Why Endometriosis Patients Keep Getting Gaslit 

My story is exactly like this! I had terrible symptoms from the time I was 13. I was ignored, even by women doctors until it got so bad I had to go to the ER. I was finally referred to to a doctor who gave me a complete hysterectomy. He said it was so bad I couldn't have children even if I wanted them. It was starting to get into my other organs. It makes me so angry that no one listened to me until I was 36.

Honored to have been included in this video! 🥰 Thank you so much, PBS Vitals, for helping to raise awareness about this incredibly common disease that SO many struggle to get relief from! If you're having possible symptoms, please see an endo specialist, and don't let anyone tell you "it's all in your head!" 😣

Thank you for this video!! As someone who wasn’t diagnosed until 28 (I had 14 years of extreme pain - I’ve had broken bones that hurt less) this really impacts your life and being ignored makes it worse. I was almost fired from several jobs for “being sick too much” and even though my symptoms are fine now(IUDs are great) I developed a vomiting disorder from throwing up once a month for a week straight. Having docs say ‘it’s just anxiety’, or ‘some periods are just like that’ or ‘you probably just have a low pain tolerance’, or ‘just take some midol’, or not wanting to talk about it at all definitely didn’t help

Having Endo is like having a similar pelvic/abdominal disorder like IBD, except instead of lesions inside the colon it's all over the outside of pelvic organs including the colon, intestines, bladder, etc etc etc etc. And with endo nobody understands or thinks it's serious unlike IBD 😓

My mom had this when i was growing up so she had to have a full hysterectomy. Took a long time for doctor's to take her seriously. After her surgery we went to the movie dumb & dumber and she ended up having to leave the theatre as she was laughing so hard her staples were about to pop and her gut almost bust open.

Thank you for this video! I found out recently that some of my friends were also suffering from endometriosis. They mentioned how hard it was to get diagnosed. This is really good to get a better understanding of this. Keep up the good work! :)

I got my laproscopy the same time i got my tubes tied at age 36. FINALLY got a diagnosis, even tho my first symptoms started with my first period at 11

thank you for spreading the word!

It is so upsetting to read all of the comments about doctors who have preformed hysterectomies to woman for endo! A hysterectomy is NOT a cure for endometriosis! We need more research on endo this is devastating.

Thank you for covering this! I know so many people with endometriosis, and it comes in so many flavors - like my asymptomatic best friend, whose surgeon discovered she had a very advanced case while performing laparoscopy to treat an ovarian cyst. My mother had adenomyosis (the most painful thing she'd ever experienced - from someone with three unmedicated deliveries and some chronic injuries!) and had a hysterectomy. Mine is mostly okay after a round of Lupron 15 years ago and continuous birth control (I also have PCOS - fun), but I do get stabbing pain on my right side if I work out too hard or move the wrong way. I'll be starting hormone replacement soon, though, so who knows??

This video was very informative on endometriosis and the barriers there are to women getting a diagnosis or treatment. It amazes me that this can be such a common disease in women, but getting a diagnosis takes so long. Seven to ten years is an extremely long time for women to go through the pain of this disease with no answers. One reason why it takes so long for endometriosis to get diagnosed is because women's pain is often not taken seriously. It is upsetting to hear from Jenneh Rishe how she had to prepare to fight to have her concerns addressed when she went to appointments. I am glad that she knew what she was experiencing was not right and she was an advocate for herself. However, I am sure there are many others who do not know what level of pain is not normal, especially when it comes to period pain. I believe it is extremely important for people to share their experiences with the healthcare system, especially in cases of these diseases that often get overlooked. As I mentioned before, I feel that it is not common knowledge what is normal emotional changes or pain during a menstrual cycle. Therefore, women do not know when something is wrong and needs to be addressed. For example, today I saw a video on social media from a girl who was commenting on the depression and emotions that she experiences the week before a period. The symptoms she was bringing up seemed extremely concerning, especially when you think about how she experiences them for one week every month. In the comments someone mentioned that it sounded like it could be premenstrual dysphoric disorder (PMDD) and was something that needed to be addressed. However, someone then commented back that PMDD was just a made up gen-z term for the emotional changes before a period and not a real problem. This was incredibly disheartening to see and perpetuates the idea of women's pain and concerns not being taken seriously. Comments like these can also prevent women and others from getting the care they need. I believe it is important for healthcare providers to be the ones who listen and make sure women feel heard. Also to make sure that women are educated on when their pain is not normal and needs to be addressed. The current gaslighting that goes on regarding women's pain is causing harm to many. Hopefully, providers can act in a way that follows the ethical principle of beneficence, doing good for their patients, and nonmaleficence, doing no harm. A simple way for providers to do this is by listening to the concerns of the patient in front of them and giving them time to talk.

