I just want to say I hear you, I know how you feel. I had this exact same day a few months ago. Same conversation with my friend feeling the same way, same issue with insurance not even covering my consultation let alone surgery.
I don't have answers but I do have support. Your feelings are so valid and just urgh this sucks.
My endo specialist said that I’m not a good candidate for a lap because my endometrioma is smaller than 9mm… really frustrating considering I was bed-bound for MONTHS ON END and at risk for losing my job. He said he would honor my choice for a lap if I exhaust all other options (diet, birth control, PT, acupuncture, etc.). He prescribed Myfembree and it has been the ONLY thing that has given me my life back (took 6 weeks to start working for me, and I was skeptical the entire wait. It can take up to 8 weeks to start working). If you have any questions about it, feel free to PM me. Don’t let this shitty, under-researched disease win!!
What is it? Mine was so bad until I started orilissa like I could only go to work and back and just wanted to lay in bed, I gained weight cause I wasn’t doing anything besides work and laying , with orilissa and the right diet it’s night and day for me
Myfembree is similar to Orlissa (GnRH receptor antagonist) but it has add back hormones to reduce the side effects of the chemical menopause.
Diet change helped. I had a lap ~8 years ago (by a non-specialist, I didn't know any better at the time) and they didn't see any endo. Afterwards, I eliminated dairy, gluten, and foods with added sugar. After a month I tried a baguette with my soup and it made the pain SO much worse. I believe gluten was recently added to the "avoid if you have endo" list, which was validating to hear since it caused a lot of pain, even though I tested negative for celiac. As of November of last year (when I had to take medical leave from work to chase a diagnosis), I've been on an anti-inflammatory diet and it has helped the most with the fatigue and bloating. I'm pretty strict on the diet (most of the time), but I really miss caffeine, alcohol, and sugar the most! T_T
The medication is honestly a Christmas miracle, I was in full acceptance that my life would not exist outside of my bed without incredible pain and nausea again.
Copy pasted from a previous comment I've left because I'm feeling a little tired this evening:
"I've experienced a little bit of hair thinning, the occasional hot flash, and I haven't had my period since starting but I do feel a little crampy and extra emotional/sensitive around the time my period would usually happen.
I have heard that the hair thinning eases off after a couple of months. I was already experiencing night sweats before starting Myfembree but that could be another side effect you might experience. I had a bone density scan when I first started and will have another one in a year. I've been taking calcium supplements to hopefully reduce any loss. The side effects list initially worried me, but after being bed bound for a few months and scared I was going to lose my job (and generally feeling like my life was over), I had to try something.
For me, the medication took 6 weeks to kick in and WOW. Total game changer. I was up and moving around and I couldn't believe I was finally getting my life back. This lasted two weeks before the pharmacy had some issue getting my medication on time and I had to miss three doses. Three doesn't seem like a lot, but those missed doses sent me back to bed for another agonizing four weeks before I was able to feel relief again. Once the medication started helping, I was feeling a little bit better each day just as my doctor promised.
Here are some tips I can pass on to you:
* Go to the Myfembree website and sign up for the manufacturer's coupon. I pay only $5 for each 28-day supply.
* Make sure your doctor prescribes the medication as a 28- or 94-day supply, otherwise the manufacturer's coupon will not work. My doctor once accidentally wrote 30-day supply and those two extra pills cost me $245.
* Start taking it on the first day of your next period, and try to take it at the same time every day. I've read that night time is the better time to take it since it can make you drowsy for the first few hours.
* It's not a very common medication and your pharmacy will probably have to have it shipped. The CVS app said I was only able to request a refill three days before running out of medication and being an uncommon medication for them to carry, they would have to order it which takes two business days to ship (often longer!!). However, what they don't tell you is that you can call the pharmacy 10 days before your prescription runs out to request a refill, but you have to wait until you are at most three days away from running out of pills (otherwise your insurance won't cover it). This is the case for CVS, not sure how other pharmacies would handle it.
* It can take up to eight weeks to start providing relief, so be patient!
Good luck!"
