Why Endometriosis Patients Keep Getting Gaslit
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- Опубликовано: 11 сен 2024
- It’s not “just cramps”, pregnancy will not cure the disease, and yes (sigh)...even teens can get it. People with endometriosis keep getting gaslit. Why is their pain being dismissed? Our co-hosts Alok and Sheena talk about how the healthcare system has fallen short, and how social media is stepping in to help. Registered Nurse and Founder of the Endometriosis Coalition, Jenneh Rishe, shares her personal endo story, and how she’s using social media to bring awareness to the disease. Gynecological Surgeon @KarenTangMD joins us to bust some endo myths that even some doctors believe, and she gives us a behind-the-scenes look at diagnosing and treating this painful disease.
🩺🥼 Vitals is a series that’s taking a new approach to health and medicine. Hosts Alok Patel, MD, and Sheena Williams RN are going beyond the headlines to answer your questions on the latest health topics. No judgment, no taboos. Just 100% science-based information.
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Find our experts and hosts:
:: Alok Patel, MD ::
Website: alokpatelmd.com/
Twitter: @AlokPatelMD
Instagram: @alokpatelmd
:: Sheena William, RN ::
Twitter: @Keepingitkinky1
Instagram: @keepingitkinky
::Jenneh Rishe, BSN, RN ::
Website: www.theendo.co/
Twitter: @JayRishe @theendoco
Instagram: @lifeabove_illness @theendo.co
::Dr. Karen Tang::
RUclips:@ KarenTangMD
Instagram: @karentangmd
Want to learn more about endo? Check out the following organizations:
www.theendo.co/
nancysnookendo...
www.endofound....
endometriosisa...
👓 Fascinating reads if you want to learn more:
www.nature.com...
theconversatio...
www.wsj.com/ar...
www.npr.org/se...
www.prevention...
www.theguardia...
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!" 😣
We're thrilled to have you join us! Thank you for helping us dispel some of the misinformation that surrounds the disease.
I was just diagnosed just 2weeks ago, I tell my doctors I'm having brain fogs and they laugh and ask what does brain fog means. I'm an rn student. When you mentioned brain fog in the interview you had with TODAY, I wept so badly, and now I'm asking myself if I can go on with my studies.im in my final year in rn. I've been so scared cause having to study for exams and then get to the hall seeing the questions and knowing I read them and I can't remember, its crazy. I am personally thanking you cause I had to share your videos with the doctors now. In Africa with this disease we still have a long way to go. God bless you.🥰
I recently had surgery to remove my liver from my diaphragm. I'm 50 now, was diagnosed at 22 and had a full hysterectomy at 24. I was so badly gaslit by dr's I actually forgot I had it. I was told so often that everything was fine and then referred to Psych. That I really began believing I would never get help. If not for my husband I think I would have given up and ended my life. Of course surgery confirmed it was endo causing all my pain and now I'm able to engage in social media and hear other stories and know that there are people like yourself working hard to help women. I will now be able to advocate for myself and not despair that I can't be helped. Thank you from the core of my being for the work you do.
@KarenTangMD do you agree that endometriosis sheds like the endometrium? Or do you feel that a correction to this video is needed?
No wonder we don't have many effective treatments when we are spending what little research money we have to study ectopic endometrial tissue injected into the pelvic cavity, when endometriosis tissue is structurally and functionally different. This misinformation is just setting us further back.
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
I also have endo and developed a vomiting issue that was brushed off as anxiety and then GERD from the age of 15 they had me on ant acids for years which is a whole other issue 😵 I had excision surgery in July this year at 28years old and had one month of no pain or vomiting and now the nausea/ food aversions and pain are already coming back 😩
I was also told i have a low pain tolerance when I shot off the table during a endometrial biopsy that I was fully awake and not numbed for. I have such a high pain tolerance i didnt have to take any pain medication while recovering from abdominal surgery and walk around with a smile while at a constant 7-8 on the pain scale. 😅
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 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! :)
Thanks! we've been struck by how many friends and people we know came out of the woodwork when they heard we were working on this episode.
