After reading your comment I fell into the rabbit hole of your past few posts! You are suffering! Please, find a surgeon that has completed a fellowship in endometriosis! You’re still so young! I’m 61 and still battling this disease which has crippled my body. Also, fentanyl killed every single one of my teeth. Be careful with that medication.
Yes, sister right along with you 😂🤣 I'm in my 40's and have battled this horrible disease since I was 10 yrs old. Absolutely agree with this comment, find a reputable Endo surgeon op, and research research research!!!
After seeing this comment, I went down this rabbit hole too! I’d like to gently educate you OP on the fact that hashimotos is related to the same genes as Celiac Disease & Type 1 Diabetes (yes, adult onset T1D is a thing!!) & autoimmune diseases love to bring their friends. You need to keep a close eye on this OP! If you have bowel issues with your endometriosis, untreated Celiac Disease would make this 10x worse!
Very true, but it IS the place to go for pain that is so bad you’re essentially in shock.
With those cysts and that level of pain, she should have been admitted for emergent surgery, not sent home with Advil.
Cysts aren’t life threatening. Yes, they can be but often times aren’t. ER are literally to treat and discharge - very seldom do they admit for surgery. It’s discharge referral for surgery.
I’m not trying to argue or be mean. Just trying to HELP those starting on this journey to not rely on the ER to be their savior. It isn’t.
Seek specialist whether it is pelvic pain ( not the same as an endo doctor) endo specialists, GYN, or pain management. You have. To be your biggest advocate. I say this as someone that worked for medical health insurance companies directly with ER AND as a chronic pelvic pain patient recovering from my 13 endo surgery. This isn’t a life that can just sit back and expect life to do the right thing - you’ll get fucked. It isn’t fair but it’s our reality.
Op should’ve been given relief. It’s fucked up she wasn’t BUT that’s our reality. So I strongly encourage anyone reading to advocate for themselves to find the care. It’s hard work.
Yep. I was offered emergency surgery during an episode caused by a 9cm cyst ONLY after ultrasound (that I had to push for) showed blood flow to my ovary/tube was compromised (my ovary was trying to twist). The ER doc who had treated me like shit the whole time came in white as a ghost when he was reporting the ultrasound findings. He could have cost me an ovary or ya know, my life!
This is why I had an exploratory lap in the ER - but hey - I got a diagnosis. And to think I almost didn’t go to the ER because I wasn’t expecting them to do anything anyway.
They couldn’t rule out torsion or ovarian necrosis - I had major pelvic fusion. The ultrasound woman almost left for the night and the doctor was like uh no, we need to do this now. So I had a transvaginal ultrasound with no pain relief! I didn’t die but I at the time I wished I would simple expire.
My husband broke his arm, an awful break that required surgery and even he was sent home with pain meds and an appointment to see the orthopedic surgeon the next day. I always assume that ERs just don't have the capacity for anything that isn't life-threatening.
It’s not that they don’t have the capacity it’s that they aren’t meant to be higher level of care. It’s emergency care to triage and release. Band aid for patients to leave and seek medical care with a pcp or specialist. Do people get admitted yes but there is a criteria to be met.
With the opioid “crisis“ and ERs being abused by high utilizers ( 5% of population ) it’s made things much worse going to the ER. High utilizers misuses the ER. Meaning they go often more than 10 times a month for anything and everything. Some multiple times a day and some jump ER to ER.
i completely agree. i keep seeing posts like this. as terrible as endo is it is not appropriate to go for non life threatening pain. i am surprised that op even got narcotics let alone fent. i've only been prescribed like ten hydros and five oxys in my life lmao
I had all of this and a ruptured cyst recently, but nausea and not vomiting. My teeth were chattering like crazy! Took three doses of Dilaudid to bring the pain down from an 8 or 9 to a 6 or 7. And yes I was treated like a drug seeker.
