After 22 years of chronic pain and exhaustion, 15 years of infertility, and countless other symptoms, I finally have a diagnosis. My story of stage four endometriosis.
I wish I could hug you 😭 I’m so sorry you had to live so long with this and lose a huge chunk of your life to this terrible disease and largely because many doctors did not listen or care and let you down. I am 26 and I’ve been to the ER multiple times with severe pain, and not being able to even walk. Not just on my period but even ovulation and times in between. I can’t do things I enjoy like ride my horse without getting off of him and feeling like I have scrap metal grinding in my abdomen. My case is a little different with insanely heavy periods where I feel like I’m bleeding out, huge clots, pain so bad I will black out without pain killer to help. Ongoing severe depression and exhaustion. All my adolescence years and into adulthood I thought it was normal because that’s what everyone told me. I am married to a man in the army and I know very well about medical system on bases. Was told I was just exaggerating. It wasn’t until one emergency room trip where they found a ton of strange free fluid in my uterus that they listened and sent me to a specialist that suspected endo after explaining all my symptoms and I am now setting up surgery with my doctor. It’s been ongoing pain all my teen and adult life and it’s getting worse as I age, I’m getting to the point of not having energy to even take care of myself or anyone around me anymore. Still not have gotten pregnant. That has been almost more painful than the physical pain. Looking forward to hopefully getting some results. I pray you fully heal mentally and physically and don’t have to be in pain any more. What a awful disease.
@@emilycwik4970 thank you so much for watching and for the kind comment, Emily. It feels so much better knowing we aren't in it alone and our struggles are not isolated but rather a collective experience that many women are fighting to change, to have our pain be heard, believed, and investigated. I'm so glad you finally found someone willing to investigate! Amen for that! I hope your surgery brings you answers towards a healing path. 🫶☺️💛🙌 My pain is still very much the same as it was when I was diagnosed, but I have a plan to help that I've been working on, and honestly, just having answers is so helpful. Now when I throw up from pain or spend 6 hours in the bathroom a day I'm not upset or shaming myself, I'm able to say "scientifically XYZ is happening in my body right now, it makes sense that it causes pain." Knowing what's wrong with us and what's causing pain, infertility, exhaustion, anxiety, and depression is so helpful for validating that we indeed, are not crazy, we have a disease that's damaging our internal organs- of course we are in pain! And chronic pain and inflammation causes so many of the other symptoms like anxiety and depression. I really hope you get your answers soon. If it is indeed Endo, I can't recommend the book "Beating Endo" enough. It's been so helpful for me to formulate a plan for trying to live better with this disease and has been so validating and informative explaining all of the little known symptoms of Endo.
I live in Finland and when i was about 20 gynecologist said i have probably superficial endometriosis and i should use pills. Years after i got problems in my digestion and blood coming wrong places. I also got period pain without periods. Problems with urinating like urinating 5 times per night.I went to doctors and gynecologist who said everything is fine. It is probably irritated bowel. Diarrhea was sometimes constant. I went to gynecologist again seven years after that ans she said my uterus could be stucked to bowel and there is probably lot of adhensions. I feel health care system betrayed me. I was also many times in emergency because stabbin pain(knife on my sides and stomach) but usually doctors yelled at me that there is nothing wrong with me! One doctor said that it is probably just period pain even though i just have them. We pay taxes here a lot and doctors dont even seem to know this disease. I also look very healthy and young outside. I suspect this is also one reason it was hard to get help. This is not mens disease so doctors or researchers are not interested about this. Also deep endometriosis is quite rare i think.
