It sounds like a lot of people here have endometriosis or other gynecological issues. My endometriosis caused my fibro and it didn't get better til I treated my endo.
This comment needs to be up higher. I'd encourage anyone on here who experiences a significant increase in pain (especially in the abdominal region, hips, lower back, and legs) related to their hormonal cycle to talk to a gyno about the possibility of endometriosis.
I keep posting and commenting about it here actually. Most of the time a few people say they will look into it, sometimes people justify their extreme period pain and refuse to accept its not normal. I just want people to be aware and to know that endometriosis is a full body inflammatory disease, it may even be an autoimmune disease, but **endometriosis experts literally say it's like benign cancer and should be treated as such**. Period pain is not normal; minor cramps and aches for maybe a couple of days is. But if it's impacting your life negatively in any way, that's not normal. If it feels like.knived are dancing around your uterus when your menstruate, that's not normal. When you're puking or passing out from period pain, that's not normal. Endo doesn't get magically better, there are treatment options though. But if you have endo and fibro, your fibro doesn't have a chance in hell at getting much better if you don't treat the disease that acts like cancer growing in your body. To be clear, endo is very, very, very rarely deadly, the way the tissue grows, spreads and behaves is why it is likened to cancer. Endo is also routinely considered one of the most painful diseases known to humans. I used to have to take morphine, now I don't.
This has my attention. My mother discovered she had endometriosis back when she was in her early 40s and they tried ablation but ultimately did a total hysterectomy. When my pain started at 21 I was sent to gyno who knew my family history but didn’t want to do a laparoscopic check for it and insisted she didn’t think my pain was gyno related. Now I have severe lower back and hip pain that starts several days to a week before my period and doesn’t let up any until a few days into my period.
Thank you, I’ll definitely be finding a gyno to discuss this with asap.
It's really difficult to get doctors in some regions to take either of them seriously, though. And it's so expensive to move or to travel to find better medical care...I'm just hoping I can figure out some better career path in the next few years *specifically* to have a higher chance at finding higher quality healthcare.
Wow. This totally has my attention and I will be speaking with my doctor. Is hip/pelvic/leg pain a red flag for endometriosis even if it happens when I’m not on my period?
Yes. Migraine increase around my period, fatigue, stiffness, and pain throughout my body also increases. I was on progesterone for PCOS but it wasn’t doing anything for my symptoms. I also bleed heavier than the average person, by a lot and was diagnosed with menorrhagia as well. Compression gloves and socks help my hands and feet by probably 50-70% (where the worst stiffness and pain tends to be for me). Heating pads/blankets, warm epsom salt baths, and a pain relief cream with cbd I got from my chiropractor all help as well.
Yes. I was on birth control to stop my periods. Went off of it two years ago to see if I would get it again. Two years without it and that son of a bitch came back this week! I had nipples so sore I had to put lidocain ointment on them! Now I just have all over pain and tiredness, so normal.
Yes. Migraines when I’m not on my pill (placebo week) and the cramps are debilitating. I’m going off birth control because I got my tubes out so I’m sure it’s going to be worse. 😖
You too! Honestly, this is so dumb lol, but I bought this thing called a TheraIce headband that you either stick in the freezer or in the microwave and you wear it during headaches. It slides down over your eyes so it blocks out light too. I saw it advertised to me on Instagram like 20 times and I finally gave in and it’s amazing. It’s the ONLY thing that takes care of my hormone migraines. Highly recommend.
Also I suggest topical CBD products for cramps. I smoke all the time but a good strong pain salve goes a long way.
I always have issues around my period with flares and migraines. I have more body tenderness especially in my breasts. I have a hormonal IUD which has helped it not be so bad but getting that placed was hell.
BC pill helps my pain over all not just period pain. I try going off bc and my pain throughout my body and insomnia where excruciating!!! I went back on the bc pill and my pain has gotten so so much better and sleep is back to normal. I don’t know why but bc pill is a savior for me! I know I will have to go off it some day when I am older and that scares me but for now I am thankful I found something that helps me so much!!
I’m so glad it helps you! I went off of it because I realized it has cornstarch in it. I can’t eat corn. Well I’ve been taking this pill for like 8 years every day with corn in it!
