endometriosis or arthritis

[hellybaybee]

Hi all,

just to tell you a little something about me so that you understand why I’m asking this - I have pretty poor health: I have hypothyroidism, endometriosis, adenomyosis and my vitamin levels tend to be low so probably some difficulty with absorption - I supplement my vitamin d (20000 in weekly) and I have monthly methylcoblamin injections. I have grinding pain in my knees which is worse at some point than others and I get hip pain - at the moment, it’s chronic, I’m 9 days from having my period and last night I went to bed early only to wake up at 10:30 due to the pain (I’ve also started to get mittleschmerz depending on which side I’m ovulating and I had a touch of that too). I had my endometriosis removed in 2016 and I do think it’s come back a little but nowhere near the pain I was having before. I went to the doctor a few years back about my hips and my knees and they sent me to physio, I didn’t complete the course just because of the time off I was having but they’ve recommended that again and they talk about arthritis. I’ve always had the knee stuff, ever since I was 8 and I was told it was growing pains but hips has probably been about 7/8 years - I’ve never had it as bad as last night but I was running around a lot with work on that day. I know you can get osteoarthritis with hypothyroidism and I had a few fillings and lost a tooth before my vitamin deficiencies were picked up but I feel that it’s connected to endometriosis just because of when it comes. Just wondered what other people’s experiences of hip pain were so I can kind of try and figure out if it is that, when do you find it flares up?

[Purple_Badgers]

Hello! Not sure if I’m going to be of much help, but I have some parallels with you that are kind of interesting…

I’ve had noisy knees since primary school age too, which have always been more embarrassing than painful (e.g. when squatting down to lower shelves in the library.) Fast forward to around 2 years ago, after my endo had become really bad and I was recovering from an emergency op, my knees suddenly got much worse. Then I developed pain in all my other joints too.

I already had intense lower back/pelvis/hip/leg pain from endo, but now there was additional pain, stiffness, clicking and grinding noises from my hips. It can be worse if I have been sitting or standing too long, but also sore if I have tried to do too much (bending down and/or twisting).

With fibromyalgia as well, there is never a time when I haven’t got multiple body parts complaining. Since I’m in a chemical menopause now I don’t get cyclical pain, but I have DIE and adhesions which give me daily discomfort. I always have low iron and often get raised glands in my armpits as if I’m fighting off a massive infection, but nothing shows up on tests.

It does seem that endo sufferers often have other whole body/autoimmune type diseases too. So, that makes it tricky to say which disease is causing each particular symptom at any given time.

[Avourneen]

There is a link between having endo and having rheumatoid arthritis. It isn't fully understood but they are both caused by immune problems. Maybe it is worth seeing a specialist about that to see if that could be what it is. Very sorry to hear you are going through so much. Sorry I can't offer anything more useful. Good luck. xx

[Pengihen]

Endo and Hypermobility and hypermobile EDS (Ehlers-Danlos Syndrome) are co-travellers. If you were labelled as having ‘growing pains’ I’d say you likely fall on the Hypermobility spectrum. GPs have very poor awareness of this, you’d have to get to a rheumatologist who is aware for a diagnosis.

Quick edit to say that EDS would explain all your issues: joint pain, teeth, endo, malabsorption and yes, they flare up under the influence of hormones, some of them with estrogen, others with progesterone. If you keep an eye on it, you might notice your joints get worse post-ovulation and leading up to your period- this is because progesterone loosens our already loose EDS connective tissue.