Lily Williams was 12 when she got her period. It took her another 14 years to learn what’s wrong with it.
Williams belonged to 10% of women of reproductive age who suffer from Endometriosis. Despite being one of the most common gynecological conditions, this gruesome illness still takes a shocking average of 7.5 years to get diagnosed.
Eventually, Lily got the medical attention that her condition required. But not without going through years and years of living hell. Hoping that more women like her gain access to the resources they need to get better, she created a comic about the struggles she went through.
More info: lilywilliamsart.com | Facebook | Instagram | Twitter
Williams said endometriosis completely took over her. “It did its best to ruin my life over the course of those 14 years that I went undiagnosed,” she told Bored Panda. “I developed many symptoms that would stick around daily, not just when I was menstruating. I had chronic fatigue, developed new food allergies, chest pain, extreme nausea, sciatica, pelvic pain, bloating, pain with exercise, leg aches and more. My daily life got so bad it hurt me to do the most basic things like walk, sit, and eat.”
The woman had the more intensive LAPEX excision surgery (versus the more common laparoscopic ablation) and she took a full month off of work. “I spent a lot of time laying down and taking tiny walks every day. Taking this much time off of work was difficult because I am self-employed and in the middle of the deadline on my graphic novel Go With The Flow (no paid sick leave for me!). There is no cure for endometriosis and even being a year out of LAPEX excision surgery with an endometriosis expert, I am and still dealing with doctors and physical therapists to treat the side effects that all those endometriosis symptoms have had on my body from going undiagnosed for so long. Endometriosis will always be a part of my life.”
Williams’ new graphic novel is called Go With The Flow. She illustrated and co-wrote it with Karen Schneemann, and it’s about their friends in high school creating a menstrual revolution. There’s also a teenage girl named Brit who’s trying to figure out if she has endometriosis. “It has resources in the back for those who think their periods might not be ‘normal’. My hope is that it helps someone figure out that their pain isn’t normal far earlier than I did. Also, I got diagnosed and had my surgery in the middle of making this book! If anyone reads my comic and thinks they have endometriosis, I would recommend joining the Facebook group called Nancy’s Nook Endometriosis Education.“
Here’s what people said after reading Lily’s story
Yeah, I got told it was IBS... funny how it only ever happened around my period. Even had an exploratory laparoscopy and they missed it. Unless you see a gynae who is an endometriosis expert they usually miss it. Desperately wanted a hysterectomy but I was told no... in case I changed my mind about the children I did not want.
I spent seven years fighting for my right to a hysterectomy due to extreme period pain. I finally won and got the surgery last month. Turns out I was riddled with endometriosis. No doctor had ever taken me seriously so no one had ever considered it. The surgeons introduced me to a researcher afterward who was studying how poorly treated women with endometriosis are by doctors - it is a serious and widespread issue. But the hysterectomy was definitely worth the fight - no more pain, and my 'IBS' also magically disappeared.
Load More Replies...
I was diagnosed with endometriosis when my ovary cyst broke apart, filled my abdomen with blood and nearly killed me. They performed a fast surgery removing the cyst and sucking out the blood and released me home. No meds, no further instructions, no nothing. My husbands ex told be about one type of pills and my ob gyn approved and ever since that I live a normal life. Been 5 years. Oh yeah, and I can't have kids, case stepping from the pills causes the cyst to form immediately endangering to break again and land me on the surgery table. So yeah. And no, endo awarness in my country is somewhere in the medieval ages, so I can dream of the surgery described here. Life sucks :)
OMG. That's so similar to my story! The cyst broke; they diagnosed endo after months ofa gony on my part; then I was told, "Wait for menopause." That was.... uh... yeah, let's not think of it. I was told ZERO and then was told (after I did my own work on it) that I didn't "qualify for a hysterectomy". Uh... WHAT? Welcome to the USA. Evrey pain since then, btw, I've been told must be my uterus. ARGH.
Load More Replies...
