The diagnosis timeline.
We’ve personally met a few endometriosis patients who had a completely reversed timeline, but the following is the usual path for endo patients, which could stretch on average of 10 years (!).
We’ve added a bunch of information and tips for each part of the journey, and we hope you’ll claim some quality of life back with every one of them, regardless of where you currently are in the process.
Noticing
symptoms
symptoms
What does it feel like?
Pain. Lots of it, usually.
Endometriosis is one of the most painful chronic conditions.
Besides painful periods, endometriosis usually causes extreme fatigue, IBS symptoms that increase around the period and/or ovulation, abdominal pain, back pain, shoulder pain, pain in the legs (knees especially) & pelvis that’s increasing around period and/or ovulation, and pain during / after intercourse.
Some cases reported of endometriosis diagnosis during other laparoscopic procedures with no prior pain indicators.
Get to know all symptomsEndometriosis is one of the most painful chronic conditions.
Besides painful periods, endometriosis usually causes extreme fatigue, IBS symptoms that increase around the period and/or ovulation, abdominal pain, back pain, shoulder pain, pain in the legs (knees especially) & pelvis that’s increasing around period and/or ovulation, and pain during / after intercourse.
Some cases reported of endometriosis diagnosis during other laparoscopic procedures with no prior pain indicators.
Trying to
understand
understand
The taboo around menstrual cycles, intercourse, and bowel movements - leaves most patients alone with their pain and fear for awhile.
It takes time, sometimes years, to realize something is seriously wrong.
If you're in this position, let this be your wake up call. It is not in your head. You're not "just very sensitive".
You’ve probably read a few definitions for endometriosis (“endo”) by now.
In short: cells similar to the endometrial lining are found growing elsewhere in the body, and/or adhesions are formed internally, in some cases limiting organs’ movement and functionality.
The cause of endo is still unknown.
There are many theories out there, but none of them is complete yet to make a final determination. However enough research was conducted to determine that genetics play a big part, and that the common "retrograded menstruation" theory cannot be the only cause as endo was found in fetuses, and sometimes continues to grow past menopause.
Most recent studies suggest DNA has the answer to what's causing endometriosis.
It takes time, sometimes years, to realize something is seriously wrong.
If you're in this position, let this be your wake up call. It is not in your head. You're not "just very sensitive".
You’ve probably read a few definitions for endometriosis (“endo”) by now.
In short: cells similar to the endometrial lining are found growing elsewhere in the body, and/or adhesions are formed internally, in some cases limiting organs’ movement and functionality.
The cause of endo is still unknown.
There are many theories out there, but none of them is complete yet to make a final determination. However enough research was conducted to determine that genetics play a big part, and that the common "retrograded menstruation" theory cannot be the only cause as endo was found in fetuses, and sometimes continues to grow past menopause.
Most recent studies suggest DNA has the answer to what's causing endometriosis.
Seeking help
Your first step might have been a few years ago, reaching out to your GP, family doctor, or OB/GYN.
While endometriosis awareness is finally on the rise thanks to the hard work of large organizations and patients around the world, many doctors are still struggling to recognize and name endometriosis symptoms.
Approximately 90% of endometriosis patients experience medical gaslighting while seeking help for their debilitating symptoms.
Don’t let this break your spirit!
Your pain is real.
It's NOT in your head.
It has a name.
Keep advocating for yourself!!
How to not get hurt in the processWhile endometriosis awareness is finally on the rise thanks to the hard work of large organizations and patients around the world, many doctors are still struggling to recognize and name endometriosis symptoms.
Approximately 90% of endometriosis patients experience medical gaslighting while seeking help for their debilitating symptoms.
Don’t let this break your spirit!
Your pain is real.
It's NOT in your head.
It has a name.
Keep advocating for yourself!!
Meeting with an
excision specialist
excision specialist
Getting to an endo specialist should be your primary goal while seeking diagnosis. Just like patients with heart issues seek a cardiologist, and patients with ear problems will go to the ENT specialist for targeted help.
While many doctors still see endometriosis as a gynecological issue, it is important to remember endometriosis is a whole-body disease.
As such, ob/gyns would likely be one of your first steps on your way to diagnosis, but they shouldn’t be your last.
And definitely not your first choice for surgery.
