@chump316 - I feel bad for not updating anyone in over a year! I have been working on a video for the past month. Getting the music down has been the last big thing on my To Do list. Basically, I gave 3 months for recovery, didn't feel like I had much benefit by month 4 post-op, got really depressed by month 5, and then I saw some benefit: I had 20 consecutive pain-free days in June 2011, 17 consecutive pain-free days in July 2011, and then 15 consecutive pain-free days in Nov. 2011.
I'm in Texas I haven't joined a forum because I'm not sure which ones are good. I get Medicaid but my doctors don't believe me so I can only go so far. Lately I've been getting dizzy every single time I stand up and migraines every day for the past months I'm not sure if it has anything to do with endo or cysts although I just read endo tissue can go to the brain and that scares me I don't know if I should trust my doctors for they don't care that I'm in pain that they can't explain
@chump316 - It's awful when our own mothers don't believe our pain. I remember all too well. Where are you at, geographically? What insurance do you have? Do you belong to any online endo support groups? Someone somewhere has the answers for you to get to surgery. An official diagnosis reassures us that we are not crazy or fabricating the pain, and a diagnosis provides a better plan of attack to manage the illness. Love and support to you!
I've watched All your videos and I'm just so sad that we have to go through all this I'm praying that someday I'll be able to have kids of my own I will not adopt would be too much for me that would be the last blow to my already severed ego...I'm going to be going on a detox soon and start living a vegan lifestyle without the soy I heard that is horrible for us with endo
Overreacting. I'm so scared because now I'm noticing new pains when I lay on my back and I get this feeling like I'm on my cycle that horrible throbbing yet bleeding out feeling and my back goes numb at these two parts right behind my ovaries or so I looked it up I'm more than sure I now have cysts but my insurance won't cover it because I cannot get a doctor to recommend me for surgery
I have not been diagnosed but I have all the symptoms I remember my mom not believing how much pain I was in and sending me to school with extra strength midol I was 15 I took 2 and usually only lasted if they even kicked in for 30 mins or less I would pass out from the pain by lunch and try to go to the nurse but no one believed me even though my own mother has it...she thinks that because her other daughter didn't get it I don't have it..I'm 21 now and it's gotten worse doctors only think I'm
First of all, you are a beautiful person for sharing such a personal story. This information is critical for all women but gets little attention. It seems that the health care system of the US and Canada need to do way more research on this horrendous cancer-like disease. Personally, I know too many women who have been affected by this as it runs in my family. Dioxins seem to make sense to me as this condition is too wide spread. We grew up around Pulp &Paper mills. I wish you health & happines
@ManasOnlineName - It IS horrible. Do you have general assistance in the town or city where you live? Some places do offer help to the needy and those without insurance. My friend gets prescriptions via 'Healthy San Francisco' initiative, for example.
I really wish I had something to offer you, sweetie.
I have endometriosis, also. I am about to have my 29th birthday on Feb. 4th. I just celebrated my 7th wedding anniversary on the 21st of January. I have no children. The doctor said I needed a full hysterectomy. This disease has ruined my life, because my biggest dream is to have a baby of my own. I can adopt, but it's not fair that I have to.
@ManasOnlineName - get a second, third and fourth opinion! Don't let one doctor make you get a hysterectomy, especially if you are not ready for such a huge medical and life change! Love to you.
Thank you so much for this video. I wish you luck with finding relief form pain for more then a few hours or days at a time! It is a terrible journey we go through with endo (and often other diseases that seem to tag along) but with every video, blog, awareness picture, and voice, we get a little closer to spreading awareness enough to get noticed!!
I´ve recently been diagnosed with severe endo, I had a huge chocolate cyst hanging from my left ovary about the size of my uterus. I ended up needing surgery to get rid of it and just started the temporary menopause treatment. I never thought of it, because my pain was not regular, and I went away after I took painkillers. But after a trip to the ER because of severe abdominal pain, I decided to get an ultrasound and find out what was wrong. It took me 11 years to know, It started when I was 15.