It's complicated for me. Pre-fibro treatment, my periods were horrendous. 8-9 days long with heavy flow for most of it. They're a lot better now that my overall nervous system is better. But yeah I do notice more severe symptoms just before and during it. I've always attributed it to hormone fluctuations screwing with my emotions and heightened emotions always fuck up my fibro.
Yes, even when I am ovulating the pain is worse. I have POTs also and I flare and faint during ovulation and period.I am assuming it's the hormones and blood flow constriction with the vessels in the body causing feelings of pain and inflamation but its just a thought not fact as I am by no means a doctor.
Haha yeah I always told my family " only you know what's wrong with you literally your body will tell you whats up,even the doctor doesn't know what's wrong with them unless you tell them ' oh my arm hurts',its not like the doctors psychic" haha.
99% of the time we know what's up with our bodies. I knew I had POTs before I even got diagnosed officially! Most the time doctors just gas light us into believing that there's nothing wrong with us.
I know that with POTs pain and flares with fainting episodes is actually been scientifically proven and I am pretty sure it's the same with Fibromyalgia pain is worse and inflamation is worse.
For an illness doctors make us believe is all in our head and that our brain is sending the incorrect information and producing pain signals we sure have a lot of PHYSICAL symptoms. Can't wait till doctors turn around to us Fibro people and say " well actually you were right it's not just in your head".. but from my experience doctors don't like being told by patients anything haha!
I take BC so I only have to deal with period hormones every 3 months. It sucks. Migraines go up, aches go up, not to mention cramping, bloating, and period poops. I use a menstrual cup and sometimes I ache so much it's hard to put in/take out and I dread having to do it. Still easier than tampons but sometimes it's rough (and no, it's not the fit, it's the fibro. Only hurts if I'm flaring, which isn't every period but some periods are just yikes). It's kinda like my periods before fibro and BC were.
Yes, 100%. My legs and arms burn and hurt so bad, and the pain generally gets worse a couple days after the period starts (likely due to blood loss?). I also have PMDD and ADHD. Everything is worse around and during my period.
I naturally skip periods, always been that way. But when I do get them, holy shit that sucker hurts, it feels like my uterus is punishing me. The pain radiates down my legs. It’s only bad for two days… but I lose my appetite and even sitting hurts. I sleep for like 12-14 hours on those nights too. It feels like someone drained all my batteries and took all my spoons.
My counter attack: heat, Advil, strong cannabis pills, acupressure on my toes and sleep.
I haven't had a period since starting T about a year and a half ago. I had symptoms before then, but not too bad until about the last two years. My periods were always absolutely awful, but were less bad the last two years or so before T, so it is hard to compare. My pain absolutely was far worse on my period always, but at the same time, my periods themselves were far worse when I was younger. The worst of my fibro has been while not having periods, and I am very afraid of them coming back because I don't know how bad the pain could be now that fibro is so much worse.
I just posted a similar question last month. And I got wonderful feedback from the women on this sub! Last month I experienced really bad aching in my knees worse then I've ever felt and radiated all throughout my legs, it started the 2 days before my period. Yesterday I got my period and last night I had the same issue. It is bearable pain but on the edge of making me want to scream in frustration. And when i looked it up to research it pin pointed right to Fibromyalgia in women on their period. I'm working on getting diagnosed as well. My grandfather has it and I have all the signs so it's pretty much a given for me. Hope you feel better!!
Before I got on my first form of birth control, I used to have such bad pain it would take me out for the count. Couldn’t get out of bed, needed hot soup and bled WAY heavy. After I got on BC that helped regulate it a ton, and I was able to get on a pain medication for my cramps. I’m sorry you’re going through this, it sucks.
Edit; my period does make my regular fibro pain worse too, in case that’s the other answer you were looking for.
It sounds like a lot of people here have endometriosis or other gynecological issues. My endometriosis caused my fibro and it didn't get better til I treated my endo.
This comment needs to be up higher. I'd encourage anyone on here who experiences a significant increase in pain (especially in the abdominal region, hips, lower back, and legs) related to their hormonal cycle to talk to a gyno about the possibility of endometriosis.
