ENDOMETRIOSIS: Gynecology fails to do their job using myth to explain what they do not know.

A Professor of GYN asked the question, what kinds of things should not be said to endometriosis patients. In 2 hrs 3500 hits recounting abusive comments made mostly by those who should be helping or referring patients if they do not know what to so. It's a long shameful read, but we really have to clean up these outrageous behaviors. This is just a sample, these patients know the basic concept about endometriosis. Many of their doctors do not. (pockets of expertise excepted of course)

Gynecology should spend less time hammering away and trying to undermine advocates teaching patients what they need to know, and focus on raising standards of care in gynecology.

Here is just a sample of patients experiences, mostly at the very hands of those who should be caring for these patients and most of these patients having established disease once they left the doctor giving poor advice:

**1. Regarding painful sex a nurse told me to just have some wine and loosen up

2. "Its always all about you"/"but you're always ill" said by partner. Really hurt

3. "Shhh it doesn't hurt" after screaming A1 awake during a colonoscopy that had been pain free until that point when the consultant hit external adhesions. He shushed me like a child, ignored my withdrawn consent and rammed the probe through causing immense pain. He was reported

4. If you feel better after expert excision "then you can't have had endometriosis in the first place"

5. Endo doesn't affect you except at your periods. Stop eating so much (referring to endo belly swelling which was causing so much pain I could not eat). I was dangerously underweight when unswollen. Some of those clothes now are too small for my slim age 11 neice

6. Must be nice to be in bed all day

7. After 1st incomplete surgery "youll feel better than you have in years" and after rapid worsening symptoms on lupron drugs "what do you expect?" (General gynae not interested in painfree life just in offering to help me get pregnant which I, my mother and partner all told him I never wanted)

8. If you don't have sex they'll leave you

9. You're too young

10. Wait til menopause

11. "Oh get off the floor it cant be that bad. Go home.and take paracetamol " A&E nurse during flare that meant I could not walk and passed so much blood I had dangerously low blood pressure and was admitted

**No, you won’t feel pain elsewhere outside of your stomach”. I consistently had lower back pain, shooting pain down my legs, and swollen & painful fingers. It affects your entire system

**Before we finally found out my daughter had Endo… one ER doctor told her “you’re probably just constipated so go home

**my first doctors visit he looked me straight in the eyes and said “you’re full of shit” and laughed. Haunts me to this day

**this happened to me too

• ** I also got this diagnoses. They prescribed me magnesium citrate on top of what I didn’t know was endo pain and oh dear Lord
• **I was in high school and my ER doc told my mom it was probably just a panic attack

• **i have gone to many obgyns and told them about my painful periods and that they dont feel normal to me and they always say it's normal, it will get better after kids and with age. Like what??!!!

**“You have endo, so you’re going to have pain. we can put you on Orlissa or Lupron”. Or “the ultrasound technician can’t see endo, it must have been a gas bubble”

**I had bad periods, had a hysterectomy and now I have no issues.

**Normally women can wait until they go through the change of life and then everything goes away...said to me by a doctor at 41 years of age

**“The pain is all in your head, your scans and blood work came back all clear”

**“I’m giving you a prescription for pain medication, there’s not much more I can do”

**Have you considered seeing a psychiatrist?”

**all of this but no pain help

**"Just get pregnant, that will cure it." "My cramps went away after I had a baby"

**yep heard that

**THIS!

**I was told this.

** Right, like it's soooo easy to get pregnant with endo.

**Screening for mental health and opioid addiction before doing a physical exam.

**"Start eating iron rich foods."

**"Think positive and manage your stress."

**"Endometriosis goes away in menopause."

**"You weren't imagining the pain after all..."

**Yup, got this one too

**When coming back from checking the pregnancy test prior to a procedure...excitedly saying "no babies". I started bawling

**“There is nothing wrong with you. Life is just hard.” When truly I had stage IV endometriosis & adenomyosis and needed a complete and total hysterectomy.

**It's impossible for you to have endo-you have a child and endometriosis makes you infertile."

**"It's not endo-you had surgery. Your back and hip issues are ortho issues and your GI symptoms are not related." (Despite imaging showing up nothing, an orthopedic specialist and a pelvic PT saying it's not an ortho issue, two previous surgical diagnoses of endo, and symptoms matching the same symptoms I had prior to the other two surgeries)

**You’re being overly dramatic, now that you’ve had the hysterectomy you don’t have endometriosis anymore.

**From my obgyn of 15 years, I found a new doctor.

“You must just be very sensitive”

every. damn. time.

