Endometriosis: The complete guide to symptoms, fertility concerns, treatment options, and holistic management
There is so much to say about Endometriosis and its impact on women’s health.
If you’re new around here, you know we love to talk ALL things women’s health, particularly on the continuum of preconception to postpartum. As someone who has lived through the nightmare of seeking endometriosis diagnosis and treatment, and now also works with tons of endo warriors to discover their body’s amazing ability to heal, we’ve GOT to talk about this.
As a pelvic floor PT who dealt with years of chronic pain before being diagnosed with endometriosis, I know the struggle well of
suffering from such intense pain with periods that I had to skip school or work
looking perfectly healthy but dealing with such intense pain and not knowing where to look for help
going to multiple OBGYNs seeking helop and Birth control being the ONLY option offered to me for management of my symptoms
Other uncomfortable symptoms like bloating , breast pain, and severe moods
hurting so badly that I had to say no to plans with friends, quit doing activities I loved like running, and losing a sense of myself
Googling my symptoms and knowing they weren’t normal, but being told all my labs were “normal” in the doctor’s office.
spending YEARS seeking help and not getting a diagnosis
And as a woman who struggled with irregular cycles and experienced two miscarriages, and now working with others like me as a holistic fertility coach, I know firsthand the importance of identifying and managing endometriosis ideally BEFORE trying to conceive, as this disease is known to contribute to infertility (but this is often NOT the case- keep reading!).
Unfortunately, even though this disease impacts 1 in 10 women, there is a lot of misunderstanding of endometriosis, the signs and symptoms of endometriosis, and how it impacts women’s lives- beyond just having severe pain with periods and heavy menstrual bleeding.
Did you know that medical professionals - even OBGYNs - get almost zero training on endometriosis diagnosis and treatment beyond prescribing birth control pills, and the 1+ in 10 women who have various presentations of this disease are being missed.
This is a huge reason why endometriosis takes 6-12 years on average to diagnose, and women typically see 4-6 doctors before they get an accurate diagnosis of endometriosis.
In this ultimate guide to endometriosis we are going to talk about:
What is endometriosis
Common signs and symptoms of endometriosis
Less common signs and symptoms of endometriosis
How Endometriosis is diagnosed
Types of surgery for endometriosis
Holistiic treatment for endometriosis
Pelviuc Floor PT for endometriosis
Misconceptions and Myths about Endometriosis
Infertility and Endometriosis
How to heal from endometriosis
What is endometriosis?
Here’s what you need to know:
Endometriosis is a systemic inflammatory condition (read: it impacts the WHOLE body) that is characterized by tissue that resembles the endometrium (lining of the uterus) that is found OUTSIDE the uterus.
It was once thought that the endometriosis lesions were ACTUALLY endometrial tissue that somehow migrated outside of the uterus but we now know that the tissue in endometriosis is SIMILAR but not the actual uterine lining (again- limited research here!)
These endometrial “lesions” are hormonally active, just like the lining of the uterus that builds up and sheds every month. The lesions do not shed like the actual endometrium, but they can wreak havoc on the body, causing severe cramps, painful bowel movements, and extreme fatigue.
Symptoms of Endometriosis: Severe period cramps and pelvic pain
Those who HAVE actually heard of endometriosis probably associate it with “really painful periods”. And this is definitely a sign of endo - because endometriosis often (but not always) causes severe period pain. But because we have normalized period pain in our society, you may not recognize what “counts” as severe period pain.
The type of severe period pain we are talking about could look like:
You’re taking more than 2 ibuprofen tablets on the first and second day of your period
You’re glued to your heating pad all day
You have to cancel plans, leave work early, or skip class when the cramps hit
As a child, you begged your mom to stay home from school when you were on your period
You land in the ER!!! (I’d hope this was obvious, but, our medical community doesn’t seem to always be as alarmed as I am about this)
Were you surprised by any of the above?
Endo is definitely known for causing debilitating periods, but it also wreaks havoc on many other body systems and organs- digestive, reproductive, urinary, nervous, and musculoskeletal systems are typically ALL impacted.
