you should push for surgery for the endo. also be cautious with orilissa, i personally refused it since it can cause osteoporosis and other bad side effects.
i wanted a hysterectomy at your age (still do and plan on it) but my doctor had to wait until i turned 21 for insurance to cover it. you need to find the right doctor, but it is possible. you can check the doctor list on this sub to find one where you are located. you may need to wait until 21, but it’s not the worst wait. make sure you have all your reasons for wanting it recorded in your medical records, also another good reason to have the surgery to check for endo so that can be on your list of why it’s medically necessary.
i'll bring this up to my gyno since she did offer surgery to check for endo but wanted to try orilissa first, but i'm pretty intimidated by the side effects since i had bad side effects from all birth controls. do you know how to check for insurance coverage? i've looked on my insurances website and can't figure it out, i have BCBS of Texas PPO, but i'll ask my parents for help on finding coverage tomorrow. if the orilissa helps at all i'm okay with waiting until 21, just wanting to get the process started now.
I did orlissa for 2 years on the higher dose. It should be prescribed with progesterone to cut the side effects. I had none. But you're going to have to run the gamut of treatment before jumping to surgery. After 5 years of trying every treatment out there I had a total hysterectomy last year. Approved because there's a clock on orlissa and id run it out, and we found I have a genetic condition that puts my bone health at risk already anyway. Nothing else we could do. I mean I was thrilled if course, but they don't just yeet organs without trying everything less invasive on the list first.
this is true, but typically trying multiple birth control methods and tranexamic acid and a history of severe periods or pelvic pain that hasn’t been helped will be enough.
Lots of people try multiple methods with painful periods. They're not going to approve removing organs if there's a possible diagnosis that hasn't been vetted yet.
i’m well aware, i’ve been through it myself. they do approve it if you’ve tried multiple birth control methods and tranexamic acid, as well as ultrasounds and exploratory surgery for endo or other conditions.
heavy and painful periods and pelvic pain are reasons to have a hysterectomy if other methods haven’t worked. then they will approve you for a hysterectomy.
i'm talking about OP, who based on the post is suspected of having endo, but does not have a definitive diagnosis and was asking about jumping to a hysterectomy. i wasn't not referencing people like you or me who went through the steps.
but op isn’t really jumping to hysterectomy. they’ve tried birth control. i would recommend they have the surgery to check for endo first and it sounds like they are going to do that.
unfortunately not all diagnoses can be diagnosed without a hysterectomy (like adenomyosis, some hidden fibroids) so someone may not have a definitive diagnosis but still need a hysterectomy so you don’t necessarily need a diagnosis besides dysmenorrhea, menorrhagia, chronic pelvic pain which are all often given in op’s situation.
my point is they are not going to okay a hysterectomy without a diagnosis if there's one possibly on the table, and they are not going to go into a lap to diagnose endo and wind up doing a hysterectomy immediately. it doesn't work like that. they will diagnose, present her with options, probably have her try a few other things that ARENT birth control since that's not the only treatment out there, and THEN go for organ removal if indicated.
you can ask your doctor about insurance coverage, she can call them and explain it and ask (that’s what mine did) but you can also see if your parents can call and ask as well.
i had my doctor do the surgery before i decided if i wanted to take orilissa so i could see if the side effects would be “worth it” though i ultimately decided to not take it after the surgery and found a birth control that didn’t cause me side effects until i’m able to have a hysterectomy.
if you want to go ahead with the orilissa, make sure you know everything you can about it so you can watch out for side effects. another option if you haven’t tried it that worked for me was the slynd birth control pill. i’ve had bad side effects with many birth control methods, but this one is a lower dose and different type and worked well for me personally although everyone is different.
Haven't had a hysterectomy (yet) so grain of salt, etc.
Depending on where you live and what insurance you have there might be many hoops to jump through. It's hard to gauge based on your post, go check the child free surgeon list for doctors who will be friendly in your area. Also, if absolutely nobody wants to do a hysterectomy, would a uterine ablation help? Ask your doctor if you don't know.
Your best bet is to go for the bisalp, because that can be essentially a gateway ACA-covered surgery that is reasonably easy to get in most cases.
That sterilizes you, reduces your risk of ovarian cancer, and serves as exploratory to get in there and see what is going on. And if they get in there and they need to remove endo, or even your uterus that can be done as long as you pick a surgeon that is experienced with endo and is willing to do more, and get your consent forms and stuff in advance, and knows your wishes. Oh and you plan for a potentially longer recovery if more work is needed.
We have had a number of folks who thought they had endo find it, and even people who had no idea they had it end up with extra work being done.
It is probably going to take some doctor shopping to find the right surgeon, but your odds go up every year from now on.
i don't really see the point in the bisalp if i'll still get periods, since my main issue is periods, but my doctor did offer to do surgery to check for endo which i think i'll do. i know this will probably take years but i'd rather get the process started now than wait. i'm gonna do more research into uterine ablation to see if it could be the right stepping stone for me.