**it was demoralizing. This is after KNOWING I had endo (surgically confirmed by a previous doctor over 20 years ago) this doctor never took it seriously and I have been concerned about symptoms for at least 10 years. Thankfully, I recently sought a second opinion and currently recovering from excision surgery and partial hysterectomy (2/7/23) by a Nook doctor. It was every where and, if anything this proves I am quite the opposite of sensitive and have a high tolerance for pain. Thankful I found this page.

**oh yes… “you must have very sensitive ovaries”

**“You won’t find anything there, trust me you’re just wasting your money doing the ultrasound if you insist! It is just muscular pain” ER doctor

**After struggle with infertility and painful periods my fertility specialist says, “I’ll do the lap, but I really don’t think you have endometriosis”. He found stage 1 (he’s not a nook specialist)

**? Your are thin that is why you feel pain

**Or you should lose weight, you will feel better (pt w 5'10" & 140#)

**? You have been in pain and now your brain fonction is trained to just making you think you are in pain ?

?** You only show mild symptoms endo so you must be exaggerating your symptoms ?

“**It’s just cramps. Every woman has them. Just take 4 ibuprofen. Suck it up and deal with it. You’ll be fine.” - from my former OBGYN.

** “Sometimes periods are just painful. You’re going to experience a little discomfort.” -the male doctor at the er

**Just take this birth control. It will help. Haha. Loose weight that's your problem, you don't get enough exercise.

**"If you get surgery, you'll just be going back in for surgery every 6 months for the rest of your life because they will never be able to get it all. It's microscopic, that's impossible. Being on birth control is better." - my ex-OBGyn

**After referring me to a new specialist (GI, PT, etc) every year... "Well, some people just have to deal with the pain. You might be hypersensitive."

**"for me tea is helping with cramps, maybe try that" "lets find out underlying psychological reasons" (<- as much as I am into good therapy and coaching, I hate it when something definititely out of my psychological control is without any question is named pscyhological)

**"You're just sensitive" said by a GI doctor as I had a complete blockage at terminating ilium from DIE endometriosis.

** “There’s not enough endo for the amount of pain she's describing. She needs to see a psychiatrist.” — surgeon to my family after surgery.

**In reference to my hysterectomy— “oh that’s elective surgery”

**“How do you feel now that you’re barren?”

**Menopause cures endometriosis ?

**Or even worse, no response at all to complaints of GI discomfort, excessive bleeding, pain. Just blank stares. Leading to decades of unaddressed stage IV endo.

**Everything your experiencing is "normal".

I**t doesnt grow there. only stays on you reproductive organs

**Your laps look normal, do some yoga, lupron will fix it. This is what i have heard from the doctors in the Netherlands and a lot mome crazy things (Many Laps fail to look in the most common areas of involvement)

**I hysterectomy is not a cure- there is no cure.

**“You’ll feel better in your 20s” said to my 14 year old daughter in excruciating pain.

**1. After telling my GYN I was having pain with sex, she told me to try different positions.

She’s no longer my dr.

2. Just change your diet and exercise.

3. What you describe is not possible.

**"You are just lactose intolerant - cut out dairy and you will feel much better!" - from a gyn

Another gyn told me repeatedly he would "feel so bad if I became pregnant" when I wanted to go off the BC pill I was on, because I had been bleeding continuously for 4 months. He said it several times, to someone who was never able to have a child, had been on some form of BC pill for 17yrs to manage undiagnosed endo symptoms, and was not sexually active.