@@vilma9774 I'm so sorry you went ignored for so long! I'm reading the book "Beating Endo," and it's been so helpful. In the book they talked about why Endo goes undiagnosed for so long. Only 1/3 of gynecologists know the top three symptoms of the disease, which is crazy. Of the 1/3 who know it, about half are confident in treating us. Which means only 1/6 of gynecologists could actually help us. And unless they specialize in the disease, most don't know all the other smaller symptoms like frequent urination. My whole life I thought it was just because I drank a lot of water. I'm so glad I know now what's been happening inside of me. But I totally feel your anger, too, that Drs ignored us for so long as the disease got worse. I hope you've found some relief for your pain. 💛
oh Laura, I'm so sorry to hear you've been dealing and going through all of this :( i was crying along with you while watching this. I can relate to you thou, not the same health issues but I've been in pain since 18 when I got diagnosed with Crohn's (IBD) and I have other mystery body pains now that all come back normal in scans and MRIs yet I'm in chronic pain daily :( I can relate when you say your quality of life makes it hard for you to become the parent you envision, I also have these fears and worries but yet I hope one day to become a mom, as well. I'm happy to hear you managed to get your trauma and anxiety under control!! I'm currently in trauma therapy and have tried emdr as well but not much. Medical trauma is a real thing and these doctors really can effect us negatively when we just want answers yet they pile on top of the trauma we already have. I know the numbness from going from appt to appt saying the same story over and over again and doctor's not taking you seriously, it's a real mind fuck! Anyway, there's probably so much more we could commiserate over and talk for hours but I'm glad you finally got the answers you've been searching for, a DR who listened, and hopefully your quality of life can finally start to turn a new leaf
Thank you so much for the kind comment, Serena. And for watching all the way through! ❤️❤️ It really is astounding to me looking back, thinking of every medical professional I paid who dismissed me and now having a surgeon say there's so much damage I'm looking at losing several organs in my next surgery. All these years of pain and symptoms and if anybody had believed me sooner, I could have gotten treatment sooner and it might not have progressed this so badly, this quickly. And goodness, Crohn's a beast 😭😢 I'm so sorry for you! I really hope you get continued answers and help soon. If I could cheerlead every woman to see as many doctors as it takes to be heard, I would! It's crazy to me that after 22 years it took one doctor believing me only a month to figure out my stuff. It's the believing piece that so many doctors seem to be missing. I'll be praying for you, that you experience some relief from pain and get connected with the right, compassionate care team! As hard as it is (because I don't think God cherry picks who gets miracles and who doesn't), I've been trying to practice more faith by praying for relief and a great care team for myself. My first surgery didn't result in any relief from symptoms, if anything, it pissed my Endo off 😂😭😢. But I am trying to cling on to hope that it will get better with the right treatment. It won't ever go away because it's a progressive disease, but I might experience some relief if I find the right medicine, surgery, and lifestyle changes. I pray your journey leads to some relief for you, too. It is truly exhausting and emotional telling your story over and over after being dismissed so many times before. But so necessary, because no one will look without us insisting. My MRIs were also clear, as were X-rays and hormone testing and so many other things. They might not see it yet, but there is something there for them to find for you, too. It sucks how sneaky some of these diseases and chronic/autoimmune conditions are! Sending sooooo much love to you, Serena! I really hope we both find relief and become the people we want to be, with our conditions managed. ❤️🙌💛💛💛 With chronic pain it can be so hard on our worst pain days to show up as the best version of ourselves. I get so cranky and exhausted and emotional. But knowing what's wrong with me now is a tiny help that my body is fighting something enormously damaging and no wonder I feel this way. It allows me to have grace and patience for myself in moments when I don't have the kind of patience to others I would like to. It's all a journey of us trying to grow. 💛💛💛💛💛💛💛 Our journey is just challenging in a way a lot of others can't see. But you are facing a challenge every single day, and that shows your resilience. 🌷🎉🙌 sending you so much love and care.
Listened to your story Laura and it made me so sad to think that no one ever took your symptoms seriously. So glad you now have your diagnosis and are moving forward processing all the emotions xx
@@carolescharacters thank you so much. 💛💛 Unfortunately, it's all too common for so many women. I hope a better quality of life is in the future now that I have a medical team who knows the problem! 🙌
Hi Laura, thank you for sharing your story & being so candid. Your story made me very mad that the theme of so many women I'm hearing over & over again being dismissed & not taken seriously by countless medical professionals. My heart breaks for the women who don't feel they are strong enough to advocate for themselves & have been made to feel stupid over & over again (myself included). That makes the anxiety of even seeking help even harder. There is such a disconnect with modern medicine these days it seems. I want to believe these Drs set out on a path to originally help people. I'm only just beginning on this pain journey & came across your video. By women sharing their stories it can bring more knowledge, understanding & validation to this truly horrendous disease ❤
@@AZCardsFan-x1x hello! Thank you so much for watching and for the kind comment. It is so maddening and confusing how professionals who want to help people accidentally keep them from getting answers because they don't think their symptoms are as serious as the patient thinks they are. If I could tell other chronic pain ladies something, it would be to not give up. Go to as many Drs as it takes to find one that listens to you. I wish I hadn't been so quick to dismiss myself when Drs told me I was fine. I now know I was indeed, never fine, always in pain, and the long-term damage becomes increasingly significant, deforming my interior as I was ignored. We know our bodies and our pain better than Drs. If one Dr thinks you're fine, find another. 💛💛 wishing you all the luck and resilience and strength on your journey to trying to get answers and help for yourself. It feels impossibly hard when you hit road blocks, but getting answers is essential. 💛☺️🫶
@laurarahelbailey Thank you so much! ❤️ We are for sure our own best advocate & know our bodies so well. I hope you can also find the correct specialist that will be able to help you further your healing & recovery to get the best quality of life you've been dreaming/hoping for! 🤗
Thank you for sharing your powerful story. I just found out that I have endo. 23 years of agonizing pain. I only have one son because child birth was a nightmare and recovery. I think the more we talk about it the more we can help each other. Once again thank you 🙏🏼🤍
@@gracelight216 I'm so sorry you've been suffering so long, too. ❤️😢 it's such a tough road. And absolutely, I agree! The more we talk about it, the better off we are for identifying it sooner and advocating for ourselves when Drs don't listen. 🙌
You poor thing!!! Thank you for sharing your story and being so open. I'm so sorry for all that you've experienced. It's so traumatising to be treated this way by the health system. I can relate to some stuff you've shared and know how isolating it can be. Although the level of pain/sickness you've experienced sounds especially difficult and I really feel for you. I wish you well in your journey 🙏
@@pinkwheels1313 thank you so much, that's very kind of you! 💛🫶 I'm really looking forward to a day without this kind of pain and sincerely think and hope it's in my future with another surgery at some point!