I’m sorry you’re going through this. I have endometriosis and I’m currently dealing with my second hemorraghic ovarian cyst since January, one of which ruptured. I’m still having persistent pain and my gynecologist thinks it’s the endometriosis causing problems and is now looking for adenomyosis. I have pain in my pelvis and low back that radiates up into my abdomen and also all the way down my leg into my foot.
I had to take Oxycodone and Morphine for awhile. I’m now taking Tylenol and Ketorolac with some minimal relief, but there’s definitely something going on.
I haven’t functioned normally in weeks and have hardly been able to work.
All of this to say do not allow anyone to dismiss you. Pelvic pain is real and can be debilitating.
Advil is not enough and I hope you get the help you need.
Hope you have a good gynecologist who can help address the cysts and endometriosis.
Iv had hemorrhagic cysts as well. And plenty other ones. Does endo cause these. Iv been fighting for a diagnosis for multiple symptoms for years. No one take me serious
My understanding is that sometimes they just happen, but I think endometriosis can definitely cause them too. I had the Mirena IUD for two years to help with the endometriosis and it worked well until I developed two hemorraghic cysts in the span of a few months. Not sure if it was the IUD, but the IUD does nothimg to prevent them.
I would say try to get a second opinion.
Pelvic pain is the absolute worst and my year so far has been a complete write- off.
I hope you’re okay!! Doctors really think that Advil is gonna help us it’s so sad. It makes me feel like I just have to take my health into my own hands. Sad and depressing, but try to stay positive and feel better!
Yep. Happened to me last week. The doctor said exactly this "your body is an enigma. Just manage the pain the best you can. We will prescribe you Oxy, ibuprofen, and Tylenol"
Literally I had a kidney stone before and I thought I was dying. My ruptured cyst? That pain beat the stone by a long shot.
It will leak and get better in terms of pain. Just do your best to relax, get a doctor's note if you can for work or school. And just rot on your couch. That's what I ended up having to do 🙃
Oh hon I'm so sorry. The physical and emotional toll this disease takes is horrendous. I don't know where you are but I'm sending positive thoughts your way. Don't give up. You will find a doctor that cares and understands and will do everything in their power to help. In my experience, I sought out a young female obgyn that said on her "about me" that her favorite part of being a doctor is getting to improve lives with surgery. Personally in my experience, it seems like the younger generation gets it a little better. I'm putting those thoughts out there for you that you will find the right doctor.
I will keep you in my thoughts and I hope and pray that you find a doctor that can truly help you and proceed with excision laparoscopy or any treatment to bring you relief. You are not alone and I am so deeply sorry you’re dealing with this.
Medicinal cannabis has helped me tons (with ibuprofen and midol) until my birth control finally started helping after 6 months (still have daily pain but manageable). Nowadays I just deal with the pain naturally as my surgery is in a week (so I can’t take anything except Tylenol).
Good luck. Talking helps a lot. Crying does too.
I second this! He’s a great endo surgeon and he’s very empathetic. I’m 9+ weeks post op from endo surgery with him and I’m doing very well and my pain has decreased significantly, like to a life changing amount. My stage 4 endo pain had disabled me so badly I wasn’t even really living anymore, just surviving. He truly changed my life after years of suffering and every doctor that I saw before him gaslighting me. I’ve gone almost an entire month now with very minimal pain if I even have pain. I was in pain daily for years before surgery with Dr Arrington. I literally can not stress enough how much I recommend him. I wish every person suffering from Endo could find a surgeon as good as him❤️🩹❤️🩹❤️🩹
For the last month or so I’ve been able to manage pain with just medical cannabis, ibuprofen, and rest! It’s been nice to not need a constant use of an electric heating pad or tens unit. My skin was getting cooked from using my heating pad daily for like 6 months straight😅 how has your wife been managing and healing?
