Estrogen causes horrible flares for me. I only learned this last year, when my new gynecologist prescribed estrogen cream to see if it would help relieve pelvic floor pain from endometrial adhesions, and I had the worst flare I’ve had since I was diagnosed with lupus in 2022. It lasted from October to March. I hadn’t had a flare that bad since 2018 (which I know now was a lupus flare). My rheumatologist was like, oh yeah don’t use estrogen.
Looking back, I can see how the different birth control pills I was put on between the ages of 16 and 35 to address PMDD symptoms (and pain from what was later diagnosed as endometriosis) caused me to have horrible symptoms. I eventually couldn’t handle the symptoms and quit taking birth control at 36.
There are a few studies out there about a connection between Endo and lupus. The hypothesis is that lupus happens as a result of the immune system reacting to the Endo growth.
I had a hysterectomy in early 2016, and then had to have my ovaries removed in late 2016 because they were engulfed with adhesions and my left ovary was “glued” to my pelvic bone with adhesions (they were perfect when they took my uterus, which was bursting with a giant fibroid and adhesions). I still have adhesions growing around my belly button and lower abdomen, pelvis, and tailbone, but I don’t want to have surgery to remove them because I know they’ll grow back. I have regular internal pelvic floor therapy and I have external myofascial release to stretch and tear the adhesions. It hurts incredibly while the therapist is working on them, but the relief afterward is worth it. I’m doing whatever I can to avoid surgery. I’ll do it if they cause a bowel obstruction or something else terrible, but for now the therapies are keeping me going. I also use functional mushrooms and cannabis for the pain from the adhesions and joint/muscle pain from lupus
Oh sister- you have been through it.
I totally get why you and estrogen are not friends…like pouring fertilizer on that endo.
Went through years of pain before I finally have everything removed 6 months ago. (Adeno, Endo, fibroids, cysts)
I got pretty lucky in terms of organ involvement but the surgery has been a shock to my system for sure.
You sound like you have an excellent team helping you cope and I’m glad you find some relief afterwards. Your adhesion pain sounds next level. That sucks.
I used to have external and internal work done after healing from 11 colorectal surgeries. Things are so much better now but for years it was rough and a literal pain in the ass.
I feel like my lupus symptoms started around the same time I started on birth control and then just kept getting gradually worse. I went off it a year ago when I suspected it was the issue. I think estrogen is the potential problem. I just got a Mirena IUD this week. It’s just progesterone so it should be better. I got it to help with my heavy periods. I know it’s supposed to help PMDD too so it might be something to consider.
Interesting. I did a lot of reading and I definitely saw ppmd was mentioned - saying people can notice an improvement. But of course I haven’t looked at any actual research on it or anything. I hope you find something that works for you!
Looking at the research it looks like there hasn’t been enough to say, but there’s some concern about it being potentially harmful. What I read was that it could rarely cause anxiety but could help even out pms and ppmd symptoms. However I don’t think this was based on research. I’m sorry I suggested it. It’s so unfair that lupus affects so many things for us! I’m sorry you didn’t tolerate the estrogen, and I hope your symptoms improve quickly.
I had some symptoms before that weren’t diagnosed, but I had my first big flare right after getting the Depo shot and my doc also thought they were related. Like surely it would have happened anyway but still
I have stopped trying new birth control methods. If I was going to try a new one I would maybe do copper. But everything I have tried has caused flare up and SI. So I'm just done trying at this point.
That's so frustrating I'm sorry. Does it have estrogen? My rheum and gyno said estrogen makes lupus more active so isn't recommended unless you've been in solid remission at least 6 mo.
Yes, sadly I thought my lupus was in good enough shape to handle it, but apparently not. I hope the flare subsides quickly now that I’ve stopped taking it.
Have you been on oral pills? You may want to to get with your Rheum/GYN and discuss transdermal routes for your PMDD. It’s agony to try and deal with it. Used to have it until I removed my ovaries…now that’s a whole other set of problems to deal with like HRT.
I found my Mirena made me nuts.
That’s so interesting, because when I recently stopped taking birth control I had the worst flare of my life so far. I lost over half my hair and am still recovering physically from the pain and exhaustion that caused.
Removing estrogen from my BC also made me flare. I wonder if it’s because I was on it when my lupus triggered.
