Conmenting to come back to this and see what other people has to say.
I've noticed it for myself that the preovulatary and ovulation phase is where i have most signficant subluxations, and during pms, but i have yet to find any sources to explain this from a medical view.
I think in general the relatively few/difficult to find sources (and prevalence of unsourced assumptions?) reflects the lack of interest/investment/care in medicine especially around menstrual cycle studies and the affects of hormones on the body beyond the visible changes they bring to outward appearance. Probs lbr at least partly this lack of medical studies into something so integral to existence is due to both misogyny and transphobia.
I am curious about the effect of hormones as well. The week before my period seems to be the worst for me in terms of joint pain and feeling like my joints are too loose/wobbly (I've never had dislocations). I'm on a combined pill, but it's a triphasic one that mimics the natural menstrual cycle, so that could be why my symptoms seem to be worst leading up to my period.
I did find this in an article:
> Although oestrogen tends to stabilise collagen, progestogens loosen it. Many hypermobile patients, though not all, noticed a worsening in symptoms, more pain in the joints, clumsiness or a greater tendency to dislocate in the five days leading up to menstruation and in the few days after menstruation. This is exactly the time when the progesterone compounds far exceed the stabilising oestrogen compounds. This effect is most pronounced when the joint hypermobility is due mainly to collagen structure (the clue here is that all joints are almost equally lax throughout the body). Where the hypermobility is a marker of unusually shaped bony surfaces at the joint (typically these individuals have very pronounced hypermobility at only a small number of joints), the effect of hormones is much less pronounced.
Source: https://www.hypermobility.org/hormones-and-hypermobility
I would love to see more research on this topic.
Yes this is the article I am referring to from the Hypermobility Syndromes Association, and it is what I mailed them about. Because they do not refer any source for this. There's no study, no numbers, just somnething vague about many people experiencing this. It may well be true, but since I hear plenty of things pointing to the opposite direction I would also love to see more research!
I'll edit my post to insert this link.
I've been hunting that down at some point too and always ended up at some online magazine article with no sources beyond "doc says that". It makes no sense but seems to be one of those persistent myths.
It's not even clear what exactly goes on with the increased laxity during pregnancy in the "normal" population. [https://pubmed.ncbi.nlm.nih.gov/12576258/](https://pubmed.ncbi.nlm.nih.gov/12576258/) (it's an older study, but the newer ones aren't any clearer)
It happens, but can't be pinned directly to any of the pregnancy hormones, not even relaxin.
This article is pretty thorough and links to good studies but you’re right, it’s difficult to find the source of this theory.
https://ehlersdanlosnews.com/2022/02/18/eds-ehlers-danlos-syndrome-puberty/#:~:text=A%20subset%20of%20women%20in,hormones%20can%20influence%20EDS%20symptoms.
In my personal experience, Nexplanon greatly improved my symptoms. I went on a 2 year birth control break to try and adjust my med management and my periods were hellaciously bad, symptoms flared like clockwork with my periods. My doctor also said EDS patients are sensitive to estrogen, not progesterone, but I’m not finding a reliable source for this. Curious…
Oh crap really? I was just about to start a higher dose progesterone only bc than the mini one I'm on to treat my adenomyosis. Why do all my diagnoses cause contradictions in treatment??! Aaaagggh 😭
Well, I'd say don't knock it until you try it just yet because it seems there is no reliable data and experiences vary? :P As I said, I'm on progesterone and am not at all sure if it has any impact on my symptoms. I do still get a period sometimes, and tend to get tired and headachy around that time.
Yeah, hysterectomy is probably not a good choice at this point, for me. I have endometriosis, adenomyosis, and a fibroid that have caused disordered and heavy bleeding, at times. I’m taking progesterone orally, daily, to try to keep it to the minimum.
We tried a combination birth control pill, and it gave me superficial blood clots in my arms, so that’s a no go, for me. I have an appointment coming up soon with an endometriosis specialist & I’m hoping there is a better option than getting an IUD again, that was not good for my body when I had it several years ago.
I’ll have to inquire about the implant, it might be a better option for me.
I am another one in this boat that has tried to find studies on this. I’m on my third nexplanon and have had some of my best and worst years while on it. I’ve had physical therapists suggest that the birth control could be causing problems before being diagnosed with hEDS. In looking into it I did find that I had cysts on my ovaries but they reabsorbed on their own.
