Very informative... My Daughter has had Endometriosis for years. It started in her Uterus, bowels,(27 years ago). And now it is in her lungs.. I feel so bad for her, as she has had blood clots in the vagina, and now lungs.. Most Drs. have not believed her, and she has no diagnosis, so she can't get disability. Cannot work so depends on a friend and me to help her survive... We are so disappointed in the Medical field, as she has been to lots of Drs. And they think she's just trying to get pain medication, but her pain is so great; that none of us could have gone through what she has... she's 47 now, and still alive, thanks to God for Prayers... Thanks for listening...
Thank you for this video. I was diagnosed with Thoracic Endometriosis after a catamenial pneumothorax in August 2019. It's been so difficult. I had surgery, a VATS Pleurodesis. I still have a copy of the images that my thoracic surgeon gave to me, showing the holes in my diaphragm and what it looked like after she repaired it. I have regularly followed up with my thoracic surgeon, internist, gynecologist, and pulmonologist. I have expressed to all of them how my breathing still feels so restricted and that I have random but regular chest pains. I was finally able to schedule an appointment with a specialist at the UofM Pelvic Pain Clinic, but I couldn't get in until December 2021. I really hope the appointment will shed light on what is going on. I have had really painful periods since I started menstruating at age 10. At 17, I was hospitalized due to ovarian cysts bursting. The physician did not remove the fluid. My abdomen eventually went down though. Anyway, I am trying to remain optimistic, but the constant pain and discomfort has really affected my psyche. My last abdomen and pelvic ultrasounds also showed adenomyosis and a fibroid. I feel desperate for answers 😔.
Hello, have you gotten any answers. Endo is so difficult I know, I have it too. There is a good book called “How to heal endometriosis naturally”. It’s a very good read and the woman who wrote it is full of knowledge about endo.
I am experiencing the same thing you are going through, and it is very, very frustrating. I am going to reach out to thoracic surgeon Dr. Byron Patton's office in NYC for help and Dr. Andrea Vidali. I had surgery almost four months ago, and I don't think the surgery resolved all of my problems.
Make sure you take a good look at a website called "Nancys nook". This was set up as an educational resource and a place for surgeons to have their name as nook surgeons, who know what they are doing. Please check this link out as it could save your life. There are far too many cowboy surgeons out there. I'm sure you will be able to speak and visit a competent surgeon via this link. Hugs, Jo Massey.
Great video. I'm just a patient but it definitely seems like endometriosis, similarly to cancer, gets into the bloodstream and moves around the body. Or maybe it's the stem cells that become the endometrium, that are activated by hormones before they're in the correct place (inside the uterus) or are just stem cells in other areas that get triggered to become endometrial tissue outside the uterus. Thankfully, obviously, it's not cancer. But maybe someday they will be able to test for endo cells in the bloodstream. We'd need much more sensitive and sophisticated tests to achieve this but I think it's possible
Thank you for the opportunity to share information about endometriosis in one of numerous atypical locations. I appreciate the ongoing support you provide to persons with endometriosis, local-to-global.
Thank you for all the education and advocacy you do, Wendy!!! You are truly changing so many people's lives and we thank you and acknowledge you. We're glad to be able to partner with you and would love to have you back to spread more of your knowledge whenever you're willing and available to do so! You're awesome! -Team RMCCF
@@riversidemedicalclinicchar1054 is there a way for Thoracic Endo patients to connect with a physician. None of my I had two pneumothorax and a Vats pleurodesis but that’s where my treatment ended. My doctors aren’t familiar with thoracic endo and don’t know what else to do for me.
We're so grateful to be able to offer this information to our endo family community! Wendy is truly so knowledgeable and we were so glad to have her speak on this important topic!! Thanks for watching Filipa!
This presentation was ABSOLUTELY AMAZING and l have learned SO MUCH. I now feel empowered in going to my first gynaecology appointment in a few weeks. I will definitely be reaching out via email too. THANK YOU SOOOOO MUCH!!
What would you say to a so called endometriosis surgeon, if he told you that the pudendal nerve is to deep to be bothered about? Interested in your opinion. An endometriosis sufferer for 25 plus yrs. Retired reg nurse, Jo.
Very informative...
My Daughter has had Endometriosis for years. It started in her Uterus, bowels,(27 years ago). And now it is in her lungs..
I feel so bad for her, as she has had blood clots in the vagina, and now lungs..
