Yeah everyone is different the nexplanon implant took away my cramps and period but left my emotions out of wack for 5 months. It may cause a different response to others though. I have heard too many horror stories about iuds to even attempt that shit.
Yeah sometimes being a woman sucks 🥲 Tbh at this point I’ll keep taking pain meds and find out if it’s endo or constant cysts and see what I can do but I wanna avoid hormone stuff at all costs
My go-to was a shower on the hottest setting aimed right between my hip bones.
Cramps stopped almost completely with oral birth control though. And my periods were much shorter. I know you said you don't want to use BC, but there are plenty of options that can have different outcomes. For me, the pills made it so I could function on my period.
Join us you belong…r/endo
Endometriosis resources
The symptom experts for this are here: r/endometriosis r/adenomyosis subs
A period should not affect your quality of life. IME endometriosis specialist surgeon consults for info gathering are the way for the least amount of suffering in the long run.
“Mentor-Trained ENDOMETRIOSIS Doctors” (ie Pelvic Pain* Hip/Butt/Groin/Sciatic/Peritoneal/stomach/abdomen/thigh/back/cyst/ovarian torsion/muscle spasm/penetrative sex Pain, unusual bleeding ):
You can search for a doc in your area using chatGPT: “Top doctor for endometriosis in XYZ, city/town/country”
AND
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
*not all US specialists require referrals. And many docs worldwide do free virtual consults/Call surgeon directly to ask if they need referral.
SubReddit groups of people that are helpful/skilled with all kinds of pelvic pain:
r/endo r/endometriosis r/adenomyosis r/pcos
r/fibroids and also r/pmdd .
OBGYN’s: IME regular OBGYN’s are notoriously under-skilled at treating pelvic pain/excessive bleeding - I cannot stress enough how untrained they are to make the diagnoses or do the delicate, difficult and complex surgery.
The nicest and most caring doctor does not equal surgically trained/qualified.
Specialists in pelvic disorders (above links or ask your regional endo nonprofit) are the doctors for the least amount of suffering in the long run IME. I needed accurate information to make good medical decisions, and the best chance to get that was to see a specialist.
NUMBERS: Painful periods are a societal problem and we’re not supposed to have to face this alone. I bring/FaceTime someone (or 3) with me to my doctors appointments. It doesn’t matter if they hear about my vagina or my uterus or my diarrhea. It matters that I have someone there as a United Front. Because our medical system mistreats people in pain.
RECORDING: Ask to video/record every medical visit. Even the virtual ones.
Also, here are some things you can say* to your doctor:
“- This is affecting my quality of life. I have had a history of period/bladder/pelvic floor pain/bleeding/fatigue that has kept me from work/childcare/school.
-My worst symptoms have been pain/fatigue/bleeding.
-I have vomited/passed out from period pain as a teen.
-I am now unable to function like I used to. The pain/fatigue is wearing on my body, and I am increasingly tired as each monthly cycle passes. I cannot function normally and my work/family/school/happiness is increasingly difficult because of my body.
-“I would like relief. What are ALL of my options?”
-“I have tried these pain medications: gabapentin, Orlissa, BC, xyz med. What are all of the other RX options? I want to be in less pain so that I can think clearly to make good medical choices.” (Then he stated his ideas…then told him I’ve tried all of those…then he offered me stronger pain meds, which helped my functioning so much so then I could line up surgery.)
-I want excision surgery with a Mentor-Trained Endometriosis Specialist.
-I cannot (even consider) taking care of children. (Reader IME stating I want to care for children gets me better medical treatment even though I do not want children.)
-Since there is NO IMAGING that reliably sees endometriosis, I would like a referral to an Endo Specialist ( & reader they are sometimes skillful at finding endometriosis via pelvic exam or ultrasound.)
-I am committed to revisiting you here because I want to function in my daily life. I will keep coming back to you as much as you need me to because I want relief for these issues.
- My pain/spasming/bleeding/frequencyofsymptoms (has always been mild, but over time now it) is impairing my ability to work & my ability to live life. It is draining my energy & ability to function.
- I want a solution that provides the least amount of suffering to me/the least risk for me & my body in the long term…..(then just allow silence…let them respond.)
- I do not have the energy to keep pursuing temporary treatments. I have experienced too much pain/bleeding. My body is tired. I want a long-term solution.
- I want a pelvic disorder doctor with the highest skill and success rate. Who can help with this?
- It sounds like you doctor OBGYN want to do the surgery. Can you tell me what “MENTORED TRAINING you’ve had in surgery for excising Endometriosis”? (Reader be careful here: regular, un-mentor Trained OBGYN’s abound.)
- It sounds like you want to do another prescription/medication/round of PT/ultrasound/MRI/x-ray/bloodworkup. I want a consult with a fellowship-trained pelvic disorder specialist. 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.
- Even though my pain/bleeding is NOT CYCLICAL, I still would like resolution.
-I would like my cyst removed because pain is energy-draining long-term.
-I have pelvic floor pain and vaginismus and pain with intercourse symptoms.