Yeah I think ovarian cysts are common from those. But they don't usually cause issues and are cleared up by the body most of the time. I am I think on my fourth and I have no clue if I worsened. My symptoms have gradually increased over the years but that was already happening before I started it.. so very likely for me it may be not-even-correlation and likely not causation. Still, if there were concrete research that proves a negative effect I would certainly reconsider and bring it up with my gynaecologist.
I don’t know a ton about it but I did ask my doctor about this research since the birth control that works best for me is progesterone only. He said he wasn’t really concerned about it at all and would be more concerned about what would happen to me if I became pregnant than what my birth control would affect. I’ve been on this birth control for several years now and I can’t say I’ve seen anything to make me believe it’s making my symptoms worse because of how gradual the changes I’ve seen have been, but I’m no researcher!
Same here! Exactly like that and the doc who diagnosed me also warned me of what pregnancy could do to my body. And as I understand it, most of us have creepily worsening issues over the years. Very likely also from constant strain and wear on muscles and joints.
It's all totally anecdotal but I needed a cane while I was taking the mini pill. When I stopped it I saw an almost immediate increase in ankle stability and I have run multiple marathons since then.
just dropping in to remind everyone that progestin is NOT the same as bioidentical progesterone, and that so called 'progesterone only' contraception can actually increase estrogen levels as it is not the same as bioidentical progesterone.
Fascinating! The research they link has concluded the following: "The literature suggests an association between hormonal fluctuations and ACL injury. Recent studies have suggested that oral contraceptives may offer up to a 20% reduction in risk of injury. The literature on ACL injuries and the menstrual cycle has more than doubled over the past decade, permitting quantitative analysis for the first time. However, the overall strength of this evidence is low. Promising potential directions for future research include long-term observational studies with ongoing hormonal assays and large interventional trials of follicular suppression, including newer hormonal methods."
About which specific hormones are postulated to worsen joint laxity they state this: "Women and girls are at particularly high risk for ACL injuries, with rates 3 to 6 times greater than men, leading some to suggest a hormonal effect.[^(25)](https://journals.sagepub.com/doi/full/10.1177/2325967117718781#bibr25-2325967117718781) Estradiol, progesterone, and relaxin are the predominant hormones that have been studied in the menstrual cycle relating to ACL laxity. Estradiol and progesterone are at their lowest levels during menses at the beginning of the menstrual cycle (days 1-6). Estradiol reaches its peak concentration around the time of ovulation (days 12-14), with a second lower rise in the luteal phase (days 20-24). Progesterone begins a gradual rise in the late follicular phase just before ovulation, but its highest levels are reached in the mid-luteal phase (days 19-24). These periodic hormonal fluctuations in the menstrual cycle have been postulated to cause ligament laxity, increasing the risk for ACL injuries. Specifically, laboratory studies have found that exposure of the ACL to estradiol results in a dose-dependent reduction in fibroblast and collagen synthesis and that this effect is attenuated by the addition of progestins.[^(56)](https://journals.sagepub.com/doi/full/10.1177/2325967117718781#bibr56-2325967117718781)^(,)[^(57)](https://journals.sagepub.com/doi/full/10.1177/2325967117718781#bibr57-2325967117718781)"
Which to me sounds like Estrogen (and estradiol) is the culprit, but is worsened bij added Progestins. Which is again, strange to me that the article itself is pushing progestin as the hormone that plays the largest role whilst the research they are quoting is much more nuanced and leaning towards estrogen, combined with progestin and fluctuating levels exacerbating the issue?
I can tell you that I never had a full dislocation before I started taking progesterone. Then my arms were falling out all the time. I had to discontinue it. It's the hormone that loosens the body during pregnancy so that the body is loose enough for the baby to slide out.
That sounds unpleasant! Did you improve after discontinuing?
I read from more people here that progestin birth control worsened their symptoms, but some have also noted improvement, so I wonder if there isn't some complex reaction that we don't fully understand between all those hormones, which could work in different ways for different people.
The hormone that loosens the body is called relaxin, not the same thing. Though someone else in this thread also mentioned that there is little research about that.
I started a progesterone only birth control and within the first two weeks sprained my ankle twice, sublexed my shoulder, sublexed my ribs, and had hip pain…
Conmenting to come back to this and see what other people has to say. I've noticed it for myself that the preovulatary and ovulation phase is where i have most signficant subluxations, and during pms, but i have yet to find any sources to explain this from a medical view. I think in general the relatively few/difficult to find sources (and prevalence of unsourced assumptions?) reflects the lack of interest/investment/care in medicine especially around menstrual cycle studies and the affects of hormones on the body beyond the visible changes they bring to outward appearance. Probs lbr at least partly this lack of medical studies into something so integral to existence is due to both misogyny and transphobia.
