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The Lived Experiences of Endometriosis:
The Survey Results 2024
We designed a survey to accurately reflect the lived experiences of people living with endometriosis, to address the limitations of existing research, and societal beliefs of endometriosis.
171 individuals participated in our survey, ‘The lived experiences of endometriosis’. Unfortunately, 5 individuals had to be excluded as they were awaiting a diagnosis.
Our survey was conducted on Survey Monkey from December 24 to May 25, where we reached out to members of the endometriosis community through social media and on our website. Each closed question enabled all participants to share additional comments freely via a comment box, avoiding limitations from a pre-set dropdown menu and potential biases from Project 514 415. We encouraged participants to have their say by including open ended questions.
We have showcased the data using various methods, including charts, direct quotes from participants, word clouds, and statistical measures like mean, median, and mode whenever applicable.
Age when endometriosis symptoms started
Individuals partaking in our survey experienced their first onset of endometriosis symptoms between the ages of 8 to 38, with an median age of 23 years (2% of the participants).
Our survey reports that the majority of people experienced endometriosis symptoms at the age of 12 (16% of participants), with the average age being 15 years (15% of the participants).
Severe Symptoms - 36, Significant Symptoms - Early 30s, Possible Symptoms - 17”
From 12 but the pain didn't properly start until I was 21
16 but it got worse after having my daughter at 22
My symptoms really started to show up at 15.
Can't remember exactly but in my teens.
Age when endometriosis was diagnosed
Individuals partaking in our survey received their endometriosis diagnosis between the ages of 11 to 47, with an median age of 29 years (2% of the participants).
Our survey reports that the majority of people were diagnosed with endometriosis at the age of 26 (8% of participants), with the average age being 28 years (5% of the participants).
Length of time until diagnosed with endometriosis
Individuals partaking in our survey waited between 1- 33 years to receive their endometriosis diagnosis, with a median wait of 15.5 years (5% of the participants waited 15 years, and 5% of the participants waited 16 years).
Our questionnaire reports that the majority of people were diagnosed with endometriosis in 8 years (8% of participants), with the average length of time being 13 years (4% of the participants).
GP visits regarding endometriosis symptoms prior to diagnosis
Participants in our survey reported seeking medical help for their endometriosis symptoms from their general practitioner between 1 and 100+ times before receiving a diagnosis for endometriosis.
We couldn't calculate the Median, Average, or Mode based on the data provided.
I was raped by a doctor during my pelvic exam the first time I tried getting diagnosed
Cannot possibly count, I said something wasn’t right for 22 years
Every doctor visit from age 16-27
I I didn't really go to them after I was told it was normal pain.
At least once every couple months was treated like it's all in your head
I can’t even recall, by the time I was 14/15 I had asked my GP for prescription pain medication to cope with the pain ... I was eventually on opiates for the pain...Over 20+ years...
I went multiple times a year with various symptoms for thirteen years.
Too many to even count at this point, and I was always dismissed until I found my current doctor. She is a true angel, and I have made sure to tell her!.
from the age 11 - 32 zero
help or compassion
A&E (ER) visits prior to an endometriosis diagnosis
Participants in our survey reported seeking medical help for their endometriosis symptoms from their A&E (ER) between 0 and 100+ times before receiving a diagnosis for endometriosis.
We couldn't calculate the Median, Average, or Mode based on the data provided.
Too many to count (over 16 years).
Countless, over 27 years
None due to cost and lack of understanding
A handful of times. I tried not to go unless I really had to.
Never I was too embarrassed it was humiliating
None, as I tend to gaslight myself since I work in the medical field. I always see so much worse, and always tell myself if I can be here working, it must not be that bad. 😞
None, didn't know it was an option. I just cried and suffered at home.
Once because I don’t like going to doctors because of the amount of times I was dismissed, I usually just suffer at home because if not it involves sitting in emergency for hours just to be wrote a prescription
At least 5 times, with dehydration from severe pain and terrible vomiting/nausea.
