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Belly Buttons by Clare Gregory

Advice to Medics once Diagnosed 

What advice would you give medical professionals during the management of your endometriosis and treatment? 

We asked 166 people diagnosed with endometriosis what advice they would give to medical professionals once they have been diagnosed with endometriosis and are under going treatment / seeking support.

Disclaimer: All comments below are the the individual thoughts and experiences from our survey respondents  

Don't give up on us

Stop giving up on patients when they tell you they cannot/do not want to take the pill. Investigate when the patient develops long term problems from the surgery instead of giving up on us. Do more research on why some people cannot tolerate excision surgery, and why does it bring the onset of other health issues to some. Treat us like human beings not just the first 6 weeks. But after too.

Treat with empathy

Have a little bit more empathy when dealing with patients who have endometriosis. We don’t ask to have it and we certainly don’t exaggerate our symptoms. Try and have a better and clearer understanding of the condition and think before you speak, most girls/women are vulnerable with this condition as it’s a hard condition to process. 

Work with patients

To work with their patient. Ask them what they want to do. These patients have done their own research, they know the meds and treatments that are available,  so ask them what meds they want to try. If they ask for surgery, give it to them. If they ask for a certain test, give it to them. No one is going to the doctor for fun, no one is trying to get billed for fun, they are there looking for help so they can live their life comfortably, so listen to what they need and work with them. 

Hormone panels

Hormone panels! And remember it's full body disease. If I had known that my migraines, painful bladder issues, and back pain were all part of the endo, I would've been able to change my lifestyle much sooner and probably could've had the third child we always wanted.

Educate on life with endo

I thought I was getting old! I said to my family/ friends that my brain wasn’t working properly about five years ago.  I hurt my back = getting older   It’s freaking ENDOMETRIOSIS!   I’m still trying to cope with this realization. wtf. Shortness of breath; chest pain and the pain in my right shoulder. It never ends 

Don't be bias

In the greatest deal of respect..... You probably know very little (even nothing) about endo. Refer to a specalist and if you have a patient with endo... READ UPDATE INFO / FOLLOW ENDO SPECALISTS ON SOCIAL MEDIA... learn. Stop gas lighting us with your lack of understanding and / or bias views. 

Long term management

I do carry the message about "we've done what can be done, you are now cured. If the symptoms reoccurre hormonal treatment should be your next solution" a lot. It doesn't make me feel safe, what if grows back heavily, have I lost the right for further examination then?

Holistic & medical coloration

I think we need a lot more funding. I also think we need more research done on holistic approaches for endometriosis, obviously as well as surgery. I know we can only do so much but something needs to give because we can’t keep living like this for the rest of our lives

Don't act as a specialist

I just wish medical professionals were better at recognizing whether they are actually skilled enough to be called an Endo specialists. I dealt with at least three doctors, surgeons and physical therapists who claimed expertise but were operating on basic misinformation.

Utilise MDT

Stop putting a bandaid on the symptoms and get to the root causes. Hormonal birth control isn’t the end all be all, and if your refuse to do blood work to see what exactly my hormones are doing, how do I know that the birth control isn’t making my endo symptoms worse or potentially causing side effects in other aspects of my body? You need to think about how diet, hormones, and exercise plays a role in this disease.

Rehabilitation after surgery 

After my last operation in Germany, I was sent to a rehabilitation centre where I was followed with physiotherapy, massages and instructed for three weeks on nutrition, physical and psychological therapies, how to create a daily routine; where I found other women with the same condition as me and where I felt I was not alone. This would be great if it were available to everyone

Endometriosis reoccurs 

Listening to patients .  Endometriosis is a chronic disease . No definite Treatment has been discovered till now .Surgery just controls the symptoms of the disease but it recurs .  It doesn't mean that you are bad surgeon .It is just the nature of the disease .  So, don't blame me for multiple surgeries and accept doing it .  Just treating me well is enough even if you don't have solutions for me . Don't throw me away because I still have pain.

Reassess treatment plans & involve MDT for full body management when planning

If a treatment isn’t working, change it.    Recognise that endometriosis is a full body condition that requires an experienced MDT to work together.     Understand and know that we hardly know anything endometriosis or how to treat.     Be honest with patients, tell them if you are not experienced enough to treat them. Explain to them the difference in excision and ablation surgery (even if can not offer excision) and what you can offer. Allow your patient to make the decision between the surgeries. Advise them to seek fertility advice if they wish to have a family, even if they are young.     Keep upto date with current research. Do not work of research which is 10/20/30 years old. 

50 years on

50 years on i now have a good consultant and a good gp who   do listen and respect and discuss what works for me

Acknowledge

Don’t force treatments patients aren’t benefitting from or comfortable with. Acknowledge complications caused by treatments. 

Streamline

Insurance hoops and hospital costs are preventing millions of people from getting treated. Please streamline a path to diagnosis.

Communication

Communication of all findings needs to be thorough to enable us to research our health independent of their care. 