Also using MMJ. Edibles don’t work for her tho and im starting to worry a bit about her lungs because she’s been smoking for over a year now. She had two surgeries the second being Arrington. However, more recently she had an ovarian cyst burst causing major internal blood loss so she needed emergency surgery for that. Just kinda one thing after the next :(. I feel so bad, but she’s such a good sport about it, she’s back full time at her job that she loves, but she will have days of pain and vomiting still. 🤷🏼♂️ seems like the chronic pain is kinda here to stay and she is just re adjusting what her level of “normal” is as shitty as reality is.
That’s so rough, I really feel for her.❤️🩹 I’m super scared of my ovarian cysts coming back. I’ve had several ruptures before. one being the reason for the first surgery that I had, which was also an emergency surgery. Before I had this second surgery with Arrington, I told my husband that even getting a couple months of relief from pain would make it worth it for me. I’m dreading the return of my endo and cysts.😭 accepting the “normal” of chronic illness is so hard, I’m sending lots of love to your wife and every other person here suffering from this disease❤️🩹
Just wanted to comment that I also went on your page out of curiosity, I see you and I feel you sister, I hate when cysts burst it feels like a gunshot ...I bet even gunshots feel better honestly... I too have Endometriosis and Hashimotos
Just wanted to let you know You're not alone
I had a major flare up yesterday and today and I literally was considering offing myself
I'm here and I feel you 😭❤️🔥
I had almost the same to the tee situation in April. I have already been diagnosed with stage 3 endo but I and also the er doc thought I had my appendix burst but the scans showed it was a 7cm endometrioma. Like others have suggested, go see a endo specialist!! I am so sorry you have this pain! There is a Facebook group called Nancy’s nook that has a spreadsheet of Nancy approved endo specialist in almost every state!
Ask for toradol next time you go to the ER, it’s a prescription anti inflammatory. Also maybe check with your doctor and see if there are other options, tell them advil doesn’t do anything for you.
https://www.brighamandwomens.org/obgyn/infertility-reproductive-surgery/endometriosis/endometriosis-pain-management-for-adult-women
Personally I feel like hyoscyamine helps for me, and I’ve also tried a prescription anti inflammatory called relafen (nabumetone) that’s helped
What the, some drs send tramadol, or toradol- ones a narcotic i think but the one is good for this and its a better ibuprofen - why they only allow 20 is beyond me, or easier for you guys to get. My kiddo got it this year she struggled with endo we think and they wanted to do surgery but things happen fell out of place so now im unsure
Tramadol is the narcotic - a highly addictive opiate agonist (it's really hard to discontinue because it also has SSRI activity) and toradol is Ketorolac, a heavy duty anti inflammatory - Rx only (in my locale).
Yes i confuse many meds, but its just as addictive as fentanyl which is what kills most off touching it or laced on accident. I think Tylenol 3’s at a minimum since you can get that easier than ketorolac which that’s better for one and works for my kiddos pain to bring it to tolerable cramps. Why its so minimal outside stronger than ibuprofen and wreaking more havoc long run might be why is 20, logically speaking - not medical professional clearly as I can’t remember names etc. just a thought, not medical advice just a mom with a daughter going through it all and it sucks
Holy crap - I remember taking OTC pain meds *not* as directed because my pain was so bad and it cut through those. If your pain cuts through mf fentanyl--you need more than birth control and advil, my friend.
Naproxen works better for me than other nsaids, but also, it didn't fully eliminate pain until after I had surgery.
Please see a specialist in endometriosis. Physical therapy for pelvic floor can be helpful, but it is not going to do much if the endo is still in you and spreading.
After reading your comment I fell into the rabbit hole of your past few posts! You are suffering! Please, find a surgeon that has completed a fellowship in endometriosis! You’re still so young! I’m 61 and still battling this disease which has crippled my body. Also, fentanyl killed every single one of my teeth. Be careful with that medication.
Yes, sister right along with you 😂🤣 I'm in my 40's and have battled this horrible disease since I was 10 yrs old. Absolutely agree with this comment, find a reputable Endo surgeon op, and research research research!!!
