top of page
.png)
Belly Buttons by Clare Gregory
Next generation advise
What advise would you give to the next generation of people living with endometriosis?
We asked 166 people diagnosed with endometriosis what advise they would give to the next generation of people who have endometriosis.
Disclaimer: The following comments are the individual thoughts and opinions from 166 survey participants who have endometriosis.
Document
Ask for what you need. If they won't check for endo or do the tests you request, make them write that down in your chart. Dont be afraid to let that doctor know you are well versed in your illness.
Listen to your body
If something feels wrong it most likely is listen to your body. Even if others won’t listen to you keep pushing until you find someone who will! We know our bodies better than anyone else. We know what’s normal and abnormal for us!
Engage in community
Go online - you will get more information and community from Facebook groups and social media accounts. then from anywhere else. And you will need to do a decent amount of research in order to be able to seek proper treatment and advocate for yourself.
Reach out
Reach out to the other people who have endo in your community through facebook etc. They know more than most drs, can empathise and know more than anyone what you are going through. They will make you feel as if you are not alone
Speak up
Always advocate for yourself. Fight for your body and never let anybody tell you otherwise. It is your body and the only person who knows your body better than anybody is YOU. Don’t be afraid to speak up if something isn’t right.
Change doctors
Fight for yourself. Change doctors if you don’t feel one is listening to you. Always go with your gut. Doctors are not all knowing and many times will give you false information than admitting they need to do research
Endo specialist
This isn’t one piece but this is the advice I would give: Obtain as much information as possible from charities such as endo UK Find a support group as they have valuable knowledge and can help. They are also an amazing support. Make sure you find an endo specialist and not just a regular gynae. Diet helps find what works for you.
Don't give up
Don’t give up. It might not get better but once you find a doctor willing to work with you keep them. When I finally found a doctor who believed me, he said, “it’s not pcos. I’d bet my whole career that it’s endometriosis. You need to find a doctor who can do the surgery, but it’s not me. I wouldn’t know what I’m looking at.” - that was the most honesty I ever got out of a doctor.
Compassion for self
Opioid/acetaminophen combo med, ibuprofen. Every 6 hours. TENS unit on belly and thighs. Ask for that MRI. Make sure you actually are prepared for potential complications if you go for surgery. Get it diagnosed as early as possible so it doesn’t get to the point of being such an extreme surgery even. Have compassion for yourself. Use mobility aids.
Listen to intuition
I would say don't always listen to the doctors go with your intuition because you know your body better than they do if something doesn't sound right always get a second opinion and definitely do not get a hysterectomy because it is not a cure for endometriosis
Don't stop at GP
Don’t just stop when gp advises it’s just a bad period. Girls in my jobs have no pain at all on periods and if the pain is crippling you and stopping your daily life that’s not normal. Push for gyne, preferably one that deals with endo patients
Get treatment
You might think your symptoms aren't a problem and that this is just life - especially if the other women in your family had similar symptoms. Just because the pain might be normal for you doesn't mean you can't get treatment
Body positivity
From my own personal experience, I would tell the next generation to listen to your body and not to see it as an enemy despite all the pain and suffering. Your body is letting you know something is wrong and despite what the doctors say, you are not crazy. Build a good relationship with your body from a point of care and don’t see your uterus or periods as the enemy. Women are taught to see their bodies in a very negative sense and it creates a disconnect. The best way to try to navigate this is to build that connection back with your body and do whatever you must to advocate for yourself and the body you’re in.
Don't be brushed off
Don't suffer in silence, don't be discouraged by bring "brushed off". I had no idea that my symptoms and experience were not "normal" until a recently graduated Doctor mentioned endometriosis possibility - I hadn't complained or pushed ahead as I felt I must be mad or a weakling! Hopefully this is a sign of improving education and understanding of medical students. I owe that young doctor so much for being tuned into symptoms and viewing me holistically (I'd been sent to A&E due to unresolving kidney symptoms but he asked about digestion, bowel habits, periods, fertility, etc).
Symptom diary
SYMPTOM DIARY.... keep it daily, write everything down , keep going back, if you think you have endo demand that you see a Endo specialist, If you feel you are being misdiagnosed / fobbed off with 'anxiety' or 'IBS' ask for a second opinion... If your symptoms have not improved following treatment / medication return with your symptom diary. If you can afford to do so pay for excision surgery with a endo specialists who works with a Endo MDT team.