Gynae visits regarding endometriosis symptoms prior to diagnosis
Participants in our survey reported seeking medical help for their endometriosis symptoms from a general gynaecologist between 0 and 30+ times before receiving a diagnosis for endometriosis.
We couldn't calculate the Median, Average, or Mode based on the data provided.
Not sure how many, but it was a lot. Since ultrasound and pelvic exams found nothing, I was always "fine".
Once a year for yearly check-ups. Ignored each time and just told to go on Birth Control.
Too many and many different gynaecologist
Way too many to count. I really had to advocate for myself went through numerous until one listened to me.
20+ times… I ran out of doctors to see in my hometown.
BSGE gynae or endo specialist visits regarding endometriosis symptoms prior to diagnosis
Participants in our survey reported seeking medical help for their endometriosis symptoms from an endometriosis specialist between 0 and 9+ times before receiving an diagnosis for endometriosis, with an median of 1 visit until diagnosed with endometriosis when seeing an endo specialist (34% of the participants).
Our survey findings indicate that the majority of individuals (34% of participants) were diagnosed by an endo specialist during their initial consultation. Regrettably, 42% of participants never had the opportunity to consult with an endo specialist before their diagnosis.
he wasn’t very helpful & was very rude he did not diagnose me
I've never seen one
i saw 9 specialist before getting my diagnosis
I saw them as a 2nd opinion after I was diagnosed with stage 4 endometriosis
I wasn't able to see a specialist until two years after my hysterectomy.
Endometriosis symptoms prior to diagnosis
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Participants shared the symptoms they encountered before diagnosis.
The reported symptoms under "Other": Bloating, Infertility/Miscarriage, Prolonged Menstrual Bleeding, Fatigue, Chronic Pain, Neurological Symptoms, Interstitial Cystitis (IC), Urinary Tract Infections (UTIs), Shortness of Breath (SOB), Migraines, Diarrhea, Anemia, Brain Fog, Numbness, and Shooting Pains.
Participants in our survey reported experiencing between 1 and 25 symptoms prior to diagnosis, with a median of 12.5 symptoms (12 symptoms = 7%, and 13 symptoms = 2% of participants).
Our survey reports that the majority of people experienced 7 endometriosis symptoms prior to diagnosis (10% of participants), with the average amount of symptoms being 12 symptoms (7% of the participants).
Endometriosis symptoms misdiagnosed with another medical condition
In our survey, respondents shared receiving 0 to 10 misdiagnoses while dealing with their endometriosis symptoms:
31% were misdiagnosed with IBS
28% were incorrectly diagnosed with a mental health condition
6% were informed that they simply had a cyst.
Unfortunately, we were unable to determine the Median, Mean, or Mode from the available data.
I had a hysterectomy for unexplained dysmenorrhea at age 37. I asked about endometriosis beforehand but further diagnosis was not explored prior to surgery. Even after that surgery, there was no real explanation for my pain ... I wasn't diagnosed with endo a year later.
I felt like a lab rat for many years. My family doctor didn’t so much tell me exactly what I had but she kept tossing medication after medication after to me for years'
Anorexia...driven due to struggling to eat ... I would eat gluten & feel bloated, sick, fatigued, & get stomach cramps.... my periods stop due to not eating, my symptoms went, I felt healthier, I wasn't struggling in pain.
I was given a diagnosis of bipolar disorder due to the cyclical aspect of my pain, which was affecting my mood and emotions in a way I was unable to see.
Anxiety or PTSD related pain, basically told it was because of past trauma
PIDS, UTI’s, constipation, GI issues….. My favourite - it’s normal
IBS, Gall Blatter Stones, Kidney Stones, Hiatal Hernia, Haemangioma on the liver and “it’s all in your head
IC, fibromyalgia, somatic symptom disorder, narcissism (because i was “obsessed with myself for looking so far into a diagnosis
Early menopause Tight vagina (needed opening more!!) Just period problems
Severe medical anxiety which was causing me to be a hypochondriac
Yes for year they tried to tell me it was IBS and fibromyalgia
IBS and Period Asthma
Anxiety Depression Rumbling appendix “A tiny cyst that has zero effect on pain or symptoms” Low pain tolerance
Incorrect medical treatment given due to misdiagnosis
Our survey participants reported experiencing between 0 and 18 incorrect medical treatments as a result of misdiagnoses while managing their endometriosis symptoms.