**I lost weight, my Dr said "sex hurts because you lost weight and things are moving around in there"

**Stop catastrophizing, there’s nothing wrong with you.

**So, you're not feeling better after doing all those things? Are you sure it's not just psychopysiological ?

**1.You’re too young to have these issues.

2. Just get a hysterectomy, it will solve everything.

3. It’s just in your head.

4. It can’t be THAT bad.

5. Just have a baby and you won’t have these problems.

6. If you really think we need to do scans then I guess we could look, but I think you’re wrong.

7. You’ll grow out of it.

8. It’s normal.

9. Just take some Tylenol.

10. Just diet and exercise should do the trick.

**this. I've heard it all too.

**“This isn’t a formal recommendation but maybe drink some wine or take a pain killer before sex to help you relax” (without referring me to pelvic floor PT)

**“eat more prunes and here’s a pain killer for stomach spasms” (that was over prescribed and the pharmacies literally told me not to take that much when I picked it up)

**“pregnancy usually helps the symptoms so that should give you relief for a while”

**“here’s 800 mg ibuprofen because midol won’t do anything for you”

**“the more you relax the easier this will be” (during a pelvic exam as I’m crying)

**“Everything came back normal.. you probably do have endo” (without referring me to anyone else for help)

**The doctors told me “I’m ok, still no cancer.” after every scans. They’d asked me to take painkillers and probiotics, do Yoga and that I’ll feel better when I’m menopausal!

**All those years wasted, and (they) led to frozen pelvis! I could have gone on to try to have a child if they’d have paid more attention or at least tell me I should see a endo specialist if they could not deal with it. Instead the IVF doc also sent me off saying I do not need to see him anymore, with no reasons.

**Have you tried _____ supplements? Or yoga?"

**Birth control will help (didn't)

**Bless my husband he really was trying to help but…..”I read caffeine is bad for endo, and you really do drink a lot of coffee”

**As demonstrated when I commented, that there’s always someone to tell you your complaint isn’t valid. Period.

**“You will just have to learn how to live with the pain

**The amount of times I was told to have kids even though I explicitly state that I'm childfree is ridiculous. I've been told that it's just GI problems. I've been told how about x birth control/diet/yoga/supplements?. I've been told it can't be that bad if I have to hop doctors to beg for a diagnosis.

4th obgyn found endo, adeno, and PCOS. Not sure what the other docs weren't seeing.

**The reason you bleed after sex is because you’re uptight” From a Gynae after they performed and internal examination. Had they actually performed their job properly they would have seen the Ectropion that was causing the bleeding, all the time. Not just after sex.

**“It’s not an us problem, it’s a Gynae problem” From an Urology doctor after Bladder Endo was found. Switched hospitals. At my 2 latest hospitals it’s actually been both an Urology AND Gynae issue.

**Post menopausal women in their 50s with a hysterectomy don’t have recurrence of endo.

**Everyone gets a bad period sometimes!

**Well at least you cannot die from endometriosis”

**It’s probably just …..

Stress

IBS

Something viral

Your age

“anxiety can cause all of the problems you are describing.” And prescribed and SSRI

**Debilitating cramps are “normal”

**“It’s just your bmi causing your fertility issues and haemorrhaging. Lose some weight and you’ll be fine”. Had she actually read the ultrasound report in her hand, she’d have seen the 9cm endometrioma destroying my ovary.

**It really shouldn't hurt. It's very small(cysts).

**f you had had babies, it wouldn’t have progressed so far.

**“It’s probably just heartburn” -doc OR

“It’s probably just nerve damage” -surgeon

**“Can you please spell Endometriosis for me?” -nurse “Unexplained fluid on your omentum and colon” “unexplained curtains of adhesions on your liver” -surgery notes before diagnosis

**Thank you for asking. Doctors, please do not tell your patients :

1) We all have a bad period sometimes.

2) Having a baby changes hormones and should help.

3) Your ultrasound shows no possible signs of endo, as I expected.

4) I complained of pain and extreme pressure mid-cycle and was nearly laughed at that I’m not even ovulating because on the pill. (Duh!) No action was taken to address my pain. I cried on the drive home, I felt so stupid.

5) Endo or menstrual issues would not cause my back and leg pain.

**1. Regarding painful sex a nurse told me to just have some wine and loosen up

2. "Its always all about you"/"but you're always ill" said by partner. Really hurt

3. "Shhh it doesn't hurt" after screaming A1 awake during a colonoscopy that had been pain free until that point when the consultant hit external adhesions. He shushed me like a child, ignored my withdrawn consent and rammed the probe through causing immense pain. He was reported

4. If you feel better after expert excision "then you can't have had endometriosis in the first place"

5. Endo doesn't affect you except at your periods. Stop eating so much (referring to endo belly swelling which was causing so much pain I could not eat). I was dangerously underweight when unswollen. Some of those clothes now are too small for my slim age 11 neice

