The Most Common Disease You’ve Never Heard Of | Shannon Cohn | TEDxUniversityofMississippi

[@nunanuna7968]

When i hear someone talking about their struggles with endometriosis, i am not sure if I feel relieved or sad about it. Relieved because it makes me not feel so lonely but sad because deep down inside i wish no one else had to go through the same thing i do

[@jaii1992]

Girllll...... 💛🎗️

[@danadarr6772]

That's what I say I wouldn't put this on my enemy well idk jk but really it's been a rough road and life is already hard enough and then to have endometriosis omg 😳

[@myriamrosefort7305]

I am sad to eat that! It makes me cry when I watch them! I also have it!

[@hotmessmissy]

I think all of us endo sisters feel this very same way. Because it is painful and exhausting, we all deserve relief from this horrible debilitating pain

[@IAD22-y6m]

Same, I am happy at least they didn’t suffer like me until my diagnosed at 38.

[@paraboo8994]

14 years and twelve doctors. I was called a hypochondriac, a sissy, attention seeker and hysterical.

[@sadiemakesmesmile]

this makes me so angry!

[@jenniedevereaux2696]

I'm soo sorry you have been through this. Its bad enough being in agony and on top of that to be mocked and not believed. ❤️🌹🙏🏴󠁧󠁢󠁷󠁬󠁳󠁿

[@elaeda2225]

Things I’ve been told by my doctor: it’s anxiety, it’s ibs, it’s weak muscles. Really?? Weak muscles are causing me this pain in my 20s?!?

[@augusta.5089]

I think I have endometriosis and none of my doctors will listen to me even though I've passed out on the street before and told them I was in 'extreme pain worse than I've ever felt in my whole life'. Even my own mother thinks that I'm 'psychologically weak'. The feeling of being completely invisible is indescribable.

[@CapnKirkWhoLockedME]

Big mood. My mom thinks my pain is my anxiety.

[@vawkwardbat]

I'm so sorry to hear this :( keep seeing new doctors, naturopaths, anyone you can speak to.

[@sadiemakesmesmile]

I felt like you as well :( it is so sad and isolating. Find people who want to understand you. Then more and more you will be heard. Someone might suggest someone else, and you will find a doctor that gets it. Don't give up, and learn to advocate for yourself! You don't need your mom's permission, even your doctor's.

[@augusta.5089]

​@ITS_THE_ XEESH Just a lil update that you might find useful. A year has passed since I was feeling my most hopeless about everything and it really is true that with time things get better. I found medication that worked for me (mefenamic acid, babeyyy) and weirdly after years of pain my cramps have just kind of started to stop? I know this won't be the case for everyone, (I don't think I have endo, just severe cramps), but even with the pain the feeling of hopelessness and isolation does go away. I remember feeling trapped and like my entire life was never going to be the same again, but I promise if you feel that way now there will be a time when you will feel okay again and it will probably be a lot sooner than you think.

[@jemmastone11]

Ask to refer to a gynecologist that specializes in endo.

[@teresabarbosa1]

My story finally told. This brings tears to my eyes especially when you mentioned that the doctors could not diagnose the disease. Now at 42 Im infertile.

[@jasminetaylor5416]

Teresa Barbosa ❤️❤️

[@KniteStarz]

I'm 42 also. Only thing I ever wanted was a child and a family. This disease robbed me of that, and so much more. Sending love from an endosister.

[@athenaspsyche]

Same. 43 next month. Infertile as well

[@latazialane3383]

❤️

[@starrimoss7377]

@@KniteStarz can you try adopting/fostering?

[@jennypeck1186]

From one Endo sister to another, thank you for sharing your story.

[@sherpeters]

It's so sad how our Endo sisters are treated.

[@FMAiscool]

I would take any pain over period pain, and I'm not even sure I have endometriosis. People need to get off their asses and research this pain.

[@cindys2995]

I always thought that endometriosis just meant "painful periods". Similary to fibroids, and anything related to periods, it can be extremely undervalued and down-played. Due to my upcoming surgery for fibroids, I began to search YT for personal experiences and came across soooo many women, mostly young, who had this disease. What floored me was the fact that it can attach to other organs!!! I am so sorry for anyone going through this terrible disease. We really do need awareness, research, trials, studies, etc., to make diagnosis come WAAAY earlier.

[@violetmoon6233]

Cindy Sinclair hey sister, they found my endometriosis during my fibroid removal. Hope your ok 💖

[@jillianmckelvey1259]

Thank you for such compassion - so healing just to be validated + believed ..blessings upon you xx

[@veryangrypigeon]

We need more of these talks! I feel so betrayed. Everybody gets to have a nice life but I get endometriosis at 13 and BAM I stopped being a happy, healthy kid almost overnight. Nobody thought it was even a little bit odd as if it was part of puberty to suddenly become a depressed recluse. It's not. The fragmentation of medical care is true also in nordic countries. I've had countless tests done from blood to GI- to asthma to imaging tests that all came out clear. For 18 years nobody connected the dots until I was past my 30's and my ovarian cyst was finally visible in ultrasound. I don't know if I can get my life back anymore. I feel frustrated even now, having to keep all my doctors separately updated by myself. I need both strong hormonal and psychiatric medications. I'm NOT an expert on how these drugs work together yet it somehow falls on me alone to figure things out. It's easier to treat someone who only has migraines. It's a hell of a lot more demanding to treat someone who has migraines, IBS, endometriosis, chronic pain, chronic fatigue, nerve pain, weak immune system, PMS, mental disorders and whatnot. They're all connected but the sad truth I have experienced is that if you have too many symptoms you are more likely to just get ignored alltogether. Most doctors only stare at CRP and when endo doesn't affect CRP you get the "overreactive" stamp and only until you lose the ability to work completely and it is almost too late will something be done. Maybe.

[@melcampbell-tapp7733]

Wow ver yangr ypigeon, your comment resonates with me...! I have many of these symptoms (all?) but erroneously thought it was fibro (turns out the fibro is a symptom), or myalgic encephalomyelitis (ms was ruled out) Following this ted talk and seeing these comments now I wonder if perhaps it might actually be endo. Huh. In my case this has been an 8 year thing so far, many issues etc and here in Canada I have had much the same experience you refer to with very siloed health care specialists (and long wait times). Frustrating! Missing out on life!