We couldn't calculate the Medium, Average, or Mode based on the data provided.
Told that I should do CBT for pain- told them to pound sand Was sent to do this expensive pain thing that was similar but not CBt for pain (had a pain coach and was psychoeducational modules)after dx of endo and was very invalidating - quit after a month because it really fucked with my ptsd
I was given anti psychotic medication during a flare up that they didn’t check interacted with people with endometriosis and it made my flare up worse. I had to stay an extra 2 days hospitalized because of it.
low fodmap diet by GP...wasn’t give proper instructions how and was on an elimination diet for approximately 4-5 months resulting in me losing 60lbs and developing a fear of eating
Emergency appendectomy: no change in symptoms & Birth Control, no change in symptoms
Anxiety meds SSRI and SNRI ( which made me so anxious) Birth control that made me bleed everyday
Yes, I was on antibiotics or steroids for almost 6 years straight. I was eating ibuprofen like skittles.
18 different types of medication in two years.
Counselling Hypnotherapy CBT Many IBS medications All made no difference to my symptoms.
Medical referrals prior to diagnosis
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Our survey respondents mentioned receiving anywhere from 0 to 13 medical referrals while dealing with their endometriosis symptoms. The majority of these referrals were directed towards mental health services (30%), leading to some individuals being evaluated for mental health conditions. Unfortunately, we were unable to determine the Median, Mean, or Mode from the available data.
Psychologist- I enjoyed the therapy, but it didn't change my pain.
13 different Drs - everyone passed me to another specialty!
All said I was completely fine and no issues
I was denied these referrals
Orthopaedic consultant who discovered the ovarian cyst by MRI
How medical professionals made you feel prior to diagnosis
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Among our survey respondents, only 5% described their experience as 'positive' when seeking a diagnosis. In contrast, a significant 89% felt dismissed or overlooked. Even more alarming, 20% admitted to feeling suicidal after their consultation, and 40% reported feeling "Traumatised" following a medical appointment.
I had a very good experience I was being treated for anal issues with a colorectal surgeon. He asked me a number of questions and he thought it sounded as though I had endometriosis so he referred me to an endo specialist that he worked with. I was then diagnosed swiftly after this.
It’s important for me to note that my GP never made me feel like this, he actually took me quite seriously, it was my OB/GYN who made me feel like this.
I had a constant feeling of dread every time I had to go to hospital or see gynaecology or any doctor about endo. Until one GP who I met just before, they listened to me, supported me and fought with me to get me answers
I once showed them a picture of the blood I was losing from my bowel and I had one of the consultants tell me I was making it up, they were surprised when I got diagnosed.
Things Drs said to me still keep me up at night. OB’s should never be treating this FULL BODY disease!
Given false hope
Like it was my fault
Unimportant A burden
Hysterical Made up Unworthy Weak Pathetic
Endometriosis was diagnosed by
Most of the participants in our survey received their diagnosis from a General Gynaecologist.
A gyn diagnosed with ablation in 2019. Excision specialist is my current surgeon
General gynae to begin with but done nothing about it spent years fighting to get referred to specialists who also confirmed endometriosis
Emergency surgery after I collapsed
I BEGGED an Infertility doctor to do a lap. It was smart because he knew what he was looking at. He did ablation but it was a hot mess.
My general gynaecologist was the first person who talked to me about endometriosis and immediately sent me to see a specialist.
Organs removed following endometriosis surgeries
77 participants (46%) reported having one of more organ removed due to endometriosis.
Other organs listed were: Segment of Vaginal Canal, Artery in Left Glute, Bowel, Small Intestine, Large Intestine Vaginal Septum, Iliac Vessel, and Rectum.