@leonora0210 - aw honey, I'm sorry you have endo, but I'm glad you know now. You have a wealth of books, medical journals and endo sisters out there to help navigate this illness. Together we are strong. Please consider becoming part of a DNA study (check with your surgeon) to help find a cure for endo. I hope for a cure in our lifetime.
For a year I have been off unnatural meds and there has been some improvement but not much due to my age and weaken immune system from the lupron. I'm scared now and fight with my bf all the time. I live in a new state have no girlfriends and feel all alone. But this video helps so much. I'm a kind person who is fighting the hate and confusion of this disease and its horrible treatments. Its exhausting to be nice when you feel so shity.
@Terrorizor26 Im going through the same thing. Stop by my channel and PM me if you want to talk. Im a good listener and I have the same thing going on. Let's chat if you feel up to it :) *HUGS*
@Terrorizor26 - have you joined any online endo communities? Have you checked with the Endometriosis Association to see if there are any in-person support groups near you? I know this disease is a lonely and miserable road. We need all the support we can get.
So when in a SAFE relation with a man of law when 24 I jumped to getting on Lupron again just out of fear the new good guy wont leave me cause I cant have sex. Turns out he only cares about my health but this still effects our relationship. I still have hormones of a 16 year old, pain, stomach cramps and bloating, pelvic pain, burning hip pain, tailbone and lower back pain. And overall depression. Right now I'm very worried about my symptoms. They all point to cancer.
@Terrorizor26 - the cancer link is frightening. I still wake up in fear of endo turning into The Big C, too. If you are able, check in regularly with a GYN who is specialised in endometriosis, or better yet, see a reproductive endocrinologist who has worked with endo patients. I hope for the best for you.
@stephlwe Thank you for this page Steph, my sister had a hysterectomy last summer as did my aunt. One had cancer and the other didn't. I didn't know that it could still turn into cancer after a hsyterectomy. We need to keep an eye on these things. Thank you for this trusted and informative page, you are a truly beautiful person.
had pain still. 23 was the healthiest I had ever been due to no birth control and tons of exercise. When I was on treatment the first time I was with a Abusive man named Taven Snyder, who guilt or even get angry if I didn't have sex with him cause I was in too much pain. He was very rough and would make me cry. Going through both the hormonal treatment with cemo and a abusive relationship with Taven snyder made it hard to heal.
Iv had it since I was 12. Was diagnosed when I was 17. Went on Lupron when I was 19.Cure didn't last. Again went on Lupron when I was 24 and literally it took that much time from 19 to 24 to recover from the lupron and build my body strong even though I had pain still. 23 was the healthiest I had ever been due to no birth control and tons of exercise. When I was on treatment the first time I was with a Abusive man named Taven Snyder, who guilt or even get
hey...i want to say thank you for the is video...i been having this pain since i was in the 4th grade when i first got my period but i never told anyone about it cause i dont want people to think i was crazy...but i finally told my mom about 3 years ago and ever since then i been trying to find a doctor that will tell me what is happening and why but nothing they all kepp saying its just my period and all girls go though it...so now i know whats worng with me thank u so much...
@deeanna90 - you are welcome! I knew I had endo, and talked about my endo for years before my official Stage III diagnosis via laparoscopy. Read all you can on endo, and do what you can to make dietary and lifestyle changes - see what works and doesn't work. Every little bit helps when it comes to reducing pain.
Thanks sis (aint nobody point out the fact that I am black) You described most of my pain and what I have gone through. The things is not even women understand the pain that we go through at times. One woman asked me one time if I have a low threshold to pain! She just couldn't understand what the fuss was about. Well, I don't know if it is low threshold or what..but I just can't seem to get used to feeling like my abdomen is being ripped out...Thanks for posting. Pain or no pain..God a God!
@renewilmoth - LOW threshold?!? OMG they are joking, right? HAH, if they only knew - our pain threshold is in fact so skewed that when we get pain anywhere else in our bodies, we scoff and yell, "is that all you've got?" LOL! Much love to you.