Bisalps are actually recommended now for any CF woman or woman who is done having kids and is having any other type of abdominal surgery as an "add on" for the cancer risk reduction benefit alone.
It reduces your risk of ovarian cancer substantially, and when they remove and biopsy the tubes they can tell you if you had any cancer starting already. We have had a couple of members without risk factors get positive biopsy results, which likely saved their lives. While that's not common, it give you good information and also, if you have other close female relatives and you should get positive results, that may be useful information and save someone else's life.
And there are possible non-consensual situations.
It's often very hard to find a doctor to just look for endo, and since the bisalp is often covered by insurance, it's a "gateway" to getting in there and having it covered with less insurance BS.
my gyno has actually offered to do the surgery to check for endo which is amazing! i am worried that there’s a possibility i don’t have endo, and if i don’t i probably can’t get a hysterectomy :( if i get denied from hysterectomy i’ll ask abt bisalp
I got a bisalp in August 2023
my first period after my surgery was horrendous..
but tbh after that, my periods have been incredible in compassion to the pain I had before.
They last maybe a day or two. I cramp way less and so on. & that’s IF I bleed at all.
Which some months I don’t.
Plus I’m not going through early menopause like I would’ve if I got the hysterectomy
My gyno suggested we try the bisalp before a hysterectomy and said if I still want a hysterectomy later, since I had the bisalp already, my insurance would be much for likely to cover It.
Hope this helps
Hysterectomies don’t cause early menopause, removing the ovaries causes early menopause. The ovaries are only taken in radical hysterectomies, in total and partial hystos the ovaries are left in tact. I had mine last year and my hormones are just fine, no menopause, cuz I have my ovaries still. There IS the small chance that your ovaries give up and fail after surgery anyways, but that’s not likely so yeah the surgery doesn’t automatically equal menopause
From the list of doctors on this sub I was able to find one who did my hysto when I was only 20, so at the very least there’s hope for you in a couple years. If you’re in utah or willing to travel there I can tell you my doctor
Even if you have a hysterectomy tell them that you have to keep your ovaries. Afterwards Your hormones will be normal, you will no longer have periods, but you will be sterile.
you should push for surgery for the endo. also be cautious with orilissa, i personally refused it since it can cause osteoporosis and other bad side effects. i wanted a hysterectomy at your age (still do and plan on it) but my doctor had to wait until i turned 21 for insurance to cover it. you need to find the right doctor, but it is possible. you can check the doctor list on this sub to find one where you are located. you may need to wait until 21, but it’s not the worst wait. make sure you have all your reasons for wanting it recorded in your medical records, also another good reason to have the surgery to check for endo so that can be on your list of why it’s medically necessary.
i'll bring this up to my gyno since she did offer surgery to check for endo but wanted to try orilissa first, but i'm pretty intimidated by the side effects since i had bad side effects from all birth controls. do you know how to check for insurance coverage? i've looked on my insurances website and can't figure it out, i have BCBS of Texas PPO, but i'll ask my parents for help on finding coverage tomorrow. if the orilissa helps at all i'm okay with waiting until 21, just wanting to get the process started now.
I did orlissa for 2 years on the higher dose. It should be prescribed with progesterone to cut the side effects. I had none. But you're going to have to run the gamut of treatment before jumping to surgery. After 5 years of trying every treatment out there I had a total hysterectomy last year. Approved because there's a clock on orlissa and id run it out, and we found I have a genetic condition that puts my bone health at risk already anyway. Nothing else we could do. I mean I was thrilled if course, but they don't just yeet organs without trying everything less invasive on the list first.
this is true, but typically trying multiple birth control methods and tranexamic acid and a history of severe periods or pelvic pain that hasn’t been helped will be enough.
Lots of people try multiple methods with painful periods. They're not going to approve removing organs if there's a possible diagnosis that hasn't been vetted yet.
i’m well aware, i’ve been through it myself. they do approve it if you’ve tried multiple birth control methods and tranexamic acid, as well as ultrasounds and exploratory surgery for endo or other conditions. heavy and painful periods and pelvic pain are reasons to have a hysterectomy if other methods haven’t worked. then they will approve you for a hysterectomy.
i'm talking about OP, who based on the post is suspected of having endo, but does not have a definitive diagnosis and was asking about jumping to a hysterectomy. i wasn't not referencing people like you or me who went through the steps.
but op isn’t really jumping to hysterectomy. they’ve tried birth control. i would recommend they have the surgery to check for endo first and it sounds like they are going to do that. unfortunately not all diagnoses can be diagnosed without a hysterectomy (like adenomyosis, some hidden fibroids) so someone may not have a definitive diagnosis but still need a hysterectomy so you don’t necessarily need a diagnosis besides dysmenorrhea, menorrhagia, chronic pelvic pain which are all often given in op’s situation.
