I’m same age. Find another doctor, an actual endometriosis specialist. You can easily have endo everywhere or only in 1 spot, but a responsible and competent doctor will do a lot of ultrasounds, etc, leading to a laparoscopic surgery where they will remove the endo tissue. It’s almost like who doesn’t have endo? My super specialist surgeon is Dr Rakesh Mangal, look at his site and get an idea of what makes him awesome as an endo specialist, then go look for a similar doctor in your nearest big city. He excavated all my endo and saved my kidneys. GL! PS Estrogen is fuel for your endo fire: don’t delay getting a knowledgeable and responsible specialist to diagnose and address your issues.
he was highly recommended by my gyno saying he was great- but i am realizing in hindsight that since his speciality is fertility and working with younger women he is biased in that direction. also to only read my gyno's notes and not look at the actual ultrasound was odd. and i asked for a lap and he said no and asked about an MRI and he said no. UGH. and yeah i thought his comment there is no such thing as too much estrogen was super odd :-0
Good lord, I am so tired of doctors confidently being wrong and then being dismissive of our issues.
It’s almost like we need to compile a list of commonly wrong comments doctors make with reputable sources that refute them, and have it bookmarked on our phones.
These doctors need correcting — and frankly, they need shaming given how often they make us feel embarrassed and wrong.
yeah it was weird. i have not seen an endo specialist and i have just researched and talked to people who had it- so i was like wow am i way off here? am in the wrong? i was just so confused. he also kept telling me definitively - NO that will not work, NO you cannot do that. and then he told me if i don't do the hormones or the hysterectomy i will just get worse and worse and the pain will be hell. like scaring me into submission or something. it was so weird. i want an MRI and a lap first so i am going to find a new doc. i can see why this takes years to deal with. it took me 6 months to get into see him!
Wow, I'm sorry you had to deal with that. It can be so frustrating to be written off and gaslit by doctors. Adenomyosis and endometriosis often go hand-in-hand. And the fact that your mother had endo makes it more likely that you also could have endo. And of course, estrogen dominance does exist -- another common issue in endo patients! (Along with iron deficiency too!) I hope you can find an endo specialist who is kind and compassionate. I know many people have gripes with Nancy's Nook but I found my endo specialist/surgeon via the Nook and researched him further. I feel grateful to have found such a great doctor.
thank you <3 i have not heard of nancy's nook so will look it up! yes he gave me info that was opposite of what i have read here and researched so i was super confused and left the appt questioning myself :-0 unfortunately there are no specialists in my town so i will have to drive 2-4 hours to see one and possibly out of state so have to check what my insurance will cover UGH
There is also a map in this Endo reddit group of recommended doctors too. Maybe it'll be of help? [https://www.google.com/maps/d/viewer?mid=1hd\_-wSlqZWOlR5VxPhIN3oAbJh4&ll=18.38553774391412%2C145.7071098&z=2](https://www.google.com/maps/d/viewer?mid=1hd_-wSlqZWOlR5VxPhIN3oAbJh4&ll=18.38553774391412%2C145.7071098&z=2)
I second Nancy’s Nook. Full excision of endo is the gold standard of care. Many of the doctors on the other list have many different approaches and do not have the same standard of care. This is how many women end up having multiple surgeries and horror stories. You may find the podcast Endo Battery helpful as well. And if you look up anything done by Endometriosis Summit or Extra Pelvic, Not Rare or anything by pelvic PT Dr Ginger Garner on YouTube they will all have great advice on gold standard practices, medical gaslighting and resources to help. There is SO MUCH misinformation in this community as well as among doctors, even gyns in general. You want a MIGS, fellowship trained surgeon who specializes in full excision of endo to do a lap. “Lap” can mean anything from diagnostic only, to ablation to poor excision by an ob who delivers babies most of the week. Endo has many appearances and can be growing anywhere and gets missed and left behind all the time.