Laura, I've cried listening to you! You need to look for an OB specialist that will be able to have in the operating room other specialists that can remove all the scar tissues. Trust me, you'll be able to be a mother one way or another, but it's important that your organs are ok, your digestive, urinary systems are ok and that your life in not in danger in your 40s, 50s. You have a whole life to be a mother and a wonderful wife! Find support in local communities, facebook groups, read other women's stories and you'll find the support you need. I am getting ready myself to be a parent, but I know it'll probably take a surgery to get things right, so please look either in US or EU for specialists to treat this. France, Italy, Romania for example. You got this! Both you and your husband got this. You'll win this and everything will be OK!
I'm so sorry you're dealing with it too! And yes, my health and wellbeing is my number one priority. A baby is second. So if my next surgery will require me to lose reproductive organs in order to be well, it's a loss I'll have to be okay with to get my quality of life back. You're right, there are different ways to become a mom. 💛🙌 thankfully, my next surgical team is already getting peiced together with different surgery specialists for different areas that have been damaged (mostly my reproductive and digestion organs). Fingers crossed I'll have a successful excision surgery later this year. And hopefully you get the surgery you need, too. Have you read "Beating Endo"? I'm about 1/3 of the way through the book and it's been so helpful in me understanding my best routes to feeling well one day. Sending lots of care your way for your journey to become a mom!
Big hugs... You so much for sharing your story with us. Your story is extremely close to mine. I've been trying to tell the doctors for years that I believe I have endometriosis I have 2 full weeks of cramps that are debilitating. I recently gotten a ultrasound done that shows I have 8 fiberoids 1 large one sitting in the middle of my uterus.. I started passing thick huge blood clots and when I told my doctor they suggested to get a partial or total hysterectomy. They said if they just removed the fibroids they will eventually come back. I am really thinking about going ahead with the surgery because anything is better than the pain that I'm in on the monthly basis. But I still would like them to check my body for endometriosis so that I can feel validated for what I've suspected all these years. I totally understand the pain and fustration you feel. How noone believes you. I have been feeling the same way for 20+ years too. I am hopeful after surgery I no longer have to deal with such pain. Im excited to feel what normal life feels like. Thanks again for sharing I no longer feel alone or crazy. Bug hugs❤❤❤
Thank you for sharing your story, there was so much in it that I could relate to. I'm so glad you have your diagnosis now and are learning more about how this disease works. I really hope you continue to get better and heal from all the pain this has caused ❤
@@MauraNLydon absolutely, even having answers about the diagnosis alone has been so hopeful. Instead of crying about how I'm always in pain and why does everyone else seem to not have it, I can work through the science of "this disease and scar tissue is attacking my reproductive and digestion organs, no wonder I'm in pain!" Answers help the mental part of it. I've also been reading a book about all the physical changes that can be made to help and I'm really looking forward to having another surgery and have already implemented a lot of things like organic fruits and veggies and gentle movement instead of intense workouts, etc. ☺️💛 thank you for your sweet thoughts!
Good luck with those changes and future surgery, I really hope it goes well! I am slowly trying to make some changes to diet and lifestyle as well to find ways to improve my quality of life. It isn't easy but I'm optimistic that things will get better eventually ❤
Thank you for sharing your story, I have and still do deal with very similar issues trying to navigate it myself so your story makes me feel like I’m not crazy and these things are true and happening to more people than just me. So thank you 💖 and take care ! Ps your fur babies are adorable! 😍
@@akalessi oh, thank you! They'll be so happy to hear you think they are cute 🥰🙌. I'm glad the video could provide you some comfort and support knowing you aren't alone. Advocating for ourselves is so exhausting, but necessary when we are suffering and they don't see it. Hoping you find answers for yourself soon! 💛🫶🙌🎉
@@taymicastro2749 Yes, my pain is almost always coming from my left side. Post surgery I found out it's because my left fallopian tube is fused to my colon with scar tissue. Restricting my colon and making all parts of the digestive process painful.
