I think it may be helpful to share my experience on here, as I'm not sure how common knowledge this is? If I can help one person save them going through what I have.
I have had Endo at least 10 years, last year my gyno's latest suggestion was to try a Progesterone only Mini Pill. My history is that I have tried loads of Pills over the years, none have helped me. I was actually a bit more optimistic about it, thinking having never tried a Mini Pill, only combined ones before maybe Progesterone only could be the one that helps me?
I was expecting all the usual Pill / hormone side effects headaches and so on. But what happened took me completely by surprise. I only took it for a couple of months, during that time my health deteriorated rapidly, and I felt huge physical changes in my body. Strange sensations of things stretching all over my body, which made me feel loose all over, and considerably weaker and in much more pain because of this.
I went back to the Doctor after a few weeks and when I described my symptoms she seemed to think they weren't connected. I just carried on taking it, but then I googled it and came across websites about Hypermobility and lots of information about Progesterone affecting women in that way. It is the hormone that relaxes ligaments during pregnancy, and also affects the collagen structure in your body. I was really shocked that the Doctor seemed to have no knowledge of this? I then immediately stopped it.
Here is the advice on Hormones from the UK Hypermobility charity:
This is a year ago and the damage it appears to have done seems like it is going to be permanent, I now have problems with all my joints including areas that never even bothered me before like fingers, elbows, jaw, wrists.
No one had mentioned anything like this to me I have seen a few Physiotherapists over the years, I didn't realise that I was even prone to being Hypermobile. There are various degrees of it as a condition, and some people wouldn't be classed as having Hypermobilty Syndrome but could still be a bit Hypermobile. Even within Hypermobile people some are way more sensitive to Progesterone than others.
If any of you do know you are Hypermobile or have always been very bendy / flexible and have Endo and Progesterone Injection / Pill micronor, noriday, cerazette, norgeston, cerelle / Mirena is suggested, be very careful, bear this in mind, and do your research. If you look on the Hypermobility website forums some get on better with Mirena as although it is Progesterone it is a much lower dose but others have also been affected badly by this too.
I'm currently taking a combined pill and Oestrogen is supposed to be the Hormone that helps laxity by stabilising things, but for me it hasn't made any difference.
This is going to be my motto, TRUST your own judgement you know your own body best. I should have come straight off it when I suspected it was doing damage, but I listened to the doctor and carried on for a few more weeks which made things even worse.
I don't want to alarm or panic anyone, as this is probably a low percentage of Women, but equally I believe its important we all have as much information as possible available.
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Oh my gosh! After I started getting the Depo shot, I had weird feelings in my joints. Like pains and such. Then my knee felt like it was coming out of socket if I turned funny ( I have to do lots of movements where I work), almost like it would give out on me; then hurt all day. I knew it had to do with the shot, but never knew it was because of THAT reason. Thanks for mentioning this!!!
It does sound like that was probably the cause? I'm not sure how long a Depo Shot lasts for? But I suppose that's worse if it affects you badly, as once it's in your system you can't stop it like you can when taking the pill.
My shots I get lasts 3 months. But estrogen pills or the progesterone only pills don't work for me, they make things worse. So this is more of a near last resort.
Thanks catlou, I'm glad you shared that because recently my doctor suggested that if my ovarian cyst ruptures continue to be a nuisance that he would try me on depo provera. But I am currently being treated for joint pain in the sacroiliac. Been in excruciating pain since April going on 6 months now. And if I ever get out of it I definitely don't want to take something thats gonna bring it on again, so thanks for that info. I never cared for synthetic hormones too many side effects so i really fear menopause. I also was diagnosed as having osteopenia, and have read that this progesterone based treatment can cause bone loss. So it doesn't sound like a good option for me.
You are welcome! I really don't like Synthetic hormones either! I wonder is it more of an Endo thing getting bad side effects as I have never got on with any of them yet some people take them fine!
My bones are low too, so it's interesting to know that about Progesterone.
I'm being put onto the all progesterone pill. Hearing all this worries me now, I'm only 20 I was diagnosed with endo nearly 3 years ago, I also have a 2 year old and have re started back at college. Thanks for the warning!
Don't let it worry you - too much!! This doesn't apply to everyone only Hypermobile / Bendy people lots of ladies take Progesterone with no problems too!
Take Care xx
Hi catlou, I've never heard of what u r experiencing. i just wanted to say good luck with it all. I hope you are able to correct some of the damage. Take care x
Thanks for sharing this information I have had problems with that pill and the mirena infact I only lasted a matter of months and well cerezette I took for 10 days and stopped!