I had endo from my first period. I was 13. Now I am 34. I had several excision surgieries. I cannot go under another one, since I would probably not survive it. It was better after surgery for 1-2 years at best. And then it was worst than before because of postoperative adhesions. It is NOT curable at this state of medicine. We only mask symptoms sadly :( And most people will say "it cannot be that bad"
Do you mind if I ask why another excision would likely kill you? My story isn't much different than yours. I've had 9 excisions myself but I haven't received any warnings about having another one. Also, the one I hate more than "it cannot be that bad" is "I have endometriosis too. If I can push through the pain so could you."
Load More Replies...
I am 1 of 10 too. In October 2018 I got a quite bad and painful cramp during work that my workmates got really scared about it. Got into hospital and was diagnosed with Endometriosis. They had to take out my Uterus, one Ovarie and the Tubes. Stage 3 Endometriosis all over the abdominal cavity. I am painfree since then and feel great. Age 42. Half a life of suffering.
I wasn't diagnosed until I was 49, and had a hysterectomy. Because of endometriosis, I had to have invitro fertilization to have kids. My fallopian tubes became so scarred. I'm now 59. But I remember how it dictated my life. I always had to make sure I wasn't going to be having my period before I made plans. Because once I had it, it was at least 2 full days, curled up in the fetal position. To this day, most over the counter pain relievers won't work because I took so many in my younger years. When I finally talked the doctor into a hysterectomy (woman doctor, of course) I had to have a full abdominal, rather than laproscopic, so they could go in and scrape the endometrial tissue off my organs. I'm so glad that there is finally something being done about this disease. I noticed many years ago, they sure came up with that little blue pill awfully fast. I guess getting a boner is more important that the quality of women's lives.
Awful. I have it as well and just get palmed off all the time. Feel like giving up quite often. Oh - I read that the little blue pill was discovered by accident when trying to develop hypertension and angina treatments - they noticed it had an 'interesting' side effect.
Load More Replies...
I am almost 49, and has suffered all my life! Last week, jan 8, i was at the hospital, they still wont help me.. I am so tired of this s**t! (Yes, been diagnosed w IBS too 🙈)
I've been battling for years and now I've ended up with a hormone allergy as a result of the treatment, neurological damage and wheelchair bound and nausea. Here's my story https://www.dailymail.co.uk/femail/article-7801507/Woman-endometriosis-left-wheelchair-bound-severe-reaction-routine-treatment.html More deff needs to be done for us, especially now the hospital has washed its hands of me and unwilling to treat me for 18months because I took their meds religiously and am now in a huge mess. Keep telling me time will fix it but it's been 2.5 years. Ive lost my career twice, my house, my job and everything I'd build up to make a home through the side effected. I've had to resort to a gofundme to fund treatment. It's ridiculous!
If anyone can help Lyndsey with a donation on GoFundMe that would be amazing! Thanks https://www.gofundme.com/f/lyndseys-endo-battle
Load More Replies... In the 90s endometriosis surgery was NOT covered. At 25 I had 9 months of constant periods (3-4/month) and pain. I got the surgery and then was billed $7,000!!! The MALE insurance rep said it was "elective fertility treatment". I told him "but I'm in grad school, NOT married, I don't want kids yet". He said "it's a convenience surgery". I yelled " why the h@&$ is male impotence covered but a 9 month period is not ?" He hung up on me. It affected my credit, I had to declare "indigence". That was 1998. Now, surgery and Hormones are covered. Thank you, female lobbyists.
The surgery was covered by insurance in the 90s, but not by every provider. My mom had an excision in 1996 and our insurance paid for it.
Load More Replies...
I just recently went to the DR because I've been having extremely painful periods and wanted to make sure things were all right. He advised me to take vitamin D for my depression. ARE YOU KIDDING ME?!!!!
Twat of a doctor and sadly there are so many of them.
Load More Replies...
Thank you for extending the awareness of this disease and its historical poor treatment. It is an indictment of women's health (including transgender members who suffer as well) and a value statement about our willingness to listen and understand that 100-year-old myths do not treat endometriosis. As well gynecology supports drug therapies know to not treat, not stop progression and do great harm on down the patients' life span with damage to bones, heart, cognitive function and cause permanent bone pain in additioo n to thinning.