@stephlwe I am really cracking up over this. You are too funny. 'Is that all you've got!' You are so right. I have subscribed to your channel and I have a question for you and but I will send it to your inbox. Thanks for taking the time to share your story. Love right back!
Thank you for sharing your story and congraulations on all your achievments despite suffering from a crippling disease, i am 21 and have just been diagonised with endometriosis. your video reminded that good times are possible. thank you
@b56123 - you are welcome. The best medicine for us is to stay strong emotionally while managing this horrible illness. Band together with fellow endo sisters online and in local support groups. Post affirmations around your home to remind you of what joys you still have in your life despite the pain. Every little bit can help. The most important thing is to not let the darkness close in on us with this disease - endo and chronic pain is very depressing.
Now were talking about doing a bladder sling bc I am literally peeing every 10 minutes and its just ridiculous =( . If you ever need anyone to talk to you can def talk to me and it seems there are a few other woman on here that know what were dealing with also =) . I def wrote to much already but I could go on forever about what ive tried and been through . tricky disease !
I 100% understand what your going through beliveeee me . I have had 17 surgeries for this and my last one was a complete hysterectomy =( . When I was 19 I did manage to get pregnant shortly after one of my surgeries but had a miscarraige at 3 months . Even After my hysterectomy I am still dealing with Chronic pain . Ive been on Lupron 4 times and although its supposed to stop the growth unbelievably it grew worse . My dr couldnt believe it ! I still have it all over my bladder and colon
@pornoslut - I am so sorry you are still seeing endo and having pain after a hyst. It appears to be a common thing. I want to cry every time another endo sister has had a hysterectomy and reports back that it has not helped. All my love to you.
@stephlwe thanks for the kind words =) . It really sucks to know that im still dealing with this everyday , but I know at some point someday they will come out with something that will help us all =) .
Steph lwe - Thank you thank you thank you for creating and posting this searingly powerful video. The pain and torture which you and many of us go through regularly are so obvious and powerfully displayed - the music choices are perfect as well. Despite the pain, your strength, your courage, clarity of purpose and compassion are even more obvious. Best to you - you helped me feel less alone on a really tough day - praying for better treatments and a cure for all of us.
@jmstevans - you are quite welcome. The worst thing about endometriosis is that we do often feel so alone. I hope you can find a good online forum to help you on your painful, lonely days. I use endometriosis chat rooms on facebook, and I use twitter to chat with fellow endo sisters to help me remember I'm not alone. We must be able to stick together and find laughter and brightness amongst others who suffer like us during the dark times.
@maemoe420 - what people without endo keep failing to realise is that the amount of endometriosis found is not directly related to the amount of pain we are in. If you have stage I endo but are on disability from the pain, and I have stage III endo but I can work for most of the month, people never seem to understand that! There are women with stage IV endo who didn't even know they had it until another issue came up, they had surgery and endo was found. Stay strong emotionally, my endo sis.
I understand too what you are going through. I'm only 21 and I've been diagnosed with an endometrioma cyst as well as submucosal fibroid. It worries me because I want to have kids when I'm older and getting a job where people understand is going to be hard. Who is going to hire someone when their going to be a "no-show" about 3 times a month?! *sigh* I just hope their is an alternative method to surgery for this.
@Iheartnihon - yeah, I still struggle with anxiety over possibly being fired for missing work each month. It's not JUST endo - what people don't understand is that we get sick with flu or unforseen issues like everybody else does. But after we've already missed so much work BECAUSE of the endo, suddenly missing even more work because of other 'normal' viruses and such becomes a huge problem. The work place sees a giant amount of work being missed on our part, and they flag us. It sucks!!
I've had one laparoscopy, so far. I've tried many different hormonal therapies that made things worse for me. My surgeon suggested a hysterectomy.
I've had the symptoms since I was 11. I am now 26 and was diagnosed last May.
My experience in seeking help from doctors is that many don't believe that endometrosis can be the cause. i felt so depressed being referred to as a hypo-chondriac and a drug seeker for so many years.