There are SO many symptoms and comorbidities of endo, these are the most common that you will find listed when doing a google search:
severe period pain (see above)
abdominal pain that fluctuates with your cycle ( and abdominal pain all the time in teenagers)
painful intercourse
Bladder pain and/or urgency
painful bowel movements around your period
Irregular periods (Sometimes)
Low Back, hip, and pelvic pain
Lesser known symptoms of Endometriosis
In my practice working with women with either suspected endometriosis or diagnosed endometriosis, I tend to see similar patterns among many clients, that most of them don’t even see as being connected.
{A quick rant, if I may: Our medical system is based on hyperspecialization - aka you see a GI doc for GI problems, and OBGYN for women’s health problems, a psychiatrist for mental health problems, etc. This is great in some instances, but when it comes to endometriosis and other conditions that impact MANY body symptoms, this is a huge weakness because it tends to take much longer to connect the dots.}
Here are some common, but lesser-known, symptoms and comorbid syndromes I tend to see in women with endometriosis:
Joint hypermobility spectrum disorders and/or Ehlers-Danlos syndrome (EDS) - lots of dancers have this!
ADHD / brain fog
Irritable bowel syndrome, constipation, and other digestive issues
SIBO (Small intestine bacterial overgrowth)
Depression and anxiety
endometriosis AND PCOS (Polycystic ovarian syndrome)
Endometriosis and infertility: will I have to get fertility treatments?
Believe it or not, given the symptom list above, some women never discover they have endometriosis until they have experienced years of infertility and it is a “last resort” diagnosis to explain why nothing else is working.
Conversely, many women assume they will struggle with infertility due to their endometriosis because they have been told (often by doctors) that their only choice is endometriosis surgery or fertility treatments like IVF.
This can sometimes be the case, but believe me - your fertility is not doomed if you have endo (or suspect you have it).
Endometriosis can impact fertility in a few ways:
the adhesions from endo lesions and scar tissue from surgeries can cause mechanical barriers to fertility. For example, if the tissues are “stuck” as we discussed, sometimes that can cause decreased blood flow and poor flushing out of inflammatory substances. But also, it can literally stop your ovaries from releasing an egg. Mechanical infertility deserves its own blog post - but hopefully this gives you an idea of how it can impact you.
The inflammation from endometriosis can cause disruption to your normal hormonal cycles
The impacts of endometriosis on the gut can cause nutrient deficiencies
The stress and trauma of having endometriosis can cause hormonal dysruption, high cortisol state, and put the body into constant fight-or-flight mode, causing the nervous system to prioritize survival mode over normal, status-quo functions like reproduction (and digestion, for that matter!)
These are only a few examples - but the GOOD NEWS IS - many of these things can be healed naturally with some targeted nervous system support, nutrition, pelvic floor work, and hormone health support. As a holistic endometriosis fertility coach and pelvic floor PT, I have seen TONS of women heal their bodies, live without constant pain, and even start families.
And - even if you discover that assistive reproductive technology like IVF will be the best option for you to conceive with endometriosis, working on these things NOW will help you have a much better success rate if that is the route you choose. Keep reading to hear more about natural and non-surgical treatment for endometriosis.
How is endometriosis diagnosed?
On average, it takes 6-12 years to get an accurate diagnosis of endometriosis. Even though the red flag symptoms may seem obvious now that you’ve read this blog (eye roll), this is an extremely frustrating process.
Currently, the gold standard of diagnosis for endometriosis is a surgical diagnosis.
This means that someone has to undergo surgery to look for the physical presentation of endometriosis, send samples of whatever is found to a pathology lab, and wait for results to come back showing that these lesions are indeed characteristic of endometriosis.
Yes - that sucks!
In some cases, endometriosis is found incidentally during other surgeries like an appendectomy, Cesarian section, or fibroid surgery.
As you can imagine, the requirement that endometriosis be OFFICIALLY diagnosed with surgery puts a HUGE barrier to diagnosis, not only because surgery in normal circumstances tends to be a last resort, but also because even if it is “just” an exploratory laparascopy, any kind of surgery is a BIG deal for your body.
Um hello…. cutting into the body to see your organs? That’s a deep cut, no?
Endometriosis surgery: Adhesions and scar tissue
Any time someone cuts into your body, it is going to create scar tissue.
In endometriosis, the lesions already have a tendency to create adhesions - which is a fancy way of saying they cause a “stickiness” that mimics scar tissue.
