What is endometriosis, and why does make life so painful for 10 percent of women and people with uteruses around the world?
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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. 5 reasons... everything about endo sucks
Is it normal for a female as young as 14 to have this? Because I'm 14 and I have been diagnosed with endometriosis but I have never asked my doctor if it's normal coz I have only heard of women in their 30s getting this. I have been put on the depo to help it and was told to never go to the contraceptive pill because I have high risks of strokes. I was told once I'm old enough they recommend having the surgery done but that it only last a year until until everything grows back again
Thank you for this video! I'm new to all this and am having my first lap soon. On top of this being very informative, I really like your personality and sense of humor. Number 3 was soooo relatable and had me laughing :) Thanks for that! Subscribing right now.
I have since I was 17... Now I'm 32. Chronic pain, always feel bad and people don't understand or don't want to.... And you feel lonely all the time and constantly fight with the pain and all the other symptoms wishing that someday you will have a better and good "normal" life (wishing is the only thing left... I keep dreaming a normal life but... Reality tells me the true😞)
Laying here at the start of a horrible endo pain flare up trying to distract myself and this truly made me laugh (and nearly cry...thanks hormone imbalance! lol) so thank you very much for explaining this complex condition so concisely and with so much humor!
Endometriosis is destroying my relationship with the father of my child. It really sucks... I have the diagnosis, but no medical help. My doctor knows nothing about it and even thinks that I might have IBS just because she doesn't want to find a specialist to refer me to. They only found my endometriosis because I had a tumor in my ovary that was larger than my ovary that my mom and I weren't even told about until over 6 months after they found it because my doctor at the time just didn't want to tell us. I had to see a gynecologist who right away said that it should be removed and sent me to get it looked at by a surgeon that he trusted, who had me in surgery two days after I saw him. Luckily he was able to get it out without having to remove any of the ovary, and when he saw the endometriosis he took it upon himself to remove that as well. Treatment where I live is a crock. Doctors treat me like I'm a hypochondriac
I also had the first gynecologist that I went to, (a women) who my mom took me too because I had been on "my time" for OVER a YEAR tell me that I just hadn't started ovulation. That my eggs hadn't started being released yet. She didn't even look at me, she just talked to me. The appointment could have been done over the phone, but instead she had my mother take me out of school early and drive 2 hours just to tell me that. She even drew me these stupid little pictures
Women are taught to think that severe cramps are ok. They're not! You don't have to suffer! Go to the doctor! Endometriosis is incredibly underdiagnosed and doctors often times brush off your symptoms and give you pills, which really sucks.
luckily I got diagnosed earlier on at 23, but looking back I always had moments in my teenage years where I would be stuck without a tampon and my friends would give me one of their... and it be a 'light' tampon. I remember thinking "she must really be different 'cus who the hell uses LIGHT tampons". Well, now I know I was the one that had abnormal periods.
This is Awesome! Great video! I just got diagnosed 3 weeks ago. Even though our vlog wasn't showing us upbeat when we got the news...its fun finding videos like yours that make you smile when talking about something like endometriosis.
Stage 3 endometriosis and adenomyosis. Daily pain that requires morphing and infertile. Don't even get me started on the bleeding! It took me 8 years to her diagnosed, I had been suffering from my first period age 12. I was just told I would grow out of it and stuck on the pill. I can't have sex currently due to the pain and it really impacts my sexuality and how feminine I feel. For such a common disease it's crazy how little is known about the disease and how many myths there are. Getting pregnant doesn't cure endometriosis and nor does a hysterectomy, yet people and even Drs say they do. It's terrifying x
It's really a lot more than 10%. 10 precent is only the officially diagnosed ones with lap surgery. I read somewhere that autopsy showed that it's about 50% of all women who follow the Western diet. So probably has something to do also with environmental factors and diet partially
Hello hoping you could help me understand this disease.
I'm 19 and newly married I took the depo shot that fxxxed up my life. recently got my period after 9 months and having all these weird symptoms pain in my hips like something is trying to rip me in two. I didn't even know this existed until my mom told be about this. Can I still get pregnant?? :(
So I take it it's hard to diagnose from the comments? Most of the women in my family have very debilitating ugh...cramps during that time of the month. Perhaps they have this? It's worth bringing to their attention, I think.