@@laurarahelbailey thank so much for responding me ,another question do you have urgent to void “pee “” and bladder pain omg 😳 I have a lot of symptoms I feel so drained fatigue and so much pain in my abdomen,thank you I hope u are feeling better
@@taymicastro2749 I don't have that symptom but it is mentioned in the "Beating Endo" book I'm reading. My sister has it and it sounds awful. I am not feeling better yet, but I'm hopeful that another surgery will help! We are trying to have a baby first though (with IVF) because I'll probably lose my ovaries and maybe my fallopian tubes during my next surgery.
I’m currently suffering from the same type of symptoms. I have been trying to get the laparoscopy exam and it’s like pulling teeth. It’s making me angry hearing how these doctors didn’t take you seriously. Like as if you would purposely choose to go through all of these hassles to be “dramatic”. I am so sorry that they failed you like this.
@@victoriakatofficial thank you, Victoria. I'm so thankful for the one doctor who finally listened, I still cry when I think about it. It taught me a lot about advocating for myself and realizing the health system is designed to fail us. We have to actively fight, for years, with professionals minimizing our reported pain, before getting surgery and a diagnosis, and it's insane. I really hope you're able to find a doctor soon who believes you and is interested enough to look deeper. If I could talk to younger me, I'd tell her to keep meeting gynecologists- as many as it takes to finally find one who believes us. If one doesn't believe me, on to the next, instead of listening to them that nothing is wrong. It only takes one doctor to change our whole life, but it's so hard to find that one! Praying that you find answers and relief soon. 🙌💛
Thank you. Yes, my next surgeon will be an excision expert. 🙌🎉 We aren't sure when that will be yet, but I've already had my first consult with her and she's great.
@@vivianchudi I have not. My consult concluded that I'll likely lose several of my reproductive organs when I have the excision surgery, so we are trying IVF first. Now that I have an official diagnosis, insurance covers some of our fertility treatments. At least twice a month I tell my husband though, I'm so excited/hopeful for excision surgery! I need to be out of this amount of pain on a regular basis. I'm hoping we can have a baby and then I can do the excision surgery!
@@laurarahelbaileyOkay, dear, I wish you the best of luck. I had fibroid and endometriosis ( stage 4) but I had surgery in July. We have started trying for babies. Please keep me in your prayers, I will keep you in my prayers too. We will conceive very soon.
@@wanderingwants thank you, and I'm so sorry you can relate to it. Such a difficult journey to know something is wrong and have doctors insist there isn't!
@laurarahelbailey Over a decade of people saying it was all depression and anxiety. Now off to an Endo specialist thanks to my current Gyn who got angry on my behalf! She's a hero! Specialist is expensive but lack of resources in a country town. All the best darling.
Hoi Laura, ik weet wat je doormaakt, heb zelf ook endo stage 4, ik droeg zelfs kraamverband, maar het bloeden stopte niet, liep gewoon langs mijn benen, en sliep van mijn 39ste tot aan mijn 51 ste 18 uur per dag. Sterkte meid😘
@@UnathiGalada they start several days before my period and my pain currently extends to post ovulation, so it lasts about two weeks of every month being at a level 6 or higher pain. The other couple of weeks I'm at a 2-4 level pain. When I was younger I only experienced pain before and on my period. As I've lived with the disease unknowingly for so long the damage has extended and now my ovaries are largely affected which causes me to now have the pain with ovulation, too.
I wish I could hug you 😭 I’m so sorry you had to live so long with this and lose a huge chunk of your life to this terrible disease and largely because many doctors did not listen or care and let you down. I am 26 and I’ve been to the ER multiple times with severe pain, and not being able to even walk. Not just on my period but even ovulation and times in between. I can’t do things I enjoy like ride my horse without getting off of him and feeling like I have scrap metal grinding in my abdomen. My case is a little different with insanely heavy periods where I feel like I’m bleeding out, huge clots, pain so bad I will black out without pain killer to help. Ongoing severe depression and exhaustion. All my adolescence years and into adulthood I thought it was normal because that’s what everyone told me. I am married to a man in the army and I know very well about medical system on bases. Was told I was just exaggerating. It wasn’t until one emergency room trip where they found a ton of strange free fluid in my uterus that they listened and sent me to a specialist that suspected endo after explaining all my symptoms and I am now setting up surgery with my doctor. It’s been ongoing pain all my teen and adult life and it’s getting worse as I age, I’m getting to the point of not having energy to even take care of myself or anyone around me anymore. Still not have gotten pregnant. That has been almost more painful than the physical pain. Looking forward to hopefully getting some results. I pray you fully heal mentally and physically and don’t have to be in pain any more. What a awful disease.