Anytime you have adhesions or scar tissue, it can cause pain by decreasing the normal fluid mobility of the organs and surrounding tissue. This is especially true when we discuss abdomino—pelvic surgery for endometriosis (and even C-Sections)
One way to picture how scar tissue and adhesions in endometriosis effect the surrounding areas is this (take it or leave it! This is the best metaphor I could come up with):
Think about when your shirt or pajamas get all tangled up and stuck in the sheets while you’re turning over in bed. If your garments are caught, you can’t really turn over, and/or you are super uncomfortable until you release the shirt or sheets or whatever is stuck.
This is a silly example, of course, but it causes frustration because you cant move in the way you normally would until that sheet/garment is released.
This is similar to body tissues. When they are “stuck” together from scar tissue, the normal mobility of your muscles, fascia, and organs that typically flow together is impeded.
Over time, this can cause even more problems - you change the way you posture yourself, you change the way you move, your muscles get icky trigger points (knots) in them that perpetuate the pain you may already have from endometriosis.
From a healing standpoint, the scar tissue from exploratory endometriosis diagnostic procedures can be extremely detrimental.
In my experience, I see this actually causing increased pain in many cases, leading to repeat surgeries that cause more scar tissue, and a never-ending, frustrating cycle of debilitation from endometriosis.
As you can see, there are major downsides to having surgery JUST to diagnose endometriosis.
Does that mean if you suspect you have endometriosis that nothing can be done besides surgery?
Good news - NO! There are definitely other treatment options besides surgery, even if you don’t have an official diagnosis.
I believe a “suspected” diagnosis is enough to initiate conservative management of endometriosis, which is why I started my Endometriosis focused pelvic floor PT and coaching programs.
In many cases, though, endometriosis surgery IS the right choice, when surrounded by a holistic approach to pre-op and post-op care.
If you decide to have surgery to diagnose endometriosis, make sure you’re getting the RIGHT one.
Let’s talk about your options.
Diagnosis and treatment of endo: two general types of surgery for endometriosis
I got ahead of myself there talking about surgery. But let’s back up for a moment and clarify a few things:
There are TWO main types of surgery for endometriosis.
The first is the one I mentioned above: Endometrial Ablation. This is an “exploratory” laparoscopic (meaning they make very small cuts and use a camera to look around) surgery where they look to see if endometriosis is present, and then use a device (usually a laser) to “burn” off the lesions. Most standard OBGYNs are trained in this procedure and may suggest it if someone has severe period pain that has not resolved with birth control and other forms of hormonal suppression like Orilissa.
The second type of surgery is Endometrial Excision. This is also done laparoscopically with smaller cuts and a camera, but the primary (and CRUCIAL) difference is that they use a device to cut OUT the endometrial lesions.
Excision surgery is the GOLD standard for treatment (not cure) of endometriosis and requires specialized training in this particular technique.
With my pelvic PT and coaching clients considering surgery for endometriosis (but hold your horses - it may not be necessary!!!), I recommend endometriosis excision due to it being the Gold Standard and having MUCH better success rates and much LOWER rates of resurgence of endo.
Finding a specialized endometriosis excision surgeon is crucial.
Remember, Endometriosis Excision actually REMOVES the endometriosis tissue from the body.
It is important to find a provider trained in endometriosis excision surgery, because some of the lesions may be obvious, but many are clear or in locations an untrained eye may not see. For this reason, it’s essential to find a specialized surgeon who knows how to look for ALL forms of endometriosis presentations and in ALL areas they may show up.
While this type of surgery still leaves scar tissue that results in pelvic floor and abdominal dysfunction, it removes ALL of the visible endometrial tissue, so that post-surgical healing, with the right strategies, can bring LASTING relief and healing.
On the other hand, Endometrial ABLATION only takes off the surface layer of the lesions, and because its typically an “exploratory” surgery, there is less specialization in knowing all the different ways and anatomical locations endometriosis may show up.
As a result, if endometriosis ablation surgery is performed instead of excision, the endometriosis will almost certainly grow back, even if you get some relief for a few months.
Regardless of surgery type, laparoscopic surgery for endometriosis will always result in at least some scar tissue, which could increase pelvic pain even if the lesions are removed or remain dormant for a time.
BUT - If you are reading this and have gotten endometriosis ablation surgery - may I shed some hope?
Many women can heal and gain significant control over their symptoms without having additional surgeries.