My Left Ureter was cut and re-implated into a different part of my bladder. I will have hydronephrosis of the left kidney for the rest of my life.
Bladder relocated and I now have a stoma
I haven’t yet but I am waiting for full hysterectomy and possible kidney removal
Failed complete hysterectomy due to adhesions. Only able to remove left ovary.
Cost of medical treatment due to endometriosis
Our survey respondents reported spending between 0 and £300'000 on endometriosis treatment. The majority of the respondents stated that they have “lost count” or spent “too much” on treatment (25%).
Unfortunately, we were unable to determine the Median, Mean, or Mode from the available data.
Classification of endometriosis
Classification of endometriosis was originally Graded 1-4, as research as progressed classification was simplified to Superficial and Deep Infiltrating (DIE). Nonetheless, it is reported that classification terms are used interchangeably, with many patients being given several different types of classifications.
90 survey respondents mentioned receiving multiple classifications, with one respondent even receiving 6 classifications (Grade 4, complex, deep infiltrating, Respiratory, Rectovaginal and other). Most participants were categorised with deep infiltrating endometriosis.
I’m concerned my endometriosis has spread beyond my initial diagnosis where it was just around my uterus and ovaries. I worry it’s infiltrated my bowels, but no one believes me or will investigate.
Classified with G.2 Endometriosis
Where Endometriosis
was found
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Participants mentioned that endo was found in the the following under ‘other’: Arteries, Colon, Intestine, Other Nerves, Abdomen Wall, Heart, Intestines, Liver, Other Ligaments, Perineum, Psoas, Veins, Ureters, Vagina, Vessels, and Rectum.
Secondary health conditions
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Participants mentioned that endo resulted in the following ‘Other’ medical conditions due to endometriosis: Migraines, Medical PTSD, Chronic Pain, Anemia, Hormonal Lupus, Hormone Imbalance, Metabolic Issues, Compromised Immune System, Food Intolerance, Malnourishment, MSK Symptoms, Prescription Side Effects such as Osteoporosis, Nerve Damage, Surgical Menopause, Other Pelvic Conditions such as Haemorrhagic Ovarian Cysts, Pudendal Neuralgia, and Pelvic Dysfunction.
Current endometriosis symptoms
Survey participants shared their endometriosis symptoms that they currently encounter. Here are the reported symptoms under "Other": Bloating, Fatigue, Chronic Pain, Neurological Symptoms, Shortness of Breath (SOB), Migraines, Diarrhea, Anemia, Brain Fog, Lightening Crutch, Loss of Mobility, Stabbing Pains, Spotting, Ovulation Pains, Numbness, Shooting Pains, Bowel and Urinary Incontinence.
Nerve pain from my pelvis and lower back all the way down my left leg. So not only sciatica, as this is also on the front, along the femoral nerve. It feels like it starts at the ovary they removed during my first endo-surgery.
Miserable leg pains, bowel, and urinary incontinence, chronic fatigue, burning sensation in the pelvic, sudden vomiting, intense.., tingling in hands and feet, pins and needles sensations.
Brain fog Intense bloating Stabbing pain
Leg cramps (numbness & terrible pain like a knife is inside my thigh)
Winded and can’t take a deep breath
Exhaustion/tired ALL the time!!!!
Current MDT for endometriosis:
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Participants shared the Multidisciplinary Team (MDT) responsible for managing and treating their endometriosis symptoms. Other MDTs included: Acupuncturist, Anaesthesiologist, Cardiologist, Chiropractor, Endocrinologist, Functional Medicine Doctor, Gastroenterologist, Gynaecologic Oncologist, Immunologist, Integrative Medicine, Kinesiologist, Hepatologists, Massage Therapist, MSK Physio, Naturopath, Neurologist, Neurogastroenterology, Nutritionist, Occupational Therapist, Osteopath, Pain Management, Psychiatrist, Rheumatologist, Trauma Therapist, Urogynaecologist, Weight Management.