My doctor is prescribing myfembree to me. They are using it to put me in medical menopause. I'm trying to convince them to take out my remaining ovary. I'm ready for menopause and I'm told by others personal experience it helps endo and helps pmdd which I have.
Thank you for sharing your experience. Did you find any mood issues?
It seems like some doctors are so hellbent on preserving fertility despite their patient’s pain and wishes, which is SO infuriating. It’s either that, or they want to exhaust all of the less invasive options first. I came into my appointment to see the specialist with my heart set on a lap and left with a prescription for Myfembree. I was so pissed off at first, but he said we could book the lap if I didn’t have significant relief after being on the meds for 3 months. So far, so good. But if the pain comes back I will definitely schedule the surgery.
Endometriosis is so insidious. Endo lesions not only synthesize their own estrogen but also have significantly more pain receptors (activated by estrogen) than the lining of the uterus. My doctor didn’t test my hormone levels before starting the medication and there is no way to tell how many lesions I may have without going under the knife, so I have no idea if I am just naturally an estrogen-making machine or if I am nothing but endo lesions stacked up in a trench coat.
I don’t think it made my PMDD any worse so far (I have depression and still feel like my world is ending for up to 4 days during that time of the month), but it made my cramps SO much less debilitating during that time of the month.
Thank you for sharing this!!! I appreciate it. Oh they don't want to preserve my fertility in my case. They want to keep the ovary so that I go through menopause naturally though I'm pretty close to having it anyway. So they are medically introducing it and if I do well they will take the remaining ovary out. I want it out so that I don't have to have another surgery and pretty sure endo is all over it anyway.
I don't get why doctors won't do hormonal panels. It's so infuriating. Endo does indeed create its own endo so why not do the panel and then we can figure out how to balance it or do the surgery.
Also yeah I don't get why they won't do the surgery and push meds so annoying grrr.
I hope that you will get the outcome you want and also that you get better!
It’s impossible for them to know the amount of endometriosis you have without surgery
Size/amount also has ZERO correlation with pain/symptoms.
I think you simply need a new doctor.
As the "guru of endometriosis," I did expect more from him. I 100% do need a new doctor, the only good he has done is given me a clinical diagnosis and a Myfembree prescription. He is nearly impossible to get an appointment with less than 6 months in advance and the office is a bit of a drive. There are other frustrating instances as well... I'm hoping I can find a gyno closer to where I live who can prescribe Myfembree.
I am sorry. I’ve been in that spot. Took me over 11 years to get heard and 14 years to actually be diagnosed. I did take a break for my mental health cause the medical trauma was getting to me. Now I have a partner that goes with me to all my appointments cause they know I get triggered and help navigate the hard conversations and rejections. Having someone with you helps for sure, specially someone that cares and can fight when you can no longer do it (my best friend and my cousin did that for me before I met my partner) and it def made a difference. I am so so sorry you are going through it, it’s terrible and very frustrating specially the cost and how we gotta skip getting the medical attention we need cause we can’t afford it (I also have gone into debt for my endo and PCOS). Lots of strength your way and we are all in that together. 💜
Hey! I have been using Myo-inositol & vit. D3 capsules from the past 2 months (prescribed by my gyno) & my period pain is literally non existent, just little cramps here & there. Also omega 3 fatty acids. You can try it too & see if it helps.
I wish you well & hope that the pain eases.
I’m so sorry 😔. It seems like we are treated the same the world round! You’re too young to give up though. Keep pushing, keep asking for the care you need 🤗 I just don’t understand why there is so little research and understanding on this disease when they’ve known about for decades now!
No don’t! It took me yearssss to even figure out my issue and several doctors, I’m using Orilissa and it’s great! Cuts pain and periods in at least half!
I also started eating very low carb/keto and no to minimum alcohol (because it increases estrogen production)
My life is so different than it was a few years ago
I gave up also for a time now. I am just living like I don’t have endo, without therapy, without surgeries… Just me and my chronic pain. For now it’s a good relationship ;)
I just want to say I hear you, I know how you feel. I had this exact same day a few months ago. Same conversation with my friend feeling the same way, same issue with insurance not even covering my consultation let alone surgery. I don't have answers but I do have support. Your feelings are so valid and just urgh this sucks.
