If one were to order a thoracic MRI to try to detect thoracic endometriosis, is it necessary to order it with contrast or is it fine without? Thank you for all the information.
I’m going through all of this now and tired of expressing myself and the horrendous pain. It’s so hard dealing with all that’s going on, endometriosis/ adenomyosis and fibroids. My stomach is swollen like I’m pregnant and very tender around my pelvic on the left side. I’ve been referred to physio due to severe radiating pain down my left leg and lower back on the left and after multiple appointments I’ve cried to have an mri which came back as I have a disc bulge L4 L5 , L1 to L5 I’m still on a waiting list to see a specialist gynaecologist which keeps getting cancelled and rebooked. I describe my left side as being completely broken because of the constant pain having a period or not and I find myself limping too tilted. My periods are horrific like I’m in labour and huge clots where I’m spending my first few days mostly in the bathroom 😓
I wish some doctors would take people and the pain they feel with endometriosis/ pelvic pain seriously and go into detail. Anything I’ve learned regarding my condition has all been through talks like this where I’m educated enough to express when I’m speaking. I’ve been going round in circles with this for over 20 years and 1 operation. I’m now back to the severe pain with adanomyosis and fibroids with endometriosis, my stomach is swollen like I’m pregnant with radiation chronic pain down my left leg / pelvic area . I describe my pain as my left side being completely broken but again I’m going round with physio gynaecologist and still ongoing with appointments 😓
I have multiple cysts, adenomyosis, and a cyst that grows to 7-8 cm and bursts to 2-3 and repeats. I desperately need a hysterectomy. The bloating, pain, sweats, doubling over, severe severe bleeding. It’s misery.
Thank you so much! My daughter has been on a long journey and for the past two plus years has also suffered with leg/hip pain and even had impingement surgery which did nothing. Only very recently did she learn there might be a connection between her endo (which she had given up on being recognized as an issue after seeing several doctors in spite of past history of endo ablation) and the leg/hip pain. She is currently being evaluated and alas is finally being believed. This info further confirms we may be getting closer to finding relief for her. She has always been active and an athlete and just wants her life back. Thank you so much for sharing and for your dedication to this field. We've been living the nightmare with her and are hoping there may be light at the end of a long tunnel.
I won’t allow them to do surgery. Bc the surgeons are psychotically aggressive. I know my symptoms I know what supplements work for women in countries that have more natural remedies. That’s what I’m doing and it’s helping. Freaking women menstrual herbs are helping. Systemic enzymes and more. I am not their cash cow. I know my body. I know the next generation will still be lied to…stay away from birth control it will ruin your entire system. ❤
This is my 3rd or 4th video I've watched and every time I start to doubt myself for seeking surgical care, a doctor on here says something and I can relate to it and it makes me feel slightly less anxious about having surgery. I'm 6 weeks away from finding out for certain if I've really been dying slowly on the inside for the last 20 years of my life. Nervous but ready for real answers. I've been in pain all my life, so I can "handle" it. What I can't handle at all is having zero answers for WHY.
Hello, I’m not sure when your next live will be. I would like to view it. I’ve had surgery at Rush hospital in Chicago about a year ago. I talked to Dr. Sinervo about 4 years ago. I’m still suffering from ascities. My gut under my rib cage stays swollen.
I’m so thankful for the Endometriosis Summit and that you all are having these kinds of conversations! I have had unilateral hip pain for years and I often felt like it was associated with the uterine pain I was also having. I was diagnosed with a labrum tear, had surgery for that, only for hip pain to return. I was later diagnosed with Adenomyosis and have recently been wondering if I also have Endometriosis. I am working with a Dr related to my Adenomyosis, but have had a hard time finding a doctor who would even consider the relationship between hip pain and gynecological concerns. Just glad to know someone’s out there talking about these things and that I’m not crazy! Thank you!
I can’t believe I’m just now discovering this condition! I have been undergoing so many tests for so many years. I’ve been sent to GI dr, heart dr, autoimmune specialist, gallbladder tests not once but twice in 3 years, & so many more and nobody ever mentioned this. I have right side pain, shoulder pain and pain in diaphragm area! Wow after paying all that money, I find the answer for free on RU-vid !
You actually sound like me. I'm scheduled for a Hida scan in 6 days and am thinking my symptoms are more geared towards endometriosis. I've had some shortness of breath , intermittent shoulder pain( I thought was related to my diet and gallbladder) . I also have hypothyroidism and low ferritin. God bless you.
