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What is endometriosis and why does it take so long to diagnose?
Endometriosis. It’s a term you may have heard in commercials or ads lately.
Perhaps even your doctor has suggested that you have this mysterious condition.
Or maybe your symptoms are brushed off with one of these gems:
- “It’s just a bad period.”
- “Cramps are totally normal.”
- “Just take some ibuprofen.”
- Or one from my college health center: “Are you sure you’re not pregnant?”
Surprisingly little is known about this condition despite it affecting 1 in every 10 women.
Please note: I am not a medical professional. This content is for informational purposes only and is not intended to treat or diagnose any conditions. Always consult your doctor or medical professionals. Full disclaimer available here.
What is Endometriosis?
Endometriosis is when the cells that grow as the uterus lining (endometrial cells) grow elsewhere in the body.
The lesions can grow on the ovaries, fallopian tubes, intestines, and wall of the abdominal cavity. I’ve even heard in a rare occurrence they’ve even been found to grow on the lungs and brain!
Just like normal endometrial cells grow a nice cushion for an embryo to implant every month, so do these misplaced cells.
And just like those correctly located cells that shed each month, resulting in your period, these misplaced cells also shed.
The difference is that the endometriosis cells are just shedding into your abdomen, with nowhere to go.
As you can imagine, this can result in loads of pain each month.
This pain can be so intense that it makes it difficult to even move, leading to missed school or work and canceled plans.
Endometriosis can also cause scar tissue or adhesions. These adhesions can attach to various organs and can pin them down or attach them to each other.
What are the 4 Stages of Endometriosis?
Cases of endo are organized into 4 stages, or classifications. These are based on the severity of the disease, not the amount of pain experienced.
Someone with excruciating pain may only have stage 1. Conversely, someone with stage 4 could be asymptomatic.
According to the American Society of Reproductive Medicine (ASMR), the stages are:
Stage 1: Minimal
The patient has just a few shallow endo implants.
Stage 2: Mild
More endo implants are present and they go deeper into the tissue.
Stage 3: Moderate
Many deep implants are present and there could be endometriomas on one or both ovaries. Adhesions may be present.
Stage 4: Severe
Lots of deep infiltrating endo implants. Large endometriomas and dense adhesions.
Enddofound has created another classification that is more specific. It includes where endometriomas may be found in the abdomen and which organs may be involved.
RELATED: Endometriosis Excision Surgery: Hospital Bag Essentials
What are the symptoms of endometriosis?
Symptoms vary and in some cases, there aren’t any noticeable symptoms.
Probably the most common symptom is excruciating pain, especially during menstruation.
Endometriosis can cause:
- painful periods
- abnormal periods
- abdominal pain throughout the month
- lower back pain
- leg pain
- pain during or after sex
- bowel disorders
If you notice these symptoms, be sure to talk to your doctor about them.
Cramps and excessive period pain may be common, but they are not normal.
Many of us have been gaslit around this, myself included. Numerous times. (It shouldn’t have taken over 15 years for my diagnosis). If you feel like your medical professionals aren’t listening, please find someone who will.
Don’t give up.
You deserve to be heard and to feel well.
These resources by the Endometriosis Association can help you to track your symptoms and locations in the body you’re experiencing pain and how frequently.
Who does endometriosis affect?
It can affect girls as young as 8 to post-menopausal women and affects all races and ethnicities.
Endometriosis affects 1 in 10 women. Ten percent of biological females. According to the World Health Organization, that’s approximately 190 million individuals.
That’s not quite true, actually.
It’s not just the endo sufferer. I think it’s important to recognize those that provide support. Their lives are also impacted.
For cases with severe symptoms it can turn the entire household upside down.
When I’m out of commission, all of the cooking, chores, and taking care of the pets lies solely on my husband.
The past few years, my parents have made grocery runs when I couldn’t get out of bed. They’ve driven me to appointments when I was in too much pain to sit up straight. (I am so grateful for them.)
I might be the one most directly impacted, but I’m not the only one affected.
What causes endometriosis?
The cause is currently unknown.
One theory is that it is caused by reverse flow, where some period blood flows up through the fallopian tubes and enters the abdomen that way.
Another is that it’s passed down genetically.
Not enough research has been done to provide clear answers.
RELATED: Recovery Essentials for Endometriosis Excision Surgery
How is endometriosis diagnosed?
Generally, it takes 8-10 years for endometriosis to be diagnosed.
