” who had gone with me to the bathroom had told everyone in our class that I had started my period.

It continued every month. Sometimes twice a month.

And it didn’t get better. I’d wake up more often than not with blood everywhere in my bed, all over my underwear at home. It seemed like every time I went to the beach, my period would start and I’d have to sit on my towel all the way home.

The pain got worse.

The bleeding got heavier.

Everyone brushed me off and told me I just had bad periods and it was just “bad cramps” and they’ll get better with time. Yeah… that never happened. Every month I was sick, missing a week or more of school, using two pads at once and a super tampon. I wore boxers over my underwear just because I was bleeding so heavily.

I was sent to doctor after doctor, put on the pill in middle school. I was told that OTC pain meds would make everything better (that was a lie.. they hadn’t helped before and they weren’t gonna help after seeing a doctor). They brushed me off time and time again.

They tried to do my first pelvic exam but the amount of pain I was in and all the crying made them stop. I was a kid, I wasn’t ready for that shit and certainly didn’t want it.

Over the years I was put on pill after pill after pill. I tried the shot, the ring, the patch. More and more pills and everything you could think of from those heat patches you can stick on your underwear to hot baths and tea that was supposed to help your cycle.

When I finally saw an OBGYN, I felt listened to. While she couldn’t give me a definitive diagnosis without surgery – she was the first one to listen to me about my symptoms, what I’d read online about severe cramps, bleeding all of my other symptoms.

Do you ever have that moment where you look something up and it completely matches everything you’re experiencing? That was the moment for me when I first found out about endometriosis. I sat at the counter staring at the screen in shock because it made sense.

It took a couple years before I decided to move forward with the surgery and before that, I had gone through six months of a drug called lupron (I’ll never take it again) to help “minimize” the disease by essentially putting me into early menopause.

I’m sure you can imagine how miserable that was for a young woman.

When the day came to have surgery, I was nervous as fuck but I knew I was in good hands with my OBGYN. She had listened to me all along, helped me along the way to try and find other solutions to help my symptoms. In the end, we both decided surgery was the best option.

After the surgery I woke up and she told me that while they had found endo, it wasn’t much. I remember feeling crushed. It was my biggest fear – that they wouldn’t find much or anything at all and no reason for how miserable I was.

I was heartbroken.

I later learned that what little endo they found could be because of the lupron.

I had relief for about nine months to a year before the symptoms came back full force.

Unfortunately… I had lost my insurance five months after my surgery when I aged out of my parents policy. That left me stuck and miserable for months before I realized I could go to Planned Parenthood and another local women’s clinic.

It was the same story, same routine… pills, pills, pills and bad periods. They couldn’t do anything for me other than that – they’re limited in that sort of way. I was (and still am) thankful for what they were able to do for me. I was thankful for any relief from my symptoms as I could get at that point.

Ten years later…

I was completely miserable. It hadn’t ever been this bad. Never. I thought it had been bad before surgery and in the years after, but this was the worst of it. I never thought I’d be that sick, that miserable, in that much pain.

I spent days and nights in the ER because of the bleeding and pain. I missed days and days of work and school. I was literally bed bound several days out of the month.

I couldn’t eat or sleep because I was so miserable. Even something as simple as getting dressed was nearly impossible on some days. It was that bad. And without any insurance, I was stuck.

ACA passed and I was able to get medi-cal which has saved my life in more ways than one. It also led me to a doctor that once again brushed me off and refused to do anything. It led me to a woman’s health practice that ultimately changed my life for the better.

It took a few visit (I saw an incredible nurse practitioner who told me I had no quality of life with how far the disease had progressed and how sick I was)  and guess what, another doctor who didn’t believe me and even went as far as telling me the following:

  • She wouldn’t do anything because I was overweight (I wasn’t).
  • I was diabetic so she wouldn’t do anything in terms of surgery.
  • That a double dose of Aleve would fix it all.
  • She would put me back on the pill (Again. I swear I’d tried almost every pill out there at that point).
  • And lastly, she ultimately refused to treat me.