Ask yourself

Refer patients to specialists instead of treating them because you can - just because you can doesn’t mean you should.

Planning

More information on how to manage daily not just given hormonal treatment / pain relief and surgery.  We need a plan on how to manage a diet, pain management, physio etc 

Enhance options

Endometriosis is a cureless, chronic and painful disease. You should think of long term side effects of treatments as well as life quality enhance options. 

Management

Suggest other ways to help manage living with the disease going forward such as, seeing a Pelvic floor therapist, emotional counselling

Link the pieces

It would be great to know more about the menopause and endometriosis or birth control and endometriosis, they are treated as separate issues but are interlinked.

Overall impact

Please discuss with us that this is a life long disease, and not a one and done surgery. We will have repercussions of this disease in every system of our body. 

Don't D/C

To make it easier to be referred back for further treatment/investigations and not having to wait 1-2 years to be seen for a consultation 

Physio

Pelvic physio is necessary for all pre and post op! Don't force birth control on people who have tried for decades after surgery.  

Help us

I only ask for help with pain management when I have tried everything at home and am unable to fall asleep at home

It's hard

Don't act like it's so simple. Just take birth control. Just have an annual surgery. Just give up any chance at fertility you have. 

Support

That there should be some support after stage four surgery. I was discharged there was no medical support

Not my fault

Help me treat the pain and don’t make me feel like I’m bringing it on myself by not taking hormonal drugs. 

It's not us

Not everyone gets cured after surgery, so please take the return of pain seriously instead of seeing it as a difficult patient 

Not a cure

To stop telling people to have babies or hysterectomies  That it isn’t just a pelvic condition 

Listen

To all the doctors who never believed me, get another job.  Listen to your patients instead of going by books

New research 

Find ways to help not only the body, come up with new ideas and suggest the best options 

Adapt treatment

Do your own research on the possible treatments for specific patients in the areas they have endometriosis: ie don’t suggest interuterine endometriosis treatments for someone struggling with it in their bowels. 

Listen

We know our bodies and what works or what doesn't so please listen if we say something makes us worse or if we find something that helps don't bash whatever it is unless it could be more harmful

Negligence

Not telling a person it is normal to be in pain 3 weeks out of the month because you're a woman.  It's not normal and it's unacceptable. This kind of negligence is what causes worst-case scenarios in the endometriosis world.    

Trust us

Respect someone's lived experience, trust that the patient knows their body, they have to live with it every single day and you only see them for 15-30 mins. 

Realistic

Be reassuring whilst also remaining realistic. We know there isn’t a cure but we need support from the people who have the power to literally save our lives. 

Treat us

Treat it like a real thing. My diagnosis happened during infertility treatment and getting pregnant was the focus. The endometriosis was never specifically addressed. 

Problematic

The suggestion of getting pregnant to stave off the endometriomal tissue growing for a time is really problematic. Having a baby should never be suggested as treatment.

No band-aids

LISTEN TO YOUR PATIENTS   Stop dismissing concerns, saying certain diagnosis are impossible. And stop relying on prescriptions as a band aid 

Stay up-to-date

Please stay up to date with medical research and knowledge of endometriosis. Patients should not have to fight so hard for accurate, reliable information. 

Pain relief

Toradol is not a narcotic. And even if it was, please don't act like I'm a drug addict for asking for it with a 25cm incision in my abdomen 

Wrecked

Yes the 20 minute appt with you is helpful, but my entire life is wrecked by this condition. Please try to plan some options that will help my day to day life, not just surgery in 1 yr plus, as i’m the one crippled and barely surviving for all that time period

Don't force

Stop forcing “treatments” on patients who feel uncomfortable taking them and actually give informed consent so patients can make the best choices for them. Also look at this condition as a whole body disease.

Options

Do your best to give the patient options and explain them the best you can. If you are giving options, please don't be afraid to say what you would try FIRST, whether it's based on price/accessibility or effects it can have on the body.

Open minded

Stop dismissing patients symptoms and pain, listen with compassion, be open minded, leave ego at the door, be willing to learn, and refer to others if your out of your league. Have patience and empathy for what I’ve already been through.

We know

We know our bodies and what works or what doesn't so please listen if we say something makes us worse or if we find something that helps don't bash whatever it is unless it could be more harmful

Learn

Learn enough about endometriosis so that we don’t have to educate them, 

Recovery

Recovery is different per person. Tell them to listen to their bodies and to not push it

Let us help

Continue to listen. Let us use our voice. Let us help teach you!

Communicate

Communicate. Ask them what has worked and not worked, and just LISTEN!

Stop lying

Listen when we say it's getting bad again and don't gas light or lie to us

Endo returns

Endo can still come back even if you are a great surgeon. I know my body best, 

Proper care

Give people who don’t want children to have proper medical care

Follow up

Follow up with patients, leaving them isolated with chronic pain is unacceptable

Pain logs

Have your patients keep video evidence and daily pain logs. Believe them.

Less pressure

More options, less pressure on the pill/hormonal birth control 

Treat us as ...