I have endometriosis that is so severe that I sleep 16 hours a day sometimes! It is incredibly debilitating, and I have been misdiagnosed so many times. I have to travel very far to my gyno because no other doctor gives a crap! I've had it since I were 14. I have been in and out of ER's since then--many doctors saying everything from Polycystic Ovary Syndrome, to PMS, to saying I was just "prone to cysts during my period." It's now grown to the point where it is all over my body and causes constant pain, not just during my period. The other day someone told me "oh don't worry, it'll all go away when you have kids." Ehem. Um. No???? Pregnancy doesn't cure endometriosis, and screw you for assuming I'm having kids! I'm not a damn baby oven!!
Thank you for this video. No one appreciates how severe endo is. Illnesses that effect vaginas in particular are treated so terribly, and women are treated like they simply whine too much when they go to the doctor. Unfortunately, Yentl syndrome is a thing.
Maybe you could do a video or a podcast on how gynecologists need to be more compassionate when treating sexual assault survivors. I don't feel this gets talked about and a lot of people avoid treatment because so many doctors are apathetic and don't value consent.
I knew a girl that was told at 16 she needed a hysterectomy then but she held out until she was 20 or 21 before removing it. It was so bad she had it on her lungs. The docs told her she'd get an infection or all her organs to fuse together if she didn't have it removed. Her colon & bladder had fused with her uterus from it.
Endo is an absolute nightmare to deal with! Constant medication (some with horrible side effects), heat pads and hot water bottles become your best friend and the simplest of tasks are difficult on bad days, and to top it all off, the only way to diagnose is an operation! There is no cure, but there are a lot of women out there who day after day kick endos butt and show just how incredibly strong they are. I'm proud to say I'm an endo warrior ❤
I'm just getting my diagnosis for endo! It's taken 5 or 6 doctors which have mostly just ignored the pain I'm in. My doctor believed me when I was doubled up in her office and could barely talk I was in so much pain. She asked what was wrong, I said this was just my normal period pain. Then she told me she's sending me for surgery. :L
All of this is terrible, but true. I was diagnosed when I was 11. I'm now 18. The only reason mine was discovered so early was because my mother and her mother had it, so my mother insisted that they find out if that was the cause of my pain as well.
Had a gyno tell me that pain was all part of being a women. Had a different gyno tell me that after having a kid the pain would get better (I had JUST started my period.. so no thank you) I was told by yet a different gyno that I might have endometriosis but he said he wasn't sure because it has to be surgically diagnosed after which there is no treatment so he recommened trying birth control that might reduce the pain, though It did seem like he was trying to market the skyla. -____-
I don't even want to think how incredibly painful and devastating Endometriosis has been for me. All the surgeries, complications, infertility, pain, fatigue and how much it can truly control your life at times. I've had it since I was young, so I learned to deal with pain and disability a long time ago. It made me a stronger person but that's a heck of a way to do it! This disease almost took me out a couple of times! It needs awareness, funding for research and much more understanding. Thank you for this video Cristan.
Fun fact about Endometriosis: If your aunt (father's sister) has it, any daughters your father has have an increased chance of having the condition. It runs through paternal line. So technically, genetically, it's men's fault women get it.
I understand why there are accusations of sexism tossed around when discussing Endometriosis, and I am sure that it's a factor, but let's cut the doctors a little slack here. Endometriosis is extremely difficult to diagnosis. It's not like there is a blood test that a doctor can do to get a yes or no answer.
Just like most other illnesses that can only be diagnosed by patient's self-reporting of symptoms, it should simply be expected that Endometriosis will be underdiagnosed.
Considering that the only way to know for sure is to cut someone open to see the Endometriosis growing all over the place, perhaps it is indeed wise to rule out other possibilities before getting out the knives.
And no, I am in no way justifying that it takes five doctors and ten years to diagnose Endometriosis. There definitely needs to be an educational campaign advising doctors of the existence of Endometriosis, and that one-in-ten statistic to show doctors that it is a real possibility that their patients might have it.
+DivaAvgusta I did not know there was a blood test for Endometriosis.
This makes for an entirely different situation. If there is a blood test, then why is it not prescribed, even if only to rule out the possibility of Endometriosis?
Is the cost for this test some crazy high number, like $80,000 per test? If so, then the issue is not sexism, but extreme profiteering in the pharmaceutical industry (they charge crazy high prices for medicines and tests for men as well).