[@veryangrypigeon]

I've read that (don't have the sources handy right now, sorry) women with endo often have fibro or CFS along with the endo and that we tend to have more nerve tissue than those not affected. Many also have depression and psychiatric conditions which imo is a very natural follow up of having any chronic illness. Especially chronic pain illness. I don't know if I have fibro but I have random nerve pain all over my body and my pain threshold is low. I just started a new psychiatric med that should eventually raise my pain threshold. If you have chronic pain then I think it's only logical that eventually your nerves will go haywire and you get even more sensitive to pain. A physiotherapist also told me that if you can't exercise(painful, exhaustion) and are in generally bad shape then the nerve tissue will also shrink and be affected negatively. Missing out on life describes it all perfectly. I hope you find what works for you. It's such a long road even after diagnosis to find what works. If you suspect endo then you could try some endo/pms apps or just track down your symptoms in a diary. I did this after diagnosis and found that during my cycle I would always get symptoms when my estrogen levels were jumping up and down. Almost as if I was allergic to estrogen.

[@melcampbell-tapp7733]

You might be interested in a non drug approach to manage pain etc., a program called Dynamic Neural Retraining, designed to address the limbic system disorder that is thought by many to be at the root of cfs/chronic pain/fibro/multiple chemical sensitivities/ems sensitivity. It is a method whereby you build new neural pathways, enabling the limbic system to calm down, causing pain perception to return to 'normal' which for many is a complete cure. It is a practice, done daily for as long as it takes...some say they see immediate relief within days, others take up to 6 mos. Check it, interesting stuff and I am trying it. I do believe my pain is less now than it was before I started the program (I am only a week into it...). Good luck to you as well, it IS a long road (and a lonely one) but it is possible to improve.

[@user-mg3no4mf8t]

veryangrypigeon not everyone gets to have a nice life

[@jessicannew]

@@melcampbell-tapp7733 Please keep in mind that endometriosis is a very *physical* condition -- women are in pain due to the spread of the endometriosis and related adhesions, twisting fallopian tubes, vovarian cysts, bowel problems, etc. -- so it isn't just a matter of "normal" vs "abnormal" pain perception. Granted, I imagine it may be true that a practice which reduces pain perception could potentially help with pain that has a physical driver. Just want to clear up any potential misconception about endometriosis.

[@puppetpusher]

This needs all the awareness it can get!! It took me 14 years for a diagnosis.

[@ainemcdonnelll]

It’s INSANE how all our stories are the same.

[@Theultrateam4]

Endometriosis and pcos needs to be talked about more my dr completely blew me off yet I am positive I have one or both of these and don’t know what to do next!!!

[@CapnKirkWhoLockedME]

Sami Agee keep finding doctors because that’s what I’m doing

[@Piapia650]

I have pcos, endometriosis and fibroids and ppl still think its all in my head

[@amys5505]

Same, same, SAME! Cracks me up that (per usual) your comment ends with “I don’t know what to do next!” and instead of answers, just more commenters in the same boat, myself included 😞

[@lauren23160]

Finally diagnosed myself with Endo at the age of 30 after convincing an obgyn to open me up. My symptoms began at age 8. I spent 22 years at more doctor offices and hospitals than I can count. I was given antidepressants and benzodiazepines and was told to see multiple psychiatrists and psychologists. Someone please set our medical system on fire because I have no faith left in it.

[@rochwilliams4626]

What were you symptoms? I have been to countless doctors done ultrasound and other test. But my obgyn is saying that my symptoms are not that of endometriosis

[@rockwoodie2joedirt]

This talk made me cry- thank you for raising awareness about this disease. So far I’ve been through three family practitioners, two gynecologists, a gi-specialist and a nutritionist- that’s 7 medical professionals within the past year. Finally, I get fed up with everyone telling me it’s nothing, and I talk to my friend who tells me about this birthing center that does women’s health appointments with a nurse practitioner. So I go thinking it’ll just be another dr who brushes my symptoms off as “just a bad period” or ibs or something... and the nurse practitioner is the first person to even mention endometriosis to me! I’d already had tons of blood tests, a colonoscopy, several different medications for ibs, Pap smears, several pelvic exams, AND a transvaginal ultrasound. All within a single year and all of them came back normal. My regular doctor told me it was probably just ibs or muscle soreness and told me to take gasex. (And this is after I’d already had and told her about several episodes of horrible, “I think I’m gonna pass out take me to the ER” pain.) I mean, I've had a kidney infection and not even that pain was comparable to this. The line in the video where she says sometimes you have to go to work and can’t even stand up straight... that hit me so hard. I feel ridiculous sometimes, like my pain is imaginary- there have been times where I seriously doubt myself- if maybe I am over reacting. Maybe I am a hypochondriac. And then my period comes again and I’m reminded of how REAL my pain is- how this is definitely not normal. I’m just so thankful to have finally found a doctor who seems to be listening to my pain, and is helping me figure out the root of the problem instead of dismissing me with a “catch-all” diagnosis of anxiety or ibs. And to think I had to go to the most seemingly unlikely place- a birthing center! - before someone listened to me. (I’m only 23, and likely wouldn’t have stepped foot in a place for pregnancy well before 30).

[@EileenHagerman]

When I was 18 years old, I had an episode where I was in so much pain from my period that I couldn't drive myself all the way home from school. I stopped at a gas station to call my dad to come get me--this was back in 1999/2000 before everyone had cell phones. I asked the clerk if I could use the phone, and as they went to hand it to me, I collapsed right there in the gas station. Naturally, they called an ambulance, and, as long as I live, I will never forget the ER doctor, post-exam, playfully slapping me on the foot and and telling me "Well, you're a woman, so you have to be tough." Once they determined that I wasn't pregnant or having a miscarriage, they completely dismissed me and even poked fun at me after I--an otherwise healthy looking 18 year-old--passed out in a gas station because of the unbearable excruciating pain I was in. It had been going on since I was 15--passing out, vomiting, being completely incapacitated, sweating profusely while sobbing and writhing around in the pain for hours and hours at a time. That is NOT NORMAL.