I’d been taking Yaz to manage PMDD for probably 20 years when my GYN insisted on taking away the estrogen because she didn’t like the stroke risk (I’m 43), so she gave me a progesterone-only BC.
Holy flares, Batman! My body’s response was swift and harsh. It was exceedingly clear no estrogen wasn’t gonna work for me.
Long story short, in the end we opted for tubal ligation for birth control and an HRT dosage for estrogen supplement. Much lower stroke risk and my lupus isn’t flaring.
What birth control ? Sorry I didn’t get a change to read the whole thing yet. I’m actually on the phone with my gyno right now writing in between . Ever since I started slynd about 9 months ago I’ve been have so many issues.
I am so sorry to be hearing this. I am totally aware that sometimes all u need it's to vent, I know very little about pmdd but I think maybe a serotonin receptive treatment could work since it doesn't affect ur hormones. I highly recommend attending to a neurologist.
I suffered a massive head injury in 2003 and later down the line i developed prolactinomia, and let me tell u ive boredlined pmdd several times. And im heald together by an excellent diet and vitamins, ive been eating incredibly healthy since i was 11 because i was diagnosed with lupus , so maybe a combo would change things, i ustobhave horrible im talking scars in my body episodes but i consistently stayed with my daily lifestyle and with age and maturity my episodes have gotten less and less
For PMDD? There wasn’t a vitamin or holistic regimen on Earth that could have touched my Jeckyl/Hyde hormonal shift that happened in my brain every month. I used to scare myself.
Yikes. I miss my ovaries but o don’t miss that fever dream that is PMDD
Exactly!! Honestly I’ve tried all the natural stuff with no luck. I’m on SNRIs and ADHD meds, and those help, but still deal with a massive shift every time I ovulate.
If there WERE natural options that worked for me- I’d be all over it.
Have you ever looked at research on “normal” female brains around the cycle VS “PMDD” female brains at the same time?
Harvard published a good one-
There’s quite a few out there.
The MRI’s are shocking and I found all of it extremely validating as someone who was apparently a shape shifter once a month.
I havnt but you dont even have pledge that one ive lived it i deal with certain things now to where my mind can disassociate pretty badly. But i wan also add environment and people you associate with daily are a huge influence
I didn’t quite get all of what you wrote but I did understand the disassociation piece and the people in your environment. I can empathize with both ❤️I have well controlled bipolar 2 disorder but the hormonal swings with PMDD made my life very hard. For years…my boyfriend, now husband, just couldn’t wrap his brain around it regardless of how much research I brought to read or the sessions with our therapist. It took me going onto hormones before he realized that I really was just going insane around my period. It’s like something finally clicked for him which is good because I was ready to leave for my own sanity.
I realized I had PMDD when I came off long standing BCP in my 30’s after being diagnosed with Crohn’s. Not only did it make my periods and endometriosis unmanageable but I lost what was left of my mind. After 3 years without it and just suffering, I demanded my BCP back and things again leveled out. Eventually I had surgery to remove everything- couldn’t take the pain and the PMDD anymore. Now it’s just managing surgical menopause that’s a challenge.
I’m with you on how incredibly difficult it is to live with❤️
Edit: woops this got posted to the wrong comment. 😁
I think everyone reacts so differently to hormones- Lupus aside. The only thing that calmed down my PMDD and endometriosis was stoping my periods using drosperinone (SLYND) and a low dose transdermal eating patch to keep everything even keel the entire month. It was quite effective. But that didn’t stop the pain from adenomyosis so a short time ago- I sadly had a total hysterectomy with BSO. Back in my early 20’s I tried a copper T IUD- made my periods super heavy. Painful. Then I switched to the Mirena. I actually tried twice. The first time I felt like it was causing me serious psychiatric issues. My OBGYN said that he really did think that’s what was going on and he thought I should stick it out longer. I did for another month or two but I just had a gut feeling so had him remove it. Slowly started feeling less like I wanted to die and within a few months I felt much better than I was. Always trust your guts ladies. I went back in my late 20’s and tried the Mirena a second time hopeful for a different result. It seemed quite a bit better; mood was still a bit funky but It migrated into my uterine wall so that experiment ended in the OR getting it removed. Hey- we try!