In such a scenario, then doctors would avoid doing this test because of insane insurance paperwork, not sexism.
Putting this matter aside, read the last paragraph of my post. "There definitely needs to be an educational campaign advising doctors of the existence of Endometriosis, and that one-in-ten statistic to show doctors that it is a real possibility that their patients might have it." Also, read the first. "I understand why there are accusations of sexism tossed around when discussing Endometriosis, and I am sure that it's a factor." You and I may disagree with the extent to which sexism is a factor, but we both are aiming for the same goal, Endometriosis diagnosed sooner. While I do believe that many doctors are discounting the self-reported symptoms that women describe, which is sexism, I also believe that if doctors were better informed about Endometriosis, they would take this illness more seriously. What solution do you purpose? End sexism? Good luck. Even 200 years from now there will still be some sexism around. What I purpose has a chance of actually working.
+abrahamchapman Considering that I just had a blood test for endometriosis, and that there is a special endometriosis centre in my country where they confirm your diagnosis by giving you an MRI kinda ruins your line of argumentation don't you think?
Thank you so much for making this video. <3 I have endometriosis and I really appreciate this. I am still told I do not have it but I definitely do and I just kind of have to deal with it on my own. I am 19, almost 20. My grandmother died of uterine cancer at 55.
I was diagnosed with endometriosis this year. I have a rather unusual case though, as I have almost no pain at all, even less than women without the disease. My surgery was supposed to be just a cystectomy, as they weren't going away on their own, and ended with my diagnosis and the loss of one ovary. Losing the ovary doesn't upset me but it does scare me that the lack of pain seems to have allowed the situation to go unchecked until things were really serious.
A family member of mine had been shamed at the gyno several times for wanting birth control when she was younger, despite trying different doctors, which scared her from getting regular check ups throughout her life. She developed severe endometriosis and a uteral tumor, that led to hospitalization and emergency (and unfortunately early) hysterectomy, having to go to through menopause in her late 30s (her ovaries had to be removed as well). What could have been caught early if doctors had provided a SAFE AND HELPFUL environment, instead led to a traumatic event in her life and for those who care about her.
And to anyone who thinks this is a "woman's problem," women's reproductive rights extend FAR beyond benefiting the individual woman. If someone is shamed into requesting birth control, testing for STDs, or getting check ups for potentially life threatening conditions, then its not only endangering HER life, but her PARTNERS' health, and possible future children. Her empowerment is everyone's empowerment.
Thank you for this video. These are the types of topics that need to be brought up when people start talking about the birth control "debate." Especially since getting on the pill will often help to alleviate symptoms and sometimes hold off the worsening of such conditions. The marginalizing of feeling like one of your internal organs is being pulled inside-out is INFURIATING! And completely unacceptable! No woman should ever hear that she needs to "suck it up because it's not that bad"! It IS that bad for some of us, and if those people knew what that was like, they wouldn't be so rude about it - they'd have Empathy.
So, thank you! I wish we could bring this to the national stage more easily.
! We need a "Uterus Awareness Month!" And it needs full, national coverage!
Thank you for making this video. I had surgery last week and they found endometriosis. I'm one of the lucky women who only had to wait two and half years and go through four doctors before someone took me seriously and didn't blame it on my IBS or depression (yes they actually tried to blame it on my mental illness, telling me that I was just going to the doctors "for attention"). Thank you for making me feel less alone in this new diagnosis. <3
I was diagnosed with endometriosis this year and had surgery to remove it. I still consider myself lucky as I had a great gp (he was the one who first suggested it) and a supportive mother (who probably had undiagnosed endometriosis) who both encouraged me to take control of my body and didn't tell me the pain was normal or just to get over it. My life is now a lot better without the endometriosis and with an IUS to prevent reoccurrence. I'm happier in my relationship and I no longer have to factor in taking at least two days off each 28 days just to deal with the pain.
Cristen this video made my heart feeeel so warm & fuzzy. I've lived with endometriosis since I was 12 and spend more than half my life in bed & like you said, it really REALLY REALLY sucks.
I am making it my life goal to bring endometriosis & invisible illness/disability awareness everywhere I go and to see you talking about it as well is SO encouraging.