I have a problem with my lower back it feels like it clicks out of joint but am now suffering everyday as a result.
Hi, thank you for the warning, I agree with what you said about trusting your own judgment about your body. My GP gave me a pill to try (Yasmin) for my Endo I had a strong feeling before taking them that they won't work on me, as no other pill helped me in the past, I told my GP that and he said try it for a month and see what happens. After 2 days of taking them I knew it didn't suit me. I was crying so much for no reason, my depression got a lot worse, and it kept looking at my wrists, I had a strong urge to cut my wrists. Something clicked inside me and I knew something was wrong and stopped taking the pill immediately.
I'm quite taken aback by this news, and am now utterly confused by my own experience - and about what to do next ...
I was always told I was a bit bendy and to keep my muscle tone etc across joints really strong - which I've always done. I had a mirena coil inserted nearly 5 years ago when I was having increasingly painful, and more frequent period pains as I entered the perimenopause.
[NB I was diagnosed with endometriosis about 20 yrs ago, but although I had 2 laps, the first was just diagnostic with no ablation, and 2nd one, with ablation, was only needed once I was 50 and told to stop taking the pill, which was when things got bad, and led to me having the mirena. Otherwise, my endo was only ever 'bad' period pains, which were nothing like what most people on here describe, and taking the pill had always controlled those, with no other ill effects].
Before I had the mirena, along with the perimenopause symptoms I was also developing aching joints, particularly back and hips. Once the mirena was fitted, as well as stopping all my period pains and numerous other cyclical aches, pains and depressions, all of my joint aches also disappeared - and I assumed the progesterone had helped with this.
In the last few months, maybe more, I have noticed the return of the joint pains, and wondered if it was partly because my mirena is nearing the end of its life - although I've also been ill and lost some muscle tone, and definitely feel my joints to be more floppy.
I'm due for the mirena to be removed in about 4-5 months, and I was hoping I could have a replacement, as I don't want a return of the endometriosis, and I definitely don't want the joint pains to get worse.
Obviously it's possible that my lack of joint pains have nothing to do with the mirena, but if oestrogen is good for tightening us up over our joints, it definitely isn't good for endo, so I assume that's no an option, meanwhile if the progesterone is bad, then I shouldn't be having a replacement mirena, yet it seemed to help me ... I'm not sure where this all leaves me.
Has anyone got any refs to peer-reviewed journal articles on all of this?? - I'm not too keen on anything any website says, unless I can chase and verify the sources.
You see "On Paper!" somebody like you who has been told you are "Bendy!" is the reason I wrote this post, as it would be something you need to be aware of! I never even knew I was - until all this happened. I have a new Physio since it happened who is way way better than all the others I have seen over the years and she thinks I am. She treats a lot of people who are Hypermobile and is very aware of how Hormones affect ladies, which Doctors and Physios in general don't seem to be. Incidentally her Daughter is Hypermobile and has also been greatly affected by IVF Treatment.
However it sounds to me like the opposite is true of you and maybe Mirena has helped you, well it seems like it definitely didn't make you worse anyway as you would have noticed if you were more Lax after you had it. There are always people who are exceptions in the outcomes they get with medication? I would trust your own judgement and have another if you think it has been good for you - you could always have it take out if you changed your mind? How the Progesterone affected me caught me completely unawares and has massively changed my body for the worst - to the point where I actually think they should put some sort of Warning / Disclaimer on the pack.
I don't have any link to Peer Reviewed papers sorry - maybe if you have a Google there might be some? But that is the Structural effect that Progesterone has in the body and Oestrogen is supposed to do the opposite.
It is all very confusing......I'm now on a Microgynon as I didn't get on with Progesterone but do feel that the Oestrogen in that is a bad thing for the Endo!!
Thanks for replying. It wasn't really you - as such - that caused the confusion. In fact, I think it's really good that you posted about this issue, as I had no idea that progesterone could make joints more lax - even though I used to be a Biology teacher and know about the effect it has in prep for labour!
I've also discovered that the Hypermobility society is based in Plymouth - so near me! I might have a chat to them. My osteo friend says I'm not hypermobile, but I do have a couple of conditions and already have the vapours about Travel Insurance as it is, without the risk of developing any more things to declare.
Hopefully ... I can search for research papers online, the next time I'm in Exeter Uni. if I find anything interesting, I'll let you know. Meanwhile, it was Microgynon I was on for much of my fertile life once I was told about the endo, and it made all my monthly life so much more bearable, so I hope you have great success with it.