You are right. That is nor normal. You are not alone! Your endo sisters are here too.

[@PnnexD]

It's insane and unbelievable that this still keeps happening... I'm so sorry for what you had to go through. I hope things got better for you!

[@MimiBrookes]

I have suffered for so long since I was in 8th grade. And now being 20 I still suffer from the debilitating pain and am seeking a cure. This helped me so much! Thank you!!

[@jenniferhaas6109]

Thank you!! For spreading awareness!! We all so desperately need better understanding, better more effective treatments and hopefully one day a cure.. I myself have had 24 surgeries excision, ablation, hysterectomy, and double oophorectomy.. I have done lupron, femera, danizol, birth control and pain management.. I am still fighting.. Looking forward to more surgery soon.. This needs to stop..

[@reinmusique]

Jennifer Watson. Your bravery is nothing short of fucking inspiring! much love!!

[@jenniferhaas6109]

Annique Cilliers Thank you, just fighting like the rest of us for a actual quality of life.. Endo robs us of that a lot..

[@Berenicedolls]

Fighting with you

[@amandaredden2822]

Hysterectomy didn’t solve things? I’ve had surgery twice and now people close to me keep suggesting hysterectomy as if it’s going to fix everything.

[@mrussick22]

Hey Jennifer, have you tried going vegan? It's helped me so much. Animal products are very inflammatory for the body and only worsen endo. Since I've stopped eating meat, eggs, and dairy, my symptoms are almost completely gone. I also no longer eat refined sugars, swapping white flour for whole grain and have noticed a huge difference. Please look into this. Much love to you!

[@claresmith4501]

this is so important

[@radhikag5541]

Clare Smith

[@nataliemaklouf]

Thank you for this. We who suffer from this debilitating disease deserve a cure and to be heard.

[@kirinmakker9078]

So grateful this video has been produced! I've suffered for 30+ years. It's shaped my life in profound ways and yet so few know what it is. Let's end this endo terror for future women!

[@chelsey8737]

As soon as I saw the title and her picture I immediately knew it was endometriosis. My sister and 2 of my aunts have it. Its awful

[@gug1970]

and its likely your mother and her mother had some symptoms but less severe. Its likely you're all hypothyroid. Endo its a symptom of an underactive thyroid (which is often never confirmed by a TSH test - which is pretty much useless). Endo is caused by estrogen dominance (ie insufficient progesterone) because without adequate thyroid hormone you CAN NOT produce progesterone - full stop. One requires the other. - the result is estrogen dominance. But nearly all the time doctors are looking in the wrong place. Its in your neck, not between your legs. Wife suffered for years (less when taking the pill (because the pill is basically progesterone, so it basically supplements your natural inability to produce it yourself)... Sorted out her thyroid issues and basically doesn't any more. Had 7cm endometrioma which experts said would never shrink... last measured at < 4cms. No more clutching a pillow for 2-3 days a month and all the other unpleasentaries. Too often, videos dont seem to address the actual cause (or claim there is no cure... which is wrong they just havent figured it out yet) . You need to support your thyroid. Your thyroid could be underperforming for a number of different reasons from a genuine TSH problem (but often not and therefore not detected by a TSH test to familial disfunction (if your mother had hypo you most likely will too (its to do with all the mitochondria being in the egg before fertilisation - which is why these problems follow the female line) to insufficient Iodine and ATP cofactors, To an inability to convert T4 to T3, to too much reverse T3, to poor stomach acid (resulting in autoimmune antibodies attacking your thyroid as collateral damage when trying to deal with foreign proteins in the blood), to too great an exposure to Chlorine, Fluorine and Bromine (all, iodine-like halogens that block your cells iodine receptors), sometimes its too low cholesterol (thats right ! - cholesterol is the foundation of hormone production - you cant make hormones without cholesterol) - maybe its a mixture of all of those..... Google, Dr David Brownstein, Dr Jorge Flechas, the iodine project , Mark Starr (type 2 hypothyroidism). Follow the clues. What do they prescribe to alleviate symptoms ? They put you on the pill (progesterone) - They recommend a mirena coil (synthetic progesterone) , they recommend Natural Progesterone cream (again.. progesterone (obviously)) . The problem is a lack of progesterone - VERY often caused by the knock on effect of an (often solvable) thyroid issue. Endometriosis is pretty much curable. I've seen it with my own eyes.

[@8randi]

I saw the title and thought it was gonna be about PMDD

[@lynncrf]

This is true, but the issue is even when you optimise thyroid levels with T3 this only stops the endo from growing. So you still need to have it excised.

[@hiefia8568]

@@gug1970 what is the best test for thyroid problems?

[@miad6160]

@@gug1970 so what you’re saying is, it’s doctors refusing to update their education- therefore they don’t know what’s going on. Sounds pretty accurate to me.

[@lepalove6787]

Im crying listening to this video ...

[@nicolewulf5919]

I told my doctors I’m having endometriosis, no one believed me... at times I thought I’m crazy... next month I will have my first surgery to remove the endometriosis...I’m 39 and I believe firmly it started for me when I was 26 years old.

[@romakolobkova5749]

There r ways to stop it. Our body can even digest Cancer within us. Read Dr Kelly Book "One Answer To Cancer" - how body can cure cancer without surgery. This condition is much milder and can be changed by diet, excersise, homeopathy, aurveda. Don't liste no Doctors who make salaries off surgeries. Surgery allows cells to spread much more around the body..it puts problem completely out of control and requires many more surgeries....search out a way to let body heal itself...listen Dr Berg (endometriosis and diet)

[@brianamarshall2780]

I absolutely loved watching this video! I have been having increasing abdominal pain the last 6 years. I have had several trips to different emergency rooms where they would hand me a $20,000 bill and tell me that I was just constipated and I needed to go home and take a laxative. When my husband and I wanted to try for a baby it took us 2 1/2 years of trying several different things. We tried ovulation predictors, basal temp, and even clomid. Right after our blessing from above turned 1 year old I started having even worse pain than before. I visited my OBGYN. She suspects that I may have endometriosis and we have tried the birth control and the lupron. We have also tried anti-inflammatories and pain medication. Nothing has worked. I now cant even be intimate with my husband. The doctor wants to do the surgery but I don't qualify for any assistance and my husband and I cant afford monthly health insurance. Cash pay for this surgery at my hospital is very close to $6,000. Please pray for us as we figure out what we can do to get me pain free so I can live and enjoy my life.