It takes so long because it’s diagnosed visually through surgery. Endo lesions look like little purple/dark chocolate chips.
Most doctors will perform an exploratory laparoscopy to diagnose. This is an outpatient procedure that only requires about 6-8 weeks for a full recovery.
I’ve heard and read that some doctors will look for cysts or try to use less invasive methods for diagnosis, but these are not the most accurate or reliable methods.
Cures for endometriosis? How is endometriosis treated?
There’s currently no complete cure, but there are things that can delay its progression and help with symptoms.
-Surgery: laparoscopic, robot-assisted laparoscopy, or open
Surgery allows your doctor to physically remove endometriosis lesions and adhesions and detach your organs if needed.
It helps to reduce pain and can help with infertility.
Surgery doesn’t prevent new lesions from forming and your doctor may not be able to remove everything depending on the locations and associated risks.
If you’re already considering surgery, or have a procedure scheduled then check out this post on how to prepare for endometriosis excision surgery, and this one for what to pack in your surgery hospital bag.
In the resources section at the bottom of this post, I’ve included several sites where you can find an endometriosis specialist near you in your area.
Pregnancy is great for endo because of the changes to your hormones and the way your body shifts and moves to accommodate the growing baby.
It basically puts a pause on the growth and spread of endo.
The shifting of your organs can also release scar tissue.
(*BTW, It’s totally ok if this option isn’t right for you. Having endo doesn’t mean you should get pregnant even if you don’t want kids. You know what’s best for you. These are all just options for your information that you can choose to explore. You do you.)
-Pelvic Physical Therapy
Pelvic PT can help to release tension and can make sure your body is in alignment to reduce pain. They can work on the mobility of your abdominal organs too.
Look for a pelvic physical therapist that can do visceral manipulation and myofascial release.
They may also use dry needling and cupping. Part of your therapy may include home exercises like specific yoga or pilates moves.
My pelvic pt helped to determine that a lot of the pain I was feeling was actually in the viscera and she suggested a tens unit that I could use to help with painful cramps. My sessions really helped to reduce pain before my excision surgery.
Not only that, but she is the one who directed me to my endo doctor. Finding a pelvic physical therapist was truly life-changing for me.
Search for an endo physical therapist here.
-Exercise for Endometriosis
Getting in movement, in general, is what I’ve found to be most helpful. Sometimes that’s simply walking, and other times it’s doing Callanetics or pilates, and still other times it’s HIIT or dance workouts.
You’re allowed to change things up each day depending on what feels best for you atthru the moment.
Yoga can be really helpful for alleviating pain. YogaYin has a playlist with over 20 videos specifically for endometriosis.
One of the nurses at my endo doctor’s office recommended turmeric tea. She’s found it helpful for reducing inflammation and keeping her endo at bay.
I like this Ginger Peach Turmeric Tea since turmeric alone isn’t my flavor preference. I also like this one iced more than as a hot tea.
The same nurse also suggested eating lots of veggies and greens.
And after my endometriosis excision surgery , my doctor stressed the importance of getting enough fiber, especially with higher stages of endo. She recommended taking a fiber supplement like Metamucil or Benefiber even if you eat lots of veggies and fiber.
I’ve also noticed less pain when I don’t eat as much sugar or gluten. These tend to be inflammatory for many people. It may be helpful to look into an anti-inflammatory diet.
Basically the most common, one-size-fits-all solution to female problems.
The pill can help with regulating your cycle and may help to reduce pain.
This doesn’t remove the endo or actually heal it. The endo will continue to progress.
So while symptoms may be reduced it’s likely only temporary.
In my case, this was like a bandaid on a gaping wound. My doctors at the time kept increasing the dose strength but didn’t attempt to figure out the cause of my severe pain and heavy bleeding.
(I’m curious if this go-to solution is one of the reasons diagnosis takes so long.)
If you go this route, I’d encourage you to also look at other options to pair with it. Like looking at diet and exercise to support natural hormonal balance.
While these can help alleviate the pain they aren’t healing the endo and too much can lead to other health concerns, so definitely check in with your medical professional.
Your doctor may recommend that you try a specific pain med like Aleve, or in some cases, they may want you to take prescription-strength amounts for severe pain. Definitely talk to your doctor to figure out what is needed for your specific situation.
I have a post about natural ways to help alleviate period pain available here. These are the best ways that I’ve found to help with my severe pain (before my endo excision surgery) besides taking medication.