@LunaofChaos - You're welcome - I do this for us. I hate that so many of us are told, "nothing else we can do for you, how about a hysterectomy?" Most of the time, it doesn't even solve the problem. :( I hope you can find a specialist who knows what they are talking about. Insurance and geographic location are other factors that hinder us getting the proper care we need. I could go on for weeks ranting about this!! Lots of love to you.
Thank you so much stephlwe for this...it brought tears to my eyes as I have also just undergone my second laparoscopy in the space of 18 months...seems there is an entire army of women suffering at the hands of this relentless disease. I hope you are keeping ontop of things...brilliant video!!!
@countesszee34 - Thank you - I'm glad to resonate with so many. I'm trying for a second surgery, too. May we enjoy some relief for awhile...and may a cure happen before we are old ladies!
@stephlwe You're most welcome, when is your next lap due? I wish you all the best and hope it brings you some relief. There must be a cure out there somewhere, just wish someone would discover it rapidly.
@countesszee34 - Just had a second consult with a new surgeon today. She said she does not advise further surgery right now. She wants me to continue with pain management. I'm doing acupuncture, massage, and will be attending a pain clinic next month, and doing physical therapy the month after. These last two are through the UCSF health system, so we'll see how it goes.
Thank you , Thank you , Thank you for making this video... back in the 80's I was told that having a child would correct this condition..... three children and over 20 years later I still have no relief...by the way you look amazingly different when you are not suffering....:)
This video made me cry because I know exactly what you are going through...I'm not as severe as you are but I understand what you are going through. Thanks for making this video!! You put a lot of time and dedication into this, and it's very powerful!! My hope is that one day there will be a cure, and more education available to those who have no clue what the endometriosis hell is like!! Hugs to you, and I pray you have more good days than bad days!!
@mystikallady18 - Thank you, lovely lady! We are all warrior women, battling this illness. No need to compare your pain to mine. All pain is real and valid and endometriosis just plain sucks, no matter what pain level or stage we have. xoxo
I know how you feel, 22 years of my life with this pain:(
lilianakarma 2 weeks ago
Steph I was wondering since your last surgery how has the pain been?
chump316 3 weeks ago
@chump316 - I feel bad for not updating anyone in over a year! I have been working on a video for the past month. Getting the music down has been the last big thing on my To Do list. Basically, I gave 3 months for recovery, didn't feel like I had much benefit by month 4 post-op, got really depressed by month 5, and then I saw some benefit: I had 20 consecutive pain-free days in June 2011, 17 consecutive pain-free days in July 2011, and then 15 consecutive pain-free days in Nov. 2011.
stephlwe 2 weeks ago
Why I have it...even though I wrote down a list and explained to them how I feel to the best of my ability why is it so hard to get help these days?
chump316 3 weeks ago
I'm in Texas I haven't joined a forum because I'm not sure which ones are good. I get Medicaid but my doctors don't believe me so I can only go so far. Lately I've been getting dizzy every single time I stand up and migraines every day for the past months I'm not sure if it has anything to do with endo or cysts although I just read endo tissue can go to the brain and that scares me I don't know if I should trust my doctors for they don't care that I'm in pain that they can't explain
chump316 3 weeks ago
And by all the symptoms I mean down to the last letter :(
chump316 3 weeks ago
@chump316 - It's awful when our own mothers don't believe our pain. I remember all too well. Where are you at, geographically? What insurance do you have? Do you belong to any online endo support groups? Someone somewhere has the answers for you to get to surgery. An official diagnosis reassures us that we are not crazy or fabricating the pain, and a diagnosis provides a better plan of attack to manage the illness. Love and support to you!