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 😓
And until you’ve been opened up and have those pictures of your insides everyone will tell you it’s just in your head.
I’ve told I’ve had this for years without the medication working for me 😢
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.
Very good here. What I'm going thru now! Doctors are not telling me what is happening...what or where I should go! The lap.. surgery. It is bad because I leave some appointments with no clue and the PAIN is not addressed! Which is major
Thank you so much for using inclusive language in this video (and your videos with Mama Doctor Jones) - it really does count 🏳️⚧️💕
You are so welcome!
thank you for spreading the word!
Of course! This is an area where we really could see knowledge improved.
My wife and I had a consultation with Dr Tang! Very sweet smart and understanding Dr!
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.
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 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??
Good luck! Hope all goes well.
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.
Yes! PCOS is extremely frustrating, and the fat-shaming is a tough hurdle. I'm so lucky that my husband works for a university with a top medical school, and I'm actually able to see a reproductive endocrinologist with no red tape.
Thanks, that could be another one to dig into.
Yes!! I have PCOS and even before I knew, my partner would tell me I had to watch what I eat due to my weight. Even after the diagnosis, his attitude is "oh! If you gain weight easier than the average person, then you should just eat less than the average person". He doesn't understand that his words are painful. He thinks he is helpful, and I think more information would be useful for him and others like him.
@@gnagerutstyr5886 That's awful. He definitely needs to be more understanding, but also just to be more respectful of your autonomy in general.
Weight is so much harder to lose with PCOSand so much easier to gain. I can eat like 2 meals a day and still gain weight sometimes, if I'm not being active enough. And sometimes you can't help but gain it (pregnancy for example). I gained like 10kgs (which is pretty normal) and haven't yet lost it almost a year later.
As an afab agender person, I appreciate the fact that you used inclusive language.
This can grow in horrifying places like the heart
It’s the most painful thing
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. 🙏
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.
A trans inclusive gyn?!? Where yall find her, what a gem 💕
THANK YOU SO MUCH ITS REALLY IMPORTANT
Drs took more than a quarter century to correctly dx me.
Everyone's story is the same suffering and late diagnosis 😭
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!!!
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.
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.
Thank you
Is it an autoimmune disorder?
Honestly, if men were affected like this, there would be so much more money invested. Always second class citizens.
Doc ,I need you. I have stage 4 endometriosis 😭
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
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.
Im upset they could have sent me to a pelvic specialist or something. If the doctors don't believe you then what .
How can i speak to Dr Tang? It's important and urgent.
I dont think they had autoimmun issues 1000 years ago..
Endometriosis does not shed like the endometrium, please don't spread misinformation as that is contributing to the problem.
Thisnis really important. Endometriosis is not the same as the endometrium. It lacks the glands and stroma for shedding. But because of the pervasive idea that it is and that it acts the same way, all of the animal studies involve simply injecting endometrium into the pelvic cavity and treating it as "endometriosis" when it's just ectopic endometrial tissue, not endometriosis. No wonder there are so few treatments when we are spending what little research money we get on studying the wrong condition.
Why is everyone yelling at the camera?
Because we're sick of being told nothing is wrong with us for actual DECADES.
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
We hit some of these topics in our episode with Jackson Bird and Dr. Izzy Lowell.. check it out: ruclips.net/video/KomI-XiiJw0/видео.html
I'm glad mine stopped 2 years ago. I never want it back.
☮🕊🏳⚧🏳🌈😘❤🧡💛💚💙💜💗🤎🖤🤍🤗🏳🌈🏳⚧🕊☮
Stopped meaning? You got rid of endo? Could you shrink your cyst? Please let us know how... It would be really helpful
"Assigned woman at birth"?????? You mean just WOMEN.
You're not a woman, you are a creature. It's what we nonbynary want to say!
No.
No.