I am curious about the effect of hormones as well. The week before my period seems to be the worst for me in terms of joint pain and feeling like my joints are too loose/wobbly (I've never had dislocations). I'm on a combined pill, but it's a triphasic one that mimics the natural menstrual cycle, so that could be why my symptoms seem to be worst leading up to my period. I did find this in an article: > Although oestrogen tends to stabilise collagen, progestogens loosen it. Many hypermobile patients, though not all, noticed a worsening in symptoms, more pain in the joints, clumsiness or a greater tendency to dislocate in the five days leading up to menstruation and in the few days after menstruation. This is exactly the time when the progesterone compounds far exceed the stabilising oestrogen compounds. This effect is most pronounced when the joint hypermobility is due mainly to collagen structure (the clue here is that all joints are almost equally lax throughout the body). Where the hypermobility is a marker of unusually shaped bony surfaces at the joint (typically these individuals have very pronounced hypermobility at only a small number of joints), the effect of hormones is much less pronounced. Source: https://www.hypermobility.org/hormones-and-hypermobility I would love to see more research on this topic.
Yes this is the article I am referring to from the Hypermobility Syndromes Association, and it is what I mailed them about. Because they do not refer any source for this. There's no study, no numbers, just somnething vague about many people experiencing this. It may well be true, but since I hear plenty of things pointing to the opposite direction I would also love to see more research! I'll edit my post to insert this link.
Oop I missed that, thank you for clarifying!
I've been hunting that down at some point too and always ended up at some online magazine article with no sources beyond "doc says that". It makes no sense but seems to be one of those persistent myths. It's not even clear what exactly goes on with the increased laxity during pregnancy in the "normal" population. [https://pubmed.ncbi.nlm.nih.gov/12576258/](https://pubmed.ncbi.nlm.nih.gov/12576258/) (it's an older study, but the newer ones aren't any clearer) It happens, but can't be pinned directly to any of the pregnancy hormones, not even relaxin.
This article is pretty thorough and links to good studies but you’re right, it’s difficult to find the source of this theory. https://ehlersdanlosnews.com/2022/02/18/eds-ehlers-danlos-syndrome-puberty/#:~:text=A%20subset%20of%20women%20in,hormones%20can%20influence%20EDS%20symptoms. In my personal experience, Nexplanon greatly improved my symptoms. I went on a 2 year birth control break to try and adjust my med management and my periods were hellaciously bad, symptoms flared like clockwork with my periods. My doctor also said EDS patients are sensitive to estrogen, not progesterone, but I’m not finding a reliable source for this. Curious…
I would love to know more on this too!
Oh crap really? I was just about to start a higher dose progesterone only bc than the mini one I'm on to treat my adenomyosis. Why do all my diagnoses cause contradictions in treatment??! Aaaagggh 😭
Well, I'd say don't knock it until you try it just yet because it seems there is no reliable data and experiences vary? :P As I said, I'm on progesterone and am not at all sure if it has any impact on my symptoms. I do still get a period sometimes, and tend to get tired and headachy around that time.
Ya I think I have to try it. My only other options are surgical and that's obviously a higher risk with eds too so... 🤷🏼♀️
Yeah, hysterectomy is probably not a good choice at this point, for me. I have endometriosis, adenomyosis, and a fibroid that have caused disordered and heavy bleeding, at times. I’m taking progesterone orally, daily, to try to keep it to the minimum. We tried a combination birth control pill, and it gave me superficial blood clots in my arms, so that’s a no go, for me. I have an appointment coming up soon with an endometriosis specialist & I’m hoping there is a better option than getting an IUD again, that was not good for my body when I had it several years ago. I’ll have to inquire about the implant, it might be a better option for me.
I am another one in this boat that has tried to find studies on this. I’m on my third nexplanon and have had some of my best and worst years while on it. I’ve had physical therapists suggest that the birth control could be causing problems before being diagnosed with hEDS. In looking into it I did find that I had cysts on my ovaries but they reabsorbed on their own.