Most Drs. have not believed her, and she has no diagnosis, so she can't get disability. Cannot work so depends on a friend and me to help her survive...
We are so disappointed in the Medical field, as she has been to lots of Drs. And they think she's just trying to get pain medication, but her pain is so great; that none of us could have gone through what she has... she's 47 now, and still alive, thanks to God for Prayers...
Thanks for listening...
Thank you for this video. I was diagnosed with Thoracic Endometriosis after a catamenial pneumothorax in August 2019. It's been so difficult. I had surgery, a VATS Pleurodesis. I still have a copy of the images that my thoracic surgeon gave to me, showing the holes in my diaphragm and what it looked like after she repaired it. I have regularly followed up with my thoracic surgeon, internist, gynecologist, and pulmonologist. I have expressed to all of them how my breathing still feels so restricted and that I have random but regular chest pains. I was finally able to schedule an appointment with a specialist at the UofM Pelvic Pain Clinic, but I couldn't get in until December 2021. I really hope the appointment will shed light on what is going on.
I have had really painful periods since I started menstruating at age 10. At 17, I was hospitalized due to ovarian cysts bursting. The physician did not remove the fluid. My abdomen eventually went down though.
Anyway, I am trying to remain optimistic, but the constant pain and discomfort has really affected my psyche. My last abdomen and pelvic ultrasounds also showed adenomyosis and a fibroid. I feel desperate for answers 😔.
Hello, have you gotten any answers. Endo is so difficult I know, I have it too. There is a good book called “How to heal endometriosis naturally”. It’s a very good read and the woman who wrote it is full of knowledge about endo.
I am experiencing the same thing you are going through, and it is very, very frustrating. I am going to reach out to thoracic surgeon Dr. Byron Patton's office in NYC for help and Dr. Andrea Vidali. I had surgery almost four months ago, and I don't think the surgery resolved all of my problems.
Make sure you take a good look at a website called "Nancys nook".
This was set up as an educational resource and a place for surgeons to have their name as nook surgeons, who know what they are doing.
Please check this link out as it could save your life.
There are far too many cowboy surgeons out there.
I'm sure you will be able to speak and visit a competent surgeon via this link.
Hugs, Jo Massey.
Great video. I'm just a patient but it definitely seems like endometriosis, similarly to cancer, gets into the bloodstream and moves around the body. Or maybe it's the stem cells that become the endometrium, that are activated by hormones before they're in the correct place (inside the uterus) or are just stem cells in other areas that get triggered to become endometrial tissue outside the uterus. Thankfully, obviously, it's not cancer. But maybe someday they will be able to test for endo cells in the bloodstream. We'd need much more sensitive and sophisticated tests to achieve this but I think it's possible
Thank you for the opportunity to share information about endometriosis in one of numerous atypical locations. I appreciate the ongoing support you provide to persons with endometriosis, local-to-global.
Thank you for all the education and advocacy you do, Wendy!!! You are truly changing so many people's lives and we thank you and acknowledge you. We're glad to be able to partner with you and would love to have you back to spread more of your knowledge whenever you're willing and available to do so! You're awesome! -Team RMCCF
@@riversidemedicalclinicchar1054 is there a way for Thoracic Endo patients to connect with a physician. None of my I had two pneumothorax and a Vats pleurodesis but that’s where my treatment ended. My doctors aren’t familiar with thoracic endo and don’t know what else to do for me.
Hi i am watching from barbados.
Thank you for posting this. I couldn't attend as I am in Portugal and it was too late here. I'm glad that I can now watch it.
We're so grateful to be able to offer this information to our endo family community! Wendy is truly so knowledgeable and we were so glad to have her speak on this important topic!! Thanks for watching Filipa!
Im from philippines last july 25 2022 i had surgery catamenial pnuemothorax on my left lung .. stage 4 endometriosis
❤👏
This presentation was ABSOLUTELY AMAZING and l have learned SO MUCH. I now feel empowered in going to my first gynaecology appointment in a few weeks. I will definitely be reaching out via email too. THANK YOU SOOOOO MUCH!!
Thank you this was very helpful 💕
What would you say to a so called endometriosis surgeon, if he told you that the pudendal nerve is to deep to be bothered about?
Interested in your opinion.
An endometriosis sufferer for 25 plus yrs.
Retired reg nurse, Jo.
Hope that’s not true!!!