[@hannahparry166]

The "constipation" diagnosis has happened to me too many times to count! After years of knowing something is wrong and being told I'm constipated or have IBS, I'm finally getting surgery this year! I have my pre-op appointment tomorrow 🤞🤞

[@MB-wx2jp]

Try to find a visceral manipulation therapist if you haven't yet.

[@bethrahne3312]

Awareness is the first step to getting the answers we deserve. I'm glad to see someone speaking out about this disease.

[@paytonrose1701]

Currently crying. Thank you for speaking about us and how we feel . Thank you

[@reservaecologicakantu8172]

We definitely need to spread awareness about endometriosis. I found out I had it only last year, I've had extremely painful periods for many years and this has really affected my life in so many ways. I encourage us women to be more synchronized with our bodies, listen to your body, love it and respect it. This is a great talk, very informative! I really do hope that in a near future women don't have to suffer from this.

[@adreamscosplay4423]

I’m having a laparoscopy soon because my doctor thinks I have endo. This background seems so familiar... I have spent a decade trying to find a diagnosis for my symptoms. Specialists, tests, I’ve done it all. This is the first time I have even heard of endometriosis and your story resonates deeply... but we will know soon. Thank you for sharing your story.

[@karanpreetkaurjohar6177]

She is telling everything I could tell people when they ask me to “man up” when I was fainting with pain. I have been suffering with endometriosis for 10 years and every month I have been in hospital with sweat chills, fainting, lost pulse and almost dead with appy stink in my heart. I just wish people could understand it better.

[@jessicabrauman]

I started having pelvic pain at 10 years old. Now at 23 I'm finally getting treatment.

[@aina_reve]

Hi, what treatment? I was proscribed painkillers and birth control pills

[@jessicabrauman]

@@aina_reve hormonal therapy such as birth control pills or a hormonal IUD tends to be the base treatment for endometriosis, as it helps minimise (or even completely stop) the menstrual cycle. This can stop a lot of the pain and also reduce the growth of new lesions. However, it cannot remove the lesions or scar tissue that already exist. If you are still having severe pain, the next step in treatment is often laparoscopic (keyhole) surgery to remove the lesions and scar tissue. On top of this, many people's pain can be reduced greatly by seeing a pelvic floor physiotherapist. Since making the original comment over two years ago, I have done all of these things and my quality of life has improved greatly. Most effective for me has been switching from birth control pills to a hormonal IUD. There are way fewer side effects and for me I've found it to be much more effective at controlling pain. It has also helped a lot with my PCOS. I hope this helps!

[@aina_reve]

@@jessicabrauman thank you very much for your reply ❤️

[@Cv_224]

Beyond important, beyond!!! She nailed every issue to do with society and health care concerning women's health. I work in Healthcare and I have been witness to these matters and issues. I am and have experienced the lack of knowledge and experience surrounding this disease. It's scary!! I am my own health advocate. Thankfully through my experience, research and working in the system I know how to navigate it. But many woman do not!!! This is a huge fkn problem. If you need help, reach out to woman, join groups online, talk to someone who knows your suffering and learn more about this disease. Anything you can and journal your experience. This was huge for me.

[@vivimedina5925]

Has anyone else suffered from a UTERUS RUPTURED CAUSED BY ENDO? I was diagnosed at thirty one year old with stage four endometriosis. I started suffering with debilitating period pain when I was twelve and by the time I was diagnosed I was in pain three weeks out of the month. I couldn’t get pregnant and that is the only reason the doctors listen. I got pregnant on my first IVF cycle, that was the happiest time of my life. Non the less I still had severe pain during pregnancy, when I went to the doctors they didn’t believe me, they thought I was seeking pain killers and they asked me if I wanted a drug baby? Two days later I was back in the ER with the worst physical pain I have ever felt. I was admitted to the hospital but as usual the doctors didn’t know what was wrong with me. At twenty-one weeks pregnant, my uterus ruptured…they were not able to save my baby. I was told that they were able to save my life because I was in the hospital when it happened. I was in a coma for eleven days and underwent several surgeries. It took me four months to physically recover but I haven’t recover from the pain of loosing Sebastian my baby boy. I had to have an emergency hysterectomy and I will never have children of my own. That has been the greatest pain in my life. Endometriosis did not go away I still have debilitating pain, fatigue, depression and anxiety. If this was a male disease there would be a cure by now.

[@hiefia8568]

Sorry my dear

[@96Dreamdancer]

Amen! Thank you so much for this, that was literally the story of my life. Misunderstood for over 7 years and now I finally found a doctor who believes me and I have an appointment to schedule the surgery soon. I’m hoping to get some answers but no one gets this debilitating pain until they get it

[@thejaswinipeddiraju7414]

A female nurse in a renowned hospital was showing weird attitude to me when I was crying with endometriosis and adenomyosis pain and had no patience to help me.. I gained all the energy and made her run out of the room! This is the support we are getting. The pain is more during some tests and when tears are rolling out from my eyes the female nurses are discussing that I am crying but not one asked me why?. Endo sisters doesn't want your sympathy but give them moral support.. it will really help, holding hands in pain is a kind of relaxation. You don't have to bear the pain, but be with the ones who are going through it. We are stronger than you all can imagine!

[@snehakothari2850]

Thanks for spreading awareness. It took 17 years for me and my doctors to realise I had endometriosis. It kills me to think behind the days that were horrible.

[@lorrieweir6230]

Thank you! We are not alone and we need to fight for our health and quality of life...no matter what any doctor says.