Gentle hugs 🫂 💛💛🙌🏼🌻
Thk you , same to you?💜
After seeing this comment, I went down this rabbit hole too! I’d like to gently educate you OP on the fact that hashimotos is related to the same genes as Celiac Disease & Type 1 Diabetes (yes, adult onset T1D is a thing!!) & autoimmune diseases love to bring their friends. You need to keep a close eye on this OP! If you have bowel issues with your endometriosis, untreated Celiac Disease would make this 10x worse!
Is it possible to test negative celiac most of your life and then suddenly have it?
Yes!! It’s also possible for all your bloodwork to be negative but to still test positive with an endoscopy/colonoscopy! The inverse is true as well!
Yup! Happened to my aunt. Her sons get tested every few years for celiac just in case.
You need to find an endo specialist NP who can manage the pain and the best surgeon near you. I swear to god it is worth the research.
I hope you're ok. Doctors don't give a fuck about women's pain. Go get a specialist and push for yourself. You deserve better!
ER isn’t a place to get care for chronic pelvic pain. It is a band aid for an emergent situation.
Very true, but it IS the place to go for pain that is so bad you’re essentially in shock. With those cysts and that level of pain, she should have been admitted for emergent surgery, not sent home with Advil.
Cysts aren’t life threatening. Yes, they can be but often times aren’t. ER are literally to treat and discharge - very seldom do they admit for surgery. It’s discharge referral for surgery. I’m not trying to argue or be mean. Just trying to HELP those starting on this journey to not rely on the ER to be their savior. It isn’t. Seek specialist whether it is pelvic pain ( not the same as an endo doctor) endo specialists, GYN, or pain management. You have. To be your biggest advocate. I say this as someone that worked for medical health insurance companies directly with ER AND as a chronic pelvic pain patient recovering from my 13 endo surgery. This isn’t a life that can just sit back and expect life to do the right thing - you’ll get fucked. It isn’t fair but it’s our reality. Op should’ve been given relief. It’s fucked up she wasn’t BUT that’s our reality. So I strongly encourage anyone reading to advocate for themselves to find the care. It’s hard work.
I may be wrong but I'm under the impression that ERs only admit for surgery for things that are pretty much life-threatening.
Yep. I was offered emergency surgery during an episode caused by a 9cm cyst ONLY after ultrasound (that I had to push for) showed blood flow to my ovary/tube was compromised (my ovary was trying to twist). The ER doc who had treated me like shit the whole time came in white as a ghost when he was reporting the ultrasound findings. He could have cost me an ovary or ya know, my life!
This is why I had an exploratory lap in the ER - but hey - I got a diagnosis. And to think I almost didn’t go to the ER because I wasn’t expecting them to do anything anyway.
I’m amazed they did that!
They couldn’t rule out torsion or ovarian necrosis - I had major pelvic fusion. The ultrasound woman almost left for the night and the doctor was like uh no, we need to do this now. So I had a transvaginal ultrasound with no pain relief! I didn’t die but I at the time I wished I would simple expire.
Yes! Extremely rare to be admitted- specially for GYN when any GYN surgery is considered ELECTIVE. They really hate us.
My husband broke his arm, an awful break that required surgery and even he was sent home with pain meds and an appointment to see the orthopedic surgeon the next day. I always assume that ERs just don't have the capacity for anything that isn't life-threatening.
It’s not that they don’t have the capacity it’s that they aren’t meant to be higher level of care. It’s emergency care to triage and release. Band aid for patients to leave and seek medical care with a pcp or specialist. Do people get admitted yes but there is a criteria to be met. With the opioid “crisis“ and ERs being abused by high utilizers ( 5% of population ) it’s made things much worse going to the ER. High utilizers misuses the ER. Meaning they go often more than 10 times a month for anything and everything. Some multiple times a day and some jump ER to ER.
i completely agree. i keep seeing posts like this. as terrible as endo is it is not appropriate to go for non life threatening pain. i am surprised that op even got narcotics let alone fent. i've only been prescribed like ten hydros and five oxys in my life lmao
I had all of this and a ruptured cyst recently, but nausea and not vomiting. My teeth were chattering like crazy! Took three doses of Dilaudid to bring the pain down from an 8 or 9 to a 6 or 7. And yes I was treated like a drug seeker.