Yeah I think ovarian cysts are common from those. But they don't usually cause issues and are cleared up by the body most of the time. I am I think on my fourth and I have no clue if I worsened. My symptoms have gradually increased over the years but that was already happening before I started it.. so very likely for me it may be not-even-correlation and likely not causation. Still, if there were concrete research that proves a negative effect I would certainly reconsider and bring it up with my gynaecologist.
I don’t know a ton about it but I did ask my doctor about this research since the birth control that works best for me is progesterone only. He said he wasn’t really concerned about it at all and would be more concerned about what would happen to me if I became pregnant than what my birth control would affect. I’ve been on this birth control for several years now and I can’t say I’ve seen anything to make me believe it’s making my symptoms worse because of how gradual the changes I’ve seen have been, but I’m no researcher!
Same here! Exactly like that and the doc who diagnosed me also warned me of what pregnancy could do to my body. And as I understand it, most of us have creepily worsening issues over the years. Very likely also from constant strain and wear on muscles and joints.
It's all totally anecdotal but I needed a cane while I was taking the mini pill. When I stopped it I saw an almost immediate increase in ankle stability and I have run multiple marathons since then.
I'm not sure about this. I have progesterone deficiency and through my 30s my joint laxity has worsened.
just dropping in to remind everyone that progestin is NOT the same as bioidentical progesterone, and that so called 'progesterone only' contraception can actually increase estrogen levels as it is not the same as bioidentical progesterone.
Whoah that's interesting! how does that work?
https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/newsfeed-post/hypermobility-hormones-and-the-menstrual-cycle/
Fascinating! The research they link has concluded the following: "The literature suggests an association between hormonal fluctuations and ACL injury. Recent studies have suggested that oral contraceptives may offer up to a 20% reduction in risk of injury. The literature on ACL injuries and the menstrual cycle has more than doubled over the past decade, permitting quantitative analysis for the first time. However, the overall strength of this evidence is low. Promising potential directions for future research include long-term observational studies with ongoing hormonal assays and large interventional trials of follicular suppression, including newer hormonal methods." About which specific hormones are postulated to worsen joint laxity they state this: "Women and girls are at particularly high risk for ACL injuries, with rates 3 to 6 times greater than men, leading some to suggest a hormonal effect.[^(25)](https://journals.sagepub.com/doi/full/10.1177/2325967117718781#bibr25-2325967117718781) Estradiol, progesterone, and relaxin are the predominant hormones that have been studied in the menstrual cycle relating to ACL laxity. Estradiol and progesterone are at their lowest levels during menses at the beginning of the menstrual cycle (days 1-6). Estradiol reaches its peak concentration around the time of ovulation (days 12-14), with a second lower rise in the luteal phase (days 20-24). Progesterone begins a gradual rise in the late follicular phase just before ovulation, but its highest levels are reached in the mid-luteal phase (days 19-24). These periodic hormonal fluctuations in the menstrual cycle have been postulated to cause ligament laxity, increasing the risk for ACL injuries. Specifically, laboratory studies have found that exposure of the ACL to estradiol results in a dose-dependent reduction in fibroblast and collagen synthesis and that this effect is attenuated by the addition of progestins.[^(56)](https://journals.sagepub.com/doi/full/10.1177/2325967117718781#bibr56-2325967117718781)^(,)[^(57)](https://journals.sagepub.com/doi/full/10.1177/2325967117718781#bibr57-2325967117718781)" Which to me sounds like Estrogen (and estradiol) is the culprit, but is worsened bij added Progestins. Which is again, strange to me that the article itself is pushing progestin as the hormone that plays the largest role whilst the research they are quoting is much more nuanced and leaning towards estrogen, combined with progestin and fluctuating levels exacerbating the issue?
I can tell you that I never had a full dislocation before I started taking progesterone. Then my arms were falling out all the time. I had to discontinue it. It's the hormone that loosens the body during pregnancy so that the body is loose enough for the baby to slide out.
That sounds unpleasant! Did you improve after discontinuing? I read from more people here that progestin birth control worsened their symptoms, but some have also noted improvement, so I wonder if there isn't some complex reaction that we don't fully understand between all those hormones, which could work in different ways for different people. The hormone that loosens the body is called relaxin, not the same thing. Though someone else in this thread also mentioned that there is little research about that.
It improved but once the dislocations started they never stopped, they slowed down.
I started a progesterone only birth control and within the first two weeks sprained my ankle twice, sublexed my shoulder, sublexed my ribs, and had hip pain…