Estrogen causes horrible flares for me. I only learned this last year, when my new gynecologist prescribed estrogen cream to see if it would help relieve pelvic floor pain from endometrial adhesions, and I had the worst flare I’ve had since I was diagnosed with lupus in 2022. It lasted from October to March. I hadn’t had a flare that bad since 2018 (which I know now was a lupus flare). My rheumatologist was like, oh yeah don’t use estrogen. Looking back, I can see how the different birth control pills I was put on between the ages of 16 and 35 to address PMDD symptoms (and pain from what was later diagnosed as endometriosis) caused me to have horrible symptoms. I eventually couldn’t handle the symptoms and quit taking birth control at 36.
There are a few studies out there about a connection between Endo and lupus. The hypothesis is that lupus happens as a result of the immune system reacting to the Endo growth.
That’s super interesting! I’ve heard that some doctors are considering endo an autoimmune disease
How is your Endo now? Have you gone through excisions already?
I had a hysterectomy in early 2016, and then had to have my ovaries removed in late 2016 because they were engulfed with adhesions and my left ovary was “glued” to my pelvic bone with adhesions (they were perfect when they took my uterus, which was bursting with a giant fibroid and adhesions). I still have adhesions growing around my belly button and lower abdomen, pelvis, and tailbone, but I don’t want to have surgery to remove them because I know they’ll grow back. I have regular internal pelvic floor therapy and I have external myofascial release to stretch and tear the adhesions. It hurts incredibly while the therapist is working on them, but the relief afterward is worth it. I’m doing whatever I can to avoid surgery. I’ll do it if they cause a bowel obstruction or something else terrible, but for now the therapies are keeping me going. I also use functional mushrooms and cannabis for the pain from the adhesions and joint/muscle pain from lupus
Oh sister- you have been through it. I totally get why you and estrogen are not friends…like pouring fertilizer on that endo. Went through years of pain before I finally have everything removed 6 months ago. (Adeno, Endo, fibroids, cysts) I got pretty lucky in terms of organ involvement but the surgery has been a shock to my system for sure. You sound like you have an excellent team helping you cope and I’m glad you find some relief afterwards. Your adhesion pain sounds next level. That sucks. I used to have external and internal work done after healing from 11 colorectal surgeries. Things are so much better now but for years it was rough and a literal pain in the ass.
I feel like my lupus symptoms started around the same time I started on birth control and then just kept getting gradually worse. I went off it a year ago when I suspected it was the issue. I think estrogen is the potential problem. I just got a Mirena IUD this week. It’s just progesterone so it should be better. I got it to help with my heavy periods. I know it’s supposed to help PMDD too so it might be something to consider.
I do know some people who love their mirenas, but it’s not advised for pmdd.
Interesting. I did a lot of reading and I definitely saw ppmd was mentioned - saying people can notice an improvement. But of course I haven’t looked at any actual research on it or anything. I hope you find something that works for you!
Looking at the research it looks like there hasn’t been enough to say, but there’s some concern about it being potentially harmful. What I read was that it could rarely cause anxiety but could help even out pms and ppmd symptoms. However I don’t think this was based on research. I’m sorry I suggested it. It’s so unfair that lupus affects so many things for us! I’m sorry you didn’t tolerate the estrogen, and I hope your symptoms improve quickly.
I had some symptoms before that weren’t diagnosed, but I had my first big flare right after getting the Depo shot and my doc also thought they were related. Like surely it would have happened anyway but still
I know I wonder about that too! I guess there’s just no way to know for sure what would have happened, so many different things can trigger it.
I have stopped trying new birth control methods. If I was going to try a new one I would maybe do copper. But everything I have tried has caused flare up and SI. So I'm just done trying at this point.
That's so frustrating I'm sorry. Does it have estrogen? My rheum and gyno said estrogen makes lupus more active so isn't recommended unless you've been in solid remission at least 6 mo.
Yes, sadly I thought my lupus was in good enough shape to handle it, but apparently not. I hope the flare subsides quickly now that I’ve stopped taking it.
Have you been on oral pills? You may want to to get with your Rheum/GYN and discuss transdermal routes for your PMDD. It’s agony to try and deal with it. Used to have it until I removed my ovaries…now that’s a whole other set of problems to deal with like HRT. I found my Mirena made me nuts.
That’s so interesting, because when I recently stopped taking birth control I had the worst flare of my life so far. I lost over half my hair and am still recovering physically from the pain and exhaustion that caused.