Survey participants reported having 0 - 11 MDT members providing medical treatment for their endometriosis symptoms, with a median of 5.5 symptoms (5 = 10% and 6 = 7%). The majority of participants have 1 MDT (24%), with an average of 3 (13%).
6% of participants do not have a MDT
Under both private and NHS teams - I will have to pay private for treatment due to complicated endo and the NHS being unable to offer excision, also the wait times
Trying to get in with a specialist, but no one wants to take my insurance, and paying out of pocket is not possible.
I'm the US so BSGE doesn't apply. But I saw a gyn who only does surgery and reproductive endocrinology; also see a general gyn who specializes in pelvic pain
None, haven’t had any support. Use alternative therapies to try and get by
Waiting to see pain team at UCLH Also see a gastroenterologist
Functional medicine doctor helped most also saw endocrinology which wanted me to take metformin for cysts.
How GPs made you feel since being diagnosed
After being diagnosed with endometriosis, survey participants revealed that:
39% felt that their symptoms / concerns for visit were believed their GP.
32% felt they were wasting their GPs' time.
33% felt ignored or dismissed.
7% experienced suicidal thoughts due to the way their GP treated them.
21% stated that their GP understood endometriosis.
As though I am stupid
Fat and treated as a drug seeker
My GP is amazing
Unimportant A burden
never went back to GP and never will
Once I found a caring doctor who listened, I kept him. Been going to him for 12 years now.
At 16 after 1st surgery I was told it was "cured"
I gave up on getting help for it after my surgery.
I don't go back. Medical trauma is hard.
Caring but unknowledgeable often.
My GP has laughed at me when i have asked to be admitted due to pain and bloating etc.. She saw me in person and said '' oh you are bloated.
My GP only believes me now that I got the official diagnosis before that they couldn’t care less.
Not given range of treatment options. Encouraged to stop breastfeeding to be able to take stronger pain killers
My GP only believes me now that I got the official diagnosis before that they couldn’t care less.
My GP has always had my back, gyn made me feel dramatic or as if what I experienced was normal.
New GP doesn’t deal with my “vagina problems”. ..Prior one told me I had no real health conditions and was “impressed your not an opioid addict
Literally told me to find a new GP because there is nothing he can do for me until I made a complaint and then I was shown the letter from the previous gynaecologist stating I was ‘fixed’ no Endo and should get a psychiatric evaluation as it was in my head.
GP doesn't understand endo at all but he at least validates my struggle but still thinks I'm being dramatic. He just doesn't know how to assist with treatment options
I think my doctors are aware that most of my issues are due to endometriosis but they seem to have the attitude that it’s not their problem to make me feel better
How MDT made you feel since being diagnosed
fter being diagnosed with endometriosis, survey participants revealed that:
Only 24% of their Endo MDT understood endometriosis.
48% felt as though their MDT believed their concerns and symptoms.
39% felt as though their MDT listened to and cared about them.
Like I want to be in pain because I refuse to take hormonal medication. I asked my OBGYN for lidocaine patches for my back pain and she said “if you were treating the endo it wouldn’t be an issue
I have seen two one being a General Gynae the other an Endometriosis Specialist. General Gynae made me feel quite stupid like I shouldn't be asking the questions I was asking. My Endometriosis specialist has been wonderful so far and has made me feel 1 and talks about best and worst case scenarios clearly.
My endo specialist is amazing - he is constantly giving me supplements to take, books to read, etc. and reminds me that endo is a full body disease and that everything we do affects how our body responds to endo.
my gyno tries her best but she is not as educated in endo as I wish she was.
I was discharged immediately after my diagnostic surgery. No follow up
At this point, my OBGYN tells me they can't help me except to give me birth control.
New surgeon actually understood and was absolutely disgusted with how I was ‘left'
I don't see any in my country due to having only problems with thoracic endometriosis
There is a notable divide between knowledge in NHS and my private team.. My NHS team seem to have outdated knowledge on endo, which is frustrating.
