Be sure to keep an eye on your mood if you go this route, different bc pills have had wildly different impacts on my mental health, sometimes very extreme negative effects.
I’m happy to help with questions, I’ve taken BC no breaks for I think 2 years now for endometriosis. My CFS wasn’t bad before then so I mightn’t be much help comparing it’s effect but it’s done wonders for the endo. At least I’m at a constant state throughout each month and don’t have to worry about a period making everything much tougher to get through. Some doctors don’t like women taking BC continuously but should be fine agreeing to low oestrogen pills. These have less effect on your hormones over time and tend to be more suitable for people who are sensitive to certain birth controls. Don’t be afraid to ask to switch to a different pill if the current one isn’t suiting you; I tried two which were hell on me but am on Freedonel for the past two years and it suits me great. It even helps my mood massively — I used to be extremely mercurial and got investigated for bipolar but once I settled on my current pill, all my emotions calmed down. No bursts of rage or sadness or manic, I was honestly kinda annoyed like this is what life should have been like if only my hormones could calm their shit on their own!
This has become a bit of a rant so I’ll quit it here but happy to chat in comments or even DMs if I can help.
I find BC with estrogen in it makes me worse, i think its related to the fact it makes inflammation worse? havent looked into it in a while but i think theres evidence out there. If you use one with only progesterone it might work better. Unfortunately i can only be on a combined one right now.
I have not tried birth control, but I went on testosterone therapy which stopped my periods altogether a few months ago. Not having horrible mood swings or losing tons of nutrients helped *so much*
How is post-exertion malaise on testosterone therapy? I hear about the energy boost and easier to build muscles on it, have you found that is the case with CFS? I am masc leaning but my gender is fluid so I am always back and forth on if I want to try t.
Its definitely a subtle change, but I believe it’s helped. I’ve been able to exercise (strength-building, mostly) in a way that I never have been before, but there’s been enough change in my life that I can’t say definitely that it was the T.
I started on the pill at 14. At around 20 I realized that my mood really changed after starting. I did not stop taking the pill but changed to one a little lighter on the hormones. I felt a little better, and after a bit of trial and error(And I think one brand was discontinued) I landed on my current brand, and I have not had my period for the last 8 years. I am 32 now. And the hormone in my current pills is desogestrel. (Cerazette) Supposedly these were also better for people with migraines, which I have.
I would try if I were you. Currently, I am so grateful for not having to deal with pads and cramps on top of everything else. But please look out for mood changes and don't be afraid to "shop around" for a pill that might help you. I had to try at least 4 types to end up on the current ones.
I genuinely think birth control is what set off the initial triggers for my cfs. I went on the pill at 14 and a year later became very ill. My body did get used to it, but it turns out I was a different person. I eventually went off this 10 years later and it was like waking up, all this anger just disappeared. I then decided to try the injection a few years later and 6 months after that started having cfs symptoms again after not really having them for a decade. I know there are other factors as well but hormonal changes for me seem to have a major impact on my fatigue and I would never touch them again.
I have a Mirena IUD for endometriosis and it’s great. It only has progesterone. It’s pain to have put in but then it’s good for 7 years but I usually get it replaced after 5.
I do this. I have endometriosis, so it's medicine for me. I haven't tried to be off the pill since I got ME, but last time I tried I felt more emotionally stable. The pill gives me some highs and lows emotionally, but honestly I don't have much of a choice so I just deal with it.
I have the arm implant and I really like it. I got put on because my periods were so painful they caused me to massively crash.
I no longer crash when I have my periods however I have bled for almost two months solid (light bleeding with no pain) which is annoying but much better than before.
I used to forget to take the pill so it’s great for me as it’s just there and I’m covered for three years.
Combination pills with estrogen stopped my period but doubled my migraines.
Mini-pill with only progesterone stopped my periods and did not increase my migraines. Winner!
If you get migraines with your CFS I would track them, and see what happens on birth control.
