Endometriosis: what is it, how are you diagnosed and do I really need the surgery?
Help me figure this out...
According to Mayo Clinic, they define endometriosis (en-doe-me-tree-O-sis) “endo” for short, as, “an often painful disorder in which tissue similar to the tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus. Endometriosis most commonly involves your ovaries, fallopian tubes and the tissue lining your pelvis.” Unfortunately endo can be found in other parts of our bodies outside of the pelvic region. It can attach to our stomach organs, can cause bowel obstructions, leech onto our diaphragm, and even go as far as to entering our brain (rare).
It’s a scary disorder that can take up to 10 years to get a proper diagnosis due to complexities and the fact that it is heavily under researched. Not to mention the fact that you may bring up the endometriosis in the doctor's office and some won’t know what you are talking about. A disorder that flies under the radar for doctors but sometimes daily present in the lives of someone suffering from it. Just hearing people's stories about how long it took to get diagnosed makes you already feel defeated in your own journey, but there is hope.
It did take nearly 10 years for me to get a proper diagnosis. In and out of ERs, doctors' offices, often feeling completely and utterly lifeless when no one seemed to know what was happening to me. ER doctors telling me “it’s just a painful period”, doctors saying, “you must be one of the ones who has painful periods.” If anyone says this to you, run. Find a new doctor. Our cycles should never be so painful that we cannot move, paralyzed, unable to even cry, properly breathe, unable to eat or even consume liquids, held up in bed all day or for days on end. This is not normal. This is not okay. This is also not something that is just in relation to our cycles. People, including myself, have pain outside of cycle times. While yes when our uterus sheds, we can have even more pain, a lot of survivors suffer other days of the month.
Symptoms of Endometriosis
On the internet you’ll find:
Excessive bleeding
Painful periods
Pain with intercourse
Pain with urination or bowel movements
Infertility
Bloating
Fatigue
Diarrhea
But, what was explained above is a big part of the reality. A debilitating lifeless disease that can strike at any time and often flaring when high stress is present, you enter your cycle stages and even ovulation, and sometimes food choices can pin you to experience the pain. As a person who studied a lot of psychology, I would be ignorant to not state that sometimes the pain will come in as a lightning bolt when we’re emotionally distraught, processing trauma, or days where c-ptsd is present. It’s why it’s even more necessary to heighten your self-care routines, eat healthier balanced meals, to keep your cortisol levels down, and remove all toxic things and people from your life. These things help tremendously and will need to be a priority if you are in a position where you are unable to get medical treatment due to insurance or other reasons. If this is you, I am very sorry and I hope the tide shifts quickly for you.
It can feel debilitating trying to advocate for our medical and personal needs, essentially our health and well-being. Too often we’re left to play detective, track our pain, our cycles, ovulation, even bowel movements. Too often dismissed as over emotional women who can’t handle the pain. We’re left to try and put together our own research from stories of others just to feel like we’re getting anywhere. I personally found the stories of others on social media to be profound in my grit to advocate for myself, feel less alone, and in my healing journey after being diagnosed and what all comes with that.
How do I get diagnosed?
You might be asking, okay, I hear you, this is me, how do i get diagnosed? Unfortunately, it’s been proven that a true diagnosis of endometriosis can only be provided through a laparoscopic procedure. In rare cases, if your endo lesions are deep enough it can be found in a sonogram but again it’s very rare. What is a laparoscopic procedure? It's a procedure that requires the patient to go under general anesthesia, your doctor will pump CO2 gas into your abdomen to create space to better see the endometriosis lesions and make small incisions so a lighted camera can see into your pelvic, often leaving a patient with 2-5 small incisions in the symbol of a triangle on your abdomen. This allows the experts to examine each side of your pelvic, your ovaries and it’s connecting tissues. Almost always an incision will be made on the belly button, and other surrounding areas to get a better view point on your uterus and surrounding organs. It sounds scary, but it’s been proven to be a minor surgery but can be a hard recovery depending on the person and if complications arise.
If doctors see endometriosis they will take the next steps to remove it. I will say do a bit of research here and talk with your doctors preparing for this stage of the procedure. Some doctors choose certain types of surgery/ways to remove the endo, such as ablation or excision. Ablation is where the endo is burned but often leaves it’s roots. Whereas excision surgery is cutting it out at it’s root. From what I’ve read, excision has better long term outcomes. Additionally, you’ll most likely need to face some tough decisions based on the “what ifs” and future fertility which can be hard but your doctors will explain and help you in that regard.
Do I really need to take this step? How do I know if I need the surgery?
Girl, If you got this far into this post, have been researching and researching about your pain, have experienced symptoms talked about above, you most likely need it. Consult with your doctor and get a new doctor if you don’t feel like you are being taken seriously.
I know first hand how disheartening and deathning this disease can make you feel and even more so when trying to get answers. From someone who didn’t take the disease seriously early on and let my soft voice and childhood traumatized mind and body be trampled over by doctors, please please, stand up for yourself. You are strong and powerful and have a voice! You deserve proper care and to be pain free!
Conclusion
So much can be said but I don’t want to be an additional person providing you overwhelm but I do hope this helps you identify if you are feeling in the right place with trying to get an endometriosis diagnosis and that you can begin to advocate for your needs. If you stumbled upon this post, you are most likely suffering from endo and on a quest to feel less alone and pain free and I’m so sorry you have to be dealing with this. I hope you find the right doctor who takes your pain seriously and I hope you get relief soon. Feel free to message me here or on Instagram. I’m here for you!
1 in 10 women will suffer from endometriosis. You and I and many many others.
With love,