stephlwe 3 weeks ago
I've watched All your videos and I'm just so sad that we have to go through all this I'm praying that someday I'll be able to have kids of my own I will not adopt would be too much for me that would be the last blow to my already severed ego...I'm going to be going on a detox soon and start living a vegan lifestyle without the soy I heard that is horrible for us with endo
chump316 3 weeks ago
Overreacting. I'm so scared because now I'm noticing new pains when I lay on my back and I get this feeling like I'm on my cycle that horrible throbbing yet bleeding out feeling and my back goes numb at these two parts right behind my ovaries or so I looked it up I'm more than sure I now have cysts but my insurance won't cover it because I cannot get a doctor to recommend me for surgery
chump316 3 weeks ago
I have not been diagnosed but I have all the symptoms I remember my mom not believing how much pain I was in and sending me to school with extra strength midol I was 15 I took 2 and usually only lasted if they even kicked in for 30 mins or less I would pass out from the pain by lunch and try to go to the nurse but no one believed me even though my own mother has it...she thinks that because her other daughter didn't get it I don't have it..I'm 21 now and it's gotten worse doctors only think I'm
chump316 3 weeks ago
First of all, you are a beautiful person for sharing such a personal story. This information is critical for all women but gets little attention. It seems that the health care system of the US and Canada need to do way more research on this horrendous cancer-like disease. Personally, I know too many women who have been affected by this as it runs in my family. Dioxins seem to make sense to me as this condition is too wide spread. We grew up around Pulp &Paper mills. I wish you health & happines
TheGoddessCaroline 3 weeks ago
@TheGoddessCaroline - Thank you. Keep fighting - keep endo in the news until we are taken seriously, treated humanely, and a cure is found!
stephlwe 3 weeks ago
I am in a lot of pain, and I can't get pain meds because I don't have any insurance. This is horrible.
ManasOnlineName 4 weeks ago
@ManasOnlineName - It IS horrible. Do you have general assistance in the town or city where you live? Some places do offer help to the needy and those without insurance. My friend gets prescriptions via 'Healthy San Francisco' initiative, for example.
I really wish I had something to offer you, sweetie.
stephlwe 4 weeks ago
I have endometriosis, also. I am about to have my 29th birthday on Feb. 4th. I just celebrated my 7th wedding anniversary on the 21st of January. I have no children. The doctor said I needed a full hysterectomy. This disease has ruined my life, because my biggest dream is to have a baby of my own. I can adopt, but it's not fair that I have to.
ManasOnlineName 4 weeks ago
@ManasOnlineName - get a second, third and fourth opinion! Don't let one doctor make you get a hysterectomy, especially if you are not ready for such a huge medical and life change! Love to you.
stephlwe 4 weeks ago
@stephlwe
Even if they did a hysterectomy it is not a guarantee the endo will be gone:(
lilianakarma 2 weeks ago
Thank you so much for this video. I wish you luck with finding relief form pain for more then a few hours or days at a time! It is a terrible journey we go through with endo (and often other diseases that seem to tag along) but with every video, blog, awareness picture, and voice, we get a little closer to spreading awareness enough to get noticed!!
penguinvsminja 2 months ago
@penguinvsminja - You are very welcome. The more of us who speak up, the better!
stephlwe 4 weeks ago
I´ve recently been diagnosed with severe endo, I had a huge chocolate cyst hanging from my left ovary about the size of my uterus. I ended up needing surgery to get rid of it and just started the temporary menopause treatment. I never thought of it, because my pain was not regular, and I went away after I took painkillers. But after a trip to the ER because of severe abdominal pain, I decided to get an ultrasound and find out what was wrong. It took me 11 years to know, It started when I was 15.
leonora0210 2 months ago
@leonora0210 - aw honey, I'm sorry you have endo, but I'm glad you know now. You have a wealth of books, medical journals and endo sisters out there to help navigate this illness. Together we are strong. Please consider becoming part of a DNA study (check with your surgeon) to help find a cure for endo. I hope for a cure in our lifetime.
stephlwe 4 weeks ago
For a year I have been off unnatural meds and there has been some improvement but not much due to my age and weaken immune system from the lupron. I'm scared now and fight with my bf all the time. I live in a new state have no girlfriends and feel all alone. But this video helps so much. I'm a kind person who is fighting the hate and confusion of this disease and its horrible treatments. Its exhausting to be nice when you feel so shity.
