17 Years In: Imprisoned in my own body, a long-awaited journey with Endometriosis

By Stephanie Marie Hodge

My journey with Endometriosis has been a long one. As it has for many women I have talked to online or come across. I began writing this over six years ago, but it is actually a lifetime of work. I am currently thirty-four, and my symptoms began when I was eleven. It took seventeen years to diagnose me, but for the last six of those I kept telling doctors I thought I had Endometriosis. Only to not be heard and to be given pain killers or birth control. It's horrible the trauma physically, mentally and financially I had to endure as it was. There are actually good doctors out there, and even though it took way to long I'm thankful for the ones I ended up with after almost two decades.

• Language: English
• Publisher: BookBaby
• Release date: Jul 22, 2022
• ISBN: 9781667851044

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17 Years In

© 2022 Stephanie Marie Hodge

All rights reserved. This book or any portion there of may not be reproduced or used in any manner whatsoever without the express written permission of the publisher except for the use of brief quotations in a book review.

eBook ISBN: 978-1-66785-104-4

Table of Contents

Prologue

Life with Endometriosis

Recipes

Quotes

About the Author

Prologue

My book was essentially a story in the making for decades of my life, but I only began writing about it about five years ago. It is written with flashbacks and present tense. It is about everything I remember going through; the discovery and journey that brought me to the present.

A much more livable life, that for so long I thought I would never have. Everything I wish I knew and I’m here to share in hopes others do not suffer as much as I have. Although, I have come across women that have gone through worse. I truly hope this gets in the hands of people that need it or even family members that are looking to help their endo warrior. Stay strong and read on.

Life with

Endometriosis

With my twenty eighth birthday looming around the corner; by only a few days. I decided to start telling my story of what I have gone through. Since it seems rare, but I’m sure there must be other women going through similar pain.

I don’t want anyone else to have to look for answers as long as I have. I’m writing this and there is still no cure or answer for my condition. The saying, Only you can help yourself can be quite true. Doctors are supposed to be there to help you, and they do to a certain extent.

You always have to be the one to tell them your symptoms and what you think it might be. Then they go from there, and if you’re lucky you’ll get a concrete answer. After seventeen years, I can’t even believe I still don’t have mine. Why the thought came into my mind to start writing today was because I felt nauseous, numb dull pain in my left ovary, and just defeated.

Amazingly, I can get so down, but I bring myself right back up. It’s because I know I’m going to kick this thing in the ass. Let us go back to the beginning. I’m eleven years old in fifth grade, and I get my period. I even remember we had just learned about what a menstrual cycle was in class. I also recall I was wearing these navy track like pants from Express. It’s amazing what we can remember; well it was a pivotal moment after all. Let me just say, pads, so terrible. If that is your preference that is fine though.

I immediately went on to tampons as soon as possible. I had no idea the pain I was about to endure. It feels like I was stabbed with a knife that has jagged edges coming out from every angle and it’s just being twisted inside my pelvic area.

Now, I have always hated pills, but I had no choice but to take ibuprofen since my period began. It had to be smashed because I couldn’t bring myself to take them. Eventually, at some point I could take them whole.

Can you imagine how much my insides have been messed up just from having to take those. That went on to being prescribed Percocet’s and Vicodin for my pain, and that doesn’t even help either.

My story will have a lot of descriptions of what I went through and all but in the end hopefully I will have a resolution, and it will bring you to yours.

As well as what I have learned to avoid; basically, like a trial and error when I get my period. It’s practically every food out there when that time comes. I only would have chicken soup and hot tea. Dairy, sweets, and anything cold intensified the pain. I also figured out that I have a gluten sensitivity.

Therefore, the noodles I was having in the soup weren’t so great for me either. As for really anyone it is better to be gluten free. There are about 18 million Americans with this sensitivity, just throwing that out there.

I’m somewhat astonished that now they are finally putting out more gluten free food. It can be hard at times but there are places that are affordable, such as Trader Joes that carry gluten free food.