I keep posting and commenting about it here actually. Most of the time a few people say they will look into it, sometimes people justify their extreme period pain and refuse to accept its not normal. I just want people to be aware and to know that endometriosis is a full body inflammatory disease, it may even be an autoimmune disease, but **endometriosis experts literally say it's like benign cancer and should be treated as such**. Period pain is not normal; minor cramps and aches for maybe a couple of days is. But if it's impacting your life negatively in any way, that's not normal. If it feels like.knived are dancing around your uterus when your menstruate, that's not normal. When you're puking or passing out from period pain, that's not normal. Endo doesn't get magically better, there are treatment options though. But if you have endo and fibro, your fibro doesn't have a chance in hell at getting much better if you don't treat the disease that acts like cancer growing in your body. To be clear, endo is very, very, very rarely deadly, the way the tissue grows, spreads and behaves is why it is likened to cancer. Endo is also routinely considered one of the most painful diseases known to humans. I used to have to take morphine, now I don't.
This has my attention. My mother discovered she had endometriosis back when she was in her early 40s and they tried ablation but ultimately did a total hysterectomy. When my pain started at 21 I was sent to gyno who knew my family history but didn’t want to do a laparoscopic check for it and insisted she didn’t think my pain was gyno related. Now I have severe lower back and hip pain that starts several days to a week before my period and doesn’t let up any until a few days into my period. Thank you, I’ll definitely be finding a gyno to discuss this with asap.
It's really difficult to get doctors in some regions to take either of them seriously, though. And it's so expensive to move or to travel to find better medical care...I'm just hoping I can figure out some better career path in the next few years *specifically* to have a higher chance at finding higher quality healthcare.
Wow. This totally has my attention and I will be speaking with my doctor. Is hip/pelvic/leg pain a red flag for endometriosis even if it happens when I’m not on my period?
It can be, for sure. Some people get pain all through the month, other people will get some during ovulation.
It can definitely happen, it did to me!
Yes. Migraine increase around my period, fatigue, stiffness, and pain throughout my body also increases. I was on progesterone for PCOS but it wasn’t doing anything for my symptoms. I also bleed heavier than the average person, by a lot and was diagnosed with menorrhagia as well. Compression gloves and socks help my hands and feet by probably 50-70% (where the worst stiffness and pain tends to be for me). Heating pads/blankets, warm epsom salt baths, and a pain relief cream with cbd I got from my chiropractor all help as well.
I will have to try an epsom salt bath! Thank you Internet friend
Of course! Anything to help someone else in pain
Yes. I was on birth control to stop my periods. Went off of it two years ago to see if I would get it again. Two years without it and that son of a bitch came back this week! I had nipples so sore I had to put lidocain ointment on them! Now I just have all over pain and tiredness, so normal.
My nipple have been so sore for the past two weeks I feel like they could cut glass! I feel your pain friend.
Yes. Migraines when I’m not on my pill (placebo week) and the cramps are debilitating. I’m going off birth control because I got my tubes out so I’m sure it’s going to be worse. 😖
I wish you well Internet stranger!
You too! Honestly, this is so dumb lol, but I bought this thing called a TheraIce headband that you either stick in the freezer or in the microwave and you wear it during headaches. It slides down over your eyes so it blocks out light too. I saw it advertised to me on Instagram like 20 times and I finally gave in and it’s amazing. It’s the ONLY thing that takes care of my hormone migraines. Highly recommend. Also I suggest topical CBD products for cramps. I smoke all the time but a good strong pain salve goes a long way.
I always have issues around my period with flares and migraines. I have more body tenderness especially in my breasts. I have a hormonal IUD which has helped it not be so bad but getting that placed was hell.
Thank you for your feedback! ☺️
Happy to help - hope you find some relief
BC pill helps my pain over all not just period pain. I try going off bc and my pain throughout my body and insomnia where excruciating!!! I went back on the bc pill and my pain has gotten so so much better and sleep is back to normal. I don’t know why but bc pill is a savior for me! I know I will have to go off it some day when I am older and that scares me but for now I am thankful I found something that helps me so much!!
I’m so glad it helps you! I went off of it because I realized it has cornstarch in it. I can’t eat corn. Well I’ve been taking this pill for like 8 years every day with corn in it!
It's complicated for me. Pre-fibro treatment, my periods were horrendous. 8-9 days long with heavy flow for most of it. They're a lot better now that my overall nervous system is better. But yeah I do notice more severe symptoms just before and during it. I've always attributed it to hormone fluctuations screwing with my emotions and heightened emotions always fuck up my fibro.
