Caroline was diagnosed with Endometriosis when she was 13 years old, and her fight has been a well-fought and busy one! Now 15 years old, she shares her journey with us today!
Caroline’s Journey: My name is Caroline. I am a 15 year old girl and deal with endo in everyday life. Lets start with a little info about me. I am a competitive swimmer, my team is very intense.
I was diagnosed with endo at age 13. Before endo with many doctors and tests including colonoscopy, endoscopy, MRI, cat scans and lots of ultra sounds and internal and external tests the found nothing wrong with me. I did find out I had IBS and now am on medication. We really assumed all my chronic pain was that and constipation on weekly basis.
If you’ve been a long-time follower of the blog, you may remember in 2014 when my surgeon found Endometriosis on my diaphragm. Several years later, it had completely disappeared (yay!). And it hasn’t been found in any of my subsequent surgeries. This research has been a lot of fun because of my own personal journey.
We’ve previously shared Endo Lady UK‘s experience with her own diaphragmatic Endometriosis, as well as a surgery to remove diaphragmatic Endo. We’ve even had a few brave readers, Lyndsayand Tabitha, share their own stories about endo on their diaphragm.
Recently, a study hit my inbox about Endometriosis mimicking an inguinal hernia. So, of course, my interest was piqued and research had to take place! Be warned, though, it’s considered VERY rare. In all the literature I’ve read, only 42 cases have been referenced as being documented inguinal Endo. But when has rarity stopped me from sharing something about Endometriosis? Yeah. Never. Here we go!
What is AN inguinal hernia?
An inguinal hernia is the most common type of hernia (about 70% of hernias are inguinal) and usually manifests as a small lump in the groin area. Both men and women can get inguinal hernias, but it’s apparently more common in men. It occurs if there’s a small hole in your abdominal cavity which allows fat or intestines to seep through, which can a lump or swelling to occur.
I’m sitting here going through my very old post-surgery emails and I’ve stumbled upon one from December that made my jaw, once again, drop. A study was published in late 2018 about a woman who was discovered to have an endometrial cyst inside her pancreas…WHAT? It’s super-duper rare.
As usual, this isn’t meant to scare you. Just inform you…
As you know…I’m prone to following studies down rabbit holes and satisfy my curiosity. Today is no different! Read on, dear Reader…read on!
Aly was diagnosed when she was 15 years old. Now 21, she shares her Journey with us, and she has been through so much. She does, however, continue to fight and push ahead and raise awareness. She’s an incredible woman. And one hell of a Warrior.
Aly’s Journey: I have been a runner since I was four years old. It has always been my passion, but it was also where my pain began. In the spring of my junior year, I was running on the track as usual when I suddenly I fell to my hands and knees in severe pain. I vomited when I tried to get up. It was the beginning of a life-changing injury in which I would endure unbearable stomach pain that I still experience even though it has been 7 years since I was diagnosed.
I know a few EndoSisters who have chosen to keep their diagnosis private for one reason or another. During a month where many are shouting about Endometriosis to raise awareness, I wanted to remember the ones who choose to remain silent. And respect that choice.
I had the pleasure of interviewing an EndoSister who keeps her diagnosis a secret. Not only to understand her choice and position better but to also give her a voice. A forum to speak her peace, share in a way that doesn’t corrupt her privacy, and encourage those who also endure in silence.
I would introduce you to her, but she shall remain Nameless. She shall remain Faceless. Just know that she may be your friend, daughter, co-worker, or wife.
How old were you when you began to feel Endometriosis symptoms?
I think my symptoms started when I started my period at twelve. My periods have always been extremely painful. And I have always been scrunched up in a ball in tears.
Did you ever tell anyone then that you were having these issues?
How was that received?
I either got laughed at or told to be quiet. (That’s being exceptionally nice)
When were you diagnosed with Endometriosis?
Two years ago this past February
How did your diagnosis come about?
Doctors found a large cyst on my left ovary from an MRI then confirmed with two follow up ultrasounds.I had surgery to get it removed. The cyst was a chocolate cyst. When my doctor came to talk to me after I woke up from surgery, she told me I had Endometriosis. She also said that she had never seen so much endometriosis in someone and that it was everywhere.
How did you feel when you learned you had Endometriosis? Not surprised, and a little relieved. It made sense why I have been in so much pain. The past few years the days without pain were less than the days with pain. After so long I just got used to being in pain all the time. Continual pain is normal.
But it was a huge weight lifted off of me knowing that I am not some weak ass pansy who can’t handle shit. (Refer to the question three about how my pain was received).
Are you ashamed? Embarrassed? Angry? Confused? All the things? Which and why?Ashamed, no. Embarrassed, no. Angry, yes. Confused, no. Sad, yes. Frustrated, yes. Alone, sometimes. And so many more emotions. Some days are better than others. And some days I want to crawl into a dark cave and just cry and cry and scream (these days are few and far between).
Have you told your friends, family, or co-workers about your diagnosis? Only my EndoSisters here know as well as 4 close friends. Two coworkers know I had abdominal surgery and one of them knows it was to remove a cyst, but neither of the coworkers know my Endo diagnosis. My family and other friends do not know.