Terrorizor26 2 months ago
@Terrorizor26 Im going through the same thing. Stop by my channel and PM me if you want to talk. Im a good listener and I have the same thing going on. Let's chat if you feel up to it :) *HUGS*
DreamsOfCottages 2 months ago
@Terrorizor26 - have you joined any online endo communities? Have you checked with the Endometriosis Association to see if there are any in-person support groups near you? I know this disease is a lonely and miserable road. We need all the support we can get.
stephlwe 4 weeks ago
So when in a SAFE relation with a man of law when 24 I jumped to getting on Lupron again just out of fear the new good guy wont leave me cause I cant have sex. Turns out he only cares about my health but this still effects our relationship. I still have hormones of a 16 year old, pain, stomach cramps and bloating, pelvic pain, burning hip pain, tailbone and lower back pain. And overall depression. Right now I'm very worried about my symptoms. They all point to cancer.
Terrorizor26 2 months ago
@Terrorizor26 - the cancer link is frightening. I still wake up in fear of endo turning into The Big C, too. If you are able, check in regularly with a GYN who is specialised in endometriosis, or better yet, see a reproductive endocrinologist who has worked with endo patients. I hope for the best for you.
stephlwe 4 weeks ago
@stephlwe Thank you for this page Steph, my sister had a hysterectomy last summer as did my aunt. One had cancer and the other didn't. I didn't know that it could still turn into cancer after a hsyterectomy. We need to keep an eye on these things. Thank you for this trusted and informative page, you are a truly beautiful person.
TheGoddessCaroline 3 weeks ago
@Terrorizor26
They gave me Lupron 7 years ago, all it did for me is losing my hair and it still has not been the same and I still have endo
lilianakarma 2 weeks ago
had pain still. 23 was the healthiest I had ever been due to no birth control and tons of exercise. When I was on treatment the first time I was with a Abusive man named Taven Snyder, who guilt or even get angry if I didn't have sex with him cause I was in too much pain. He was very rough and would make me cry. Going through both the hormonal treatment with cemo and a abusive relationship with Taven snyder made it hard to heal.
Terrorizor26 2 months ago
Iv had it since I was 12. Was diagnosed when I was 17. Went on Lupron when I was 19.Cure didn't last. Again went on Lupron when I was 24 and literally it took that much time from 19 to 24 to recover from the lupron and build my body strong even though I had pain still. 23 was the healthiest I had ever been due to no birth control and tons of exercise. When I was on treatment the first time I was with a Abusive man named Taven Snyder, who guilt or even get
Terrorizor26 2 months ago
i was diagnosed at 17 after 7 years of suffereing. i am now 20 and doing pretty well. thanks for posting your story :)
donnad23 3 months ago
@donnad23 - you are welcome. :)
stephlwe 4 weeks ago
hey...i want to say thank you for the is video...i been having this pain since i was in the 4th grade when i first got my period but i never told anyone about it cause i dont want people to think i was crazy...but i finally told my mom about 3 years ago and ever since then i been trying to find a doctor that will tell me what is happening and why but nothing they all kepp saying its just my period and all girls go though it...so now i know whats worng with me thank u so much...
deeanna90 3 months ago
@deeanna90 - you are welcome! I knew I had endo, and talked about my endo for years before my official Stage III diagnosis via laparoscopy. Read all you can on endo, and do what you can to make dietary and lifestyle changes - see what works and doesn't work. Every little bit helps when it comes to reducing pain.
stephlwe 4 weeks ago
Thanks sis (aint nobody point out the fact that I am black) You described most of my pain and what I have gone through. The things is not even women understand the pain that we go through at times. One woman asked me one time if I have a low threshold to pain! She just couldn't understand what the fuss was about. Well, I don't know if it is low threshold or what..but I just can't seem to get used to feeling like my abdomen is being ripped out...Thanks for posting. Pain or no pain..God a God!