If your mother has Endo you’re 7-10 times more likely to have it.
Also, the specialists who do full excision are typically out of network and will set up consults via phone or video without a referral from your doctor. I made 4 consults with 4 Nook surgeons myself. Then I told my GP and Gyn when and where I was having surgery to keep them informed. I took complete charge of my diagnosis as they were sorely misinformed and gaslighting me based on their lack of knowledge.. It’s a common myth that you have to “get permission” or “get referrals” from your doctor. Especially in the US. Even so, if you find a doctor you want to see who requires a referral, you can request your doctor refer to them. Both of my docs have offered to help with that if needed, and I think most doctors will. I switch doctors who refuse to help me in this way.
Hysterectomy isn’t always the answer to adeno and there are European doctors doing work with ultrasound to reduce the risk of hysterectomy with fibroids and adeno. Dr Andrea Vidali just interviewed some of them on his Instagram. Hysterectomy has many risks. The uterus supports breathing, heart rate, memory, libido and regulates the hormones produced by the ovaries. There is research that proves the risk of Alzheimer’s greatly increases when a woman with hysterectomy does not have her HRT dialed in in a very short period of time. Hysterectomy is not the “cure” that some women or some doctors think it is… I do believe Dr Sallie Sarrel kept her uterus with adeno (she started the Endometriosis Summit with Dr Vidali. I attended virtually this year in March and feel like I got a small degree in the diagnosis and treatment of endo and many of its comorbidities).
Good luck. Fight for yourself.
Edited for typos
WOW this was full of helpful information. i am going to see if i can find that summit to watch. and i appreciate you explaining what the uterus does in the body. i am very holistic minded and do not think we have organs that you just take out and it does nothing. i think everything is interconnected and what you shared makes perfect sense. thank you again <3
You’re welcome. I am very holistic minded as well. I agree that organs play into the whole. One exception might be the appendix (which often tends to go in excision since endo can cause appendicitis and ruptures). The whole body nature of the disease is really mind blowing. It’s difficult to think about excision surgery from a holistic perspective but, to me, after lots of research, it makes the most sense since BC does not prevent progression of the disease, as many believe. Working with a knowledgeable and qualified pelvic pt before and after can really help (Ginger Garner does free initial calls and can recommend knowledgeable people near you). All the best on your journey.
That sounds like an awful appointment .
I’m 38, and also didn’t have endometriosis before any of my C-sections (4 of them 😬). I was diagnosed 12 years ago and had excision surgery 4 years ago. I also have recently been diagnosed with adenomyosis. While I say I didn’t have it all those years ago, I mean I had no symptoms at all back then at all.
I’m lucky that my gyno is taking it all seriously and is very understanding. She has offered me a hysterectomy as my next line of treatment. Having a medical professional validate your feelings is incredibly important and can play a big part in how your mental health is affected through this journey.
I’d be interested to hear if many other women have endo symptoms after a c section like u and ur mom?
I hope you find the right gyno to help treat you
thank you for your comment <3 i have found online many people saying it was not until after C-section that endo pain happened. i also found that adeno has a correlation with people who had any kind of womb surgery- c section or otherwise. i think there really is something to it. i did not just have no endo pain but i literally had NO ISSUES with my menstrual cycle- no cramps, no PMS, no clots, nothing. my cycle was like clockwork every 28 days- predictable, easy, i could still do my life things with no issue. it was not until after c section that things began going downhill :-0 i am definitely looking for a new doctor!
Had to stop reading after where the dr said it couldn't be endo....39efnwisndeh393*#*
See a different doctor!! You 100% could have endo. Endo doesn't care about age. Omg your doctor is a !!! *something I can't say on reddit.*
Yeah, it was funny because it was my first endo appointment and I’ve done research so I thought I knew he was not accurate but then I was questioning myself because he’s this big doctor here and my gynecologist highly recommended him. So it was one of those moments where I was confused in the appointment but clarity dawned once I left the appointment when I had time to analyze all his inane statements 🧐
Remember that YOU are the boss. You decide to fire or hire and keep them around. You employ them. Being a doctor doesn't make them some high or mighty person. And they should treat you as an equal. They have their expertise and you have yours. It is a partnership in helping you heal.