So the obvious&usual remark is 'how can something affect 1 in 10 so badly get so little attention?' --- 'if it affected men it would be well-known and sorted by now'.
If 176 million men had unbearable pain with sex, bowel movements and exercise? and were prescribed as treatment feminizing hormones, surgical castration or pregnancy? Endometriosis would be an international emergency to which we would transfer our combined defense budgets......
Load More Replies... I was 14 when I was diagnosed. My periods were extremely heavy and the pain was severe enough I would pass out or it would trigger a literally blinding migraine and focal partial seizure. I was lucky enough the first OGBYN I saw took my complaints seriously. When she heard I had endometriosis on both sides of my family, she scheduled the exploratory/excision right away. She still says it was the worst case she has ever seen and again, I was only 14. I had stage 4 in ALL my reproductive organs. I'm 34 now. I still see the same OGBYN. In last 20 years, I've had 9 excisions, tried every birth control created, and took Lupron. I've also battled opioid addiction because Percocet was the only thing that took the edge off my pain. Endometriosis is still destroying my body and my life. Sadly, I can't have a hysterectomy because I'm in heart failure...thanks to addiction and Lupron. But, there is some happiness to my story. I am the proud mama to a set of naturally conceived twins.
My mom has it too. She's been told she'd never have kids (well, lucky for me, that was not true). She had been told numerous times to "just deal with the pain" and that "it cannot be that bad". She was finally diagnosed at the age of 48 after having to take birth control pills without breaks for the majority of her life (which only caused other unsolicited health problems)...
I got my period when I was 11, and got diagnosed about 5 years ago. I'm taking pills and was told if I were to go though excision surgery it would only come back so they recomended I do it once I plan on gettting pregnant. Than again, I know a woman who went through excision surgery, got pregnant and then a cyst grew while she was pregnant - luckly it didn't cause problems for the baby... The pills help me a lot but I'm always affraid how they'll affect me getting pregnant in the future...
I live in the Czech Republic and I have been diagnosed with endometriosis. My gyneacologist has agreed to postpone hysterectomy in order to see, if we can "dry out" the endometrical cells. I have been on a prescription contraceptive Pill since November 2018 nonstop - without taking a break for the regular period. After I finish one set, I continue with another. No break. I haven't had a period since. God I feel great. Yes, I have put on weight but that is a small price to pay compared to the torture of crippling periods. My blood tests show an immense improvement. I have seeked a second opinion on the matter and I was assured that this is the best way to go - dry the buggers out - because if you have a hysterectomy but your ovaries still function, the cells inside your abdomen react to the hormones as if you were on your period and cause havoc in your abdomen regardess of you having a uterus or not. So my uterus is peacefully resting and the cells are slowly dying of old age inside my abdomen. Ivona
Lily Williams, thank you for posting this. It's frightening and inexcusable that it took so long for a medical professional to give you a correct diagnosis. I had hear of endometriosis, but I didn't realize such a large percentage of women suffer from it. Women are all too frequently disregarded and misdiagnosed, whether for heart disease or endometriosis or many other illnesses/diseases.
It took me 18 years to get diagnosed. I went through a different doctor twice a year ever since age 11. each one of them said it's in my head, that everyone has pain. that I am too sensitive. that I can't handle little pain. etc.. Then one day my sister heard about awareness week on the radio and called me right away. told me to go check this weird name specifically. so I did. I was asked the same questions and gave the exact answers from doctors for the past 18 years. and what do you know?! all of a sudden I was diagnosed! i went through 22 different types of birth control and SO many types of pain killers only to learn that I have endometriosis AND adenomyosis. a few months later I had surgery and it's like all the terrible side effects were gone! I still have terrible pain. that's the adeno... nothing to do about that. but at least I have a doctor the believes me!