If not, why have you decided not to tell people? I have not told my family or my friends for one reason I still don’t feel comfortable even saying here. I also haven’t told my family because of my response to question number 3. I have not told three of my close friends because: 1) I know 2 of them can’t keep a secret. 2) the one that can keep a secret, has never been supportive of me when I talk about my pain and how much I hate it. She’s not outright mean, just dismissive about it. She also would not agree/support the reason I am not saying here.
How were you able to find EndoSisters? And how did it feel being able to connect and share with them?
I have a friend with Endometriosis and she directed me to Bloomin’ Uterus. To say it was difficult to open up to my friend does not even begin to describe what I was feeling and going through. (As a matter of fact, answering these questions is taking me hours and a whole lot of fucking tears to get through).
I had two friends offer to help take care of me when I told them about my surgery. One ended up with the flu the day before my surgery, so only one was able to help take me to and from the hospital and then spend two days with me (including my surgery day). I took 1 day short of two weeks off work, so I took care of myself the rest of the time. I contacted my friend with endometriosis two days after my surgery (through Messenger while pretty high on pain medication). I was in tears, frustrated and feeling completely lost and alone. I don’t think she will ever truly know how much she helped me that day and the extraordinary supportive woman she has been since. I would not be where I am today without her warrior-ness.
I have been able to connect with other ladies in the support group and they have been so incredible and encouraging. I get to talk to some ladies on a daily if not weekly basis. They make my days so much brighter.
I see what so many other ladies talk about in our support group and it kills me that they are going through this same shit. But everyone provides such support and love and understanding. These ladies are the best.
Sometimes when I do feel alone, I just go to our support group and read. And sometimes it helps a little and sometimes it’s like getting the huge bear hug I need. Even a heart or a like to a comment I make.
How has the silence affected you?
It sucks balls. Sometimes. But most of the time, I know it’s the right choice and I am comforted in this decision.
Do you think you’ll ever tell others about your illness?
No. A significant other maybe. But I find that terrifying. And yeah, yeah my boyfriend, husband or spouse should support me blah, blah… The thing is… You don’t know. You don’t really truly know until you have been put in this situation.
How do you think your announcement will be received?
One, I’ll be looked at with pity. And I fucking hate that shit. Two, everyone I haven’t told will be hurt that I kept something from them and they probably won’t trust me in the future. And they will probably think that I’m hiding things from them. Three, I will be told that it’s my fault that I brought it on myself for hating my periods and if I just accepted the pain I had from the beginning this would have never happened… Power of attraction… blah, blah…
Is the reaction of others learning so long after your diagnosis part of the reason for your silence?
Nope. Once I found out, I never planned on telling. (Even my friend I opened up to in the first place.)
What would you tell other women who have decided to keep their diagnosis a secret?
You’re not alone. You’re just not. Whatever reason/s you have for keeping silent is/are the right reason/s. You don’t need to justify yourself. Not to yourself. Not to anyone else. I don’t care if it’s your family, spouse, your best friend, your boss, who the fuck ever. YOU DO NOT HAVE TO TELL ANYONE IF YOU DON’T WANT TO.
How can your EndoSisters help you?
Just keep doing what you’re doing ladies. You are amazing and have helped me more than you can possibly know.
Is there anything else you’d like to share?
What a beautiful and eye-opening experience for me. I’ve always been an over-sharer and cannot imagine enduring this illness in silence. But I love and honor my EndoSisters for their decisions to remain quiet. Whatever those reasons may be. If you have chosen to keep silent, stand by that decision.
Never let us guilt you or judge you into divulging your secret.
And know, like she said, you are not alone: “You do not have to tell anyone if you don’t want to.”
To all those who endure and suffer in silence, you have my respect and love. Consider yourself gently hugged from afar.
And, to the Warrior who allowed me to interview her, I cannot thank you enough. You are so incredibly strong and brave and have been an incredible presence in my life, and the lives of other EndoSisters.
Shadoegirl19 was just 16 years old when she learned she had Endometriosis. Now 48 and living in Michigan, she shares her story with us today…and uplifting encouragement. Not only was she able to have three beautiful children prior to a hysterectomy, but she, unfortunately, was also diagnosed with inoperable Endometriosis of her spine. However, she remains incredibly strong and supportive.
Shadoegirl19’s Journey: At the age of 16 I lost my right ovary to Endometriosis. I had suffered from about 13 (the on set of my periods) until the day my ovary basically exploded from all the endometriomas & scarring. The surgeon had never seen anything like it (lucky me).
(A quick note from me: I cannot believe I get to update this article, originally written in July 2017 – now I get to add to it in July 2021!)…
Can you imagine cutaneous Endometriosis in your rump! Your crack! The behind!?!
A study published online in June 2017’s edition of the Journal of Gynecology, Obstetrics and Human Reproduction discusses a case of Endometriosis in a very peculiar and very extra-pelvic location: the buttcrack!
One of our readers (who shall remain anonymous) asked if we could look into a topic: “Pudendal nerve pain-when is it endo and when is it not? Or is there even a way to know?” So, here I go off to learn things and hopefully share a bit of that newfound knowledge. And since this blog entry is Endometriosis-related, I’m going to keep the anatomy female (although men have a pudendal nerve and can also suffer from these symptoms).
Where’s the Pudendal Nerve?
The pudendal nerve is located back by the tailbone, and extends along the pelvic floor and around the pelvis, toward the rectal, gluteal, and clitoris areas. There’s two: a right and a left pudendal nerve. One or both pudendal nerves may cause issues, which we’ll get into right now!