It causes pain because the endometriosis is foreign to the abdomen This is what happens when there is a flare up for some women . The body tries to fight it causing swelling and cramping
😥please someone help me. I'm in so much pain still at the age of 42 I had a partial hysterectomy leaving one overy at 21 due to severe endometriosis. My overy + hemorrhagic cyst and small intestine is adhered to my pelvic floor. Last year a second surgeon backed out of the surgery once he was in there due to the fact that there was no visual of major organs.
Eu sinto muitas dores no meu período menstrual, mas dor mesmo de chegar a ficar de cama, além de sentir dor após a relação sexual, sinto essa dor como se fosse no estômago, mas não é no estômago ou no intestino sei lá. Fiz recentemente uma transvaginal e perguntei a médica de ela conseguia ver na trans e ela falou que não tinha sinais de que eu teria, já tentei várias vezes engravidar e não consigo e também não tomo remédios para evitar gravidez, não uso nada. Talvez eu tenha que fazer outros tipos de exames para saber de fato se tenho, porque os sinais eu tenho.
Eu fui diagnosticada aos 38 anos, mas me lembro de uns 10 anos atrás ouvir de uma Ginecologista que a dor no ato sexual, era que meu parceiro era bruto e grosseiro comigo. Saí do consultório confusa. Eu também escolhi não fazer uso de hormônios durante minha vida e tive que usá-lo após o diagnóstico. A minha foi silenciosa, sentia algum desconforto no período menstrual, mas nada que eu não deixasse de cumprir com meus compromissos.
My absolutely favorite session! So many excellent topics abt the state of healthcare now and future potentials of AI to train surgeons and provide supportive parameters to establish and maintain video documentation for general gyn to gather information for referral.
Endometriosis is a life long disease. Grief catches up after so many years of being isolated, suffering without much support and knowing that you won't have a child to hold your hand, when you really need it. As i get older, I feel much older....Its damn exhausting. My depression is so bad that I go mute for days....talking is just too much, especially when in pain. I'm trying to get surgery overseas for nerve entrapment, and my body feels so heavy and diseased. I was a registered nurse before my first lap, which basically ruined my life. I went from pain a few days to pain everyday. There needs to be Endometriosis clinics for support and advocacy and other resources in every part of the world. We used to have a women's hospital 20 yrs ago but seem to have gone backwards. I'm starting my art up again to have something positive to do. Thanks for talking about this, Jo. I haven't had any further surgery since 2001.....my symptoms are bought on mechanically by faeces sitting on the nerves and my ligaments ache all day after having a bowel motion. I also have crotch zapping, which indicates further nerve involvement. So, I'm trying to get surgery with a neuropelvologist in Australia to at least have a look see and remedy some of my pelvic nerve pain. I've done CBT and counselling and physiotherapy, but to be honest, nothing has really helped. I was 12 when my periods were unbelievably painful, put on the combined pill at 14, and diagnosed at age 26. Total hysterectomy age 28. I'm now 55 and I'm loosing weight for not eating much. Food equals going to the toilet which means pain. It's starting to actually take my life.....so I need exploratory surgery as I had stage 4.
My anti depressant Venlafaxine Drug Medication 💊 225mg worked for about four years and last year in the spring/summer , I was in a scary terrifying uncontrollably withdrawals HELL and I had to learn how to wean myself very sloth like slowly so that I can tolerate the hell a little bit more. I’m still going through HELL withdrawals but are little but bareable hell . Doctors don’t know the long term adverse side effects on the human but a lot , many many people have unalive themselves because of the iatrogenic paradoxical harm injuries that are very serious and dangerous for us and top with dealing with endometriosis and severe painful death periods every month. I am trying my best to hang on no matter what . I’m trying my hardest ! Some times people make it and other times people don’t make it and unfortunately that’s life BUT we humans can help each other and come together as a compassionate unity 💎🦢🦋🇨🇦🙋🏻♀️Love Shanda ! I love you Dr. Sallie! Your INVALUABLE HUMAN BEING! 💖✨
Investigation is the key here. As Dr Chung said, the pain may be coming from elsewhere. It looks like it will take further studies to give true numbers of appendix endometriosis. Im pleased to know that surgeons are removing the appendix regardless of what stage of endometriosis.