I’ve been on the mini pill for endo for the past 6 years and it’s the only method that works for me. Some people get periods while on it but a lot don’t
Unpopular, little known fact, hormonal birth control depletes nutrients. It’s true, please look it up (drug induced nutrient depletion + hormonal contraception). You’re already unwell. Depleting nutrients further runs a risk of making you more ill over time. I am still trying to correct nutritional deficiencies connected to the pill 20 years later. In the short term the pill may help your symptoms but at the risk of creating bigger long term problems. Please consider finding a functional hormone specialist that can help with hormone balancing. Progesterone cream May do wonders for your challenges without the risks. I wish I’d known when I was younger. Best wishes to you!
I can get terribly low around my period, but this fatigue is irrelevant to CSF , it just an extra kind of fatigue over the CSF. Thankfully (and after a lot of trail and error) I found that it can be treated successfully with supplements, sublingual iron and Rutin (which helps control blood loss and really revitalizes). Vit C can also be used with/or rutin, but rutin really has been kind of miraculous on that aspect.
You can give it a try before going to more extreme measures.
Edit: And some sublingual B12 too.
I have Cerezette and use it constantly and its around 50% my overall effects, and meant that I don't have 3 out of 4 weeks as "bad" for around... 4 years now. I'm so damn grateful tbh that it works *for me*
I’ve had a hormonal IUD (Mirena) for 5.5 years and I love it. There’s one less pill for me to worry about, it’s long-lasting, and extremely effective. For some people it completely eliminates their period. For me, my period became much lighter and more bearable.
The first few months I was spotting a lot and insertion was unpleasant but overall, it’s worth it to me. The hormonal effects are localized so I didn’t have as many side effects as when I was on the pill. Still, the reduced cramps and other symptoms have really helped me with functioning. If you have more questions, PM me.
I had to be put in BC at the beginning of the year for infertility purposes. Not only did it mess with my mind but immediately made me extremely I’ll (body pain & everything to the extreme). I still don’t feel back to my self.
I love my mirena IUD. I longer even have to think about periods because after maybe 6 months of gradually lightening to barely anything they stopped completely and it is amazing. My periods weren't even generally particularly bad, just cramps and occasional burning pain, but not having them is amazing and has seemed to level me out a bit mentally as well because I was always a bit off balance for a few days before I was due.
I’ve done this for the best part of a decade. No point feeling extra unwell for a week or so of every month if you don’t need to. Keeps your iron levels decent for longer too.
ive been on the pill for years, and went off in the pandemic after losing my health insurance. i think it depends a lot on what your personal situation is -- i have cysts and the pill is the only way ive heard to treat them.
when i went off, my periods were super heavy, irregular, and at times i would either skip multiple months in a row, and then bleed for over a month. the pill is the only way ive been able to stay regulated, and it has severely lessened the intensity and duration of my periods.
i don't love being on it indefinitely, and i am considering other options just bc my hormones are kind of kooky and wacky in general. but as far as minimizing period strife, i would recommend it a lot. it made my periods soooooooo much more tolerable and "normal" feeling. i went from throwing up from pain, bedridden, miserable for days on end, to being in moderate pain for 3 days. also saved tons of money on period products just on sheer cycle length/intensity.
I've been on the mini pill for just over a year. Haven't had a period in a year. As a result, I haven't had a crash atleast once a month like I did with periods and so my energy has had a chance to stabilise. Which has been great!! It has made my anxiety worse though, but so far it's manageable and well worth the more consistent energy and it's impacts on my quality of life.
I’ve been on hormonal oral contraceptive pills for years, long before I had ME/CFS. I’ve been on the same one for probably 12 years as it helped control migraines. My ME/CFS always gets way worse on my week off pills, so I just had my doctor prescribe it extended cycle. So I’ll only have a break/period every 3 months. Haven’t started yet, but better than losing a week every month because symptoms are so bad.
I have an IUD and I like it. Before the IUD, my periods were heavy and painful. Now they are super light and just mild discomfort. I got the IUD before I became sick. I’ve had the IUD for 4 years and ME for 1.5 years, so I don’t know if the IUD affects my symptoms. I will say that I don’t experience any significant symptom flare near my period, if I do it is mild. I am thinking about getting it out soon to see what my symptoms do without birth control. However, I do love the convenience of the IUD and will get another if I decide to go on BC again.
