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 been through.
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 suited 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 side effects Headaches, Nausea etc. etc. But what happened took me completely by surprise. I only took it for 5-6 weeks but during that time my health deteriorated rapidly and I felt huge physical changes in my body. A strange sensation as if the stuffing had come out of my joints which made me feel lax all over, and considerably weaker and in much more pain because of this.
I went back to the Doctor after about 3 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 and things 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 etc.
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 an illness 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.
So 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 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 pil and Oestrogen is supposed to be the Hormone that helps laxity by stabilising things but for me it hasn't made any difference and the damage has done stayed with me. This is also frustrating as it seems best to avoid Oestrogen for Endo purposes but I now have no choice.
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 couple 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.