Challenge doctors
Always advocate yourself and NEVER be afraid to challenge a doctor or any other medical professional. You know your body better than ANYONE. There are resources out there to help find the proper care, but it’s not going to be your local OB/GYN
Get recommendations
Keep complaining. If one doctor, doesn't listen, find a new one that will. Join these online support groups. Talk to other people that understand your pain. Ask them for doctor suggestions in your area.
You're not crazy
You’re not crazy. Your pain is real. Keep fighting and seeking help until your find it. Your body is not against you—it’s letting you know that something is not right. Your body will be so glad you didn’t give up searching for help.
Endo doesn't define you
Never, ever doubt your body! Seek help and information till you feel at ease. You are your greatest health advocate and nobody knows better than you, what your life can and should be like. Endometriosis sets the conditions you are attached to, but it never ever defines you.
Don't blindly agree
Even with the best support system and access to unlimited fiscal means it is as isolating, scary, and real as it feels and you don’t have to be grateful for lowering your expectations on what your body does and how medical professionals speak to you. Don’t blindly say yes out of desperation to anything and everything. Call dr nezhat he keeps his promises and I believe you and am rooting for you
Find your voice
Find your voice through research and talking to others in support groups and then advocate for yourself like you life depended on it because it does. Interview doctors for your care team, NOT the other way around. Don’t let healthcare workers make you feel like less than or weak or unworthy.
IVF no mater your age... a back up is better than last resort
If you want a family in the future do ivf (no mater how young or how high your AMH is). It is best that IVF is a back up rather than a life line. Do a round of egg freezing and a round of embryos with a sperm bank. This way you have taken control of your future and if you do not fall pregnant when you are trying and ready to do so… hopefully your fertility preservation will give you your family. IVF isn’t simple…. Chances are you will endure 5+ rounds until you have a successful pregnancy. If you think you have endometriosis ask to be referred straight to a endo specialist, pay for a endo specialist if you have to. Do not suffer in silence. Endo is a life long condition with no cure, it will be challenging, it will change your path and take away your dreams, people will not understand, you will have to fight for treatment, but you will find away to manage, you will have good days, you will find your path and you will learn new skills and find a strength you never knew you had. We live in hope that one day… one day the next generation will get a easer path than ours, that they will get better treatment than us, that their will be a cure.
Heating pad
Keep your heating pad within reach ALWAYS, & advocate for yourself, don't stop until your satisfied
Fight for health
Speak up Fight for your health & shout if you are heard & helped don’t just let them dismiss you
Stay strong
Stay strong. I know it’s hard but we will get through this. There will be a cure one day for this horrible disease
Get a journal
Trust yourself and use your voice. Get a journal, maybe part of you not all of you by Jenneh R.
Second opionion
Get second opinions , if one Dr. dismisses you find one that will listen to you about your symptoms .
Don't be gaslit
be your own advocate, don't settle for being gaslit
Advocate
Advocate advocate advocate!!!
Don't take no
Don't take no for an answer
Instincts
Never give up and always trust your instincts
Fight
Fight. Because your life depends on it
Correlation
The level of pain doesn't always correlate to the severity of endometriosis.
Demand
Speak up, demand that you are listened too and never let anyone gaslight you
Advocate
You must advocate for yourself. Nobody else is going to do it for you.
Don't give up
Don't give up. We need you to make people care enough to find a cure.
Go back
You’re not alone, and keep going back to your doctor until you get answers
Believe yourself
Speak up and believe in yourself. You are the expert on your own body.
Diary
Keep a diary ,note everything flare ups ,pain management diet
Find answers
Don’t stay silence. Use your voice and continue to find your answer.
Educate yourself
Believe in yourself. Educate yourself. Ask patients for advice
Push
Advocate for yourself because the medics won’t help unless pushed
Say stop
Breath! Get a good heating pad! It’s okay to tell others to please stop, if you’re getting overwhelmed :)
Your gut
Advocate for yourself, although I hope there is change by then but always listen to your own gut/intuition.
Know your body
Fight for your voice to be heard. Only you knows your own body and when something dosen't feel right
Raise awareness
Keep raising awareness. We will get better treatments if more funding is given to endometriosis research.
Bring a friend
Advocate for yourself and bring a family member or friend they seem to care more if you are not alone.
Loud
BE LOUD
Diagnosis
Quicker diagnosis
Fight
Don’t give up fighting
Hope
There is hope
Research
Research everything you can
Trust yourself
Do not give up. Keep pushing for answers. Trust yourself and your body.
Don't feel guilty
Do not feel guilty towards yourself, this is not a self-imposed condition.