Encouraged to rule out other possibilities for causes of remaining/returning symptoms, rightfully so and heard out along the way.
I don’t have one
Been really supportive
Abuse of power, no will to correct mistakes.
No care after I was diagnosed. I had to really push for help.
Validated
Flare-up symptoms
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On average participants experience 9 Flare-up symptoms (13%). With other symptoms being: Contraction-like Cramping, Insomnia, Diarrhoea, Bloating, Pins & Needless, Numbness, Radiating Pain, Vertigo, Night Sweats, Hot Flushes, Indigestion, Gas Pain, Brain Fog, Vision Problems, Breast Swelling, Breast Pains, Deep Vaginal Stabbing Pain, Bladder Pain, Urgency to Urinate, Inability to Empty Bladder, Burning Pain, Can't Walk, Ovary Pain, Full Body Pain, Feel as Though I am Dying, Neuropathic Pain, Muscle Weakness, Immobility, Irritability, and Vomiting.
Frequency of flare-ups
Survey participants reported experiencing their flare ups daily (14%) to yearly(1%), with the majority of participants experiencing a flare up weekly (24%)
Honestly, this depends. If I don’t get enough sleep a flare up can be triggered. If I eat something I should not it could cause one as well. But definitely being on my period before or after, and during ovulation. Some months is more predictable than others.
Post hysterectomy my flare ups happen erratically, can seem to be triggered by stress, and sometimes still cycles out of nowhere. Usually I have a flare up every few months, but not in a cycle I have found yet.
More like every other month maybe occasional 1-2 day flares here and there. But I’ve had a complete hysterectomy- I’m technically considered in “remission
I haven’t had a period in over a year due to meds so no clue on timing
The severity varies. The first day of bleeding is always the worst though.
They can come out of the blue for no reason at all
Ovulation is horrendously painful for me.
Before expert excision it was daily.
Varies as I’ve started continuous birth control.
Each surgeon acted like their surgery would cure my endo.
Sometimes daily
Before expert excision it was daily.
Length of time that a flare-up lasts
Survey participants reported that their flare ups would last between a few hours to months. 7 days, with the majority of participants experiencing a flare up for the duration of 3 days (15%). With other durations being reported as; 14 Days, A Month, 3 Weeks, Comes & Goes, Varies, Months.
Hugely varies. Could be a few hours, could be weeks
the worst flare-ups are around ovulation day and my period
my flare ups last for about half an hour but come back daily, sometimes multiple times a day
my flare ups last for about half an hour but come back daily, sometimes multiple times a day
Unpredictable and varied
Completely varies; a bowel flare up can be weeks; during menstruation a flare can be a couple days to a week; other flare ups can last just a couple hours.
I have been in one continuous flareup for several months -- my complex endo and a bad first surgery caused an inflammatory reaction.
Pain levels during a flare-up
44% of survey participants reported that despite taking pain relief they struggle to eat, sleep, walk and hold a conversation due to their pain levels. Only 3% of participants report that their pain relief manages their pain.
Medical tests for / due to endometriosis:
Survey participants reported other tests as: Abdominal and Pelvic CT scan, Abdominal MRI, Anal rectal manometry, Back CT Scan , Bladder Instills, Blood testing, Brain MRI, Catheterisation, Chest CT, Chest x-ray, Colposcopy, Compression Ultrasound, Cortisol Levels, Cystogram, Cystoscope, Defecogram,
Dexa scan, Dilation and Curettage, ECG, Electromyography, Endoscopy, Euglobulin lysis time, Fibroscopy, Gastric emptying study (Nuclear medicine), Hormones tests, Hydrodistentions
Infusions of ketamine/lidocaine every 6-10 weeks, IUI HSG, Mid abdominal MRI, Oophorectomies, Pain mapping scan, Pelviabdominal ultrasound, Pelvic CT, PET scan, Sigmoidoscopy, Slow transit study, Stool samples/FIT tests, Sucrose lysis test, Urine samples, Urodynamics, x-rays