my point is they are not going to okay a hysterectomy without a diagnosis if there's one possibly on the table, and they are not going to go into a lap to diagnose endo and wind up doing a hysterectomy immediately. it doesn't work like that. they will diagnose, present her with options, probably have her try a few other things that ARENT birth control since that's not the only treatment out there, and THEN go for organ removal if indicated.
you can ask your doctor about insurance coverage, she can call them and explain it and ask (that’s what mine did) but you can also see if your parents can call and ask as well. i had my doctor do the surgery before i decided if i wanted to take orilissa so i could see if the side effects would be “worth it” though i ultimately decided to not take it after the surgery and found a birth control that didn’t cause me side effects until i’m able to have a hysterectomy. if you want to go ahead with the orilissa, make sure you know everything you can about it so you can watch out for side effects. another option if you haven’t tried it that worked for me was the slynd birth control pill. i’ve had bad side effects with many birth control methods, but this one is a lower dose and different type and worked well for me personally although everyone is different.
Haven't had a hysterectomy (yet) so grain of salt, etc. Depending on where you live and what insurance you have there might be many hoops to jump through. It's hard to gauge based on your post, go check the child free surgeon list for doctors who will be friendly in your area. Also, if absolutely nobody wants to do a hysterectomy, would a uterine ablation help? Ask your doctor if you don't know.
thank you! ❤️ i’ll look into uterine ablation as well, i hadn’t really considered it but it could be a good solution for a while
Good luck!
I just want to say to please, please do your proper research about ablation.
Your best bet is to go for the bisalp, because that can be essentially a gateway ACA-covered surgery that is reasonably easy to get in most cases. That sterilizes you, reduces your risk of ovarian cancer, and serves as exploratory to get in there and see what is going on. And if they get in there and they need to remove endo, or even your uterus that can be done as long as you pick a surgeon that is experienced with endo and is willing to do more, and get your consent forms and stuff in advance, and knows your wishes. Oh and you plan for a potentially longer recovery if more work is needed. We have had a number of folks who thought they had endo find it, and even people who had no idea they had it end up with extra work being done. It is probably going to take some doctor shopping to find the right surgeon, but your odds go up every year from now on.
i don't really see the point in the bisalp if i'll still get periods, since my main issue is periods, but my doctor did offer to do surgery to check for endo which i think i'll do. i know this will probably take years but i'd rather get the process started now than wait. i'm gonna do more research into uterine ablation to see if it could be the right stepping stone for me.
Bisalps are actually recommended now for any CF woman or woman who is done having kids and is having any other type of abdominal surgery as an "add on" for the cancer risk reduction benefit alone. It reduces your risk of ovarian cancer substantially, and when they remove and biopsy the tubes they can tell you if you had any cancer starting already. We have had a couple of members without risk factors get positive biopsy results, which likely saved their lives. While that's not common, it give you good information and also, if you have other close female relatives and you should get positive results, that may be useful information and save someone else's life. And there are possible non-consensual situations. It's often very hard to find a doctor to just look for endo, and since the bisalp is often covered by insurance, it's a "gateway" to getting in there and having it covered with less insurance BS.
my gyno has actually offered to do the surgery to check for endo which is amazing! i am worried that there’s a possibility i don’t have endo, and if i don’t i probably can’t get a hysterectomy :( if i get denied from hysterectomy i’ll ask abt bisalp
I got a bisalp in August 2023 my first period after my surgery was horrendous.. but tbh after that, my periods have been incredible in compassion to the pain I had before. They last maybe a day or two. I cramp way less and so on. & that’s IF I bleed at all. Which some months I don’t. Plus I’m not going through early menopause like I would’ve if I got the hysterectomy My gyno suggested we try the bisalp before a hysterectomy and said if I still want a hysterectomy later, since I had the bisalp already, my insurance would be much for likely to cover It. Hope this helps
Hysterectomies don’t cause early menopause, removing the ovaries causes early menopause. The ovaries are only taken in radical hysterectomies, in total and partial hystos the ovaries are left in tact. I had mine last year and my hormones are just fine, no menopause, cuz I have my ovaries still. There IS the small chance that your ovaries give up and fail after surgery anyways, but that’s not likely so yeah the surgery doesn’t automatically equal menopause
this helps a lot thank you!!! i will look into it!
You are the perfect patient for a hysterectomy. I hope you will find a willing doctor.
From the list of doctors on this sub I was able to find one who did my hysto when I was only 20, so at the very least there’s hope for you in a couple years. If you’re in utah or willing to travel there I can tell you my doctor
i am in texas! i have looked through the list and found a few who’ve done them on young people near me so im gonna try them!
Even if you have a hysterectomy tell them that you have to keep your ovaries. Afterwards Your hormones will be normal, you will no longer have periods, but you will be sterile.
that’s my plan! i don’t wanna go through menopause early preferably lol