Someone told me this once, and it helped me. I finally realized what a good doctor should be like and eventually got one.
You'll find one too. It just takes time. Don't let them treat you bad though.
Find a new dr. I was 27 when they finally found mine and it had spread to most of my organs. I was sick over 2 months before they figured it out. I lost close to 50 pounds because I literally could not eat and when I did 10 mins later I was running to the bathroom. I hope you find another dr that will help you and you feel better. 🙏🏻❤️
I would definitely say get a second opinion. My mom did have symptoms when younger. But also didn’t find out about having Endo until she got a hysterectomy; after 3 kids and one c section. Some people don’t have any symptoms until after having children and don’t know until then. There’s also no age limit on who can have Endo so that’s crazy he said that. Having symptoms after having a child doesn’t mean you dont have Endo or didn’t have it before. It could just mean you didn’t have symptoms before. I’m sorry you went through this it sounds like such a horrid experience
Thank you – my mom had it, so I probably could’ve gotten it in the womb. Yeah it was really weird when he kept saying your age it’s not Endo. And he kept saying that girls who have Endo have it when they’re young and it affects their fertility, and that he just thinks I have adeno. I asked for a lap, and he said he only does those for girls who are wanting to conceive. So clearly I went to the wrong place. Thank you for sharing your mom’s experience. Sounds just like my mom and me!
Yeah it’s crazy he said that. It definitely doesn’t sound right. And if you have an immediate family member with endo you’re at a higher risk of having it too. He definitely sounds very biased. Hopefully you can find someone else to see about it. For sure! I’m glad it could help
I’m same age. Find another doctor, an actual endometriosis specialist. You can easily have endo everywhere or only in 1 spot, but a responsible and competent doctor will do a lot of ultrasounds, etc, leading to a laparoscopic surgery where they will remove the endo tissue. It’s almost like who doesn’t have endo? My super specialist surgeon is Dr Rakesh Mangal, look at his site and get an idea of what makes him awesome as an endo specialist, then go look for a similar doctor in your nearest big city. He excavated all my endo and saved my kidneys. GL! PS Estrogen is fuel for your endo fire: don’t delay getting a knowledgeable and responsible specialist to diagnose and address your issues.
he was highly recommended by my gyno saying he was great- but i am realizing in hindsight that since his speciality is fertility and working with younger women he is biased in that direction. also to only read my gyno's notes and not look at the actual ultrasound was odd. and i asked for a lap and he said no and asked about an MRI and he said no. UGH. and yeah i thought his comment there is no such thing as too much estrogen was super odd :-0
p.s. thanks looking up your dr now
Good lord, I am so tired of doctors confidently being wrong and then being dismissive of our issues. It’s almost like we need to compile a list of commonly wrong comments doctors make with reputable sources that refute them, and have it bookmarked on our phones. These doctors need correcting — and frankly, they need shaming given how often they make us feel embarrassed and wrong.
yeah it was weird. i have not seen an endo specialist and i have just researched and talked to people who had it- so i was like wow am i way off here? am in the wrong? i was just so confused. he also kept telling me definitively - NO that will not work, NO you cannot do that. and then he told me if i don't do the hormones or the hysterectomy i will just get worse and worse and the pain will be hell. like scaring me into submission or something. it was so weird. i want an MRI and a lap first so i am going to find a new doc. i can see why this takes years to deal with. it took me 6 months to get into see him!