Not imagining
That you're not imagining the pain and pursue safe diagnosis
You know
You know your body best. Don’t let anyone tell you different.
Don't give in
Don’t give in and have hope, things are slowly changing
You're valid
Keep learning and advocating for yourself, and trust yourself and your body because your pain and experiences are valid.
Pain is real
It is not in your head. Your pain is real, but there is hope. Find a true specialist who understands this disease.
Don't accept
No matter how many tests come back 'normal' keep pushing for answers. You don't have to accept a life of pain.
You're not alone
Don’t let it swallow you up. All is not lost. There are so many people in the same boat. You are not alone
See GP
That if your period pain is severely painful and keeping you from school or work then see your GP without hesitation.
Talk
Talk, go see a doctor and make them listen
It gets better
Don’t lose hope. It does get better.
Advocate
Advocate for yourself - Don’t give up
Push harder
Push harder and educate yourself
Fight
Keep fighting, believe in yourself
Be informed
Be informed before your appointments, write your questions as you will forget
Scream
Fight. Scream and make sure you take note of all possible symptoms. Track everything.
Keep going
Don't give up, do research and keep going to the Dr's. If you can afford it go private
Research
Do your own research, find fellow endometriosis patients online, fight for yourself
Demand better
Demand better care and support. Also for better advancements in diagnostic tools
Find a doctor
Don’t keep quiet, find a doctor that believes you.
Specialist
See a specialist if you can if not insist on surgery
Natural remedies
Advocate for yourself. Put a focus on natural remedies.
See evidence
Keep pushing until you see the evidence
You know
Keep fighting. You know what is going on in your own body.
Not alone
You are not alone.
You're valid
You, your pain and feelings are valid.
Hope
There's hope
Holistic
Consider going holistic
Belived
I believe you,
Be heard
Advocate for yourself and fight for your health because no one else will. If you aren't being heard find another doctor even if it takes going through 10 doctors to be understood and cared for.
Pay attention
Pay attention to your body. Pain should not be considered normal. Advocate fiercely for the care you require and persevere through the toughest days.
Don't put up
don't put up with doctors who don't listen change doctor get second opinions research so that you know what is out there that would work for you
1
Advocate for yourself! Keep trying! keep switching doctors if you have to keep pressuring them because your pain is valid and we hear you. I hope it gets easier for you
Don't settle
Do not settle for being in pain all month long. Push for testing. Fire your doctors if they won't work with you to find out why you're in pain. Be your biggest advocate and use your voice.
Making mistakes
Your pain is valid and that validation doesn't depend on affirmation by someone with a medical degree. Doctors make mistakes too.
Persist
Fight to be heard. Don't be dismissed if you think something is wrong. Listen to your body and persist until you get the help and diagnosis.
GPs are wrong
Don’t ever give up, the GPs are always wrong, don’t ever deal with Nurse Practitioners, just refuse. Don’t let them tell you it’s period pains!!!
Don't believe
If what you are told doesn't sound right so your own research and educating and advocate for yourself don't believe everything you are told
Track symptoms
Track symptoms, stay on top of specialist input- when will I hear from you, what’s the next step, what symptoms should I tell you about urgently
It's awful
Believe in yourself and your symptoms- you’re not making this up or exaggerating how awful it is.
Live painfree
You deserve to live without pain and there is a community out there who can help you.
ASAP
Listen to your body, if it doesn’t feel right push to see a gynaecologist as soon as you can
Not normal
Painful heavy periods are not normal and don’t feel pressured into grinning and bearing it!
Badass
Bring a badass friend with you to the doctor office and DEMAND to be taken seriously!
Tens
Tens!!! Helpful but without much side effect
Don't suffer
Don’t suffer in silence, make sure you’re heard.
Stay strong
Stay strong & keep advocating for yourself
Whole body
Look at your health as a whole body.
Body doesn't lie
Listen to your body it never lies
Tell your doctor
Advocate for yourself research and tell your doctor what you want
Stand up
Stand up for yourself, don’t let ANYONE tell you, how YOU are feeling.
Join groups
Join groups, Instagram, look for other Endo warriors! Do your own research!
Live pain-free
Don’t ever stop advocating for yourself. You aren’t supposed to live in pain.
You owe yourself
Never stop fighting for yourself. It’ll get hard but you owe it to yourself.
Talk
Talk about your period! If you don't know how other periods are you don't know what's normal and not
Someone listens
You know your own body better than anyone. Keep pushing for answers until someone listens.