Next, we are going to discuss non-surgical methods to manage endometriosis symptoms.
No doubt, these strategies will help you tremendously even if you do decide to undergo another surgery for endometriosis.
Is surgery always necessary to heal endometriosis?
In short - nope!
For severe cases, and even some milder cases with severe symptoms, it is one part of a holistic treatment plan, but surgery isn’t a silver bullet, even excision surgery.
Sometimes, persistent infertility or pain after diligent management with diet, lifestyle, pelvic floor physical therapy , hormone health support, and stress management may warrant surgery to allow someone to get pregnant naturally and finally get full, lasting relief from pelvic pain.
As a pelvic floor PT treating endometriosis , I always work with my clients to determine the best choice for THEM.
And if surgery ends up being the right choice, there are many things we do to prepare for and recover from the surgery- like pelvic floor physical therapy, nutrition support, and holistic hormone health management - so that the best outcome can be obtained, and more importantly, so that you can move your body without pain, get pregnant, and live your life.
Can you treat endometriosis without surgery?
Whether or not surgery is the best option for you, there is so much you can do to address suspected or already-diagnosed endometriosis.
While you cannot physically remove endometriosis tissue without surgery, it is possible to significantly reduce your symptoms and even put it into “remission”. The following are my top recommendations to take a holistic approach to endometriosis care.
Pelvic floor physical therapy
Pelvic Floor physical therapy is a crucial aspect of holistic endometriosis care.
Adhesions (sticky spots) from endometriosis lesions and scar tissue from surgeries can cause increased pelvic pain, decreased blood flow, diminished fascial mobility, which impact the function of organs in the pelvis - like your uterus and bladder!
These “stuck” tissues can also cause mechanical barriers to fertility, disrupting ovulation, fertilization, and implantation.
Pelvic Floor physical therapists are specially trained in soft tissue mobilization of the muscles and fascia (connective tissue) of the abdomen and pelvic floor, which improves blood flow to pelvic organs, helping decrease inflammation and pain while improving organ function.
While pelvic floor PT is an essential part of pain management, it can also help infertility with endometriosis by restoring normal function to the pelvic organs and calming the nervous system - which is crucial for restoring fertility with endo.
In addition, pelvic floor physical therapy will help you discover exercises, stretches, and other self-treatment tools specific to your symptoms, needs, and goals so that you can be empowered to manage your symptoms while you are on your journey to healing.
2. Nutrition
Nutrition for endometriosis is an essential part of decreasing inflammation and providing your body with the raw materials for healing.
And I’m not just talking about vitamins and supplements or restricting certain foods, although those things may be helpful for you.
Among my endometriosis coaching clients, I find many clients do not know how to adequately fuel their bodies for basic blood sugar balance and caloric needs, leading to increased inflammation that contributes to pain, bloating, and other symptoms of endometriosis.
Working with a functional nutritionist and/or endometriosis coach is part of a holistic treatment plan for endometriosis.
3. Nervous system support
The nervous system is the key to endometriosis healing that most people are missing.
When you have endo, your brain has encoded years of pain, medical gaslighting, and frustrations with your fertility as “danger” signals.
As a result, the brain can actually perpetuate symptoms of pelvic pain with endometriosis as a protective mechanism.
In addition, if your body is constantly responding to perceived or real “threats,” it leads to actual hormone dysruption which can cause increased PMS symptoms, pelvic pain, and fertility issues with endometriosis. (read more about this in the fertility section.
Common mistakes when treating endometriosis without surgery:
Having pelvic pain and endometriosis can feel hopeless - and trust me, as an endo warrior myself, I know how it feels impossible that you can ever really recover and begin to live your life again with endometriosis. I was totally in your shoes a few years ago .
I learned the hard way that surgery was not everything when it comes to endometriosis care.
In my own story, I felt so lost and alone. Even after finding a doctor that truly validated my pain and undergoing excision surgery, I still dealt with pelvic pain, severe bloating, inflammation, and fatigue. And it took a LONG time for my periods to be less painful.
I felt like I was left to figure it out on my own. I also felt misled that having surgery was going to be my golden ticket to healing; and while it did provide my body with an opportunity for deeper healing, I made some huge mistakes in how I handled my recovery process.