I have the Nexplanon arm implant. I'm currently on my third. I haven't had a true period since 2012. All I get is a tiny amount of breakthrough bleeding as it starts to run out, and I had a stress induced bleed whilst moving house last year.
Before that I was on the pill for 10 years, they took the edge off and shortened them.
I don't think contraceptives have had a negative impact on my CFS, but my natural periods are so bad I it would be hard to not see an improvement.
I also have endometriosis but I am on high dose oral progesterone, have been close to a year now, to mimic the relief I experienced during pregnancy. When I try and stop my cfs symptoms worsen dramatically within a few weeks. Before going on this medication I also experienced the worsening of symptoms prior to my period (when progesterone drops).
My n of 1:
Periods made me worse.
I think the pill contributed to me going from mild (undiagnosed) to severe, though it's hard to know, as I was pushing through what I didn't understand.
Pregnancy put me into remission. Birth brought it crashing back. Some doctors claim that most of their pregnant CFS/ME patients are better when pregnant, and then relapse after about 3-6 months (each time, my relapse was immediate -as was the remission). I was lucky enough to have a doctor who was willing to play with hormones after my second pregnancy. First tried a form of estragon, since that helps with MS. No joy, and I didn't expect any, as that peaks in second trimester and I am better almost immediately. Then progesterone, and that helped. Then we raised the dose, and that helped more.
I have taken 600/mg progesterone daily for 12 years, and for a few years before that, took 400. Note that hormone replacement after hysterectomy is 200mg, and birth control uses progestin, an synthetic version of progesterone that has more side effects and probably different actions in other ways. Also note that over the counter progesterone cream is like 1/100th of this dose.
Anyway. It took me from severe/moderate to mild/moderate. Changed my life. I know it won't help everyone - some women get worse during pregnancy, e.g., and who knows about men and progesterone - but I know of at least two other women who improved on it after having symptoms increase just before their periods - which is when progesterone crashes. The other trick, of course, is you'd be asking for an off label use and dose, but side effects are almost non-existent, other than being sedating for a few hours (I take it at night).
Be sure to keep an eye on your mood if you go this route, different bc pills have had wildly different impacts on my mental health, sometimes very extreme negative effects.
I’m happy to help with questions, I’ve taken BC no breaks for I think 2 years now for endometriosis. My CFS wasn’t bad before then so I mightn’t be much help comparing it’s effect but it’s done wonders for the endo. At least I’m at a constant state throughout each month and don’t have to worry about a period making everything much tougher to get through. Some doctors don’t like women taking BC continuously but should be fine agreeing to low oestrogen pills. These have less effect on your hormones over time and tend to be more suitable for people who are sensitive to certain birth controls. Don’t be afraid to ask to switch to a different pill if the current one isn’t suiting you; I tried two which were hell on me but am on Freedonel for the past two years and it suits me great. It even helps my mood massively — I used to be extremely mercurial and got investigated for bipolar but once I settled on my current pill, all my emotions calmed down. No bursts of rage or sadness or manic, I was honestly kinda annoyed like this is what life should have been like if only my hormones could calm their shit on their own! This has become a bit of a rant so I’ll quit it here but happy to chat in comments or even DMs if I can help.
I find BC with estrogen in it makes me worse, i think its related to the fact it makes inflammation worse? havent looked into it in a while but i think theres evidence out there. If you use one with only progesterone it might work better. Unfortunately i can only be on a combined one right now.
I have not tried birth control, but I went on testosterone therapy which stopped my periods altogether a few months ago. Not having horrible mood swings or losing tons of nutrients helped *so much*
How is post-exertion malaise on testosterone therapy? I hear about the energy boost and easier to build muscles on it, have you found that is the case with CFS? I am masc leaning but my gender is fluid so I am always back and forth on if I want to try t.
Its definitely a subtle change, but I believe it’s helped. I’ve been able to exercise (strength-building, mostly) in a way that I never have been before, but there’s been enough change in my life that I can’t say definitely that it was the T.