[@KW-cv5me]

This needed to be said so many years ago. Thank you for saying it now for those of us who need to be heard.

[@danadarr6772]

I finally hear from ppl that go thru what I do

[@jennymck7320]

I was told it was anxiety, in my head and told to just sleep more. I have endometriosis. 😔

[@aina1786]

my eyes got teary at the end of this video. stay strong everyone

[@AshleeRohnert]

Thank you Shannon! Thank you Ted for giving her an opportunity to spread awareness!

[@kp1850]

I'm crying! In my case, that was - 7 years, 9 doctors (regular visits to 4 of them)... No surgeries yet, but I'm just 22. I do not really see myself a mother at this point - and I am preparing mentally to be either adopting or just being "self-sufficient"

[@deadinside8719]

Me too Doctor told me get pregnant It can cure endometriosis as I am in first stage but I don't want kid I am so confused

[@lyannintriago5995]

I'm literally in tears listening to this 😩 this has been my life for so long. hearing someone finally say out loud. finally advocating for us is AMAZING ❤️😩 thank you so much for this! does anyone know if this is in Spanish?

[@julessmith1633]

It's nice to know that she was able to have children. I have stage 2 and I'm struggling with infertility.

[@cindyjuly6314]

This TedX resonated with me. I had terrible fague, nausea and a deep back pain where I couldn't walk most mornings for almost a year, which started at 35 years old. I have a long history of painful periods which were masked by birth control. The last two years I went to three different specialists plus an osteopath, multiple phyiotherapists and numerous doctors. I've had expensive MRI's and X-rays, a bone test (which showed inflammation around the pelvic region, but was ignored). I spent thousands of dollars seeing doctors. Two doctors told me the pain was in my head, that pilates would help the back pain. Physically the tests showed I was a healthy young woman. My newest doctor urged me to get an ultrasound since I have a history of painful periods. I had a scan and it showed I had a 9cm ovarian cyst so I was referred to a gynaecologist. I told the obgyn about my history, symptoms and back pain and he said to me "I strongly suspect endometriosis. We need to get the cyst out asap and if there is endometriosis I will remove it." It has taken 20 years for this diagnosis. At 18 I ended up in hospital with terrible ovary pain mid cycle. Now at 38 I had the cyst and endometriosis removed, and my back is suddenly pain free. I can't believe it. I'm in absolute shock and cannot believe doctors did not pick this up sooner. I can't imagine how bad it can be for other women. I live in an affluent country with easy access to good doctors and surgeons and it was still this difficult to get a diagnosis. I'm looking forward to the new me - I just had surgery a week ago.

[@disneyprincessintraining2725]

Thank you!!! I have minimal issues with my periods, but I have multiple friends who have symptoms akin to this, and the idea that extremely painful periods are normal is ingrained in them! It pains me to see so many women suffering and being too intimidated to get the help they need!!

[@jenniferrobinson2000]

Me an 2 of my sister's one had to have complete hysterectomy with no children!I told doctors for years!Every medical doctor needs more training in this field!!

[@politaimpelli9950]

THANK YOU Shannon! Thanks from all of us who hear our own stories on your words 💪❤

[@alyssaciervo]

im 19 and ive had all these test come back normal and losing help this gave me hope

[@SheWhoWalksSilently]

It's not PCOS is it?

[@cigdi7391]

I've had the same..My pain was awful, my Gynaecologist had a strong suspicion that it is endometriosis. After the laparoscopy the doctor came into my hospital room and said that I am healthy..nothing was found. But I knew something was wrong! I'm glad my Gynaecologist was highly informed about endometriosis and followed to search for it. A few weeks after it, I got an MRI where you could see a little cyst in my ileopsoas(muscle) and in the back. The surgeon wasn't able to see those because it was intramuscular. And now, months later my pain got worse and in my control MRI is full of many endometriosis cysts on my ovaries and you could even see the adenomyosis in this MRI! The ultrasound at the Gynaecologist right after didn't showed any of those! Please don't give up

[@bellah4831]

I have diagnosed Adenomyosis and Pcos. I’ve had an ablation and D&C. I have a regular dialogue with my GP because of this. I’ve had MRI’s and countless internal US. Every year without fail I have months of extreme cramping and back pain. I went to see a new (to me) female Gyno as I had moved towns. She’s was an older woman (in her 50’s) and was rated one of the best for fertility and endocrine issues. The appt cost me $180, lasted 15 minutes and she told me point blank, I don’t have Adeno as pain only occurs during a period and that it was musculoskeletal....I told my GP who literally lol’d when I told him and he even apologised for sending me to her in the first place. Needless to say, she is no longer on his preferred specialist list.

[@vie51]

So sorry to hear that! May I ask how does your back pain feel like? I too experience that but not sure whether it is considered “pain” because everyone keeps telling me I just need to work out more…

[@Terri48]

I had it for years. Ppl rolled their eyes.

[@dlbhanlon]

You just told my story. Thank you!

[@charlottelilly9330]

Thank you for speaking on all our behalf. It gives me the drive to keep educating the people around me on endometriosis. Together we will keep bringing awareness disease until everyone is AWARE and EDUCATED. Endotalk💛

[@vie51]

May I know how your lower back pain feels like? Do you have hip and thigh pain along with it? I told my gyn this symptom, but she didn’t even care to listen up. So, I’m trying to self diagnose

[@charlottelilly9330]

@@vie51 It truly depends on the individual. When I was at my worst the pain would start as a dull ache and progress to a feeling of my lower back muscles tightening. (The pain would stop and start again as if I were in labor.) Also, burning and a stabbing feeling as well. Honestly, I would feel pain everywhere in my body, it was not localized to one area. For me, it just depends on how bad my flare was. I hope this information helps you. My first suggestion is to start a dairy: Log- All food and beverages consumed. Stress levels for that day and write down where you felt the pain and severity.

[@MadieyHH]

Us as women need to bring more awareness about this disease it took me 12 years to finally figure it out.... There should be documentaries, commercials, books, pamphlets,etc.....