I have surgery to confirm endo next week. Doctor says he’s almost sure I have it but he won’t be able to confirm until he goes in with the camera in my stomach. I got my first period at 12 and a few periods later I started getting a severe abdominal pain. Life became scary. Every time the week of my period got close I was terrified. The best way my 12 year old self could describe it was “there is an alien inside of me doing god knows what to my intestines “ I didn’t know if the pain was truly from my intestines but that’s how it felt. Like a twist stabbing. later I learned my abdomen muscles involuntary contract constantly for days while on my period. Causing the extra soreness in my abdomen. I started having severe diarrhea after foods at 15 years old. The normal person who could go to restaurants or eat outside was Gone. I have suffered with the IBS symptoms for 13 years. It’s. A bit better but still there. All gyns I’ve seen put me on birth control. Which helped me not have severe period pain but after weight gain my fat didn’t look normal I looked swollen. Like with inflammation. I’d seen rheumatologist recently that don’t know why there’s so much inflammation in my markers in blood work. 15 years later a doctor listened. I will get laparoscopy surgery Feb 7 2024 to see if there’s endo inside of me which I’m almost sure there is. I hope this explains why I’ve had joint paints and pain in my body and extremities. We think it’s inflammatory because that’s what my blood work says. Which endo is an inflammatory disease. So I feel close to figuring out why I feel how I do for so many years.
Dr Chung is on the right track as the pelvis is made of so many nerves. I'm not willing to be injected with botox or other medications, because a surgeon didn't take the care to have a good look and see. I think all gynaecologists need to learn neuropelvology via Dr Possover, so they DO feel competent and skillful to see what is happening within the pelvis.
Thankyou Dr Chung, you stated the most important fact that "the pelvis is governed by so many nerves".......I like the way you evaluate what other problems may be causing nerve pain and investigating other possibilities before you excise the "known" endo nodules. I wish New Zealand gynaecologists would hear what you have to say. Thankyou for being so thorough and not just cutting out what you "know to be, BUT MAKING FURTHER INVESTIGATION. (Which maybe contributing to pelvic pain also).
If I have bowl endometriosis then people need to leave me the hell alone this why I am in so much pain every day and so angry how every one making a mockery out of me well I been very very terminally ill this truth and alot of pain
Does Dr Vidali remove the appendix during surgery as a precaution as endo has been found in many women. Silent kidney disease due to ureters being entrapped is also of concern. Can this be seen via MRI scan? Or does it take a trained eye to know what to look for. Can surgeons see this during a laparoscopy easily???? Thankyou for your informative vlogs on endometriosis. Joanna Massey
GREAT discussion. About time people with various divergent clinical experience openmindedly share their findings and conclusions. Finally, doctors who are compassionate and care when they CAUSE pain to patients already in pain and GREAT moderating by Salli Serrel, an experienced clinician who deserves equal respect with the MDs. You give me hope.
Sallie, I would love to know what you were referring to when you mentioned that you don't think as many people have ruptured cysts as the ER says do? Are there additional things that should be considered if you are told that? Trying to figure this out for my daughter that has already had expert excision and then hysterectomy for adenomyosis, with only one ovary left.
Does the DIE nodule infiltrating the muscle of the bowel also does not need surgery if no symptoms? "There is a 1.7 x 1 x 2 cm plaque of DIE along the posterior cervix causing tethering of the rectum to the left side of the cervix. There is a rectal nodule involving the rectal muscularis measuring 2 (CC) x 1 (AP) x 1.4 (TS) cm. This lies approximately 12 cm from the anal verge. "
Dr.Sinervo resolved my diaphragmatic endo symptoms with excision surgery in 2020 (at Northside Hospital/CEC in Atlanta). Prior to that my lung collapsed with my cycle, recurrently. He is the best, I was lucky to have his care and am so thankful not to need any more lung surgeries or chest tubes, so painful.
I realize this was posted a year ago but holy crap does she speak insensitively about trans patients. How hard is it to just say trans men and trans women? I hope someone took her aside afterwards and explained to her that her language was not appropriate. And no, your gender (or sex) does not have to be female to have endometriosis. Cisgender men and transgender women (both on and off medical estrogen) have both developed endometriosis.
Nothing insensitive about trans patients is anywhere in this talk. The whole trans and LGBTQ+ community are not united on the view points you share. They are yours. Not everyone’s.
@cleuhhh endometriosis is so common in people assigned male at birth that it has been repeatedly found in their bodies despite doctors not looking for it or even believing endo was a possibility. Endometriosis is not rare in any population. Facts over feelings.
@avim2528 ppl do not need to tip toe around u because u dont like the medical language used. Go to therapy if u think speaking about biology is insensitive. Jesus. And theres less than 20 cases ever reported for biological men getting endo. Its just not the same as in women.