Needless to say, I never saw her again and when it came time for a follow up, I asked for a new doctor. And what happened next changed my entire life for the better.

On my very first visit with her, she said I needed surgery. And I needed it as soon as possible. It felt surreal, you know? I’d been looking for help for so long, someone who took me seriously… and here she was, right in front of me and confirming what I knew I needed.

We started the process after she had given me some options (a hysterectomy or to go in via laparoscopy to clear things out) and sent my file to insurance with all my info, visits with them, ER visit files, etc and left my file with the surgery coordinator.

I remember walking out of that appointment in tears as I told my girlfriend about the appointment, shaking and feel like this wasn’t really happening. I had waited ten years for this.. and it was finally here.

On August 12, 2016 I went in for surgery at a local hospital in the area. Dr. H was going to do excision – a surgery that means she would go in and cut out the disease rather than burn it off, giving me longer relief without the lingering disease.

Even better? That doctor who blatantly refused to treat me was the assisting surgeon that day. She got a first had look at how advanced the disease was and how sick I was.

There was a chance that it would lead to more depending on how far advanced my disease was, but I walked into the operation knowing that and I was okay with that because I needed to have relief and a quality of life again.

I woke up in recovery a few hours later with some complications. My heart rate was sky high, I was put on oxygen because I kept wheezing, my blood sugar was high and they couldn’t get it down.

On top of that, I started to pass out when the nurses took me to the bathroom to make sure I could pee on my own post op and I started to throw up right before that.

In the end, the decision was made to keep me overnight because I was so sick.

Not only that, but the choice was made to open me up all the way because of how advanced and serious the disease was. I had organs stuck together because of adhesion’s. I have endometriosis on my bowels. It was everywhere.

It confirmed everything I knew about my disease and how it had progressed over the years. It confirmed why I was having day to day pain that left me doubled over in pain. It confirmed the heavy bleeding. It confirmed everything.

Recovery was not easy. At all.

I bled very heavily for ten days (so heavy I was using the super heavy, overnight pads all day and night and went through three packs of them, bled through my panties and… yeah, it was bad).

I had a minor infection in one of the smaller incisions.

It was hard as hell to move around, and getting out of bed was nearly impossible early on. I needed help getting dressed or getting my underwear back on after using the bathroom.

I had to take zofran, a muscle relaxer and heavy duty pain meds just to make it through the early days of my recovery. I used a walker just to get around the house. Getting comfortable was ugly and left me in tears.

The worst part of recovery was the depression that sank in. I knew it was a possibility because my hormones had just been fucked with and I was unhappy with how my body looked and felt post op.

I cried over everything. Hell, I cried over the look of food on my plate at meals.

It was bad… and it lasted for what felt like years. Every time I felt like I was coming out of it, it would sink in again and made me feel even more miserable. It was really hard, really ugly and really challenging.

I felt like I was never ever going to get better.

A year later… my entire life is changed.

I’ve lost over 30lbs because I am healthier. I am able to work and go to school without missing any work because of the disease. I have energy. I have no pain from endometriosis (and what pain I do have comes from my caffeine take – it’s always been a trigger). Every now and then I’ll have a bad period, but it’s nothing like it was for so long.

My entire life is different.

I have my life back. I’m happier, I’m healthier.

It’s been a long, long and hard journey to get to where I am now and while I know another surgery might be needed in the future, I am happy where I’m at now. I’m pain free. I have a quality of life.

This never seemed possible before, it really didn’t. I went for years without being taken seriously, with my concerns and symptoms brushed off. I saw medical professionals who brushed me off, refused to treat me at all but through another pill at me (hello, they never worked!) and who didn’t believe me at all.

Yeah, it was a hard road and recovery was even harder – but a year later, I can look back at where I was and where I’m at now. I learned so much about how to advocated and fight for my health and the treatment I deserved. There were so  many days where I was so close to giving up.

But all of this was worth it because of where I’m at now. I fought hard for so long and it took everything in me to keep fighting when I was at my worst, but if I had given up, I wouldn’t be where I am today.