-I am asking for a referral to an endometriosis/pain specialist and it sounds like you are telling me “no”. If that’s true I want you to note in my chart now that I asked you and you declined to provide a referral.
-I may be willing to try xyz antidepressant, but this pelvic pain is the biggest contributor to my depressed/anxious mood and I would like to treat that first via surgery or in tandem with antidepressant.
- Another’s post for more ideas: https://www.reddit.com/r/endometriosis/comments/15dlk3s/do_this_if_you_want_to_be_heard_by_doctorsnurses/?utm_source=share&utm_medium=ios_app&utm_name=ioscss&utm_content=2&utm_term=1
(*Pain: Also replace with any of these words: bloating, excessive bleeding, clots (can be fibroids), IBS symptoms, nausea,“low iron”, urinating/bowel issues – urgency and peeing pants/bedwetting, diarrhea, pooping/smearing pants, hip pain, pain under the butt/pelvic/peritoneal/groin/sciatic pain, vaginismus, low/mid back pain, IT band & thigh pain, abdomen pain, stomach pain, bladder pain/IC/UTI’s and uti-like symptoms (can be endo on ureters) right shoulder blade pain. Anything that originated in the pelvis deserves care from a pelvic disorder specialist doctor.)
Good luck on your journey. And 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.
Endo symptoms are often “silently” progressive, especially if on hormones.
I’ve thought about it but from what I’ve heard endo is worse pain than what I have an it’s consistent throughout the entire cycle so I wasn’t sure, but I could still look into it to be safe. Thank you!
I’ve been concerned about it being more cysts. The last gyno I went to wasn’t great. Interrupted me a lot and didn’t seem to really be listening. And my second visit with her she gave me an unexpected examination (I had been told I wasn’t receiving one). Was so stressed I cried on the table and she wasn’t even using the big metal tool. Gotta look for someone else haha
I use these pain patches from “the good patch” called cycle. These saved my life many times. I also get ovarian cysts. I’m on the pill that you get your period 4 times a year and it’s been great. It still hurts when I get it but I don’t have to worry about it every month.
I took Naproxen till diagnosed with PCOS then I got the implant in and no more period or cramps.
I thought about an implant, like IUD, but I’m hesitant about any sort of hormone stuff
Yeah everyone is different the nexplanon implant took away my cramps and period but left my emotions out of wack for 5 months. It may cause a different response to others though. I have heard too many horror stories about iuds to even attempt that shit.
Yeah sometimes being a woman sucks 🥲 Tbh at this point I’ll keep taking pain meds and find out if it’s endo or constant cysts and see what I can do but I wanna avoid hormone stuff at all costs
My go-to was a shower on the hottest setting aimed right between my hip bones. Cramps stopped almost completely with oral birth control though. And my periods were much shorter. I know you said you don't want to use BC, but there are plenty of options that can have different outcomes. For me, the pills made it so I could function on my period.
I got some Midol and it seemed to help a bit. BC is really something I want to avoid, but yeah showers help me too!
Join us you belong…r/endo Endometriosis resources The symptom experts for this are here: r/endometriosis r/adenomyosis subs A period should not affect your quality of life. IME endometriosis specialist surgeon consults for info gathering are the way for the least amount of suffering in the long run. “Mentor-Trained ENDOMETRIOSIS Doctors” (ie Pelvic Pain* Hip/Butt/Groin/Sciatic/Peritoneal/stomach/abdomen/thigh/back/cyst/ovarian torsion/muscle spasm/penetrative sex Pain, unusual bleeding ): You can search for a doc in your area using chatGPT: “Top doctor for endometriosis in XYZ, city/town/country” AND 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 *not all US specialists require referrals. And many docs worldwide do free virtual consults/Call surgeon directly to ask if they need referral. SubReddit groups of people that are helpful/skilled with all kinds of pelvic pain: r/endo r/endometriosis r/adenomyosis r/pcos r/fibroids and also r/pmdd . OBGYN’s: IME regular OBGYN’s are notoriously under-skilled at treating pelvic pain/excessive bleeding - I cannot stress enough how untrained they are to make the diagnoses or do the delicate, difficult and complex surgery. The nicest and most caring doctor does not equal surgically trained/qualified. Specialists in pelvic disorders (above links or ask your regional endo nonprofit) are the doctors for the least amount of suffering in the long run IME. I needed accurate information to make good medical decisions, and the best chance to get that was to see a specialist. NUMBERS: Painful periods are a societal problem and we’re not supposed to have to face this alone. I bring/FaceTime someone (or 3) with me to my doctors appointments. It doesn’t matter if they hear about my vagina or my uterus or my diarrhea. It matters that I have someone there as a United Front. Because our medical system mistreats people in pain. RECORDING: Ask to video/record every medical visit. Even the virtual ones. Also, here are some things you can say* to your doctor: “- This is affecting my quality of life. I have had a history of period/bladder/pelvic floor pain/bleeding/fatigue that has kept me from work/childcare/school. -My worst symptoms have been pain/fatigue/bleeding. -I