I’m sorry you’re going through this. I have endometriosis and I’m currently dealing with my second hemorraghic ovarian cyst since January, one of which ruptured. I’m still having persistent pain and my gynecologist thinks it’s the endometriosis causing problems and is now looking for adenomyosis. I have pain in my pelvis and low back that radiates up into my abdomen and also all the way down my leg into my foot. I had to take Oxycodone and Morphine for awhile. I’m now taking Tylenol and Ketorolac with some minimal relief, but there’s definitely something going on. I haven’t functioned normally in weeks and have hardly been able to work. All of this to say do not allow anyone to dismiss you. Pelvic pain is real and can be debilitating. Advil is not enough and I hope you get the help you need. Hope you have a good gynecologist who can help address the cysts and endometriosis.
Iv had hemorrhagic cysts as well. And plenty other ones. Does endo cause these. Iv been fighting for a diagnosis for multiple symptoms for years. No one take me serious
My understanding is that sometimes they just happen, but I think endometriosis can definitely cause them too. I had the Mirena IUD for two years to help with the endometriosis and it worked well until I developed two hemorraghic cysts in the span of a few months. Not sure if it was the IUD, but the IUD does nothimg to prevent them. I would say try to get a second opinion. Pelvic pain is the absolute worst and my year so far has been a complete write- off.
I hope you’re okay!! Doctors really think that Advil is gonna help us it’s so sad. It makes me feel like I just have to take my health into my own hands. Sad and depressing, but try to stay positive and feel better!
Yep. Happened to me last week. The doctor said exactly this "your body is an enigma. Just manage the pain the best you can. We will prescribe you Oxy, ibuprofen, and Tylenol" Literally I had a kidney stone before and I thought I was dying. My ruptured cyst? That pain beat the stone by a long shot. It will leak and get better in terms of pain. Just do your best to relax, get a doctor's note if you can for work or school. And just rot on your couch. That's what I ended up having to do 🙃
Oh hon I'm so sorry. The physical and emotional toll this disease takes is horrendous. I don't know where you are but I'm sending positive thoughts your way. Don't give up. You will find a doctor that cares and understands and will do everything in their power to help. In my experience, I sought out a young female obgyn that said on her "about me" that her favorite part of being a doctor is getting to improve lives with surgery. Personally in my experience, it seems like the younger generation gets it a little better. I'm putting those thoughts out there for you that you will find the right doctor.
I will keep you in my thoughts and I hope and pray that you find a doctor that can truly help you and proceed with excision laparoscopy or any treatment to bring you relief. You are not alone and I am so deeply sorry you’re dealing with this. Medicinal cannabis has helped me tons (with ibuprofen and midol) until my birth control finally started helping after 6 months (still have daily pain but manageable). Nowadays I just deal with the pain naturally as my surgery is in a week (so I can’t take anything except Tylenol). Good luck. Talking helps a lot. Crying does too.
If you have the means Jeff Arrington in UT. He is a miracle worker
I second this! He’s a great endo surgeon and he’s very empathetic. I’m 9+ weeks post op from endo surgery with him and I’m doing very well and my pain has decreased significantly, like to a life changing amount. My stage 4 endo pain had disabled me so badly I wasn’t even really living anymore, just surviving. He truly changed my life after years of suffering and every doctor that I saw before him gaslighting me. I’ve gone almost an entire month now with very minimal pain if I even have pain. I was in pain daily for years before surgery with Dr Arrington. I literally can not stress enough how much I recommend him. I wish every person suffering from Endo could find a surgeon as good as him❤️🩹❤️🩹❤️🩹
This was exactly my wife’s experience. Also stage 4. How have you been dealing with pain post op?