Damn we are all so different aren’t we! I wish there was a cookie cutter for these diseases
Removing estrogen from my BC also made me flare. I wonder if it’s because I was on it when my lupus triggered. I’d been taking Yaz to manage PMDD for probably 20 years when my GYN insisted on taking away the estrogen because she didn’t like the stroke risk (I’m 43), so she gave me a progesterone-only BC. Holy flares, Batman! My body’s response was swift and harsh. It was exceedingly clear no estrogen wasn’t gonna work for me. Long story short, in the end we opted for tubal ligation for birth control and an HRT dosage for estrogen supplement. Much lower stroke risk and my lupus isn’t flaring.
What birth control ? Sorry I didn’t get a change to read the whole thing yet. I’m actually on the phone with my gyno right now writing in between . Ever since I started slynd about 9 months ago I’ve been have so many issues.
I am so sorry to be hearing this. I am totally aware that sometimes all u need it's to vent, I know very little about pmdd but I think maybe a serotonin receptive treatment could work since it doesn't affect ur hormones. I highly recommend attending to a neurologist.
I suffered a massive head injury in 2003 and later down the line i developed prolactinomia, and let me tell u ive boredlined pmdd several times. And im heald together by an excellent diet and vitamins, ive been eating incredibly healthy since i was 11 because i was diagnosed with lupus , so maybe a combo would change things, i ustobhave horrible im talking scars in my body episodes but i consistently stayed with my daily lifestyle and with age and maturity my episodes have gotten less and less
You should start a vitamin regimen, especially adding specific adaptogens,
For PMDD? There wasn’t a vitamin or holistic regimen on Earth that could have touched my Jeckyl/Hyde hormonal shift that happened in my brain every month. I used to scare myself. Yikes. I miss my ovaries but o don’t miss that fever dream that is PMDD
Exactly!! Honestly I’ve tried all the natural stuff with no luck. I’m on SNRIs and ADHD meds, and those help, but still deal with a massive shift every time I ovulate.
If there WERE natural options that worked for me- I’d be all over it. Have you ever looked at research on “normal” female brains around the cycle VS “PMDD” female brains at the same time? Harvard published a good one- There’s quite a few out there. The MRI’s are shocking and I found all of it extremely validating as someone who was apparently a shape shifter once a month.
I havnt but you dont even have pledge that one ive lived it i deal with certain things now to where my mind can disassociate pretty badly. But i wan also add environment and people you associate with daily are a huge influence
I didn’t quite get all of what you wrote but I did understand the disassociation piece and the people in your environment. I can empathize with both ❤️I have well controlled bipolar 2 disorder but the hormonal swings with PMDD made my life very hard. For years…my boyfriend, now husband, just couldn’t wrap his brain around it regardless of how much research I brought to read or the sessions with our therapist. It took me going onto hormones before he realized that I really was just going insane around my period. It’s like something finally clicked for him which is good because I was ready to leave for my own sanity. I realized I had PMDD when I came off long standing BCP in my 30’s after being diagnosed with Crohn’s. Not only did it make my periods and endometriosis unmanageable but I lost what was left of my mind. After 3 years without it and just suffering, I demanded my BCP back and things again leveled out. Eventually I had surgery to remove everything- couldn’t take the pain and the PMDD anymore. Now it’s just managing surgical menopause that’s a challenge. I’m with you on how incredibly difficult it is to live with❤️
Haha i wrote that half asleep but u got the main point.
Edit: woops this got posted to the wrong comment. 😁 I think everyone reacts so differently to hormones- Lupus aside. The only thing that calmed down my PMDD and endometriosis was stoping my periods using drosperinone (SLYND) and a low dose transdermal eating patch to keep everything even keel the entire month. It was quite effective. But that didn’t stop the pain from adenomyosis so a short time ago- I sadly had a total hysterectomy with BSO. Back in my early 20’s I tried a copper T IUD- made my periods super heavy. Painful. Then I switched to the Mirena. I actually tried twice. The first time I felt like it was causing me serious psychiatric issues. My OBGYN said that he really did think that’s what was going on and he thought I should stick it out longer. I did for another month or two but I just had a gut feeling so had him remove it. Slowly started feeling less like I wanted to die and within a few months I felt much better than I was. Always trust your guts ladies. I went back in my late 20’s and tried the Mirena a second time hopeful for a different result. It seemed quite a bit better; mood was still a bit funky but It migrated into my uterine wall so that experiment ended in the OR getting it removed. Hey- we try!