I had normal periods but I was not able to get pregnant. When going through menopause I had all sorts of aches and pains and went to the emergency room for what they said was anxiety. My back muscles still shake and sometimes seize up when I exercise. Not sure what all is attributed to having endo, but that would explain a lot of the unexplainable body pains that my doctors just shrug over. I also had an ovary removed that had a cyst. Wish something was done to get rid of the endo when I was in the prime of my life for reproducing. Now, no children.
Many years ago women used to be told "This will be cured by getting pregnant. Just have a baby!" At least nobody tells them that any more.
Bwahahahhaa. Yes they do. All the time. I've slapped last doc who said that to me right in the face... Not proud of violence, but proud that he magically took me seriously after that.
Load More Replies... Add me to the list. "Oh agonizing pain? Sorry, suck it up!" And then? I had a legit injury to my spine and was told, "Oh, it's your endo, get over it.".... Pardon? I had to relearn to walk, but hey, that was my *uterus*. (MRI showed it was my spine, btw. Took 6 months to get an MRI after an accident due to the assumption it was my endo, and that was after agony becuase I had endo anyway.)
I'm so glad you found the answer! I'm so tired of doctors not taking people seriously or not admitting they can't help( ok but then keep trying it find someone who can!) I hope a lot of women are this and get help they need.
I got my first period when I was 11. I also spent every school day period curled into the fetal position on a cot in the nurse’s office, occasionally vomiting into a basin because the pain was so awful. I have had doctors tell me it’s in my head, it’s IBS, there’s nothing they can do, take a Tylenol/Advil/Midol and you’ll be fine. Use a hot water bottle/heating pad. I didn’t have a mom to take me to an OB-GYN to see what was happening. It took THIRTY years of BS from doctors before I FINALLY got my diagnosis. Spoiler - still painful, treated with meds, offered the big H... Such a lack of empathy and sexism from a predominantly male profession. I’m not crazy. I have been ignored, dismissed and misdiagnosed for THIRTY years. I’ve been sent home from ERs doubled over in pain, bloated to the point that I looked 8 months pregnant, vomiting and more than miserable because “there’s nothing wrong with you and we can’t keep giving you pain medications, they’re addictive you know”...
Ok, I’ve had 2 laparoscopic surgeries to remove cysts and burn off endometrial scarring (myoma) the endo scarring has destroyed my Fallopian tubes so I can’t conceive. I would have to do IVF but I can’t come off “birth” control. Thanks for posting and bringing awareness but don’t give false hope. Just getting a doctor to believe you is hard enough, paying for surgery especially in USA is next to impossible. There is no cure. You can’t cut out cells. You can only burn off the scarring bc every time you menstruate the tissue grows and spreads. It’s a horrible disease.
I have a lot of these symptoms but they didn't start getting really bad until a few years ago the Dr. Said it's probably interstitial cystitis but none of those treatments seem to work except for therapeutic botox
As someone who has used alternative medicine to successfully treat (but not cure) a different (but equally misunderstood) debilitating chronic illness, I would like to say that the average alternative practitioner is as unlikely to be able to cure a severe chronic illness as the average western practitioner. Also, judging by your profile pic and your screen name you are male, and likely do not have endometriosis, so your opinion is not valid unless you are an expert medical practitioner specializing in endometriosis, which judging by your comments you are not.
Load More Replies... Yeah, I got told it was IBS... funny how it only ever happened around my period. Even had an exploratory laparoscopy and they missed it. Unless you see a gynae who is an endometriosis expert they usually miss it. Desperately wanted a hysterectomy but I was told no... in case I changed my mind about the children I did not want.
I spent seven years fighting for my right to a hysterectomy due to extreme period pain. I finally won and got the surgery last month. Turns out I was riddled with endometriosis. No doctor had ever taken me seriously so no one had ever considered it. The surgeons introduced me to a researcher afterward who was studying how poorly treated women with endometriosis are by doctors - it is a serious and widespread issue. But the hysterectomy was definitely worth the fight - no more pain, and my 'IBS' also magically disappeared.