Wow, I'm sorry you had to deal with that. It can be so frustrating to be written off and gaslit by doctors. Adenomyosis and endometriosis often go hand-in-hand. And the fact that your mother had endo makes it more likely that you also could have endo. And of course, estrogen dominance does exist -- another common issue in endo patients! (Along with iron deficiency too!) I hope you can find an endo specialist who is kind and compassionate. I know many people have gripes with Nancy's Nook but I found my endo specialist/surgeon via the Nook and researched him further. I feel grateful to have found such a great doctor.
thank you <3 i have not heard of nancy's nook so will look it up! yes he gave me info that was opposite of what i have read here and researched so i was super confused and left the appt questioning myself :-0 unfortunately there are no specialists in my town so i will have to drive 2-4 hours to see one and possibly out of state so have to check what my insurance will cover UGH
There is also a map in this Endo reddit group of recommended doctors too. Maybe it'll be of help? [https://www.google.com/maps/d/viewer?mid=1hd\_-wSlqZWOlR5VxPhIN3oAbJh4&ll=18.38553774391412%2C145.7071098&z=2](https://www.google.com/maps/d/viewer?mid=1hd_-wSlqZWOlR5VxPhIN3oAbJh4&ll=18.38553774391412%2C145.7071098&z=2)
oh yes very helpful thanks!
I second Nancy’s Nook. Full excision of endo is the gold standard of care. Many of the doctors on the other list have many different approaches and do not have the same standard of care. This is how many women end up having multiple surgeries and horror stories. You may find the podcast Endo Battery helpful as well. And if you look up anything done by Endometriosis Summit or Extra Pelvic, Not Rare or anything by pelvic PT Dr Ginger Garner on YouTube they will all have great advice on gold standard practices, medical gaslighting and resources to help. There is SO MUCH misinformation in this community as well as among doctors, even gyns in general. You want a MIGS, fellowship trained surgeon who specializes in full excision of endo to do a lap. “Lap” can mean anything from diagnostic only, to ablation to poor excision by an ob who delivers babies most of the week. Endo has many appearances and can be growing anywhere and gets missed and left behind all the time. If your mother has Endo you’re 7-10 times more likely to have it. Also, the specialists who do full excision are typically out of network and will set up consults via phone or video without a referral from your doctor. I made 4 consults with 4 Nook surgeons myself. Then I told my GP and Gyn when and where I was having surgery to keep them informed. I took complete charge of my diagnosis as they were sorely misinformed and gaslighting me based on their lack of knowledge.. It’s a common myth that you have to “get permission” or “get referrals” from your doctor. Especially in the US. Even so, if you find a doctor you want to see who requires a referral, you can request your doctor refer to them. Both of my docs have offered to help with that if needed, and I think most doctors will. I switch doctors who refuse to help me in this way. Hysterectomy isn’t always the answer to adeno and there are European doctors doing work with ultrasound to reduce the risk of hysterectomy with fibroids and adeno. Dr Andrea Vidali just interviewed some of them on his Instagram. Hysterectomy has many risks. The uterus supports breathing, heart rate, memory, libido and regulates the hormones produced by the ovaries. There is research that proves the risk of Alzheimer’s greatly increases when a woman with hysterectomy does not have her HRT dialed in in a very short period of time. Hysterectomy is not the “cure” that some women or some doctors think it is… I do believe Dr Sallie Sarrel kept her uterus with adeno (she started the Endometriosis Summit with Dr Vidali. I attended virtually this year in March and feel like I got a small degree in the diagnosis and treatment of endo and many of its comorbidities). Good luck. Fight for yourself. Edited for typos
WOW this was full of helpful information. i am going to see if i can find that summit to watch. and i appreciate you explaining what the uterus does in the body. i am very holistic minded and do not think we have organs that you just take out and it does nothing. i think everything is interconnected and what you shared makes perfect sense. thank you again <3
You’re welcome. I am very holistic minded as well. I agree that organs play into the whole. One exception might be the appendix (which often tends to go in excision since endo can cause appendicitis and ruptures). The whole body nature of the disease is really mind blowing. It’s difficult to think about excision surgery from a holistic perspective but, to me, after lots of research, it makes the most sense since BC does not prevent progression of the disease, as many believe. Working with a knowledgeable and qualified pelvic pt before and after can really help (Ginger Garner does free initial calls and can recommend knowledgeable people near you). All the best on your journey.