renewilmoth 5 months ago
@renewilmoth - LOW threshold?!? OMG they are joking, right? HAH, if they only knew - our pain threshold is in fact so skewed that when we get pain anywhere else in our bodies, we scoff and yell, "is that all you've got?" LOL! Much love to you.
stephlwe 4 months ago
@stephlwe I am really cracking up over this. You are too funny. 'Is that all you've got!' You are so right. I have subscribed to your channel and I have a question for you and but I will send it to your inbox. Thanks for taking the time to share your story. Love right back!
renewilmoth 4 months ago
Thank you for sharing your story and congraulations on all your achievments despite suffering from a crippling disease, i am 21 and have just been diagonised with endometriosis. your video reminded that good times are possible. thank you
b56123 5 months ago
@b56123 - you are welcome. The best medicine for us is to stay strong emotionally while managing this horrible illness. Band together with fellow endo sisters online and in local support groups. Post affirmations around your home to remind you of what joys you still have in your life despite the pain. Every little bit can help. The most important thing is to not let the darkness close in on us with this disease - endo and chronic pain is very depressing.
stephlwe 4 months ago
This has been flagged as spam show
Now were talking about doing a bladder sling bc I am literally peeing every 10 minutes and its just ridiculous =( . If you ever need anyone to talk to you can def talk to me and it seems there are a few other woman on here that know what were dealing with also =) . I def wrote to much already but I could go on forever about what ive tried and been through . tricky disease !
pornoslut 5 months ago
I 100% understand what your going through beliveeee me . I have had 17 surgeries for this and my last one was a complete hysterectomy =( . When I was 19 I did manage to get pregnant shortly after one of my surgeries but had a miscarraige at 3 months . Even After my hysterectomy I am still dealing with Chronic pain . Ive been on Lupron 4 times and although its supposed to stop the growth unbelievably it grew worse . My dr couldnt believe it ! I still have it all over my bladder and colon
pornoslut 5 months ago
@pornoslut - I am so sorry you are still seeing endo and having pain after a hyst. It appears to be a common thing. I want to cry every time another endo sister has had a hysterectomy and reports back that it has not helped. All my love to you.
stephlwe 4 months ago
@stephlwe thanks for the kind words =) . It really sucks to know that im still dealing with this everyday , but I know at some point someday they will come out with something that will help us all =) .
take care ,
xoxoxoxoxoxo EMily
pornoslut 4 months ago
Steph lwe - Thank you thank you thank you for creating and posting this searingly powerful video. The pain and torture which you and many of us go through regularly are so obvious and powerfully displayed - the music choices are perfect as well. Despite the pain, your strength, your courage, clarity of purpose and compassion are even more obvious. Best to you - you helped me feel less alone on a really tough day - praying for better treatments and a cure for all of us.
jmstevans 6 months ago
@jmstevans - you are quite welcome. The worst thing about endometriosis is that we do often feel so alone. I hope you can find a good online forum to help you on your painful, lonely days. I use endometriosis chat rooms on facebook, and I use twitter to chat with fellow endo sisters to help me remember I'm not alone. We must be able to stick together and find laughter and brightness amongst others who suffer like us during the dark times.
stephlwe 4 months ago
Thank you very much for putting this up there and much love.
My partner is going through the exact same things and frustrations with ill-informed GP's in a small town RIGHT NOW.
You are dead right about Monsanto and Tool was perfect for this presentation.
Have subbed and will be checking out your page and links.
It kill's me to see her go through this.Luckily we beat the odds on one front.She is now 14 months old :-)
Much Love again and thanks.
TheMycophile 6 months ago
@TheMycophile - you are very welcome. I know I need to do an update - been tied up with getting an additional teaching credential.
stephlwe 4 months ago
YOUTUBE MONSANTO,,
oiyabastard 6 months ago
I was diagnosed in 2003. Hurts so bad and I only had a litlle both times. Pain nobody else would doesn't have it won't understand
maemoe420 6 months ago
@maemoe420 - what people without endo keep failing to realise is that the amount of endometriosis found is not directly related to the amount of pain we are in. If you have stage I endo but are on disability from the pain, and I have stage III endo but I can work for most of the month, people never seem to understand that! There are women with stage IV endo who didn't even know they had it until another issue came up, they had surgery and endo was found. Stay strong emotionally, my endo sis.
stephlwe 4 months ago
I understand too what you are going through. I'm only 21 and I've been diagnosed with an endometrioma cyst as well as submucosal fibroid. It worries me because I want to have kids when I'm older and getting a job where people understand is going to be hard. Who is going to hire someone when their going to be a "no-show" about 3 times a month?! *sigh* I just hope their is an alternative method to surgery for this.