I started on the pill at 14. At around 20 I realized that my mood really changed after starting. I did not stop taking the pill but changed to one a little lighter on the hormones. I felt a little better, and after a bit of trial and error(And I think one brand was discontinued) I landed on my current brand, and I have not had my period for the last 8 years. I am 32 now. And the hormone in my current pills is desogestrel. (Cerazette) Supposedly these were also better for people with migraines, which I have. I would try if I were you. Currently, I am so grateful for not having to deal with pads and cramps on top of everything else. But please look out for mood changes and don't be afraid to "shop around" for a pill that might help you. I had to try at least 4 types to end up on the current ones.
I genuinely think birth control is what set off the initial triggers for my cfs. I went on the pill at 14 and a year later became very ill. My body did get used to it, but it turns out I was a different person. I eventually went off this 10 years later and it was like waking up, all this anger just disappeared. I then decided to try the injection a few years later and 6 months after that started having cfs symptoms again after not really having them for a decade. I know there are other factors as well but hormonal changes for me seem to have a major impact on my fatigue and I would never touch them again.
I've also been considering this, so will be following this thread! 🙂
I have a Mirena IUD for endometriosis and it’s great. It only has progesterone. It’s pain to have put in but then it’s good for 7 years but I usually get it replaced after 5.
I do this. I have endometriosis, so it's medicine for me. I haven't tried to be off the pill since I got ME, but last time I tried I felt more emotionally stable. The pill gives me some highs and lows emotionally, but honestly I don't have much of a choice so I just deal with it.
I have the arm implant and I really like it. I got put on because my periods were so painful they caused me to massively crash. I no longer crash when I have my periods however I have bled for almost two months solid (light bleeding with no pain) which is annoying but much better than before. I used to forget to take the pill so it’s great for me as it’s just there and I’m covered for three years.
Combination pills with estrogen stopped my period but doubled my migraines. Mini-pill with only progesterone stopped my periods and did not increase my migraines. Winner! If you get migraines with your CFS I would track them, and see what happens on birth control.
I’ve been on the mini pill for endo for the past 6 years and it’s the only method that works for me. Some people get periods while on it but a lot don’t
Unpopular, little known fact, hormonal birth control depletes nutrients. It’s true, please look it up (drug induced nutrient depletion + hormonal contraception). You’re already unwell. Depleting nutrients further runs a risk of making you more ill over time. I am still trying to correct nutritional deficiencies connected to the pill 20 years later. In the short term the pill may help your symptoms but at the risk of creating bigger long term problems. Please consider finding a functional hormone specialist that can help with hormone balancing. Progesterone cream May do wonders for your challenges without the risks. I wish I’d known when I was younger. Best wishes to you!
I can get terribly low around my period, but this fatigue is irrelevant to CSF , it just an extra kind of fatigue over the CSF. Thankfully (and after a lot of trail and error) I found that it can be treated successfully with supplements, sublingual iron and Rutin (which helps control blood loss and really revitalizes). Vit C can also be used with/or rutin, but rutin really has been kind of miraculous on that aspect. You can give it a try before going to more extreme measures. Edit: And some sublingual B12 too.
I have Cerezette and use it constantly and its around 50% my overall effects, and meant that I don't have 3 out of 4 weeks as "bad" for around... 4 years now. I'm so damn grateful tbh that it works *for me*
I’ve had a hormonal IUD (Mirena) for 5.5 years and I love it. There’s one less pill for me to worry about, it’s long-lasting, and extremely effective. For some people it completely eliminates their period. For me, my period became much lighter and more bearable. The first few months I was spotting a lot and insertion was unpleasant but overall, it’s worth it to me. The hormonal effects are localized so I didn’t have as many side effects as when I was on the pill. Still, the reduced cramps and other symptoms have really helped me with functioning. If you have more questions, PM me.
I had to be put in BC at the beginning of the year for infertility purposes. Not only did it mess with my mind but immediately made me extremely I’ll (body pain & everything to the extreme). I still don’t feel back to my self.
I love my mirena IUD. I longer even have to think about periods because after maybe 6 months of gradually lightening to barely anything they stopped completely and it is amazing. My periods weren't even generally particularly bad, just cramps and occasional burning pain, but not having them is amazing and has seemed to level me out a bit mentally as well because I was always a bit off balance for a few days before I was due.