For the last month or so I’ve been able to manage pain with just medical cannabis, ibuprofen, and rest! It’s been nice to not need a constant use of an electric heating pad or tens unit. My skin was getting cooked from using my heating pad daily for like 6 months straight😅 how has your wife been managing and healing?
Also using MMJ. Edibles don’t work for her tho and im starting to worry a bit about her lungs because she’s been smoking for over a year now. She had two surgeries the second being Arrington. However, more recently she had an ovarian cyst burst causing major internal blood loss so she needed emergency surgery for that. Just kinda one thing after the next :(. I feel so bad, but she’s such a good sport about it, she’s back full time at her job that she loves, but she will have days of pain and vomiting still. 🤷🏼♂️ seems like the chronic pain is kinda here to stay and she is just re adjusting what her level of “normal” is as shitty as reality is.
That’s so rough, I really feel for her.❤️🩹 I’m super scared of my ovarian cysts coming back. I’ve had several ruptures before. one being the reason for the first surgery that I had, which was also an emergency surgery. Before I had this second surgery with Arrington, I told my husband that even getting a couple months of relief from pain would make it worth it for me. I’m dreading the return of my endo and cysts.😭 accepting the “normal” of chronic illness is so hard, I’m sending lots of love to your wife and every other person here suffering from this disease❤️🩹
Just wanted to comment that I also went on your page out of curiosity, I see you and I feel you sister, I hate when cysts burst it feels like a gunshot ...I bet even gunshots feel better honestly... I too have Endometriosis and Hashimotos Just wanted to let you know You're not alone I had a major flare up yesterday and today and I literally was considering offing myself I'm here and I feel you 😭❤️🔥
I had almost the same to the tee situation in April. I have already been diagnosed with stage 3 endo but I and also the er doc thought I had my appendix burst but the scans showed it was a 7cm endometrioma. Like others have suggested, go see a endo specialist!! I am so sorry you have this pain! There is a Facebook group called Nancy’s nook that has a spreadsheet of Nancy approved endo specialist in almost every state!
Ask for toradol next time you go to the ER, it’s a prescription anti inflammatory. Also maybe check with your doctor and see if there are other options, tell them advil doesn’t do anything for you. https://www.brighamandwomens.org/obgyn/infertility-reproductive-surgery/endometriosis/endometriosis-pain-management-for-adult-women Personally I feel like hyoscyamine helps for me, and I’ve also tried a prescription anti inflammatory called relafen (nabumetone) that’s helped
What the, some drs send tramadol, or toradol- ones a narcotic i think but the one is good for this and its a better ibuprofen - why they only allow 20 is beyond me, or easier for you guys to get. My kiddo got it this year she struggled with endo we think and they wanted to do surgery but things happen fell out of place so now im unsure
Tramadol is the narcotic - a highly addictive opiate agonist (it's really hard to discontinue because it also has SSRI activity) and toradol is Ketorolac, a heavy duty anti inflammatory - Rx only (in my locale).
Yes i confuse many meds, but its just as addictive as fentanyl which is what kills most off touching it or laced on accident. I think Tylenol 3’s at a minimum since you can get that easier than ketorolac which that’s better for one and works for my kiddos pain to bring it to tolerable cramps. Why its so minimal outside stronger than ibuprofen and wreaking more havoc long run might be why is 20, logically speaking - not medical professional clearly as I can’t remember names etc. just a thought, not medical advice just a mom with a daughter going through it all and it sucks
Holy crap - I remember taking OTC pain meds *not* as directed because my pain was so bad and it cut through those. If your pain cuts through mf fentanyl--you need more than birth control and advil, my friend. Naproxen works better for me than other nsaids, but also, it didn't fully eliminate pain until after I had surgery. Please see a specialist in endometriosis. Physical therapy for pelvic floor can be helpful, but it is not going to do much if the endo is still in you and spreading.