6. Must be nice to be in bed all day

7. After 1st incomplete surgery "youll feel better than you have in years" and after rapid worsening symptoms on lupron drugs "what do you expect?" (General gynae not interested in painfree life just in offering to help me get pregnant which I, my mother and partner all told him I never wanted)

8. If you don't have sex they'll leave you

9. You're too young

10. Wait til menopause

11. "Oh get off the floor it cant be that bad. Go home.and take paracetamol " A&E nurse during flare that meant I could not walk and passed so much blood I had dangerously low blood pressure and was admitted

**Same thing happened to me during a colonoscopy. Don't think I'll ever get over that experience.

**All your results are good, it must be your bowel. Do some yoga and get pregnant!

**Worst for me is when you end up in hospital and they find out you have endometriosis and adynemosis as just go "oh its a flare up take pain meds and go home"

**It's all in your head...

**“I have bad cramps too” from someone who doesn’t have endo as they plan a big night out while on their period

**it’s irritating coming from people who truly don’t understand what “bad cramps” really are.

**ha! I literally planned my whole life around my period before my hysterectomy. A big night out… I can honestly say that never once happened. Sometimes not even if I wasn’t on my period because my pain would happen whenever the heck it felt like it.

**To say that hysterectomy or getting pregnant cures Endo. Hysterectomy is life altering and surgical menopause is as bad as Endo for some women.

**“This is just part of being a woman”

**“Why do you think that the pain in your leg is related to a gyn problem? Stop searching in google!”…. Because it starts x days after period and ends y days after period … I might a woman and a patient, but it does not mean I can not use basic logic thinking (my answer). I had not searched google and I had never heard about endo.

**You would know if you had that you would be in lots of pain. (Like I am daily in pain)

**“You probably just got mono at the exact same time your ovarian cyst burst.”

I promptly got a second opinion.

**It’s normal. Because it’s as FAR from normal as it could possibly get. Maybe they mean that it’s common, but it is definitely not normal. They just brush it off like, since it’s not a death sentence (to them at least) I should be happy. But when your quality of life is crap, it feels like you’re dying a long, slow death.

**When pregnant and suffering from endometriosis and in so much pain I had high blood pressure I was told by a nurse “control your blood pressure or we will wheel you into the operating room and cut your baby out of you”

**"You just have to deal with it" "painful periods are normal" "here just take some pain meds that will help"

**“Your periods have always been regular and you say you don’t have pain during your period, so it’s really not likely it’s endometriosis.”

(Despite flooding, GI distress and butt lightning)

**Anything that can be considered dismissing of a patients pain verbal or not.

Actions can speak louder than words.

**At Dartmouth-Hichcock OB Cancer Center (Tier 3 hospital full of "specialists"):

Dr. (during internal exam): Have you ever had a history of sexual abuse?

Me: Seriously? Do you REALLY think NOW is the best time to ask that? WHILE I am trying to relax for you?

Her: Oh, I suppose not.

**The first two comments were actually made by my local gynaecologist

. **Normalising pain is top on the list for me.

**It's just scar tissue

"**The amount of endo you have shouldn't give you such severe symptoms"

"Just take a little advil"

"It'll go away once you hit menopause"

Just to name a few.

**It’s just your IBS again, I’m concerned about your mental health.” - GP

“Well they say these things happen after pregnancy.” - My Mother

“You’ll be fine in a coupe of days.” - A ‘friend’ after I told her I just had excision surgery for DIE, bowel endo, superficial endo, and endometrioma.

We only treat Endo if you're trying to get pregnant.

**I think you have an STD. Your symptoms indicate an STD. Did you cheat on your husband?'

'No, of course not!'

'Did he cheat on you?'

'No, we are happy together and we trust each other!'

'Are you sure you didn't cheat? You're young and... But if you say so...'

**I will never forget these words. Or when they laughed at me saying I had a miscarriage and how it's beyond their imagination when a woman doesn't know she's pregnant.

I wasn't pregnant, I had 4 heavy bleedings in 1 month and a half due to endo and no intercourse with my husband during that time. And obviously no STD and still happily married after 10 years.