This can grow in horrifying places like the heart

Great video! You should also do one on PCOS. That one has a bunch of stigmas attached because it can be the cause of weight gain and an inability to keep it off. And there are a huge variation in symptoms As well, from almost never-ending periods to no period in almost a year. It also often causes infertility, painful period and ovulation pain (which freaked me out the first time because I didn't know it existed). I know it personally took me 10 years to be diagnosed with it because the doctors and radiologists wouldn't do the correct ultrasound for it and I didn't know until the last time to demand it. I was told twice during that time by different doctors that my period problems must be from an STD and implied that I was lying about either being a virgin or my husband and I only ever having one sexual partner, making the chance of STDs laughable. I'd already done multiple STD tests for nicer doctors with obviously negative results 🙄 Women's issues are often just pushed to side and drastically underfunded.

Thank you so much for using inclusive language in this video (and your videos with Mama Doctor Jones) - it really does count 🏳️‍⚧️💕

It’s the most painful thing

THANK YOU SO MUCH ITS REALLY IMPORTANT

Lost a kidney and was told by surgeon I have endometriosis that blocked my ureter and ed my kidney over many years. Because he was siloed on the kidney there were no notes and now I still don’t officially have it despite all the symptoms being present.

Thank you

Profound thanks to you for this!! Please don't give up. One would think that more PhD students would undertake to research and launch the lineup of interest on the matter... The level of comfort with medical ignorance about why women of African descent suffer that disproportionately from fibroids is also unacceptable. I hope that your paths will reward you with the satisfaction of having caused a great step in medecine, and provided preservation of fertility, healing and births for people in numbers you will never be able to keep count of. 🙏

How can i speak to Dr Tang? It's important and urgent.

I didn't have laproscopic they did mri and cat scan on me to find it and when my utarus was removed it had both endometriosis and lam a lung condition I also have bunch cysts that can trigger lung collaps but apparently I had spread to the utarus went to the ER again the 29th June and found out my endometriosis had appear on both ovaries

Is it an autoimmune disorder?

Everyone's story is the same suffering and late diagnosis 😭

Doc ,I need you. I have stage 4 endometriosis 😭

A trans inclusive gyn?!? Where yall find her, what a gem 💕

As an afab agender person, I appreciate the fact that you used inclusive language.

Doing a ultrasound is so easy but doctors dismiss your pain and then get you into bad to worse situations instead of just doing a freaking ultrasound!!!

Drs took more than a quarter century to correctly dx me.

Affected people? But yet you say women’s pain in your next sentence so which one is it? Btw I am an endometriosis patient only when I am at the doctors office.

Im upset they could have sent me to a pelvic specialist or something. If the doctors don't believe you then what .

Super appreciate both the advocation for women's health and also the recognition of trans people. It's a lot better mental-health wise as a trans person to be able to get treatment from medical practitioners who don't misgender, and it's extremely important to be able to use neutral language so trans people feel safe discussing and treating health conditions. Otherwise, those health conditions are more likely to be left untreated. Also, hysteria or alternate versions is honestly still being used as an excuse to dismiss women's health concerns, though health orgs are definitely turning against it (see: the history of ME/CFS, which not exclusively but predominantly affects women) so I'm glad it was brought up.

I don’t think people are very aware of diabetes. People don’t really know anything about diabetes. Some doctors seem to be clueless on diabetes.

Why is everyone yelling at the camera?

Endometriosis does not shed like the endometrium, please don't spread misinformation as that is contributing to the problem.

Honestly, if men were affected like this, there would be so much more money invested. Always second class citizens.

I'm glad mine stopped 2 years ago. I never want it back. ☮🕊🏳‍⚧🏳‍🌈😘❤🧡💛💚💙💜💗🤎🖤🤍🤗🏳‍🌈🏳‍⚧🕊☮

I wish you would specify between theories and proven information. For example, there is no evidence that birth control or other hormone treatments *slows* growth of endometriosis. This is purely theory based on pain reduction. There have been no comparison studies on the progression of endometriosis on vs off birth control. I think its important to point out endometriosis isn't the endometrium whenever discussing how the cells are similar. My last point is its unnecessary to discuss "AFAB", some doctors in rare cases have seen endometriosis in cis men and intersex people, who are not AFAB, and many trans ppl like myself don't care to reference gender assignments at all, it's more a cis fixation with trying to bridge language that actually isn't relevant at all. It would be helpful to have a trans person who studies gender to discuss the gender aspect as opposed to some doctor. In my experience, doctors aren't informed on trans issues unless they are specifically in that field or are trans themselves, so she seemed like an inappropriate interview subject for the topic of gender

"Assigned woman at birth"?????? You mean just WOMEN.