Load More Replies... I was diagnosed with endometriosis when my ovary cyst broke apart, filled my abdomen with blood and nearly killed me. They performed a fast surgery removing the cyst and sucking out the blood and released me home. No meds, no further instructions, no nothing. My husbands ex told be about one type of pills and my ob gyn approved and ever since that I live a normal life. Been 5 years. Oh yeah, and I can't have kids, case stepping from the pills causes the cyst to form immediately endangering to break again and land me on the surgery table. So yeah. And no, endo awarness in my country is somewhere in the medieval ages, so I can dream of the surgery described here. Life sucks :)
OMG. That's so similar to my story! The cyst broke; they diagnosed endo after months ofa gony on my part; then I was told, "Wait for menopause." That was.... uh... yeah, let's not think of it. I was told ZERO and then was told (after I did my own work on it) that I didn't "qualify for a hysterectomy". Uh... WHAT? Welcome to the USA. Evrey pain since then, btw, I've been told must be my uterus. ARGH.
Load More Replies... I had endo from my first period. I was 13. Now I am 34. I had several excision surgieries. I cannot go under another one, since I would probably not survive it. It was better after surgery for 1-2 years at best. And then it was worst than before because of postoperative adhesions. It is NOT curable at this state of medicine. We only mask symptoms sadly :( And most people will say "it cannot be that bad"
Do you mind if I ask why another excision would likely kill you? My story isn't much different than yours. I've had 9 excisions myself but I haven't received any warnings about having another one. Also, the one I hate more than "it cannot be that bad" is "I have endometriosis too. If I can push through the pain so could you."
Load More Replies... I am 1 of 10 too. In October 2018 I got a quite bad and painful cramp during work that my workmates got really scared about it. Got into hospital and was diagnosed with Endometriosis. They had to take out my Uterus, one Ovarie and the Tubes. Stage 3 Endometriosis all over the abdominal cavity. I am painfree since then and feel great. Age 42. Half a life of suffering.
I wasn't diagnosed until I was 49, and had a hysterectomy. Because of endometriosis, I had to have invitro fertilization to have kids. My fallopian tubes became so scarred. I'm now 59. But I remember how it dictated my life. I always had to make sure I wasn't going to be having my period before I made plans. Because once I had it, it was at least 2 full days, curled up in the fetal position. To this day, most over the counter pain relievers won't work because I took so many in my younger years. When I finally talked the doctor into a hysterectomy (woman doctor, of course) I had to have a full abdominal, rather than laproscopic, so they could go in and scrape the endometrial tissue off my organs. I'm so glad that there is finally something being done about this disease. I noticed many years ago, they sure came up with that little blue pill awfully fast. I guess getting a boner is more important that the quality of women's lives.
Awful. I have it as well and just get palmed off all the time. Feel like giving up quite often. Oh - I read that the little blue pill was discovered by accident when trying to develop hypertension and angina treatments - they noticed it had an 'interesting' side effect.
Load More Replies... I am almost 49, and has suffered all my life! Last week, jan 8, i was at the hospital, they still wont help me.. I am so tired of this s**t! (Yes, been diagnosed w IBS too 🙈)
I've been battling for years and now I've ended up with a hormone allergy as a result of the treatment, neurological damage and wheelchair bound and nausea. Here's my story https://www.dailymail.co.uk/femail/article-7801507/Woman-endometriosis-left-wheelchair-bound-severe-reaction-routine-treatment.html More deff needs to be done for us, especially now the hospital has washed its hands of me and unwilling to treat me for 18months because I took their meds religiously and am now in a huge mess. Keep telling me time will fix it but it's been 2.5 years. Ive lost my career twice, my house, my job and everything I'd build up to make a home through the side effected. I've had to resort to a gofundme to fund treatment. It's ridiculous!
If anyone can help Lyndsey with a donation on GoFundMe that would be amazing! Thanks https://www.gofundme.com/f/lyndseys-endo-battle
Load More Replies... In the 90s endometriosis surgery was NOT covered. At 25 I had 9 months of constant periods (3-4/month) and pain. I got the surgery and then was billed $7,000!!! The MALE insurance rep said it was "elective fertility treatment". I told him "but I'm in grad school, NOT married, I don't want kids yet". He said "it's a convenience surgery". I yelled " why the h@&$ is male impotence covered but a 9 month period is not ?" He hung up on me. It affected my credit, I had to declare "indigence". That was 1998. Now, surgery and Hormones are covered. Thank you, female lobbyists.
