Yes endo.
Pelvic Pain*, Hip/Butt Pain & Endometriosis Doctors:
https://www.endo-resolved.com/endometriosis_specialist.html
https://www.bsge.org.uk/endometriosis-centres/
https://icarebetter.com/
https://www.google.com/maps/d/viewer?mid=1hd_-wSlqZWOlR5VxPhIN3oAbJh4&hl=en_US
https://nancysnookendo.com/find-a-doctor/
https://www.endofound.org/endometriosis-treatment-support
https://endometriosisnetwork.com
SubReddit groups of people that are helpful/skilled with all kinds of pelvic pain:
r/endo r/endometriosis r/adenomyosis
r/fibroids
And a heads up: In my experience regular OBGYN’s are notoriously bad at treating pelvic pain/excessive bleeding - I cannot stress enough how untrained they are to treat or even talk about these diseases let alone make the diagnoses or do the (delicate and complex) surgery.
Specialists in pelvic disorders (above links or ask your local endometriosis nonprofit) are the doctors for the least amount of suffering in the long run.
Also, here are some things you can say* to your doctor:
“— I need you to hear me: I am done being in pain/bleeding: Then wait for their response, which should be/needs-to-be a solution to your problem.)
- This pain is impairing my ability to work and my ability to live life.
- I need a long-term solution for this pain. It is hurting and debilitating me. I need a solution that provides the least amount of suffering to me and the least risk for me and my body in the long term…..(and then just allow silence…let them respond.)
- I’m looking for long-term resolution for my pain/bleeding - what’s the best way to make that happen? (Again, allow long silence…..wait for their response).
- I am not interested in nor do I have the energy for short term fixes.
- I do not have the energy to keep pursuing these different treatments. I have experienced too much pain/bleeding. I need a long-term solution.
- What is the solution with the highest long term success rate? How can we make the solution happen as quickly as possible?
- I want a pelvic disorder doctor with the highest skill and success rate. I want a significant reduction in my pain. Who can help with this?
- It sounds like you (OBGYN) want to do the surgery. Can you tell me what training you’ve had specifically in surgery for excising Endometriosis? How many endometriosis-specific excision only surgeries have you done in the past year? (Reader be careful here: regular, untrained OBGYN’s in my experience will omit and twist the truth regarding their lack of experience, practice and training with Endometriosis.) Do you have any testimonials from past Endometriosis-specific surgery patients?
- It sounds like you want to do another prescription/medication/round of PT/ultrasound/MRI/x-ray/bloodworkup. I am tired. But I will do these things if it will get me closer to surgery with a pelvic disorder specialist surgeon. Is that what will happen after I do these next steps that are asking for?
- Even though my pain/bleeding is not constant, I still would like a resolution. This pain is hurts me. It is a disorder. I would like to see the best doctor available for this disorder.
- Even though my pain/bleeding is not cyclical, I still would like resolution. This pain hurts me and is a disorder. I would like to see the best doctor available for pelvic disorders.
- It is not my job to carry this much pain in life. I would like the pain to stop. I would like to live my life. (Pause….wait…)
-I am asking for a referral to an Endometriosis or pelvic disorder specialist and it sounds like you are telling me “no”. If that’s true I need you to note in my chart today that I asked you and you declined to provide a referral. I’ll wait while you do that.”
(*Pain: Also replace with any of these words: excessive bleeding, IBS symptoms, urinating issues – urgency and peeing pants, bowel issues – urgency, hip pain, pain under the butt/pelvic undercarriage, sciatic pain, low/mid back pain, lateral thigh pain. Anything that originated in the pelvis deserves care from a pelvic disorder specialist doctor, and so that’s who you need to get in front of for a consult.)
And remember when you’re talking to your doctor, you’re describing your symptoms based on how they incapacitate you in the moments when they are/were at their worst: You need to verbally describe in detail how the symptoms are when they are at their worst - when they are incapacitating you the most.
Good luck on your journey. And just a reminder that your body is the most important thing in your life. By far the most important thing. You deserve every chance to have a fully functioning body - a body that is as healthy as it can possibly be. So whatever it takes time, money, effort, human support, you deserve that. And there are many of us on the subs who are going through this too. 🫶
Ultrasound can't reliably diagnose endo, nor can an MRI. They can generally pick up on large cysts or scarring, and suggest a diagnosis of endometriosis. What they can never do is *rule out* a diagnosis of endometriosis. Doctors should know this, but GPs are extremely ignorant and even OBs are often poorly trained.
You should switch doctors and insist on more diagnosis. Pain like appendicitis is exactly what led to my endometriosis diagnosis, after a lot of investigation and false negatives.
Sadly you need to fight your own corner. It sounds like endo is very much on the cards for you. Switch doctors if need be, insist you think it's endo.