@@emilycwik4970 thank you so much for watching and for the kind comment, Emily. It feels so much better knowing we aren't in it alone and our struggles are not isolated but rather a collective experience that many women are fighting to change, to have our pain be heard, believed, and investigated. I'm so glad you finally found someone willing to investigate! Amen for that! I hope your surgery brings you answers towards a healing path. 🫶☺️💛🙌 My pain is still very much the same as it was when I was diagnosed, but I have a plan to help that I've been working on, and honestly, just having answers is so helpful. Now when I throw up from pain or spend 6 hours in the bathroom a day I'm not upset or shaming myself, I'm able to say "scientifically XYZ is happening in my body right now, it makes sense that it causes pain." Knowing what's wrong with us and what's causing pain, infertility, exhaustion, anxiety, and depression is so helpful for validating that we indeed, are not crazy, we have a disease that's damaging our internal organs- of course we are in pain! And chronic pain and inflammation causes so many of the other symptoms like anxiety and depression. I really hope you get your answers soon. If it is indeed Endo, I can't recommend the book "Beating Endo" enough. It's been so helpful for me to formulate a plan for trying to live better with this disease and has been so validating and informative explaining all of the little known symptoms of Endo.
thank you so much for sharing your story! Im so sorry that you went through so much. Im praying for you to heal and be able to conceive.
I live in Finland and when i was about 20 gynecologist said i have probably superficial endometriosis and i should use pills. Years after i got problems in my digestion and blood coming wrong places. I also got period pain without periods. Problems with urinating like urinating 5 times per night.I went to doctors and gynecologist who said everything is fine. It is probably irritated bowel. Diarrhea was sometimes constant. I went to gynecologist again seven years after that ans she said my uterus could be stucked to bowel and there is probably lot of adhensions. I feel health care system betrayed me. I was also many times in emergency because stabbin pain(knife on my sides and stomach) but usually doctors yelled at me that there is nothing wrong with me! One doctor said that it is probably just period pain even though i just have them. We pay taxes here a lot and doctors dont even seem to know this disease. I also look very healthy and young outside. I suspect this is also one reason it was hard to get help. This is not mens disease so doctors or researchers are not interested about this. Also deep endometriosis is quite rare i think.
@@vilma9774 I'm so sorry you went ignored for so long! I'm reading the book "Beating Endo," and it's been so helpful. In the book they talked about why Endo goes undiagnosed for so long. Only 1/3 of gynecologists know the top three symptoms of the disease, which is crazy. Of the 1/3 who know it, about half are confident in treating us. Which means only 1/6 of gynecologists could actually help us. And unless they specialize in the disease, most don't know all the other smaller symptoms like frequent urination. My whole life I thought it was just because I drank a lot of water. I'm so glad I know now what's been happening inside of me. But I totally feel your anger, too, that Drs ignored us for so long as the disease got worse. I hope you've found some relief for your pain. 💛
Thank you so much Laura for making and sharing this video. May God bless you with good health 🙏
@@indumoon thank you for your kind words and for watching 🎉🥰😊
oh Laura, I'm so sorry to hear you've been dealing and going through all of this :( i was crying along with you while watching this. I can relate to you thou, not the same health issues but I've been in pain since 18 when I got diagnosed with Crohn's (IBD) and I have other mystery body pains now that all come back normal in scans and MRIs yet I'm in chronic pain daily :( I can relate when you say your quality of life makes it hard for you to become the parent you envision, I also have these fears and worries but yet I hope one day to become a mom, as well. I'm happy to hear you managed to get your trauma and anxiety under control!! I'm currently in trauma therapy and have tried emdr as well but not much. Medical trauma is a real thing and these doctors really can effect us negatively when we just want answers yet they pile on top of the trauma we already have. I know the numbness from going from appt to appt saying the same story over and over again and doctor's not taking you seriously, it's a real mind fuck! Anyway, there's probably so much more we could commiserate over and talk for hours but I'm glad you finally got the answers you've been searching for, a DR who listened, and hopefully your quality of life can finally start to turn a new leaf