[@amberknighten5313]

As I'm typing this I'm lying in a hospital bed. Just had my first surgery yesterday. A hysterectomy. Had stage 4 endometriosis and had no idea!!!

[@sunnyray4065]

I know its been two years but how are you since all this happened?

[@amberknighten5313]

I'm doing great!!! Thankful the pain is gone!

[@sunnyray4065]

@@amberknighten5313 ah that's so good. My doctors think I have Endometriosis as I have had a few symptoms for years but had pain more frequently over the past few months. Were your symptoms subtle enough to go unnoticed for years or were they severe?

[@amberknighten5313]

@@sunnyray4065 I had symptoms for a few years and I was misdiagnosed a few times. When the pain got too severe I had to go to the ER. Endometriosis is hard to diagnose.

[@veganatheistwitch]

I've been suffering with what many of my doctors have thought might be Endometriosis for nearly twenty years now. Finally, after over a year of trying to get pregnant with no results, I'm getting scheduled for laparoscopic surgery to see what's going on. I don't expect a cure but a little relief and the assurance that I haven't been bouncing around between doctors and hospitals to "get attention" would be nice. Being able to have kids would be a plus as well but I'm not getting my hopes too high.

[@mackenziehottes9970]

I really hope all goes well. When I had the surgery it didn’t help me. I hope the best for you.

[@Thobela-h3x]

Hoping all went well for you.

[@veganatheistwitch]

When I had my Laparoscopic/DaVinci Surgery they did find Stage 1 Endometriosis but they also found Pelvic Congestion Syndrome (Varicose veins in the abdomen) as well as Ormond's Disease/AKA Retroperitoneal Fibrosis. The incidence of RPF is only somewhere between 1 case in 200,000-500,000 people per year. Because I was in the early stages they were able to do a ureterolysis procedure, freeing my ureter that was being affected. It's a progressive fibrosis disease and from my understanding, it sometimes isn't caught until people go into kidney failure or they can even suffer from bowel necrosis. I'm glad I pushed my doctors to do exploratory surgery and that everything was caught in a fairly early stage. It is a shame though that I had to suffer for twenty years, going to the ER so many times and seeing so many different doctors (Internal Medicine, Gynecologists, Urologists) who never were able to diagnose me. The issues never showed up on X-Ray, Ultrasounds, CTScan or MRI or may possibly even been misread as other issues (ovarian cyst, tilted uterus etc.)

[@shim3717]

I miss so much school because of this disease. I’m going to get a surgery in 2018 though! I hope it helps.

[@hawaali4115]

Did you do the surgery?

[@susannyambura6319]

Thanks for powerful words.

[@angelacmarko]

THANK YOU!!!! This is SO incredibly important. #1in10WomenEndoAwareness

[@zoeparasiliti4382]

Thank you for talking about this. No one knows unless people talk. I've been sitting here for the last 15 years suffering with PMDD, only realizing that there are a whole lot of other things I didn't even know should be checked and can be easily fixed. But you can fix them until you know they are there.

[@TaraDoherty]

A great talk, and so important that this is getting more awareness. If you want to know more her documentary called Endo What? was released last year.

[@HeatherJacobsen]

I like that she said no one should have to have a hysterectomy for endo. I was told that I would have to have one for adenomyosis, but I was able to overcome it naturally. It is possible!

[@tjsloth6347]

May I ask what you used naturally to treat adenomyosis?

[@HeatherJacobsen]

i did it all through diet and lifestyle change, as well as making sure my thyroid was in good order. I've started a Facebook group to help others if you are interested: facebook.com/groups/589736121215881/

[@tjsloth6347]

thank you!

[@veryangrypigeon]

Sometimes the illnesses naturally go into remission but they can come back again. Diet can help a lot of the symptoms but it is not a cure nor will it always work. Just a friendly reminder. I was on the FODMAP diet for two years and my endo symptoms were in remission but it did come back worse and diet doesn't work anymore. There are also xenoestrogens to avoid in daily life, soy protein, some detergents, parabens etc. It's a lot of work.

[@HeatherJacobsen]

For me, the paleo + low FODMAPs diet helped. (no soy allowed, and yes, I watch out for xenoestrogens, too). Also, two other big factors: thyroid health and stress. People know that stress is an issue for health, but don't always take steps to really combat the stress. I hope that helps!

[@tatianall4639]

I so understand that. It is so heartbreaking.... No one talks about it. I just went under a surgery and I am just recovering.Thank you for sharing.

[@Nicolealexandratran]

Thank you for bringing awareness

[@staindheartt5136]

I'm so glad I found this. It made me cry. I have endometriosis, and I have 2 girls. I just pray they don't have to go through this. It is so hard sometines. Thank you!

[@tybaby79]

OMG this is MY STORY....THANK YOU!

[@Etigress]

My doctor is certain I have endo and now I have to see a specialist to get a diagnosis. I'm really worried about it. I have had all the symptoms for the past 2 years and they're getting worse. It's so bad I have to take 2-3 days off from work each month. My boss is a man who doesn't understand and he he gets angry with me because I take so much time off. But it's nice to know there are lots of woman going through the same pains I'm going through.

[@emiliajager2581]

Just wanted to tell you that I had the exact same experience. I have had it for nearly 4 years with terrible crazy pain during my cycle and weird tenderness all the time. I also took time off work, maybe 6 days per month and felt so bad about it! Because there isn't the education, people at work just think I'm away for period pain when it's so much more than that. It made my anxiety worse too. I have decided now to get Laparoscopic surgery to see what's going on. Even though it feels horrible, we will get through it! :) Also, I just found out there's a specialised ultrasound for endometriosis called "deep infiltrating endometriosis scan" and they can see the endometriosis on this. It's different to normal internal scans where it usually doesn't show up. I just found out about it and getting it done to see how severe mine is before getting surgery. All the best with everything! xx

[@natalieeverett2057]

Thanks for sharing your experience. It is my hope that we can bring about more awareness and understanding, and that more healthcare professionals will specialize in this area.

[@GM-uv9xv]

It took me 6 years to find out! Thank you

[@thegomez82]

This is EXACTLY what I'm suffering with and I need a specialist to help me.