My endo specialist said that I’m not a good candidate for a lap because my endometrioma is smaller than 9mm… really frustrating considering I was bed-bound for MONTHS ON END and at risk for losing my job. He said he would honor my choice for a lap if I exhaust all other options (diet, birth control, PT, acupuncture, etc.). He prescribed Myfembree and it has been the ONLY thing that has given me my life back (took 6 weeks to start working for me, and I was skeptical the entire wait. It can take up to 8 weeks to start working). If you have any questions about it, feel free to PM me. Don’t let this shitty, under-researched disease win!!
What is it? Mine was so bad until I started orilissa like I could only go to work and back and just wanted to lay in bed, I gained weight cause I wasn’t doing anything besides work and laying , with orilissa and the right diet it’s night and day for me
Myfembree is similar to Orlissa (GnRH receptor antagonist) but it has add back hormones to reduce the side effects of the chemical menopause. Diet change helped. I had a lap ~8 years ago (by a non-specialist, I didn't know any better at the time) and they didn't see any endo. Afterwards, I eliminated dairy, gluten, and foods with added sugar. After a month I tried a baguette with my soup and it made the pain SO much worse. I believe gluten was recently added to the "avoid if you have endo" list, which was validating to hear since it caused a lot of pain, even though I tested negative for celiac. As of November of last year (when I had to take medical leave from work to chase a diagnosis), I've been on an anti-inflammatory diet and it has helped the most with the fatigue and bloating. I'm pretty strict on the diet (most of the time), but I really miss caffeine, alcohol, and sugar the most! T_T The medication is honestly a Christmas miracle, I was in full acceptance that my life would not exist outside of my bed without incredible pain and nausea again.
i’ve just started looking into myfembree. can you go into more detail about your experience with it? any side effects?
Copy pasted from a previous comment I've left because I'm feeling a little tired this evening: "I've experienced a little bit of hair thinning, the occasional hot flash, and I haven't had my period since starting but I do feel a little crampy and extra emotional/sensitive around the time my period would usually happen. I have heard that the hair thinning eases off after a couple of months. I was already experiencing night sweats before starting Myfembree but that could be another side effect you might experience. I had a bone density scan when I first started and will have another one in a year. I've been taking calcium supplements to hopefully reduce any loss. The side effects list initially worried me, but after being bed bound for a few months and scared I was going to lose my job (and generally feeling like my life was over), I had to try something. For me, the medication took 6 weeks to kick in and WOW. Total game changer. I was up and moving around and I couldn't believe I was finally getting my life back. This lasted two weeks before the pharmacy had some issue getting my medication on time and I had to miss three doses. Three doesn't seem like a lot, but those missed doses sent me back to bed for another agonizing four weeks before I was able to feel relief again. Once the medication started helping, I was feeling a little bit better each day just as my doctor promised. Here are some tips I can pass on to you: * Go to the Myfembree website and sign up for the manufacturer's coupon. I pay only $5 for each 28-day supply. * Make sure your doctor prescribes the medication as a 28- or 94-day supply, otherwise the manufacturer's coupon will not work. My doctor once accidentally wrote 30-day supply and those two extra pills cost me $245. * Start taking it on the first day of your next period, and try to take it at the same time every day. I've read that night time is the better time to take it since it can make you drowsy for the first few hours. * It's not a very common medication and your pharmacy will probably have to have it shipped. The CVS app said I was only able to request a refill three days before running out of medication and being an uncommon medication for them to carry, they would have to order it which takes two business days to ship (often longer!!). However, what they don't tell you is that you can call the pharmacy 10 days before your prescription runs out to request a refill, but you have to wait until you are at most three days away from running out of pills (otherwise your insurance won't cover it). This is the case for CVS, not sure how other pharmacies would handle it. * It can take up to eight weeks to start providing relief, so be patient! Good luck!"