**Being told everything is “normal for some women”

**- Being told I shouldn’t go by what I read online about medication side effects.

**You’re too young for that

**You just had surgery you shouldn’t still be in pain. It must be something else.

**You can’t say you’ve tried everything until you’ve tried all of the birth control options.

**Have you tried ibprofen and a heating pad?

**You’re just ovulating, sometimes ovulation is this painful” -after throwing up all night from pain, couldn’t keep down water and had to have morphine the pain was so bad

**You have endo? Well, then you have a reason for looking forward to menopause”

**It is your own fault your symptoms came back after surgery, because you refused to take hormones”

**You just need this supplement/special diet/homeopathic drops/etc, tha will clear it up”

**You can’t have thoracic endo if you don’t cough up blood”

**We don’t need to find out what’s causing this pain, you can just take these hormones”

**Telling you your symptoms aren’t real. Just one example, I recently had a General Gynocologist tell me fatigue was absolutely not a symptom. She followed that up with the advice that I could either pursue pregnancy (which is a desire presently) or pursue endo treatment, but not both. I think the lack of knowledge and treatment options are discouraging. Often having a doctor who validates, listens and will advocate for you and options is the most valuable

**If you adjust your diet it would alleviate a lot of your symptoms.”

**Whilst fighting for a diagnosis I was told by a gyno consultant “if your holding down a job your pain must be manageable so I’m discharging you. Our waiting lists are too long following Covid to deal with minor ailments”. Took my another 3yrs to get a laparoscopy diagnosis

. The constant dismissal and humiliation was so damaging to my mental health.

**Your testosterone levels must be low. That’s why you are hurting.”

**Go for a long walk!” After I’d just said I passed out with pain!!

“**Most women experience a little bit of a twinge!”

**If you've had pain for as long as you can remember, it can't be endo" - an awful OB GYN said this to me.

**You're a little high-strung" another awful OB GYN

**Endo doesn’t increase your likelihood of postpartum hemorrhaging. It can only make your periods heavier.”

**let's just talk about the pain in your belly " Gyneco doctor after i described my lower back, left shoulder pain and the pain in my neck nerves

"**well, actually. . ." primary care doc who was unwilling to accept I'd read more of the current scientific literature on Endo than he had

"You just need to have better thoughts about pain." certified minimally invasive gynecological surgeon who decided I really didn't need surgery for known endo and 2" fibroids

But I'd also like to share a few things very excellent things that clinicians have said to me, even when ultimately they couldn't provide the solution themselves.

**"I don't think that you have to live in this much pain. You do need to find a treatment option that you have peace about going forward with, but I don't think you should be resigned to living your life this way." -- gyn who first recognized my symptoms as endo, but could only offer me a hysterectomy. She gave me the courage to keep going.

**"I don't think this is a GI issue. But you're clearly in a high level of distress, so we have to keep looking until we find out what is causing the problem." GI doc who adamantly advocated for me to have specialist excision and not to settle for anything less, when her persistence in looking for the problem finally revealed endo.

**"You have a lot of grit." My vision doctor who watched me struggle through the worst part of the illness and the medical system.

“**You are overreacting.”

**All your tests, even MRI and ca125 came back normal. You are as healthy as everyone else. “

**When i said my symptoms and severity is exponentially high..

She said “Must be mental manifestation because you don’t get the same sympathy from your husband as you used to get from your parents.I can prescribe medication for depression. Stay positive, go out with your friends and all this will go away.”

At this point I was bawling as I believed everything!

**We don’t recommend surgery because it will grow back again so there’s no point. Just take birth control and take tylenol for the pain. I also have endometriosis and I’m doing just fine.” From a female OB GYN

**A male GP once said to me after over 30 years of struggling …..

‘**Can’t you just put up with it and take painkillers , it is only once a month ‘

**After my hysterectomy: "You're cured now".

**If it was endometriosis, you would have been diagnosed by now (at age 48).

**Your CT scan is clear. You're not sick. There is no reason to be short of breath. This is all in your head. You had surgery 3 years ago, so you are well.

You need to chill out. [whispers] Have you tried marijuana?

**My personal favourite (just after the "endo will go away when you get pregnant"): "this is such a 'fashion disease', almost everyone has it, don't be a hypochondriac"

**That’s just part of being a woman.”

- my (former) PCP of 15+ years when I described my symptoms

“Only two things will help with symptoms: getting pregnant or going on Orilissa.”

- my (former) OBGYN