My uterus thanks you for the support. :3
I have adenomyosis. The easiest way I can think of to describe it is that it is like having endometriosis inside your uterus rather than outside. It causes severe pain, bleeding, and general weakness. It took me at least 10 years from the onset (14-15 is when I started having really bad pain and heavy periods) to getting a diagnosis (when I was 25 and seeing my 4th gynecologist for this issue). Before that I was told by many doctors and nurses, including women, that pain was just part of periods, and was also misdiagnosed with fibroids. I may also have endometriosis, as they tend to go together as well. Adenomyosis also typically doesn't affect women until they are in their 30s and have had kids- the doctor who diagnosed me said I was the youngest patient she had personally seen with the disease. And yes, it sucks.
I'm pretty sure I have this because before I went on the pill, my time of the month was an excruciating battle. Having a "normal" period while on BC in comparison is seriously like night and day. I can understand now why other people would say "suck it up" or "every girl has cramps, get over it" "other girls can handle it fine", they have NO freakin' idea. I'm a little fearful of when I want to start having kids because going off BC sounds like a nightmare.
+KryssySushi That is great to hear! Thank you for taking the time to let me know that. I'm also wondering about that time between going off the pill and actually getting pregnant. Hopefully that wouldn't be enough time to cause problems for the pregnancy but the potential pain and all that "fun" stuff that occurred before taking the pill...
+YouShotMyRobot I have endo, so does my aunt, and I have a couple of friends with it too. In my experience, pregnancy is only a nightmare if your uterus &/or ovaries have been torn up by cysts. If you were put on the pill early enough, you're probably pretty safe to have kids because the pill keeps the cysts at bay. The cysts are the real threat that destroys fertility. Pregnancy and Menopause actually cures it because they turn off the hormones that cause all the problems.
Even on the pill I still can't function when cramps hit. I have a different condition, and the pill does help a ton, but it's not a magic bullet. No one should ever tell anyone to "deal with it because it's not that bad." Ever. Feeling like one of your internal organs is being pulled inside-out through your crotch shouldn't be marginalized like that.
Thank you so much for this video, and for podcast, on the subject of Endo. Being told that the chronic pain once a month between the ages of 12 and 18 was aweful, and it took four doctors to diagnose it with my first surgery at age 19. I am now 20 and experimenting with hormone treatments to try and control the pain, which is now a daily occurrence (opposed to monthly), and I've now had two surgeries. The fact that no one in my life knew what endometriosis was before I explained it was disheartening, but this video helping to bring awareness is AMAZING. Thank you!
I once heard that a teacher at a conservative school district near me got into trouble for telling a kid she had endometriosis (because he asked what was wrong). The parents and school deemed it sexual and inappropriate.
thank you for helping raise awareness. I suffered for years with endo that had reached as far as my kidneys. I also had ovarian cysts and tumors. I underwent 4 sugeries and on the 5th they found a cancerous spot on my uterus and suggested a radical hystorectomy. At the ripe old age of 28 I was in menopause. I don't miss the pain but I wouldn't wish a hystorectomy on anyone either. it's infuriating how little is done for women who suffer with this horrendous disease!
My cousin has this. She's going for her second surgery this Friday and she's only 23. She's going to have a lifetime of surgeries and pain unless she makes the big choice to have a hysterectomy. Life just isn't fair.
I just wanted to thank you for the first informative piece on endo I've ever seen that uses language that's inclusive of people with uteruses who aren't women.
I suffer from endometriosis and have chronic pain from it that's so severe I need the assistance of a cane/crutch to stand up or walk for more than 15-20 minutes. I can't take most medications that are commonly used to control the condition and I'm in the process of pursuing a hysterectomy to even begin to control the condition, which has been incredibly difficult as I'm only 20 years old so there's a lot of what you called clinical sexism at play here because almost every time I bring up my desire to have the offending piece of my body which is unnecessary for survival removed, it's always "but what if you want children later?', nevermind the fact that I'm transgender and would have pursued the operation regardless of my health. I'd really love to see a follow up video elaborating on the subject of how clinical sexism affects people's ability to receive proper treatment for very "gendered" health conditions! Thank you again for bringing attention to this horribly overlooked condition, it means a lot to me.
I have endometriosis, and because of the huge amounts of pain that debilitated me every month when my period rolled around, I take the pill 100% of the time and never get my period anymore. It doesn't stop all the pain, depending what's going on internally, but it does get rid of the period pain. It's totally safe as long as your doctor prescribes you a low estrogen pill (this prevents there from being any uterine lining build up that needs to be shed). I haven't had my period in 10 years and it is a God send. If and when you decide to have children you simply go off the pill like any other woman.