Hi. This is very helpful! I have adenomyosis which is very debilitating. Other than hysterectomy, the only other option seems to be the Mirena. I've tried the POP Pill but stopped a few days ago (nausea & bowel problems)so am reluctant to try another synthetic hormone. I also have scoliosis and depressed sternum and was very bendy as a kid and my son has severe JHS so I'll be thinking very carefully about the mirena.
I have had hip pain for many years but has been worse lately - might be the pill?! Did anyone experience loose bowel with progesterone? I've often wondered if bowels and jhs are connected...
Catlou, you are so right when you say....TRUST your own judgement you know your own body best. Really interesting thread and so sorry to hear about your situation. For what it's worth I think you're doing the right thing by arming yourself with information. Believe in yourself and trust your instincts.
Look into Ehlers Dammers syndrome as well. Doctors don't know much, if anything, about it. The mutation or polymorphism of the MTHFR gene has been suggested as one of the causes along with other mutations connected to methylation. MTHFR is involved in the metabolism of folate and folic acid. If this is impaired in some way then you will be deficient in folate. This can be corrected by taking a usable form of folate. It's a complicated subject and doctors will know zero about this. A good naturopath would be better. You might find this link of interest but please recognise that I have no idea if you have EDS but it is a hypermobile condition. mthfrheds.com
MTHFR has also been implicated in fibromyalgia which you mention along with many other illnesses. I also believe that it plays a role in endometriosis if MTHFR polymorphism is present. Mutations are called polymorphisms and these can occur during our lifetime as a result of lifestyle, environment etc. MTHFR polymorphisms are also strongly linked with breast cancer. I was diagnosed with breast cancer earlier this summer but I'm doing fine. I also have hypermobile tendencies but I'm not super bendy! Some of my nephews are very bendy. Until now I've been too scared to get tested for MTHFR but I will do it soon. Getting it done by a company in California called 23andme but it will map my whole DNA and there will be a lot of info to decipher.
Look into bone broth to help you with collagen. The only trouble with this is that strengthening collagen with bone broth might exacerbate endo but I'm not sure. The reason I think this is because endo adhesions must surely be formed of collagen? But in the short term this might help you with your floppiness and joint problems. I bought Great Lakes gelatin. It's expensive but the best on the market. I need to do more research on what it would do for endo. The reason I got it is because it helps the body deal with excess oestrogen.
This is a really interesting topic- thanks.I have been on depo provera for many years and have developed sacro illeac joint pain,feelings of my lower back clicking out of place then going into spasm,and also with knee cap which seens to click out when I kneel down.I had no idea this could be linked to progesterone! I did have physio for it and was encouraged to do it long term,but alas haven't!
Thankyou so much for this info, I have fibromyalgia and am hyper mobile. I also suffer from anxiety and depression, all my conditions have been worse from bring on this pill. I don't want to take it anymore. I am being investigated for suspected arthritis.
I'm going to the GP his week am going to insist coming off it.
I had a 13cm endometromia removed last yr and another one had grown in the same ovary while being in this pill. It hasn't gig as big but I'm not convinced cerazette us all it's cracked up to be. The gynae has mentioned the mirena coil which is totally unsuitable god me due to the possible side effects. This pill has caused me nothing but trouble since I was put on it.
Hi Catlou, you are so RIGHT about Cerazette ..Past one 1-2 years, I have been going though worst time of my life due to cerazzette. I've been having Endo for more than 20 years now . I had tried every treatment possible be it herbal, traditional, Chinese but nothing worked . I suffered from severe period pain and even worst ovulation pain and given painkiller injections every month for it. Due to this , I had suffered lap surgeries , ectopic pregnancies along the way. I wasn't able to hold my pregnancies and have no kids at the moment . I was prescribed Cerazzette by a gynae claiming it was new in the market 2 years ago. I felt good taking it in the beginning as it took away all my cramps and pains . I felt really good . But it was short lived relief. I started having toe joint pain and radiating to the leg and before I knew I had full blown pelvic joint pain , hip joint and sacroiliac joint pain . ALL IN ONE !! that was awfully painful. Without suspecting Cerazzette was the one causing it, i continued to take it. I went to the orthopedic specialist and was given a steroid jab on the sacroiliac joint ..But the pain went on and gradually got worst till I wasn't able to sit in a car , sleep and sit or move much. IT was HURTING that much.. Again I sent to a Pain Management Specialist and this time I was given steroid injections for 12 joints , chemonucleoysis, facet joint jabs, lumbar sympathectomy and a sacral root block.. and also lots of morphine related pills . And my pain was still bad . And one day I went to the physiotherapist and she had asked me the entire details and when I told her , she said stop the Cerazzette at once . Only then I stopped it after taking it for a period of 1 1/2 yrs later. and the next day all my pain disappeared. But I still had feet joint pains and 6 months later , the sacroiliac joint pain flared again . And I'm in a limbo now.. So clueless on what to do next... still in pain and feeling really horrid.. I'm planning to write to the Cerazzette manufacturing company on this issue.. what is your suggestion ?