[@stampinturtles]

I could cry for her. All the tests came back normal. So frustrating. My daughter is struggling with severe pain. Everyone says she’s dramatic. Or just trying to get out of doing chores. But I know she’s not overreacting to the pain. It hurts her. We are just now looking into IBS. We have an appointment with the GI doctor in April. I think maybe she might have endometriosis. We are doing a food journal and adding in vitamins and probiotics. I’m actually fasting and praying for God to heal her. 🙏🏻🙏🏻🙏🏻

[@eyonwomon21]

Amazing! Love this! hope it gets a lot of views, especially seeing as its Endometriosis awareness month now

[@DustieRee]

I have Endometriosis and PCOS. It took FOREVER to get diagnosed! I remember my dad getting SOOO mad because my mom put me on birth control. He didn't believe that it would help me with MORE than preventing babies. It was awful and embarrassing at 10 years old.

[@jenniedevereaux2696]

Oh dear God thank you for this video. I am in agony and have been constantly told that the pain is in my head. I'm 47 and 5years ago i experienced chronic lower back pain. Bloating and stabbing pain like really bad pmt in my lower abdominal area. I dont bleed but i feel sick a lot. Plus pelvic pain that cripples me over. I've seen several Dr's and all they tell me is that its in my brain because my bloods are fine. I am going out of my mind with it. 🏴󠁧󠁢󠁷󠁬󠁳󠁿

[@KaseleleahFilmsInc]

Thank you so much for this important talk. Greater awareness is definitely the right direction. Until there's a 'pharmaceutical' cure (and there may never be, given the reasons provided in this talk), I can recommend fellow-sufferers a midfulness yoga and meditation lifestyle for its management. I was diagnosed and operated on for a stage 4, over 10 years ago. I adopted this lifestyle and it has helped me live my life to the fullest. If it weren't for this 'dis'ease, I would not have learned how to live a life of 'ease'. It's not that the pain etc goes away, it's that you learn to live with ease about it. This is a much better choice than to let it 'ruin' your life. It's your choice.

[@claireloukelly]

This is amazing- thanks Shannon! Your story is so similar to mine!

[@creativehands-w8d]

I think it’s important to remember, though medication can relieve pain associated with Endo, Endo continues to grow each month. I ignored it when my doctors suspected it at age 22 by 35, I lost my fertility, my career, home as a result of financial instability, marriage due to physical and mental anguish, health due to crippling pain. The loss of my fertility hands down will be the biggest loss of them all. I desperately wanted to be identified as a mother. As a result labeled “ situationally depressed” with a major loss of identity with absolutely no prior history of mental illness. I have since regained my purpose and mental stability but, I will forever be changed and perhaps with direct action at age 22, ( surgery and stage 1), I would not have reached critical stage 4 with multiple organ entanglement. Just my life story, maybe meant to be? I do however deeply regret not having surgery day one of diagnosis.

[@brenda.lizeth]

I was diagnosed with ovarian cysts (both ovaries) about a year ago. I've only been through ultrasounds and transvaginals, I was put on birth control pills, apparently the b.c.p helped shrink the cysts, BUT i now have a 3rd cyst. The doctor said it was endometriomas, which basically meant endometriosis. No surgeries yet... I'm going on the depo shot this coming Thursday (5/2/19). My period cramps feels like contractions, my joints ache, sometimes even when I'm not on my period, i get sharp pain near my ovaries and uterus. I'm always feeling fatigued, I struggle to get up in the mornings. I can wake up on time, but the physical part, that's a different story... It's very frustrating

[@SamPatel-xd5rc]

Take Ayurved treatment or homeopathic treatment for the problems

[@gug1970]

Hi, its likely hypothyroidism.... ignore TSH tests, that simply tests 1 aspect of about 6 or 7 indicators and its often negative for people with thyroid problems.... Endo its a symptom of an underactive thyroid (which is often never confirmed by a TSH test - which is pretty much useless). Endo is caused by estrogen dominance (ie insufficient progesterone) because without adequate thyroid hormone you CAN NOT produce progesterone - full stop. One requires the other. - the result is estrogen dominance. But nearly all the time doctors are looking in the wrong place. Its in your neck, not between your legs. Wife suffered for years (less when taking the pill (because the pill is basically progesterone, so it basically supplements your natural inability to produce it yourself)... Sorted out her thyroid issues and basically doesn't any more. Had 7cm endometrioma which experts said would never shrink... last measured at < 4cms. No more clutching a pillow for 2-3 days a month and all the other unpleasentaries. Too often, videos dont seem to address the actual cause (or claim there is no cure... which is wrong they just havent figured it out yet) . You need to support your thyroid. Your thyroid could be underperforming for a number of different reasons from a genuine TSH problem (but often not and therefore not detected by a TSH test to familial disfunction (if your mother had hypo you most likely will too (its to do with all the mitochondria being in the egg before fertilisation - which is why these problems follow the female line) to insufficient Iodine and ATP cofactors, To an inability to convert T4 to T3, to too much reverse T3, to poor stomach acid (resulting in autoimmune antibodies attacking your thyroid as collateral damage when trying to deal with foreign proteins in the blood), to too great an exposure to Chlorine, Fluorine and Bromine (all, iodine-like halogens that block your cells iodine receptors), sometimes its too low cholesterol (thats right ! - cholesterol is the foundation of hormone production - you cant make hormones without cholesterol) - maybe its a mixture of all of those..... Google, Dr David Brownstein, Dr Jorge Flechas, the iodine project , Mark Starr (type 2 hypothyroidism). Follow the clues. What do they prescribe to alleviate symptoms ? They put you on the pill (progesterone) - They recommend a mirena coil (synthetic progesterone) , they recommend Natural Progesterone cream (again.. progesterone (obviously)) . The problem is a lack of progesterone - VERY often caused by the knock on effect of an (often solvable) thyroid issue. Endometriosis is pretty much curable. I've seen it with my own eyes.

[@asunday2207]

Thank you & Amen

[@lncausey2708]

Thanks for sharing I appreciate this I believe I have this,! Now finding a new OBGYN!!