RELATED: Excision for Endometriosis Surgery: How to Prepare
With endometriosis can I get pregnant?
It can be more difficult, especially if you have stage 3 or 4.
In some cases, you may need IVF. Like if you have adhesions blocking your tubes or severe endometriomas on the ovaries.
There’s nothing wrong with getting a little help.
But you definitely can get pregnant.
Pregnancy is also known to help with endo since the hormonal changes and lack of monthly periods put a pause on the progression of endo.
The way your body shifts to accommodate your pregnancy is also thought to help release adhesions.
You’ll find many posts here relating to fertility and IVF that you may find helpful, from all the acronyms, to resources, to tips for IVF stimulation shots, egg retrieval, and progesterone in oil shots.
How does endo affect your life?
Endometriosis can cause you to miss school, work, or events. This can lead to being behind in lessons or work and potentially trouble catching up.
It can cause infertility which can be stressful mentally, emotionally, and physically.
If you need to do IVF it can impact your finances, your schedule, and your relationships.
Getting surgery can also impact your finances and time is needed for recovery.
Endo can cause digestive distress and cause painful elimination and bloating.
It can impact your romantic relationships by causing pain during intimacy, or just randomly throughout the month.
Your partner may not know how to support you during a flare-up, so communication is key. Let them know what’s going on and what your needs are. And be sure to check in with them too. It can be hard being a caretaker as well.
Prior to my surgery, in a good month, I was basically stuck in bed for a couple of days when my period began. In the worst months, I was in bed for a solid week and it took another week to catch up on sleep and regain my energy and mental clarity.
Before the cramps started I would stock up on easy snacks to keep by my bed in addition to my heating pads (yes, I have a collection of heatables- from a microwavable panda bear to an XL heating pad) and a bucket (have you ever been in so much pain that it caused nausea and vomiting? I genuinely hope not.)
In this section, I’ve included links to resources that I’ve found to be helpful. I’ll continue to add more as I find them, so bookmark or save this post so you can come back easily.
If you have a resource to add, let me know in the comment section at the end of this post. Thanks!
The Endometriosis Foundation of America is an organization that provides loads of info and advocacy for patients with endo. Check their website for resources and educational materials.
This site has a library of articles for endo education and a large Facebook group with loads of information including personal experiences with surgeons and specialists.
I use these affirmations when going through flare-ups of pain. It can help to focus on healing and calming thoughts. I’ll repeat them to myself while breathing deeply and focusing on relaxing each muscle group.
Integrative Women’s Health Institute
On this site, you’ll find many endo-related articles (including this one about sleep and melatonin in relation to endometriosis) and courses and can search for care.
The American End of Endo Project
On the Endo of Endo site, you’ll find a bunch of articles relating to endo and can search for care with endo specialists.
Worry Head Blog
Lucian began this blog for men to help support caregivers and partners to women with endometriosis and fibromyalgia. It may be a helpful resource for your partner or any support people in your life.
This site can help you to find a surgeon or pelvic pt that specializes in endometriosis. In addition to their searchable database of experts, they have lots of relevant articles that you can read.
Excision for Endometriosis Surgery: How to Prepare
In this post, I’ve included my top tips for getting ready for endo surgery. You’ll learn what to do and get so that you have a smooth experience and easy recovery.
Endometriosis Excision Surgery: Hospital Bag Essentials
All the essentials that you’ll want to pack in your hospital bag just in case you get admitted into the hospital after your laparoscopy.
Recovery Essentials for Endometriosis Excision Surgery
The recovery essentials that will help you to have a smooth and easy recovery from your laparoscopy. So that you can get to feeling better and enjoying your life again.
YogaYin- Endo Yoga Videos
Allannah is a certified yoga therapist who specializes in yoga for endo and fertility. She has a whole playlist with yoga videos for endometriosis and many additional videos for other women’s health concerns.
This site provides endo resources, information, and real patient stories.
I know this post contained so much information, so if you made it here (to the bottom)- congratulations!
Please advocate for yourself. This is so important. Whether you’ve been diagnosed or just suspect endo.
I suffered from undiagnosed endo for at least 15 years. That’s way too long.
You don’t need that. You deserve better.
It’s not normal to have cramps so bad that you can barely walk.
If you’d like to see more posts about endo or if you have a favorite endo resource, please let me know in the comments below.
Hi, my name is Katy. I started this blog to help you infuse life with ease and joy by sharing recipes and tips for your fertility and lifestyle.
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