These are some mistakes I made initially based on common advice out there for people with endometriosis:
I hyperfocused on eliminating inflammatory foods like gluten and dairy - while this was extremely helpful in the short term, my gut health and bloating problems were still going crazy, which made me feel a fear of food and like I couldn't enjoy anything delicious ever again.
I didn’t focus on my nervous system health and reducing “threats” to my nervous system that were perpetuating my pain
I tracked every symptom so religiously that I was constantly overanalyzing everything and worried my endo had come back.
Whenever I had an undesirable symptom, I assumed it was because I had done something or ate something “wrong” or “bad”
It wasn’t until I identified some major missing pieces to my endometriosis recovery strategy that I was able to step into true healing.
What were those missing pieces? Here are the BEST ways to heal from endometriosis naturally.
Pelvic floor physical therapy to address chronic pelvic pain, abdominal restriction, and fascial tension due to scar tissue (this also helped to improve my nervous system health)
Working on my gut health and identifying a nutrition plan that worked for my body - WITHOUT eliminating every delicious food known to man
Supplementing where necessary with high quality
Detoxing my lifestyle with things like cleaner makeup, household products, and eliminating plastic food containers over time
Allowing it to take TIME - trusting that even a 1% change today will make a huge difference over time
These are the exact things I now work on with my pelvic PT and coaching clients in my endometriosis programs. I spent too much time having to figure it out for myself, and I want to change that for the 1 in 10 women out there who have this disease.
The GOOD NEWS IS - Many of the symptoms of endometriosis - even fertility - can be healed into remission with some targeted nervous system support, nutrition, pelvic floor work, and hormone health support. As a holistic endometriosis fertility coach and pelvic floor PT in New Orleans (and serving women virtually everywhere), I have seen TONS of women heal their bodies, live without constant pain, and start the families they always dreamed of.
My personal journey with endometriosis
A little bit of my story - (I wonder if sounds anything like yours…)
As an active, athletic female who loved to play sports for fun, rollerblade in the park, bike to the farmers’ market, and train for half marathons, I found myself in my mid-twenties struggling through 3 years of debilitating back pain that left me barely able to walk one mile, unrelenting pelvic pain that intensified with my menstrual cycle, and period cramps that put me in the fetal position for hours on end.
I started to feel like a shell of my former self - saying no to weddings of dear friends, skipping out on weekend hikes, and losing special times of connection with my husband because I couldn’t run with him anymore. That wasn’t me at ALL.
I had tried to “regulate” my hormones with birth control at the recommendation of multiple OBGYNs - which did NOT work - was finally diagnosed with endometriosis after being told my symptoms were “normal” by multiple doctors.
Even after undergoing excision surgery - which is currently the “gold standard” medical treatment for endo- I still dealt with pelvic pain, severe bloating, inflammation, and fatigue.
I felt like I was left out to dry figuring it out on my own. I also felt misled that having surgery was going to be my golden ticket to healing. And while it did provide my body with an opportunity for deeper healing, it wasn’t until I identified some major missing pieces to my endometriosis recovery strategy that I was able to step into true healing.
So if you’re feeling pretty hopeless on your endometriosis journey - know that I was too.
As someone struggling with chronic pain from endometriosis, I set out to learn all the secrets to truly healing my body.
And guess what? My body had the resources to heal all along. I needed to facilitate the healing my body was trying to do with the right providers to guide me and the right supportive measures to make sure my body felt super safe and strong enough to do that deep healing work.
Even though endometriosis is considered “uncurable,” I now consider myself healed - I say YES to everything I want to do, I schedule trips without fear, I exercise in ways that nourish my body and fulfill my craving for a physical challenge, I have a career I love and even a baby boy. I am physically AND emotionally stronger than ever before and I live my life pain-free, and I’m now a mama of two after struggling with fertility and miscarriages.
And I know that is possible for you, too, if your life is impacted by endometriosis too.
BTW Hi! I’m Dr. Jackie Roelofs, a pelvic floor physical therapist and certified women’s hormone health coach, and I help women like you with endometriosis and pelvic pain go FROM feeling betrayed by your body and held back by pain TO an active, joyful life full of connection to your body, your purpose, your partner, and your community.
Whether your desire is to train for a marathon again, travel the world with your hubby, or start a family, I hope you know that healing is SO possible for you. You can read more here about my Empowered Endometriosis and Pelvic Pain Coaching programs.