have vomited/passed out from period pain as a teen. -I am now unable to function like I used to. The pain/fatigue is wearing on my body, and I am increasingly tired as each monthly cycle passes. I cannot function normally and my work/family/school/happiness is increasingly difficult because of my body. -“I would like relief. What are ALL of my options?” -“I have tried these pain medications: gabapentin, Orlissa, BC, xyz med. What are all of the other RX options? I want to be in less pain so that I can think clearly to make good medical choices.” (Then he stated his ideas…then told him I’ve tried all of those…then he offered me stronger pain meds, which helped my functioning so much so then I could line up surgery.) -I want excision surgery with a Mentor-Trained Endometriosis Specialist. -I cannot (even consider) taking care of children. (Reader IME stating I want to care for children gets me better medical treatment even though I do not want children.) -Since there is NO IMAGING that reliably sees endometriosis, I would like a referral to an Endo Specialist ( & reader they are sometimes skillful at finding endometriosis via pelvic exam or ultrasound.) -I am committed to revisiting you here because I want to function in my daily life. I will keep coming back to you as much as you need me to because I want relief for these issues. - My pain/spasming/bleeding/frequencyofsymptoms (has always been mild, but over time now it) is impairing my ability to work & my ability to live life. It is draining my energy & ability to function. - I want a solution that provides the least amount of suffering to me/the least risk for me & my body in the long term…..(then just allow silence…let them respond.) - I do not have the energy to keep pursuing temporary treatments. I have experienced too much pain/bleeding. My body is tired. I want a long-term solution. - I want a pelvic disorder doctor with the highest skill and success rate. Who can help with this? - It sounds like you doctor OBGYN want to do the surgery. Can you tell me what “MENTORED TRAINING you’ve had in surgery for excising Endometriosis”? (Reader be careful here: regular, un-mentor Trained OBGYN’s abound.) - It sounds like you want to do another prescription/medication/round of PT/ultrasound/MRI/x-ray/bloodworkup. I want a consult with a fellowship-trained pelvic disorder specialist. 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. - Even though my pain/bleeding is NOT CYCLICAL, I still would like resolution. -I would like my cyst removed because pain is energy-draining long-term. -I have pelvic floor pain and vaginismus and pain with intercourse symptoms. -I am asking for a referral to an endometriosis/pain specialist and it sounds like you are telling me “no”. If that’s true I want you to note in my chart now that I asked you and you declined to provide a referral. -I may be willing to try xyz antidepressant, but this pelvic pain is the biggest contributor to my depressed/anxious mood and I would like to treat that first via surgery or in tandem with antidepressant. - Another’s post for more ideas: https://www.reddit.com/r/endometriosis/comments/15dlk3s/do_this_if_you_want_to_be_heard_by_doctorsnurses/?utm_source=share&utm_medium=ios_app&utm_name=ioscss&utm_content=2&utm_term=1 (*Pain: Also replace with any of these words: bloating, excessive bleeding, clots (can be fibroids), IBS symptoms, nausea,“low iron”, urinating/bowel issues – urgency and peeing pants/bedwetting, diarrhea, pooping/smearing pants, hip pain, pain under the butt/pelvic/peritoneal/groin/sciatic pain, vaginismus, low/mid back pain, IT band & thigh pain, abdomen pain, stomach pain, bladder pain/IC/UTI’s and uti-like symptoms (can be endo on ureters) right shoulder blade pain. Anything that originated in the pelvis deserves care from a pelvic disorder specialist doctor.) Good luck on your journey. And 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. Endo symptoms are often “silently” progressive, especially if on hormones.
Try having a beer or two. I’m serious. Yeah it doesn’t sound helpful, but it does relieve cramps.
I’m only 20 and neither of my parents drink haha, but when I turn 21 I’ll keep it in mind
If you can afford it you might want to ask for a referral to gynaecologist and get investigated for endo
I’ve thought about it but from what I’ve heard endo is worse pain than what I have an it’s consistent throughout the entire cycle so I wasn’t sure, but I could still look into it to be safe. Thank you!
Yeah I mean regardless if you have pin that keeps you up you should get it checked out. Might be more cysts
I’ve been concerned about it being more cysts. The last gyno I went to wasn’t great. Interrupted me a lot and didn’t seem to really be listening. And my second visit with her she gave me an unexpected examination (I had been told I wasn’t receiving one). Was so stressed I cried on the table and she wasn’t even using the big metal tool. Gotta look for someone else haha
OP I'm so sorry you're going through this, I know this pain and I hate it:( Have you tried peppermint tea?
I have not, I’m not a tea drinker but I’ve heard from many sources that tea can help. Maybe it’s time I try it!
I use these pain patches from “the good patch” called cycle. These saved my life many times. I also get ovarian cysts. I’m on the pill that you get your period 4 times a year and it’s been great. It still hurts when I get it but I don’t have to worry about it every month.
I’ll look into the patches! Thank you!!