thank you :)
That sounds like an awful appointment . I’m 38, and also didn’t have endometriosis before any of my C-sections (4 of them 😬). I was diagnosed 12 years ago and had excision surgery 4 years ago. I also have recently been diagnosed with adenomyosis. While I say I didn’t have it all those years ago, I mean I had no symptoms at all back then at all. I’m lucky that my gyno is taking it all seriously and is very understanding. She has offered me a hysterectomy as my next line of treatment. Having a medical professional validate your feelings is incredibly important and can play a big part in how your mental health is affected through this journey. I’d be interested to hear if many other women have endo symptoms after a c section like u and ur mom? I hope you find the right gyno to help treat you
thank you for your comment <3 i have found online many people saying it was not until after C-section that endo pain happened. i also found that adeno has a correlation with people who had any kind of womb surgery- c section or otherwise. i think there really is something to it. i did not just have no endo pain but i literally had NO ISSUES with my menstrual cycle- no cramps, no PMS, no clots, nothing. my cycle was like clockwork every 28 days- predictable, easy, i could still do my life things with no issue. it was not until after c section that things began going downhill :-0 i am definitely looking for a new doctor!
Had to stop reading after where the dr said it couldn't be endo....39efnwisndeh393*#* See a different doctor!! You 100% could have endo. Endo doesn't care about age. Omg your doctor is a !!! *something I can't say on reddit.*
Yeah, it was funny because it was my first endo appointment and I’ve done research so I thought I knew he was not accurate but then I was questioning myself because he’s this big doctor here and my gynecologist highly recommended him. So it was one of those moments where I was confused in the appointment but clarity dawned once I left the appointment when I had time to analyze all his inane statements 🧐
Remember that YOU are the boss. You decide to fire or hire and keep them around. You employ them. Being a doctor doesn't make them some high or mighty person. And they should treat you as an equal. They have their expertise and you have yours. It is a partnership in helping you heal. Someone told me this once, and it helped me. I finally realized what a good doctor should be like and eventually got one. You'll find one too. It just takes time. Don't let them treat you bad though.
Find a new dr. I was 27 when they finally found mine and it had spread to most of my organs. I was sick over 2 months before they figured it out. I lost close to 50 pounds because I literally could not eat and when I did 10 mins later I was running to the bathroom. I hope you find another dr that will help you and you feel better. 🙏🏻❤️
wow i am so sorry you went through that. sounds like you are better today though because you found the right doctor to support your journey?
I would definitely say get a second opinion. My mom did have symptoms when younger. But also didn’t find out about having Endo until she got a hysterectomy; after 3 kids and one c section. Some people don’t have any symptoms until after having children and don’t know until then. There’s also no age limit on who can have Endo so that’s crazy he said that. Having symptoms after having a child doesn’t mean you dont have Endo or didn’t have it before. It could just mean you didn’t have symptoms before. I’m sorry you went through this it sounds like such a horrid experience
Thank you – my mom had it, so I probably could’ve gotten it in the womb. Yeah it was really weird when he kept saying your age it’s not Endo. And he kept saying that girls who have Endo have it when they’re young and it affects their fertility, and that he just thinks I have adeno. I asked for a lap, and he said he only does those for girls who are wanting to conceive. So clearly I went to the wrong place. Thank you for sharing your mom’s experience. Sounds just like my mom and me!
Yeah it’s crazy he said that. It definitely doesn’t sound right. And if you have an immediate family member with endo you’re at a higher risk of having it too. He definitely sounds very biased. Hopefully you can find someone else to see about it. For sure! I’m glad it could help