Hi there, so pleased I have read people's comments on this. I started mini pill end of September, at first everything was great. Over last few weeks I have had joint pain that started in my fingers, now my heal of my foot is painful and other joints sore. I thought it was start of arthritis but I'm only 44 and it seemed to come on quick. I had a thought it may be to do with hormones, but now I am going to stop taking pill from tomorrow and seeing my GP next week. Just hope joint pain stops. Thank you for your post about this as pharmacist said Cerazette did not cause these side effects.
Thank you so much for this info. It makes such a perfect sense now, it's unbelievable.
I don't normally participate in any forums but I just really wanted to share this.
A few weeks after I changed from cerazzete to micronor (because of irregular bleeding) and it seems like the 2 years of joint pain in knees, progressively getting worse, then also affecting wrists, fingers, hips and shoulders is coming to an end! And especially last few months of extreme fatigue, not being able to work and study normally.
Why is this not a common knowledge?
All my test for arthritis coming back normal. In fact, all of my tests coming back normal. Suspicion of hypermobility but not a clear diagnosis. An hour of intense interview with a rheumatology consultant, asking me all possible questions and he didn't even blink his eye when I told him I'm on mini pill!
I must have seen at least 8 different GPs over this time. Funnily enough, on many of those visits I was complaining about the side effects of mini pill but noone ever suggested that it may be linked.
You can also imagine I have read all possible information on the Internet about possible causes of joint pain, even the craziest and rarest ones. And not a slightest hint of this.
As the pain became to disappear so rapidly after I changed the pill, it really got me thinking and as I searched "mini pill and joint pain", that's the only relevant information that I found.
If this is a common problem than why noone knows about it?
This is really weird, I was put on cerezette about a year ago and like you my health deteriorated a lot since then, thankfully I wasn’t too keen on taking it and always took it at 2/3 months at a time and came off it for 2/3 months but I also have Endo and when I started getting more severe multiple joint pains the rheumatologist said I was hyper mobile and that could be the cause but also said to me that he believed that I also had fibromyalgia but wouldn’t diagnose me as he also had a theory that the pop pill was possibly having these side effects. I have always had some sort of joint pain since a very young age, but the pains I started getting since taking these pills is more severe. I get really bad pains in my hands and weakness due to the pain. The periods I didn’t take the pill I actually don’t remember much pain at all. I’m just really grateful I have my 1st Endo surgery on Tuesday 27th March 2018 and I’m hoping to not take the pills after this. X
I found the Mirena made my pelvic floor worse, and discharge all the time! I now take Norgeston and my pelvic floor feels loads better. I feel like there's loads of hormone released from mirena, and it weighs down on pelvic floor
Thank you for sharing your experience. I've just gone through the same issue. My joints have been much looser and I've acquired many injuries and joint pain since having the Mirena inserted. Has anything helped you since you've had it removed? I'm hoping to hear it got better with time.
Well, this is interesting.I've been having regular physio for a shoulder condition called supraspinatus tendinopathy. My physio announced at my first session with her, "Gosh, you're hypermobile! Super bendy ". So I'm told I need a stronger rotator cuff because of my hypermobile joints.
I recently started Cerazette, a progestin Pill for Endo and am having terrible pain flares at strange times related to the timing of when I've taken the drug.
I've also had an increase in my shoulder pain and in knee pain also.
Coincidence?
I've spoken with my GP and been advised to stop taking Cerazette for now until I have a response from my consultant, as we need to know more about the mechanism of what's going on.
I wish I had read this sooner! I know you have posted this 9 years ago though.
I took Cerazette reluctantly for 9 months, had night sweats, hot flushes and joint pain. Naturally the doctors said it was peri menopause, but as soon as I stopped might sweats and hot flushes no more.
Unfortunately I still have joint pain. I Rheumatologist said I am hyper mobile, I am 44 and no one has ever mention this to me before. I have been told the pain is in my head, which I really hope so, as I am concerned I have connective tissue disease.
I agree always go with your gut, I wanted to stop after 3 months and I really wish I had.
I don’t understand why these side defects are not communicated.
Thank you for the information and I hope you are well 🙏🏻
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Laproscopy and progesterone only pill? 
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