Fertility tests
Get your fertility tested in your early 20s even if you aren’t interested in having kids at that age
Equal access
It’s not wrong to have no desire to have biological children! People deserve equal access to health care
Don't be quiet
Don’t be quiet about symptoms, trust your body when you feel it isn’t normal. Your body isn’t lying to you.
Fight hard
Fight and fight hard
Stand
STAND YOUR GROUND.
Shout loud
Shout loud to be heard
Early treatment
Get it treated early
Not alone
you're not alone
Endo advocate
Fight until you're heard amd find an endo advocate to help.
Do research
Do your research and go into appointments fully educated
Squeaky wheel
Be a squeaky wheel; keep pushing for a diagnosis
Management
It’s hard but there are ways of pain management
Keep pushing
What my therapist told me- lady keep pushing
Deserve care
It's going to be exhausting but don't stop advocating for yourself. Your pain is real and deserved to be cared for.
Don't leave
Advocate for yourself! Don’t leave that hospital appointment until you get an agreement for a laparoscopy. You deserve to be heard!
Running helps
This is why we need universal healthcare because no one should be suffering with so much pain, running helps
Providing care
If a doctor dismisses your pain, try to keep seeing more until one is willing to provide care and figure out what is wrong.
Connected
Fight hard, advocate for yourself. Research and listen to your body. You are the only thing connected to it,no one else.
Fight
Fight, fight and fight some more. You are your best advocate until something in system changes. Have your friends, family and the community to support you also!
Walk away
Stand your ground for what you believe. It is not in your head and if you hear that off a Medical Professional then walk away and get a second opinion.
Excision surgery
Excision surgery by an endometriosis specialist surgeon doing it exclusively with a team is the best way and standard to treat endometriosis.
Keep going
Keep getting second and third and fourth opinions until you feel listened to. Also do your own research to know who is a reputable doctor and knows how to treat endo.
Ask for help
If you want help, you have to ask for it. Don’t assume any doctor knows what you’re going through. You will have to fight for any medical care you need.
You're not weak
Chronic period pain is not normal. Do not struggle to conceal your pain. Speaking about your menstrual pain is not a sign of weakness.
Ask questions
Please ask questions to others, don't shell up and not believe in yourself. Your pain is speaking to you and there are answers. You are not alone.
You're not alone
You’re not alone. We are here for you. You can find thousands of us on social media. And don’t give up!!! Keep advocating for yourself.
Excision
Go to an excision surgeon first. Never stop advocating until there’s awareness, a cure and proper treatment of symptoms
Take care
Find a good physiotherapist and specialist early on. Eat well, take good care of your body and mental health.
Get transferred
If your GP doesn’t believe you, ask for a transfer to see a gynaecologist
Don't give up
Don't give up. You know your body!
Don't stop
Don’t stop your fight! Someone doesn’t listen move on!
You're not alone
Your pain is valid but remember you aren’t alone
Don't give up
Don't give up! Keep fighting and educating yourselves!
You're strong
You are true warriors . Don't ever blame yourself on anything.You are very strong .You know your body well . "people with the condition are the true experts of the condition "
File grievances
Advocate for yourself! If you have to file grievances against doctors and insurance, do it! Do not stop fighting until you find a dr who will believe you and treat you well.
You're important
You are not alone. You are not crazy. We believe you and we are here for you. Do not stop fighting for your own health, you are important and deserve to be listened to.
Keep searching
Don't be afraid to advocate for yourself. Only you know your body and don't settle or give up when searching for answers. You're not alone.
Take time
Don’t give up seeking answers. You can always get a second opinion if you feel dismissed. Not all doctors are great doctors unfortunately and it takes some time to find those who are.
Trust yourself
Know your body and trust what it is telling you. Don’t let medical professionals gas light you.
Don't be afraid
Don't be afraid to speak up for yourself. If your doctor doesn't believe you find one who will!
Ask for tests
Find a specialist. If you can't afford one or get to one, ask your endo community for a list of tests that they recommend and have your doctor perform them - hormone panels, blood tests, etc.
Be pushy
Advocate for yourself, don’t be afraid to be pushy, don’t accept living in pain
Mental wellbeing
Make sure to have a mental health specialist with you. This disease can really affect mental health.
You are not crazy
You are not crazy, but what you are feeling in your body is not normal. If your doctor doesn't believe you or continuously dismisses you, find a new doctor! Don't waste your time and mental health with the frustration of someone who doesn't take you seriously.
bottom of page