Thank you so much for the kind comment, Serena. And for watching all the way through! ❤️❤️ It really is astounding to me looking back, thinking of every medical professional I paid who dismissed me and now having a surgeon say there's so much damage I'm looking at losing several organs in my next surgery. All these years of pain and symptoms and if anybody had believed me sooner, I could have gotten treatment sooner and it might not have progressed this so badly, this quickly. And goodness, Crohn's a beast 😭😢 I'm so sorry for you! I really hope you get continued answers and help soon. If I could cheerlead every woman to see as many doctors as it takes to be heard, I would! It's crazy to me that after 22 years it took one doctor believing me only a month to figure out my stuff. It's the believing piece that so many doctors seem to be missing. I'll be praying for you, that you experience some relief from pain and get connected with the right, compassionate care team! As hard as it is (because I don't think God cherry picks who gets miracles and who doesn't), I've been trying to practice more faith by praying for relief and a great care team for myself. My first surgery didn't result in any relief from symptoms, if anything, it pissed my Endo off 😂😭😢. But I am trying to cling on to hope that it will get better with the right treatment. It won't ever go away because it's a progressive disease, but I might experience some relief if I find the right medicine, surgery, and lifestyle changes. I pray your journey leads to some relief for you, too. It is truly exhausting and emotional telling your story over and over after being dismissed so many times before. But so necessary, because no one will look without us insisting. My MRIs were also clear, as were X-rays and hormone testing and so many other things. They might not see it yet, but there is something there for them to find for you, too. It sucks how sneaky some of these diseases and chronic/autoimmune conditions are! Sending sooooo much love to you, Serena! I really hope we both find relief and become the people we want to be, with our conditions managed. ❤️🙌💛💛💛 With chronic pain it can be so hard on our worst pain days to show up as the best version of ourselves. I get so cranky and exhausted and emotional. But knowing what's wrong with me now is a tiny help that my body is fighting something enormously damaging and no wonder I feel this way. It allows me to have grace and patience for myself in moments when I don't have the kind of patience to others I would like to. It's all a journey of us trying to grow. 💛💛💛💛💛💛💛 Our journey is just challenging in a way a lot of others can't see. But you are facing a challenge every single day, and that shows your resilience. 🌷🎉🙌 sending you so much love and care.
Listened to your story Laura and it made me so sad to think that no one ever took your symptoms seriously. So glad you now have your diagnosis and are moving forward processing all the emotions xx
@@carolescharacters thank you so much. 💛💛 Unfortunately, it's all too common for so many women. I hope a better quality of life is in the future now that I have a medical team who knows the problem! 🙌
Hi Laura, thank you for sharing your story & being so candid. Your story made me very mad that the theme of so many women I'm hearing over & over again being dismissed & not taken seriously by countless medical professionals. My heart breaks for the women who don't feel they are strong enough to advocate for themselves & have been made to feel stupid over & over again (myself included). That makes the anxiety of even seeking help even harder. There is such a disconnect with modern medicine these days it seems. I want to believe these Drs set out on a path to originally help people. I'm only just beginning on this pain journey & came across your video. By women sharing their stories it can bring more knowledge, understanding & validation to this truly horrendous disease ❤
@@AZCardsFan-x1x hello! Thank you so much for watching and for the kind comment. It is so maddening and confusing how professionals who want to help people accidentally keep them from getting answers because they don't think their symptoms are as serious as the patient thinks they are. If I could tell other chronic pain ladies something, it would be to not give up. Go to as many Drs as it takes to find one that listens to you. I wish I hadn't been so quick to dismiss myself when Drs told me I was fine. I now know I was indeed, never fine, always in pain, and the long-term damage becomes increasingly significant, deforming my interior as I was ignored. We know our bodies and our pain better than Drs. If one Dr thinks you're fine, find another. 💛💛 wishing you all the luck and resilience and strength on your journey to trying to get answers and help for yourself. It feels impossibly hard when you hit road blocks, but getting answers is essential. 💛☺️🫶
@laurarahelbailey Thank you so much! ❤️ We are for sure our own best advocate & know our bodies so well. I hope you can also find the correct specialist that will be able to help you further your healing & recovery to get the best quality of life you've been dreaming/hoping for! 🤗
@@AZCardsFan-x1x thank you!! 🙌✨🎉😄🫶
Thank you for sharing your powerful story. I just found out that I have endo. 23 years of agonizing pain. I only have one son because child birth was a nightmare and recovery. I think the more we talk about it the more we can help each other. Once again thank you 🙏🏼🤍
@@gracelight216 I'm so sorry you've been suffering so long, too. ❤️😢 it's such a tough road. And absolutely, I agree! The more we talk about it, the better off we are for identifying it sooner and advocating for ourselves when Drs don't listen. 🙌
You poor thing!!! Thank you for sharing your story and being so open. I'm so sorry for all that you've experienced. It's so traumatising to be treated this way by the health system. I can relate to some stuff you've shared and know how isolating it can be. Although the level of pain/sickness you've experienced sounds especially difficult and I really feel for you. I wish you well in your journey 🙏
@@pinkwheels1313 thank you so much, that's very kind of you! 💛🫶 I'm really looking forward to a day without this kind of pain and sincerely think and hope it's in my future with another surgery at some point!