Women on both sides of my family have endometriosis and I'm nearly positive that I do as well. I've seen 8 different doctors over the course of 15 years and no one will believe me when I tell them how much pain I'm in. I've been to the emergency room multiple times and have even had to bring family members with me to help my case. At one point, after my mom demanded that we get some answers, one doctor simply said, "Well we can't just cut open every woman that thinks she has it." Now my husband and I are ready to try for a baby and I'm terrified that my issues have been ignored for too long.
I have a friend who just recently had a full hysterectomy to get relief from endo. They only left her cervix because they had been digging around for a long enough period. They couldn't even find one of her ovaries and had to check her charts to make sure it hadn't been previously removed. Her uterus and bladder had swapped places. Her doctor said it was the worst case they had seen. I've known this friend for about 15 years now, and she has suffered with this for as long as I have known her.
Hi Cristen! Can you please talk about egg donation?? I recently came across with an ad (I didn't knew that you could in my country) and I was wondering if it's safe or generally more information. Thanx!!
Is endometriosis genetic? My mom is confirmed to have it, and I myself have always had difficult periods, enough that I would pass out from the pain. From what my mom has told me (she had the same issues growing up), it can't be diagnosed until after your first child. Is that also true?
I think one of the huge factors in the under-diagnosis of endo is that women often normalize period pain. I had huge, flashing warning signs of the disease but didn't say anything because I thought periods were supposed to hurt that much. I wish I had spoken up sooner. I would have spent much less of my life curled up in bed.
I was getting symptoms before I even started. Then once I started it was actually the girl doctors who got in the way of a diagnosis. I was told by a woman gynecologist that my period that last OVER a YEAR was normal because I just hadn't started ovulation. Not to mention they only found it because I had a tumor in my ovary and they had to remove it and at the time my doctor didn't even tell me or my mom that I had a tumor, (and yes, she was aware of it) we didn't find out until I went to a male gynecologist. And then he sent me to a surgeon right away, who after looking at it, had me in surgery 2 days later. That's when he found my endometriosis. He was amazing, so thankful for him. He saved my ovary.
I literally thought everything was normal until I started having sex and it hurt hats when I went to the gyno with all of my symptoms and before I even saw him I saw a nurse practitioner and she immediately said it sounded like I have endo and then the gyno offered me surgery right away and 2 months later I was diagnosed at 18. I was very lucky, but at the same time I had seen at least 3 gynos/doctors and all they said was since I was so young started my period at eleven it was normal to have 2 periods a month and pain.nthis gyno was literally my savior.
Thank you so much for giving women with Endo a voice. Sometimes the pain is so bad all over my stomach and bowels that I can't even sit comfortable it stand up straight. And my Endo is not as painful as other women. We need doctors who listen to their patients and look for all causes of these types if symptoms.
Endo sucks! I get a lot of eye rolls and "every girl deals with cramps so get over and don't be a baby", from people. They don't realize that endo can make it hard to breath or that the scars of destruction it leaves behind can cause so many problems for your body. Thanks for the video! :)
That "every girl deals with cramps" thing needs to die anyway. It's rude, marginalizing, and severely lacking in empathy. And, not EVERY woman has bad cramps. Some lucky ladies barely have any pain on their periods. Then there are those of us who need meds like birth control to survive the week of death. -_- We're not all the same, we never have been, and we never will be.
I knew a girl with endo in high school. Sometimes she had to go to the hospital because her cramps were so bad, the doctors told her she wasn't gonna be able to have kids but she still went for it despite only being 17, and at 6 weeks she miscarried after that i never saw her in class. :/
+Federica Morales Great idea! It stretches kinda like an elastic donut. I did a podcast all about it way back when: http://www.stuffmomnevertoldyou.com/podcasts/should-we-care-about-hymens/. Laci Green also has an A+ breakdown on it.
Thank you so much for raising awareness for endo, as a young person suffering from this awful chronic pain disease I know first hand that it is only going to get worse from here, im lucky enough that I don't find sex painful, but as this runs in both sides of my family I know just how bad it can get, me and my best friend both have endo and can say100% that it certainly does affect those close to us especially our partners.. But I'm lucky my partner supports me and cares enough to help me through the difficult days