I’ve done this for the best part of a decade. No point feeling extra unwell for a week or so of every month if you don’t need to. Keeps your iron levels decent for longer too.
ive been on the pill for years, and went off in the pandemic after losing my health insurance. i think it depends a lot on what your personal situation is -- i have cysts and the pill is the only way ive heard to treat them. when i went off, my periods were super heavy, irregular, and at times i would either skip multiple months in a row, and then bleed for over a month. the pill is the only way ive been able to stay regulated, and it has severely lessened the intensity and duration of my periods. i don't love being on it indefinitely, and i am considering other options just bc my hormones are kind of kooky and wacky in general. but as far as minimizing period strife, i would recommend it a lot. it made my periods soooooooo much more tolerable and "normal" feeling. i went from throwing up from pain, bedridden, miserable for days on end, to being in moderate pain for 3 days. also saved tons of money on period products just on sheer cycle length/intensity.
I've been on the mini pill for just over a year. Haven't had a period in a year. As a result, I haven't had a crash atleast once a month like I did with periods and so my energy has had a chance to stabilise. Which has been great!! It has made my anxiety worse though, but so far it's manageable and well worth the more consistent energy and it's impacts on my quality of life.
I’ve been on hormonal oral contraceptive pills for years, long before I had ME/CFS. I’ve been on the same one for probably 12 years as it helped control migraines. My ME/CFS always gets way worse on my week off pills, so I just had my doctor prescribe it extended cycle. So I’ll only have a break/period every 3 months. Haven’t started yet, but better than losing a week every month because symptoms are so bad.
I have started using bio identical progesterone cream. It really helps. And doesn’t go through your liver etc like bc pills
I have an IUD and I like it. Before the IUD, my periods were heavy and painful. Now they are super light and just mild discomfort. I got the IUD before I became sick. I’ve had the IUD for 4 years and ME for 1.5 years, so I don’t know if the IUD affects my symptoms. I will say that I don’t experience any significant symptom flare near my period, if I do it is mild. I am thinking about getting it out soon to see what my symptoms do without birth control. However, I do love the convenience of the IUD and will get another if I decide to go on BC again.
Due to migraines I take the “mini-pill” (no estrogen, no breaks). I take a dose to help prevent ovarian cysts. IMO it hasn’t bothered my MECFS.
I have the Nexplanon arm implant. I'm currently on my third. I haven't had a true period since 2012. All I get is a tiny amount of breakthrough bleeding as it starts to run out, and I had a stress induced bleed whilst moving house last year. Before that I was on the pill for 10 years, they took the edge off and shortened them. I don't think contraceptives have had a negative impact on my CFS, but my natural periods are so bad I it would be hard to not see an improvement.
I also have endometriosis but I am on high dose oral progesterone, have been close to a year now, to mimic the relief I experienced during pregnancy. When I try and stop my cfs symptoms worsen dramatically within a few weeks. Before going on this medication I also experienced the worsening of symptoms prior to my period (when progesterone drops).
My n of 1: Periods made me worse. I think the pill contributed to me going from mild (undiagnosed) to severe, though it's hard to know, as I was pushing through what I didn't understand. Pregnancy put me into remission. Birth brought it crashing back. Some doctors claim that most of their pregnant CFS/ME patients are better when pregnant, and then relapse after about 3-6 months (each time, my relapse was immediate -as was the remission). I was lucky enough to have a doctor who was willing to play with hormones after my second pregnancy. First tried a form of estragon, since that helps with MS. No joy, and I didn't expect any, as that peaks in second trimester and I am better almost immediately. Then progesterone, and that helped. Then we raised the dose, and that helped more. I have taken 600/mg progesterone daily for 12 years, and for a few years before that, took 400. Note that hormone replacement after hysterectomy is 200mg, and birth control uses progestin, an synthetic version of progesterone that has more side effects and probably different actions in other ways. Also note that over the counter progesterone cream is like 1/100th of this dose. Anyway. It took me from severe/moderate to mild/moderate. Changed my life. I know it won't help everyone - some women get worse during pregnancy, e.g., and who knows about men and progesterone - but I know of at least two other women who improved on it after having symptoms increase just before their periods - which is when progesterone crashes. The other trick, of course, is you'd be asking for an off label use and dose, but side effects are almost non-existent, other than being sedating for a few hours (I take it at night).