Laura, I've cried listening to you! You need to look for an OB specialist that will be able to have in the operating room other specialists that can remove all the scar tissues. Trust me, you'll be able to be a mother one way or another, but it's important that your organs are ok, your digestive, urinary systems are ok and that your life in not in danger in your 40s, 50s. You have a whole life to be a mother and a wonderful wife! Find support in local communities, facebook groups, read other women's stories and you'll find the support you need. I am getting ready myself to be a parent, but I know it'll probably take a surgery to get things right, so please look either in US or EU for specialists to treat this. France, Italy, Romania for example. You got this! Both you and your husband got this. You'll win this and everything will be OK!
I'm so sorry you're dealing with it too! And yes, my health and wellbeing is my number one priority. A baby is second. So if my next surgery will require me to lose reproductive organs in order to be well, it's a loss I'll have to be okay with to get my quality of life back. You're right, there are different ways to become a mom. 💛🙌 thankfully, my next surgical team is already getting peiced together with different surgery specialists for different areas that have been damaged (mostly my reproductive and digestion organs). Fingers crossed I'll have a successful excision surgery later this year. And hopefully you get the surgery you need, too. Have you read "Beating Endo"? I'm about 1/3 of the way through the book and it's been so helpful in me understanding my best routes to feeling well one day. Sending lots of care your way for your journey to become a mom!
Big hugs... You so much for sharing your story with us. Your story is extremely close to mine. I've been trying to tell the doctors for years that I believe I have endometriosis I have 2 full weeks of cramps that are debilitating. I recently gotten a ultrasound done that shows I have 8 fiberoids 1 large one sitting in the middle of my uterus.. I started passing thick huge blood clots and when I told my doctor they suggested to get a partial or total hysterectomy. They said if they just removed the fibroids they will eventually come back. I am really thinking about going ahead with the surgery because anything is better than the pain that I'm in on the monthly basis. But I still would like them to check my body for endometriosis so that I can feel validated for what I've suspected all these years.
I totally understand the pain and fustration you feel. How noone believes you. I have been feeling the same way for 20+ years too. I am hopeful after surgery I no longer have to deal with such pain. Im excited to feel what normal life feels like.
Thanks again for sharing I no longer feel alone or crazy. Bug hugs❤❤❤
31 just got diagnosed, I have 2 kids, but currently infertile .
Thank you for sharing your story, there was so much in it that I could relate to. I'm so glad you have your diagnosis now and are learning more about how this disease works. I really hope you continue to get better and heal from all the pain this has caused ❤
@@MauraNLydon absolutely, even having answers about the diagnosis alone has been so hopeful. Instead of crying about how I'm always in pain and why does everyone else seem to not have it, I can work through the science of "this disease and scar tissue is attacking my reproductive and digestion organs, no wonder I'm in pain!" Answers help the mental part of it. I've also been reading a book about all the physical changes that can be made to help and I'm really looking forward to having another surgery and have already implemented a lot of things like organic fruits and veggies and gentle movement instead of intense workouts, etc. ☺️💛 thank you for your sweet thoughts!
Good luck with those changes and future surgery, I really hope it goes well! I am slowly trying to make some changes to diet and lifestyle as well to find ways to improve my quality of life. It isn't easy but I'm optimistic that things will get better eventually ❤
Thank you for sharing your story, I have and still do deal with very similar issues trying to navigate it myself so your story makes me feel like I’m not crazy and these things are true and happening to more people than just me. So thank you 💖 and take care ! Ps your fur babies are adorable! 😍
@@akalessi oh, thank you! They'll be so happy to hear you think they are cute 🥰🙌. I'm glad the video could provide you some comfort and support knowing you aren't alone. Advocating for ourselves is so exhausting, but necessary when we are suffering and they don't see it. Hoping you find answers for yourself soon! 💛🫶🙌🎉
So helpful, Thank you for sharing
@@sassysashy9577 absolutely, thank you so much for your kind comment. Hoping you find the help you need 💛🙌
Does anyone have had pain in the left side of the abdomen after eating ? I do
@@taymicastro2749 Yes, my pain is almost always coming from my left side. Post surgery I found out it's because my left fallopian tube is fused to my colon with scar tissue. Restricting my colon and making all parts of the digestive process painful.