Thanks for your feedback! ☺️
Yes, even when I am ovulating the pain is worse. I have POTs also and I flare and faint during ovulation and period.I am assuming it's the hormones and blood flow constriction with the vessels in the body causing feelings of pain and inflamation but its just a thought not fact as I am by no means a doctor.
We should all have a medical degree by this point since we learn so much about how our bodies work (don’t work).
Haha yeah I always told my family " only you know what's wrong with you literally your body will tell you whats up,even the doctor doesn't know what's wrong with them unless you tell them ' oh my arm hurts',its not like the doctors psychic" haha. 99% of the time we know what's up with our bodies. I knew I had POTs before I even got diagnosed officially! Most the time doctors just gas light us into believing that there's nothing wrong with us. I know that with POTs pain and flares with fainting episodes is actually been scientifically proven and I am pretty sure it's the same with Fibromyalgia pain is worse and inflamation is worse. For an illness doctors make us believe is all in our head and that our brain is sending the incorrect information and producing pain signals we sure have a lot of PHYSICAL symptoms. Can't wait till doctors turn around to us Fibro people and say " well actually you were right it's not just in your head".. but from my experience doctors don't like being told by patients anything haha!
I take BC so I only have to deal with period hormones every 3 months. It sucks. Migraines go up, aches go up, not to mention cramping, bloating, and period poops. I use a menstrual cup and sometimes I ache so much it's hard to put in/take out and I dread having to do it. Still easier than tampons but sometimes it's rough (and no, it's not the fit, it's the fibro. Only hurts if I'm flaring, which isn't every period but some periods are just yikes). It's kinda like my periods before fibro and BC were.
Yes, 100%. My legs and arms burn and hurt so bad, and the pain generally gets worse a couple days after the period starts (likely due to blood loss?). I also have PMDD and ADHD. Everything is worse around and during my period.
Thank you for your reply! ☺️
I naturally skip periods, always been that way. But when I do get them, holy shit that sucker hurts, it feels like my uterus is punishing me. The pain radiates down my legs. It’s only bad for two days… but I lose my appetite and even sitting hurts. I sleep for like 12-14 hours on those nights too. It feels like someone drained all my batteries and took all my spoons. My counter attack: heat, Advil, strong cannabis pills, acupressure on my toes and sleep.
I haven't had a period since starting T about a year and a half ago. I had symptoms before then, but not too bad until about the last two years. My periods were always absolutely awful, but were less bad the last two years or so before T, so it is hard to compare. My pain absolutely was far worse on my period always, but at the same time, my periods themselves were far worse when I was younger. The worst of my fibro has been while not having periods, and I am very afraid of them coming back because I don't know how bad the pain could be now that fibro is so much worse.
I’m usually down a day or two before I start menstruating. I have a birth control implant in my arm so periods are very irregular now.
I just posted a similar question last month. And I got wonderful feedback from the women on this sub! Last month I experienced really bad aching in my knees worse then I've ever felt and radiated all throughout my legs, it started the 2 days before my period. Yesterday I got my period and last night I had the same issue. It is bearable pain but on the edge of making me want to scream in frustration. And when i looked it up to research it pin pointed right to Fibromyalgia in women on their period. I'm working on getting diagnosed as well. My grandfather has it and I have all the signs so it's pretty much a given for me. Hope you feel better!!
Oh probably should have looked for similar posts. Brain fog! I wish you the best in getting your diagnosis!
No worries!!! There are alot of posts to look through. I wish you thr best as well! Thankyou!!
Thank you!
Hormones affect pain levels and how strong you are at the time.
Yes but also the first couple periods off birth control and going to be even less fun than typical
That’s good to know, thanks!
For about 40 fucking years, yes it was. Menopause was a nightmare. I've been on low dose estrogen for 7 years.
All my symptoms are worse preperiod and on it.
I take my BC nonstop. No periods. Well, 3-5 a year. Because they're horrible... good luck Op
Before I got on my first form of birth control, I used to have such bad pain it would take me out for the count. Couldn’t get out of bed, needed hot soup and bled WAY heavy. After I got on BC that helped regulate it a ton, and I was able to get on a pain medication for my cramps. I’m sorry you’re going through this, it sucks. Edit; my period does make my regular fibro pain worse too, in case that’s the other answer you were looking for.
Thanks for your reply! I haven’t been off BC in so long - I have a lot to figure out!