In about two to three months, I lost eleven pounds from only cutting out food with gluten. I have seen countless gynecologists I mean I can’t even recall how many, at least over ten. It becomes tiresome and you lose hope having to explain to yet another person that probably can’t help you.

At the same time, you also have so much faith that someone can help. There must be someone, you just can’t ever stop looking. If you get down, just think if you’re feeling this pain then there is also a person out there that is meant to help.

I’ve missed a lot of celebrations like birthdays, missed so much school I had to drop out, and have just been in straight up misery.

When I first thought I had endometriosis was around 2011, so I saw a specialist. Well, I thought he was a specialist shall I say. The laparoscopic surgery was up to me if I wanted to have it done and see if I had it.

I was sure I did so of course I said yes let’s do it, and then while I was still under from my surgery a nurse told me I didn’t have it. Good job nurse. I have no idea what she was thinking. If you are a nurse do not be stupid and do something like that. Wait till I’m wide awake and about to leave or something. I much rather have been told I have it, and will find some relief now.

December 6th, 2011 is when I had the surgery, and I still believed I had Endo. I’ve read from many that it’s still possible to have it, and it not be detected. So, the search continues.

Just about two months after the surgery I had my first panic attack, on March 8th. A lot of crazy things we’re happening in my life at the time, and I was 13 years in this debilitating pain. I think there is a correlation.

There is something I would like to stress, eat well and exercise. Even now I still don’t exercise. However, I’m trying to get into yoga, and I do love it. It is good for both anxiety and menstrual cycles. In the least anyone can eat well.

If gluten free food is too expensive which it can be, focus on meat and vegetables. In this month of February that is about to begin in a few days I’m dedicating myself to even more researching. I’m also going to see a new doctor.

I am on a mission to get better; there will be no such thing as my suffering existing behind this coming year at least I hope. I was highly considering a hysterectomy, but that is just not an option, seeing how I would like kids one day. At least, I think I would we will see when the time comes.

Even with endometrial ablation, there are always risks with these procedures. Like a thermal injury to the uterus. I feel like I just can’t win, but I am going to. The latter procedure entails a doctor inserting tools through the passageway between your vagina and uterus. No incision is needed. Interestingly, no doctor I have ever seen mentioned this. Now to think of it not a surprise, all they would do is dismiss me.

Luckily, at my current job my boss is the best there is. I told her about my unknown condition. If I must leave work or not go in she is very understanding. As soon as that pain hits I need to take painkillers, get in comfy clothes, put the heating pad on, maybe put icy hot on my pelvic area, and pray it won’t be a bad one. It always is though.

I switched from regular tampons to organic cotton ones. Unfortunately, I have not noticed a difference in helping, but for one thing I know it’s better for me health wise. I get it from a company named Lola, that’s online. A couple women suggested I try Diva Cups, so maybe I will sometime.

A very good friend of mines wedding is this February in 2016, and I’m hoping I will be able to enjoy myself. Since I’m supposed to get my period the day before, I’m hoping for a miracle. I need to eat super clean all month especially the week leading up to it.

I’m also going to start drinking Raspberry leaf tea, and especially when I’m on my period. I’ve heard that should help as well. Something I’ve never heard of helping till this week is fennel and fennel seeds. This is exactly why I’m writing this. Never in the last seventeen years did I know that could help.

All my digging up for answers has presented options that may make things better. Along with making it better for me, I’m sharing in hopes to help everyone that comes across this. When you’re fighting against your body it feels like your trapped. I started adding fennel seeds to my smoothies starting February 6th. I bought the Nutribullet the night before. I have noticed a huge difference from the taste, and smoothness using it.

Upon reading an article I found out that flax seeds are not the best for me. They are a phytoestrogen just like soy products. I believe I have an estrogen dominance so it’s very bad to add to that. That taught me a lesson even if someone suggests that you should have something and its natural look into