@@laurarahelbailey thank so much for responding me ,another question do you have urgent to void “pee “” and bladder pain omg 😳 I have a lot of symptoms I feel so drained fatigue and so much pain in my abdomen,thank you I hope u are feeling better
My painful side is the right side. I hope that surgery helps 😌
@@gracelight216 I hope surgery helps, too!
@@taymicastro2749 I don't have that symptom but it is mentioned in the "Beating Endo" book I'm reading. My sister has it and it sounds awful. I am not feeling better yet, but I'm hopeful that another surgery will help! We are trying to have a baby first though (with IVF) because I'll probably lose my ovaries and maybe my fallopian tubes during my next surgery.
I’m currently suffering from the same type of symptoms. I have been trying to get the laparoscopy exam and it’s like pulling teeth.
It’s making me angry hearing how these doctors didn’t take you seriously.
Like as if you would purposely choose to go through all of these hassles to be “dramatic”.
I am so sorry that they failed you like this.
@@victoriakatofficial thank you, Victoria. I'm so thankful for the one doctor who finally listened, I still cry when I think about it. It taught me a lot about advocating for myself and realizing the health system is designed to fail us. We have to actively fight, for years, with professionals minimizing our reported pain, before getting surgery and a diagnosis, and it's insane. I really hope you're able to find a doctor soon who believes you and is interested enough to look deeper. If I could talk to younger me, I'd tell her to keep meeting gynecologists- as many as it takes to finally find one who believes us. If one doesn't believe me, on to the next, instead of listening to them that nothing is wrong. It only takes one doctor to change our whole life, but it's so hard to find that one! Praying that you find answers and relief soon. 🙌💛
Please do ONLY Excision surgery for that find Endo specialist doctor and update us about surgery & pain
hope you will get better soon
Thank you. Yes, my next surgeon will be an excision expert. 🙌🎉 We aren't sure when that will be yet, but I've already had my first consult with her and she's great.
@@laurarahelbaileyHi, dear, I had my excision surgery already. Have you done yours yet?
@@vivianchudi I have not. My consult concluded that I'll likely lose several of my reproductive organs when I have the excision surgery, so we are trying IVF first. Now that I have an official diagnosis, insurance covers some of our fertility treatments. At least twice a month I tell my husband though, I'm so excited/hopeful for excision surgery! I need to be out of this amount of pain on a regular basis. I'm hoping we can have a baby and then I can do the excision surgery!
@@laurarahelbaileyOkay, dear, I wish you the best of luck. I had fibroid and endometriosis ( stage 4) but I had surgery in July. We have started trying for babies. Please keep me in your prayers, I will keep you in my prayers too. We will conceive very soon.
@@vivianchudi best of luck on your journey to baby!
So sorry, yes lazy doctoring... can totally relate
@@wanderingwants thank you, and I'm so sorry you can relate to it. Such a difficult journey to know something is wrong and have doctors insist there isn't!
@laurarahelbailey Over a decade of people saying it was all depression and anxiety. Now off to an Endo specialist thanks to my current Gyn who got angry on my behalf! She's a hero! Specialist is expensive but lack of resources in a country town. All the best darling.
@@wanderingwants thank you. I'm so glad you finally found answers and a medical professional who advocated for you! It makes such a huge difference!
Hoi Laura, ik weet wat je doormaakt, heb zelf ook endo stage 4, ik droeg zelfs kraamverband, maar het bloeden stopte niet, liep gewoon langs mijn benen, en sliep van mijn 39ste tot aan mijn 51 ste 18 uur per dag. Sterkte meid😘
Thank you for sharing
consider leaving reviews for all the doctors that failed you, and of course the ones that saved you
❤❤❤
@@vibes811 🫶💛
Newyork endometriosis center
In regards to what? I live in North Carolina so all the providers I see are local ☺️💛
Ok, if you was looking
Hey laura were your periods still short when you got diagnosed?
@@UnathiGalada yes, they were most cycles. Usually only 2 days periods, with a few more days of spotting.
And how long do your periods pains last?❤
@@UnathiGalada they start several days before my period and my pain currently extends to post ovulation, so it lasts about two weeks of every month being at a level 6 or higher pain. The other couple of weeks I'm at a 2-4 level pain. When I was younger I only experienced pain before and on my period. As I've lived with the disease unknowingly for so long the damage has extended and now my ovaries are largely affected which causes me to now have the pain with ovulation, too.
@@UnathiGalada some women with the disease have no pain though, so I think everyone's experience with it is a little different 💛