Find an excision specialist near youWhile many doctors still see endometriosis as a gynecological issue, it is important to remember endometriosis is a whole-body disease.
As such, ob/gyns would likely be one of your first steps on your way to diagnosis, but they shouldn’t be your last.
And definitely not your first choice for surgery.
Building your
care team
care team
Finding an excision specialist is the first step when designing your care team. While surgeons can help us when push comes to shove and there’s no solution but surgery, excision specialists are the go-to.
But since endometriosis is a chronic condition and surgery is not a magic fix, most of us require ongoing care that surgeons are not able to provide.
You should find:
But since endometriosis is a chronic condition and surgery is not a magic fix, most of us require ongoing care that surgeons are not able to provide.
You should find:
- A pelvic pain specialist to help with ongoing pelvic pain.
- A pelvic floor therapist to work with you on relaxing your pelvic floor muscles (you’ll be surprised how tense they are!)
- An endo-friendly ob/gyn (Knows about endo and know their imitations and when to refer you further)
- A knowledgeable GP / family doctor who’s strong on listening and attentive to complaints.
- Possibly a GI / urologist if your endo is causing severe GI/bladder issues.
Medical
intervention
strategy
intervention
strategy
The ultimate “solution” currently offered for endometriosis is excision surgery, though new research suggests that surgery could cause worsening symptoms in some cases.
It is important to know that you can get an almost-definitive diagnosis (and other treatment!) when going to an excision specialist.
A good specialist will also know when it’s NOT the time for surgery, and it is as important as going in for one…
There are many avenues to try if you’re looking to delay surgery a bit and see if you can balance things without such invasive intervention.
It is important to know that you can get an almost-definitive diagnosis (and other treatment!) when going to an excision specialist.
A good specialist will also know when it’s NOT the time for surgery, and it is as important as going in for one…
There are many avenues to try if you’re looking to delay surgery a bit and see if you can balance things without such invasive intervention.
- Birth Control
While it's a personal journey to find your own “match”, many patients report a significant decrease (or disappearance) of symptoms after consecutive use, usually skipping periods completely for a while. - Pelvic floor therapy
Many endo symptoms increase or get worse due to a super tense pelvic floor.
In therapy, unlike any other workout - you’ll learn to “let go”.
Instead of feeling your muscles working, you’ll learn how to relax them and finally get relief. - Diet changes
Endometriosis is a whole-body inflammatory disease.
This means inflammatory foods are sometimes like pouring oil into the fire, and an anti-inflammatory diet is highly recommended to decrease symptoms and improve quality of life. - Acupuncture and other alternative medicine
There are many methods to balancing hormones and re-calibrating tension in the body.
From acupuncture to yoga, aqua therapy, and Sobada massage, there are many ways to try and help yourself at home or with a professional, before surgical interventions.
Adjusting to
the new you
the new you
Whether you’ve had surgery to confirm the diagnosis, or you’re still in the process - your life is not the same anymore… And it doesn’t matter if you’re the “lucky” one with “only” a few days of excruciating pain, or you’re one of those suffering every day.
We’ve been there.
It’s life-changing in ways people cannot understand.
We have to re-learn who we are, what our limits are, what we can tolerate and what’s no longer a go. Many times, it is a devastating process where we have to part ways with lifelong habits and activities we can no longer do.
Take time to grieve. That’s OK.
Yes, life will probably not be the same anymore, and it’s OK to be sad about it and miss your old self.
It is also super important to remember you haven’t done anything wrong, and that you deserve to take time off, adjust, and shift priorities.
Don’t beat yourself up for not continuing to be your old self - because in many cases this IS truly the best your body can do.
We’ve been there.
It’s life-changing in ways people cannot understand.
We have to re-learn who we are, what our limits are, what we can tolerate and what’s no longer a go. Many times, it is a devastating process where we have to part ways with lifelong habits and activities we can no longer do.
Take time to grieve. That’s OK.
Yes, life will probably not be the same anymore, and it’s OK to be sad about it and miss your old self.
It is also super important to remember you haven’t done anything wrong, and that you deserve to take time off, adjust, and shift priorities.
Don’t beat yourself up for not continuing to be your old self - because in many cases this IS truly the best your body can do.