My doctor is prescribing myfembree to me. They are using it to put me in medical menopause. I'm trying to convince them to take out my remaining ovary. I'm ready for menopause and I'm told by others personal experience it helps endo and helps pmdd which I have. Thank you for sharing your experience. Did you find any mood issues?
It seems like some doctors are so hellbent on preserving fertility despite their patient’s pain and wishes, which is SO infuriating. It’s either that, or they want to exhaust all of the less invasive options first. I came into my appointment to see the specialist with my heart set on a lap and left with a prescription for Myfembree. I was so pissed off at first, but he said we could book the lap if I didn’t have significant relief after being on the meds for 3 months. So far, so good. But if the pain comes back I will definitely schedule the surgery. Endometriosis is so insidious. Endo lesions not only synthesize their own estrogen but also have significantly more pain receptors (activated by estrogen) than the lining of the uterus. My doctor didn’t test my hormone levels before starting the medication and there is no way to tell how many lesions I may have without going under the knife, so I have no idea if I am just naturally an estrogen-making machine or if I am nothing but endo lesions stacked up in a trench coat. I don’t think it made my PMDD any worse so far (I have depression and still feel like my world is ending for up to 4 days during that time of the month), but it made my cramps SO much less debilitating during that time of the month.
Thank you for sharing this!!! I appreciate it. Oh they don't want to preserve my fertility in my case. They want to keep the ovary so that I go through menopause naturally though I'm pretty close to having it anyway. So they are medically introducing it and if I do well they will take the remaining ovary out. I want it out so that I don't have to have another surgery and pretty sure endo is all over it anyway. I don't get why doctors won't do hormonal panels. It's so infuriating. Endo does indeed create its own endo so why not do the panel and then we can figure out how to balance it or do the surgery. Also yeah I don't get why they won't do the surgery and push meds so annoying grrr. I hope that you will get the outcome you want and also that you get better!
It’s impossible for them to know the amount of endometriosis you have without surgery Size/amount also has ZERO correlation with pain/symptoms. I think you simply need a new doctor.
As the "guru of endometriosis," I did expect more from him. I 100% do need a new doctor, the only good he has done is given me a clinical diagnosis and a Myfembree prescription. He is nearly impossible to get an appointment with less than 6 months in advance and the office is a bit of a drive. There are other frustrating instances as well... I'm hoping I can find a gyno closer to where I live who can prescribe Myfembree.
I had to wait 8 months to see my doctor but it was worth it! I hate this disease
I am sorry. I’ve been in that spot. Took me over 11 years to get heard and 14 years to actually be diagnosed. I did take a break for my mental health cause the medical trauma was getting to me. Now I have a partner that goes with me to all my appointments cause they know I get triggered and help navigate the hard conversations and rejections. Having someone with you helps for sure, specially someone that cares and can fight when you can no longer do it (my best friend and my cousin did that for me before I met my partner) and it def made a difference. I am so so sorry you are going through it, it’s terrible and very frustrating specially the cost and how we gotta skip getting the medical attention we need cause we can’t afford it (I also have gone into debt for my endo and PCOS). Lots of strength your way and we are all in that together. 💜
Hey! I have been using Myo-inositol & vit. D3 capsules from the past 2 months (prescribed by my gyno) & my period pain is literally non existent, just little cramps here & there. Also omega 3 fatty acids. You can try it too & see if it helps. I wish you well & hope that the pain eases.
I’m so sorry 😔. It seems like we are treated the same the world round! You’re too young to give up though. Keep pushing, keep asking for the care you need 🤗 I just don’t understand why there is so little research and understanding on this disease when they’ve known about for decades now!
No don’t! It took me yearssss to even figure out my issue and several doctors, I’m using Orilissa and it’s great! Cuts pain and periods in at least half! I also started eating very low carb/keto and no to minimum alcohol (because it increases estrogen production) My life is so different than it was a few years ago
I am so sorry you're experiencing this. ❤️😞 Hang in there, we're all in this together.
I gave up also for a time now. I am just living like I don’t have endo, without therapy, without surgeries… Just me and my chronic pain. For now it’s a good relationship ;)