Just to listen and treat us as id we were your family. 

Educate yourself

Educate yourself on something that is so common

Guidelines

Guidelines on how to navigate this disease 

Refer out

Find good specialists to refer out and follow up

Stop acting

Stop acting like my hysterectomy cured me. 

Think before..

Stop discharging people so easily after surgery as it is not a cure.

Believe me

Believe a person and don't treat me like I don't know my own body 

Explain clearly

Training and listening then explaining clearly what’s happening 

Treat serious

It should be treated as seriously as any other long term condition. 

Check up

Check up on patients especially if they have started a new medication.

Believe

Listen to patients and believe them.

Assist us

Assist us with pain management 

Hope

Give us more hope and listen to us 

Keep researching

Let's keep researching to find out more! 

Listen

Listen to patient and do not dismiss that it back or spread

Advice us

Plenty of advice don’t rush giving out information make sure everything is explained before and after 

Empathetic

If you’re male. Please try and be empathetic. It’s boring crying after every appointment 

Be passionate

Be more passionate stop making us feel like we are crazy. Listen and fight with us. Not against us.

Annual check up

An annual check-up to track any relapses; and research for endometriosis symptoms management!

Follow ups

There should be follow on support after diagnosis. We should not have to keep fighting for our health.

No cures

Hormonal medication does not lessen/dry up endometriosis lesions.  Hysterectomy does not cure endometriosis. 

No quick fixes

That medications can only suppress symptoms and may not even do that for some patients. They’re a quick fix, not a long term solution.

Not fine

Please don’t tell me that I’m automatically fine because I’ve been diagnosed with endometriosis now

Shared decisions

Make shared decisions with patients. Do not force patients to do anything that they are uncomfortable with. 

Educate

Educate educate educate dr nezhat says it’s never the doctors fault they don’t know what they never learned 

Understanding

Be understanding and compassionate it costs nothing 

MDT support

More information and specialist MDT support

Don't Gaslight

To not gaslight and practice empathy.

Quick growth

To advise it can grow back and quick. 

Pain relief

Provide pain relief management. 

Clear plan

A clear plan of action

Empathy

Empathy

Educate

Educate yourself. 

Therapist

Refer to therapist

Unknown

To recent for this part

Problem solve

Do not gaslight, help problem solve by discussing the entire body not just their specialty 

Continue..

Please seek continuing education to stay up to date in your field. 

Tell us the truth

Tell us the truth on what has happened be straight up with us on what you found 

Give information

To be given information about endometriosis and what grade I am 

Genuine help

Believe me when I say something is wrong and offer genuine help 

Found my MDT

I don’t have any advise as my doctor listens and goes out of his way to do things for me. 

Don't know it

If you haven’t dealt with it or know it research it instead of being dismissive 

Listen

Listen to the patients. We know more than any research that’s ever been done. 

Nutritionist

Please refer patients for pelvic floor physical therapy + nutrition consultants.

Follow up

Follow up with me every once in awhile, do checkup appointments 

Be better

I don’t know - I suffered a lot of BS and shitty people 

Read notes

Read up your notes before passing comments 

Do something

Do something, don’t just leave us to rot

Empathetic

Be more empathetic when giving medical news 

Always believe

Always listen and believe the patient 

Education

Educate yourself! Stop recommending hormone therapies!

No cure

Surgery is not a cure, we need more tools after surgery. 

Be patient

Be patient compassionate most of the pain is very intermediate

Endo regrows

It's possible not all endo was excised and that it may regrow.

Don't fob off

Same listen to people don't gaslight minimise or fob people off 

More training

More medical training and experience and understanding of the pain that comes with it.

Better solutions

Come up with better pain management solutions that don’t involve taking 3+ pills per day

No the difference

Educate yourself on current treatment options and learn the difference between each of them. 

Educate yourself

Please educate yourself on the diagnosis. I shouldn’t as a patient have to educate my own providers on my disease. 

Forward ..

Explain about the condition to the patient and offer management strategies and support going forward 

Informative

Be informative about holistic options

Give all options

don’t offer lupron instead of surgery 

Read updated ..

READ THE MOST UP TO DATE RESEARCH

Limitations 

Understand that the surgery doesn’t always fix the pain. 

Learn up dates

Learn the latest research on endometriosis 

Stop dismissing

Stop dismissing women’s pain 

Don't lie

Don’t tell us it’s curable as it’s not 

Don't push

Don’t push lupron or orilissa

Compassion

Be compassionate and humble. 

Self-reflect

You may not be the right surgeon 

Empathy

Empathy & education 

Kindness

Be kind 

Treatment

Better treatment

Excision

Prioritize excision

Don't dismiss

Please don’t dismiss me

Imagine the pain that we have

Imagine the pain we are in happening to you, or your loved ones. Imagine being in so much and yet being disbelieved by those who are there to help us or tell us “well I could help but all I’ll be doing is getting you out of pain. Like it’s something that doesn’t matter! 
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