The surgery was covered by insurance in the 90s, but not by every provider. My mom had an excision in 1996 and our insurance paid for it.
Load More Replies... I just recently went to the DR because I've been having extremely painful periods and wanted to make sure things were all right. He advised me to take vitamin D for my depression. ARE YOU KIDDING ME?!!!!
Twat of a doctor and sadly there are so many of them.
Load More Replies... Thank you for extending the awareness of this disease and its historical poor treatment. It is an indictment of women's health (including transgender members who suffer as well) and a value statement about our willingness to listen and understand that 100-year-old myths do not treat endometriosis. As well gynecology supports drug therapies know to not treat, not stop progression and do great harm on down the patients' life span with damage to bones, heart, cognitive function and cause permanent bone pain in additioo n to thinning.
So the obvious&usual remark is 'how can something affect 1 in 10 so badly get so little attention?' --- 'if it affected men it would be well-known and sorted by now'.
If 176 million men had unbearable pain with sex, bowel movements and exercise? and were prescribed as treatment feminizing hormones, surgical castration or pregnancy? Endometriosis would be an international emergency to which we would transfer our combined defense budgets......
Load More Replies... I was 14 when I was diagnosed. My periods were extremely heavy and the pain was severe enough I would pass out or it would trigger a literally blinding migraine and focal partial seizure. I was lucky enough the first OGBYN I saw took my complaints seriously. When she heard I had endometriosis on both sides of my family, she scheduled the exploratory/excision right away. She still says it was the worst case she has ever seen and again, I was only 14. I had stage 4 in ALL my reproductive organs. I'm 34 now. I still see the same OGBYN. In last 20 years, I've had 9 excisions, tried every birth control created, and took Lupron. I've also battled opioid addiction because Percocet was the only thing that took the edge off my pain. Endometriosis is still destroying my body and my life. Sadly, I can't have a hysterectomy because I'm in heart failure...thanks to addiction and Lupron. But, there is some happiness to my story. I am the proud mama to a set of naturally conceived twins.
My mom has it too. She's been told she'd never have kids (well, lucky for me, that was not true). She had been told numerous times to "just deal with the pain" and that "it cannot be that bad". She was finally diagnosed at the age of 48 after having to take birth control pills without breaks for the majority of her life (which only caused other unsolicited health problems)...
I got my period when I was 11, and got diagnosed about 5 years ago. I'm taking pills and was told if I were to go though excision surgery it would only come back so they recomended I do it once I plan on gettting pregnant. Than again, I know a woman who went through excision surgery, got pregnant and then a cyst grew while she was pregnant - luckly it didn't cause problems for the baby... The pills help me a lot but I'm always affraid how they'll affect me getting pregnant in the future...
I live in the Czech Republic and I have been diagnosed with endometriosis. My gyneacologist has agreed to postpone hysterectomy in order to see, if we can "dry out" the endometrical cells. I have been on a prescription contraceptive Pill since November 2018 nonstop - without taking a break for the regular period. After I finish one set, I continue with another. No break. I haven't had a period since. God I feel great. Yes, I have put on weight but that is a small price to pay compared to the torture of crippling periods. My blood tests show an immense improvement. I have seeked a second opinion on the matter and I was assured that this is the best way to go - dry the buggers out - because if you have a hysterectomy but your ovaries still function, the cells inside your abdomen react to the hormones as if you were on your period and cause havoc in your abdomen regardess of you having a uterus or not. So my uterus is peacefully resting and the cells are slowly dying of old age inside my abdomen. Ivona
Lily Williams, thank you for posting this. It's frightening and inexcusable that it took so long for a medical professional to give you a correct diagnosis. I had hear of endometriosis, but I didn't realize such a large percentage of women suffer from it. Women are all too frequently disregarded and misdiagnosed, whether for heart disease or endometriosis or many other illnesses/diseases.