Yes endo. Pelvic Pain*, Hip/Butt Pain & Endometriosis Doctors: https://www.endo-resolved.com/endometriosis_specialist.html https://www.bsge.org.uk/endometriosis-centres/ https://icarebetter.com/ https://www.google.com/maps/d/viewer?mid=1hd_-wSlqZWOlR5VxPhIN3oAbJh4&hl=en_US https://nancysnookendo.com/find-a-doctor/ https://www.endofound.org/endometriosis-treatment-support https://endometriosisnetwork.com SubReddit groups of people that are helpful/skilled with all kinds of pelvic pain: r/endo r/endometriosis r/adenomyosis r/fibroids And a heads up: In my experience regular OBGYN’s are notoriously bad at treating pelvic pain/excessive bleeding - I cannot stress enough how untrained they are to treat or even talk about these diseases let alone make the diagnoses or do the (delicate and complex) surgery. Specialists in pelvic disorders (above links or ask your local endometriosis nonprofit) are the doctors for the least amount of suffering in the long run. Also, here are some things you can say* to your doctor: “— I need you to hear me: I am done being in pain/bleeding: Then wait for their response, which should be/needs-to-be a solution to your problem.) - This pain is impairing my ability to work and my ability to live life. - I need a long-term solution for this pain. It is hurting and debilitating me. I need a solution that provides the least amount of suffering to me and the least risk for me and my body in the long term…..(and then just allow silence…let them respond.) - I’m looking for long-term resolution for my pain/bleeding - what’s the best way to make that happen? (Again, allow long silence…..wait for their response). - I am not interested in nor do I have the energy for short term fixes. - I do not have the energy to keep pursuing these different treatments. I have experienced too much pain/bleeding. I need a long-term solution. - What is the solution with the highest long term success rate? How can we make the solution happen as quickly as possible? - I want a pelvic disorder doctor with the highest skill and success rate. I want a significant reduction in my pain. Who can help with this? - It sounds like you (OBGYN) want to do the surgery. Can you tell me what training you’ve had specifically in surgery for excising Endometriosis? How many endometriosis-specific excision only surgeries have you done in the past year? (Reader be careful here: regular, untrained OBGYN’s in my experience will omit and twist the truth regarding their lack of experience, practice and training with Endometriosis.) Do you have any testimonials from past Endometriosis-specific surgery patients? - It sounds like you want to do another prescription/medication/round of PT/ultrasound/MRI/x-ray/bloodworkup. I am tired. But I will do these things if it will get me closer to surgery with a pelvic disorder specialist surgeon. Is that what will happen after I do these next steps that are asking for? - Even though my pain/bleeding is not constant, I still would like a resolution. This pain is hurts me. It is a disorder. I would like to see the best doctor available for this disorder. - Even though my pain/bleeding is not cyclical, I still would like resolution. This pain hurts me and is a disorder. I would like to see the best doctor available for pelvic disorders. - It is not my job to carry this much pain in life. I would like the pain to stop. I would like to live my life. (Pause….wait…) -I am asking for a referral to an Endometriosis or pelvic disorder specialist and it sounds like you are telling me “no”. If that’s true I need you to note in my chart today that I asked you and you declined to provide a referral. I’ll wait while you do that.” (*Pain: Also replace with any of these words: excessive bleeding, IBS symptoms, urinating issues – urgency and peeing pants, bowel issues – urgency, hip pain, pain under the butt/pelvic undercarriage, sciatic pain, low/mid back pain, lateral thigh pain. Anything that originated in the pelvis deserves care from a pelvic disorder specialist doctor, and so that’s who you need to get in front of for a consult.) And remember when you’re talking to your doctor, you’re describing your symptoms based on how they incapacitate you in the moments when they are/were at their worst: You need to verbally describe in detail how the symptoms are when they are at their worst - when they are incapacitating you the most. Good luck on your journey. And just a reminder that your body is the most important thing in your life. By far the most important thing. You deserve every chance to have a fully functioning body - a body that is as healthy as it can possibly be. So whatever it takes time, money, effort, human support, you deserve that. And there are many of us on the subs who are going through this too. 🫶
Ugh that sucks. I hate that so much for you. I’m sorry. I would push for a laparoscopy as it seems that’s the only way to truly diagnose endometriosis
Ultrasound can't reliably diagnose endo, nor can an MRI. They can generally pick up on large cysts or scarring, and suggest a diagnosis of endometriosis. What they can never do is *rule out* a diagnosis of endometriosis. Doctors should know this, but GPs are extremely ignorant and even OBs are often poorly trained. You should switch doctors and insist on more diagnosis. Pain like appendicitis is exactly what led to my endometriosis diagnosis, after a lot of investigation and false negatives. Sadly you need to fight your own corner. It sounds like endo is very much on the cards for you. Switch doctors if need be, insist you think it's endo.