[@essellun1333]

I was diagnosed as having GI discomfort. I had undergone endoscopy as the Dr. doubt about it. The exam result is clear. That was 5 years ago. The stomach discomfort didn't stop and doctor rude out it's gastric problem. Last year March 2020, the pain was so severely unbearable, had fever and vomiting. Iwas so scared and thought I caught Corona virus. We went to hospital and found out that I was having ovarian cyst and abscess. I undergone antibiotics and scheduled for operation. It was totally a night mare. If I was diagnosed correctly earlier the cyst and abscess might not grow that big. I advise all women to have a regular check up. This kind of awareness also helps a lot. Keep spreading TED 🙏

[@summermurray3632]

Thank you.....

[@Gracie15XD]

Thank you for this ❤️

[@AmandaDunagin]

I've had terrible painful periods and one doctor suggested it might be endometriosis but wasn't really willing to do anything about it. I didn't have any other symptoms other than pain. It wasn't until I couldn't get pregnant that a doctor decided to take a look and found out it was fibroids.

[@ameliabrittain158]

I have had horrific cramps ever since I got my period. Exactly how she described it, at the beginning of my period I would be in so much pain I felt like passing out and I couldn’t do anything, I also had GI symptoms all the time. I was told the same thing, that sometimes periods are painful and I just need to get over it. I eventually went to the doctor for birth control, and I described my symptoms and that’s when they told me I probably had endometriosis. I had no idea!!! I spent years and years in pain from a disease and I was never informed about it! It’s a big issue and there needs to be work done to get a cure.

[@ankitasingh1349]

I feel sad when I hear this word, it changed my world , I was always told that being a women everyone has the same symptoms during periods and I adapted that pain, everyone thought I was doing to seek attention and the result came after 8-9 years that I have grade 4 endometriosis with big funny cricket ball size cyst living inside me. Irony is everyone thinks its still a drama :/

[@healthybodyhealthymind7756]

This video deserves more views

[@justjoy7194]

Now in my 60s, and still being ignored of this terrible pain, yet never even heard of this. ER Doctors give me anti anxiety drugs, only had one surgery, where a tumor was found, one left in my spleen. The pain has taken over my life. As well as the pain meds Doctors just want me gone. I keep fighting, but so tired of being ignored, because I am a woman.

[@olafouad6782]

Horse Lover I thought the pain will disappear after the period stops

[@breesechick]

Nope, unfortunately the disease is still in the organs, and the scar tissue and adhesions don't go away after menopause. You're still screwed 😓

[@dianesharp7807]

I missed school days over cramps. I've been home from work now for 6 months because the pain is now constant and I work in a very physical field. In my case, my uterus is now adhered to my abdominal wall and I'm awaiting a hysterectomy. I was ashamed to ask for pain meds, even though one of my organs is literally attached to another body part.

[@abinaya9972]

Amazing love this.. thanks for it

[@marthakerr9393]

Awesome talk, thank you!

[@genericwoman3713]

Amazing talk

[@anarubio1774]

I got recently diagnosed by endometriosis. I'm waiting for surgery still. In the last three years I've been having bowel problems. They got worse with time. After visiting my doctor multiple times, she just did a few tests (blood and feces analysis). Since everything was correct, she rule out multiple problems and diagnosed me with IBS (irritable bowel syndrome). I underwent a long and restrictive diet, which didn't help at all. After telling my nutricionist that I still had the symptoms with or without all the restricted aliments on the diet, she told me that maybe a swallow air while eating, or that I shouldn't drink while eating, and so on. I felt misunderstood, so I finished the treatment. Luckily for me, I ask in Facebook group for some natural remedies for IBS, and some women told me that I should check for endometriosis. In that moment I made conexión between my bowel problems and my painful periods, and it all made a little bit more sense. I asked my GP and she send me to a gynecologist. And finally, I got diagnosed correctly. Now that I've watched this video, I can't stop myself from tearing up, cause I've never felt so understood. Sometimes I would tell myself that I was just a dramatic person, that I was somehow weak and that my pain wasn't that bad. Now I understand, and I will not judge myself so lightly anymore. I just hope that more women in the same situation as me will search for help and put pressure in the Healthcare system. Thank you for sharing!

[@gcmvincentesq]

I can relate so much and the worse thing is coming from a 3rd world country Sierra Leone, our Doctors can’t even diagnose such. So I only rely on google for diagnostics and management. I really wish I can raise awareness for such in my country.

[@deadinside8719]

That's so sad I don't know what to say Stay strong,ain't gonna say that You are already so much strong

[@sarasvarad8371]

Great speech. I too suffer from endi and

[@HollyBynoe]

Thank you for this! 🙏🏽

[@Jo-mz4il]

just got diagnosed (age 23) and finding solace in other endosisters stories. they found a cyst via MRI after 18 months of pain around my tailbone and 8 years experiencing symptoms of this

[@ginac1239]

I have adeno but had a similar journey with GPs saying it was just part of periods and being a woman, and I so agree that you have to push and work hard til you find someone who will take treatment ideas on board for you.

[@eleanor3497]

I’m 12. When I was 9 I got my period, on my 5th or 6th period I started getting blood clots the size of golf balls, I couldn’t walk because of the pain, I also had huge ovarian cysts. I had a surgery to remove my ovarian cysts and my doctor ended up finding what we were expecting, but not expecting to find at that exact time... when I was 11 I was diagnosed with endometriosis. I had one more surgery and now take medication so I don’t get my period at all

[@JoceyXcore]

The Sloth birth control? Or another medication ?

[@eleanor3497]

Jocelin Narciso-Molina birth control and another thing I always forget the name of.. I’ll check later if you want. Birth control stops the symptoms but not the disease, eventually I’ll need another surgery to help, but probably not for a long time.

[@JoceyXcore]

The Sloth I would definitely like to know the name actually that would be helpful. I'm sorry you're going through so much.💝

[@EvellySnow]

3 years later things are pretty much still the same, someone tag me if in the future an accurate treatment is discovered.