It took me 18 years to get diagnosed. I went through a different doctor twice a year ever since age 11. each one of them said it's in my head, that everyone has pain. that I am too sensitive. that I can't handle little pain. etc.. Then one day my sister heard about awareness week on the radio and called me right away. told me to go check this weird name specifically. so I did. I was asked the same questions and gave the exact answers from doctors for the past 18 years. and what do you know?! all of a sudden I was diagnosed! i went through 22 different types of birth control and SO many types of pain killers only to learn that I have endometriosis AND adenomyosis. a few months later I had surgery and it's like all the terrible side effects were gone! I still have terrible pain. that's the adeno... nothing to do about that. but at least I have a doctor the believes me!
I had normal periods but I was not able to get pregnant. When going through menopause I had all sorts of aches and pains and went to the emergency room for what they said was anxiety. My back muscles still shake and sometimes seize up when I exercise. Not sure what all is attributed to having endo, but that would explain a lot of the unexplainable body pains that my doctors just shrug over. I also had an ovary removed that had a cyst. Wish something was done to get rid of the endo when I was in the prime of my life for reproducing. Now, no children.
Many years ago women used to be told "This will be cured by getting pregnant. Just have a baby!" At least nobody tells them that any more.
Bwahahahhaa. Yes they do. All the time. I've slapped last doc who said that to me right in the face... Not proud of violence, but proud that he magically took me seriously after that.
Load More Replies... Add me to the list. "Oh agonizing pain? Sorry, suck it up!" And then? I had a legit injury to my spine and was told, "Oh, it's your endo, get over it.".... Pardon? I had to relearn to walk, but hey, that was my *uterus*. (MRI showed it was my spine, btw. Took 6 months to get an MRI after an accident due to the assumption it was my endo, and that was after agony becuase I had endo anyway.)
I'm so glad you found the answer! I'm so tired of doctors not taking people seriously or not admitting they can't help( ok but then keep trying it find someone who can!) I hope a lot of women are this and get help they need.
I got my first period when I was 11. I also spent every school day period curled into the fetal position on a cot in the nurse’s office, occasionally vomiting into a basin because the pain was so awful. I have had doctors tell me it’s in my head, it’s IBS, there’s nothing they can do, take a Tylenol/Advil/Midol and you’ll be fine. Use a hot water bottle/heating pad. I didn’t have a mom to take me to an OB-GYN to see what was happening. It took THIRTY years of BS from doctors before I FINALLY got my diagnosis. Spoiler - still painful, treated with meds, offered the big H... Such a lack of empathy and sexism from a predominantly male profession. I’m not crazy. I have been ignored, dismissed and misdiagnosed for THIRTY years. I’ve been sent home from ERs doubled over in pain, bloated to the point that I looked 8 months pregnant, vomiting and more than miserable because “there’s nothing wrong with you and we can’t keep giving you pain medications, they’re addictive you know”...
Ok, I’ve had 2 laparoscopic surgeries to remove cysts and burn off endometrial scarring (myoma) the endo scarring has destroyed my Fallopian tubes so I can’t conceive. I would have to do IVF but I can’t come off “birth” control. Thanks for posting and bringing awareness but don’t give false hope. Just getting a doctor to believe you is hard enough, paying for surgery especially in USA is next to impossible. There is no cure. You can’t cut out cells. You can only burn off the scarring bc every time you menstruate the tissue grows and spreads. It’s a horrible disease.
I have a lot of these symptoms but they didn't start getting really bad until a few years ago the Dr. Said it's probably interstitial cystitis but none of those treatments seem to work except for therapeutic botox
As someone who has used alternative medicine to successfully treat (but not cure) a different (but equally misunderstood) debilitating chronic illness, I would like to say that the average alternative practitioner is as unlikely to be able to cure a severe chronic illness as the average western practitioner. Also, judging by your profile pic and your screen name you are male, and likely do not have endometriosis, so your opinion is not valid unless you are an expert medical practitioner specializing in endometriosis, which judging by your comments you are not.
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