Iheartnihon 7 months ago
@Iheartnihon - yeah, I still struggle with anxiety over possibly being fired for missing work each month. It's not JUST endo - what people don't understand is that we get sick with flu or unforseen issues like everybody else does. But after we've already missed so much work BECAUSE of the endo, suddenly missing even more work because of other 'normal' viruses and such becomes a huge problem. The work place sees a giant amount of work being missed on our part, and they flag us. It sucks!!
stephlwe 4 months ago
Finally, I have discovered a product that can help all of us, please check out my YouTube channel, spread the word, thank you all my friends.
WinALiteMarketing 11 months ago
Thank you so much for making this video!
I've had one laparoscopy, so far. I've tried many different hormonal therapies that made things worse for me. My surgeon suggested a hysterectomy.
I've had the symptoms since I was 11. I am now 26 and was diagnosed last May.
My experience in seeking help from doctors is that many don't believe that endometrosis can be the cause. i felt so depressed being referred to as a hypo-chondriac and a drug seeker for so many years.
LunaofChaos 1 year ago
@LunaofChaos - You're welcome - I do this for us. I hate that so many of us are told, "nothing else we can do for you, how about a hysterectomy?" Most of the time, it doesn't even solve the problem. :( I hope you can find a specialist who knows what they are talking about. Insurance and geographic location are other factors that hinder us getting the proper care we need. I could go on for weeks ranting about this!! Lots of love to you.
stephlwe 1 year ago
Thank you so much stephlwe for this...it brought tears to my eyes as I have also just undergone my second laparoscopy in the space of 18 months...seems there is an entire army of women suffering at the hands of this relentless disease. I hope you are keeping ontop of things...brilliant video!!!
countesszee34 1 year ago
@countesszee34 - Thank you - I'm glad to resonate with so many. I'm trying for a second surgery, too. May we enjoy some relief for awhile...and may a cure happen before we are old ladies!
stephlwe 1 year ago
@stephlwe You're most welcome, when is your next lap due? I wish you all the best and hope it brings you some relief. There must be a cure out there somewhere, just wish someone would discover it rapidly.
countesszee34 1 year ago
@countesszee34 - Just had a second consult with a new surgeon today. She said she does not advise further surgery right now. She wants me to continue with pain management. I'm doing acupuncture, massage, and will be attending a pain clinic next month, and doing physical therapy the month after. These last two are through the UCSF health system, so we'll see how it goes.
stephlwe 1 year ago
Thank you , Thank you , Thank you for making this video... back in the 80's I was told that having a child would correct this condition..... three children and over 20 years later I still have no relief...by the way you look amazingly different when you are not suffering....:)
tigra38 1 year ago
@tigra38 - you are quite welcome. I do this for all of us.
Yeah, I noticed how old and haggard I look when in pain. It's quite a change indeed!
stephlwe 1 year ago
This video made me cry because I know exactly what you are going through...I'm not as severe as you are but I understand what you are going through. Thanks for making this video!! You put a lot of time and dedication into this, and it's very powerful!! My hope is that one day there will be a cure, and more education available to those who have no clue what the endometriosis hell is like!! Hugs to you, and I pray you have more good days than bad days!!
mystikallady18 1 year ago 7
@mystikallady18 - Thank you, lovely lady! We are all warrior women, battling this illness. No need to compare your pain to mine. All pain is real and valid and endometriosis just plain sucks, no matter what pain level or stage we have. xoxo
stephlwe 1 year ago