Endometriosis and severe mobility issues

[reggaequeen]

Hi all,

I just wondered how common it is for Endo sufferers to also have inflammation of the joints? Some days I cannot get out of bed and my partner has to carry me to the toilet. I'm often tripping over my left foot as I walk because it dose's lift up when I think it has. It starts with what feels like a nerve pinch on my left buttock my hip then gradually becomes very stiff and it then escalates up to my lower back. I'm a domiciliary carer have recently had to give up my job as I kept collapsing, and currently selling my moped as I can no longer use it. To start with my muscles used to go very tight and after 3days it felt like they were all bruised and jellified and then came the stiffness, this used to last about 10/12 days on off every month. But now I rarely get more than 2days without the stiffness, is this common? And will it ever go away? I'm nearly 27 I've gone from running around every day with my son to barely making it to the toilet on time in 2years. (suspected endometriosis since 11/12 yrs old) x

[Nicky-G]

Sorry to hear how this is affecting you. You might be right. I have similar twangy hip, stiffness/ achy feeling in hips and lower back- nowhere near as bad a you seem to be experiencing it tho. For years put it down to overdoing it in the garden /old age (I'm 38!), but since my endo diagnosis and keeping a diary, the stiffness does seem to be cyclical, so perhaps hormone related. Perhaps lack of progesterone.

Whatever it is it certainly isn't normal for our age. I am sure it has something to do with endo being related to disorders of the immune system. Have you discussed these symptoms with a medical professional to make sure something else isn't going on too for you, sounds awful x

[reggaequeen in reply to Nicky-G]

Thank you for your reply Nicky,

I have recently found a very good Dr who seems to be very open minded (the only one that hasn't told me its all in my head I might add) but I very rarely get to see her she's prescribed 2x naproxine every day and was really annoyed that I hadn't had blood tests to see about inflammation, I'm always having bloods taken as my white blood cells are very low. I'm used to walking everywhere I can just about manage a half hr school run on a good day and I'm crawling up the stairs to my front door. I have been taking the progesterone pill but recently stopped as Drs are pushing me to have a baby before its too late so I've stopped. Drs refuge to believe me now it feels my whole life has been flipped upside down in the space of 7months my first laparoscopy is this weds x

[Nicky-G in reply to reggaequeen]

Good luck with your lap, I had my first last august, felt a bit sore, uncomfy afterwards, and a bit emotional for a couple of weeks, but it really does pass. I started natural progesterone after my lap, no pill or mirena, (or more babies, I had one despite stage 4!), each of which I have experienced pressure from doctors to try to fend off progression of symptoms.

The natural progesterone In theory may help with inflammation I've read, although too much can worsen joint hyper mobility symptoms if one has this condition ( about 40 % of girls apparently to some degree), which there have been some interesting posts on here about.

It would be interesting if your joint problems eased off a little now you are off the synthetic progesterone pill?!

Hope it goes well on Wednesday, and remember To take care of yourself afterwards, they might kick you out after a few hours, but your body will have been put through quite a bit, so don't expect too much of yourself!

[Jewel015]

Wow , not surprised at all , reading your symptoms and I had a hysterectomy in 2004 but my mistake was leaving the left ovary in place ... now I am still suffering in 2015 with the same symptoms. I am going to see the same Ob/gyn that did my surgery back in 1996. I believe I am suffering with Sciatica Endometriosis , I am also concerned about lung endo as well . I am 49 years old and no they suffering it seems never goes away ..

[Arcadia-77]

Sorry to hear you are struggling, have you actually consulted with a Neurologist about the mobility problems, stiffness and others issues?

We definitely should not be putting all those symptoms Lindle listed down to Endo, and it is irresponsible of her to suggest that. Lots of other conditions can cause them. It's really important to get anything else you have going on checked out too. It would also be useful to see a Rheumatologist as well.

Hope that your lap goes OK, I would strongly advise asking on the day for a colour copy of the photos they take during your lap. There is an excellent group on Facebook - EndoMetropolis that includes some of the worlds leading Endo Specialists. If you don't get much sense from your consultant about the findings, the experts on there can have a look at the photos and annotate them for you.

Are you in the UK btw?

m.facebook.com/groups/28907...

[reggaequeen]

Thank you everyone that replied,

There is so much that I never new was to do with the Endo, I'm learning more everytime I read.

I am in the UK, but no Dr seems to take any notice of me ive fought for 16yrs just to get to my 1st laparoscopy, and that was only because of 2paramedics that I've got here.

My joints feel like they are going to crumble, like the top of my back or my hips when I'm led down the weight of the top of my hip feels like its too heavy. Also I'm a uk size 6 and weigh about 8stone x

[reggaequeen in reply to reggaequeen]

Sorry my reply's are short, think I get too emotional, I have shut down and stopped talking to everyone because i want to try and focus what ever energy I have left on my son.

I haven't by no means given up I'm very strong but on the same hand its taken so long x

[Arcadia-77 in reply to reggaequeen]

Hi again reggaequeen! How are you and hope that your lap went ok? Let us know the results, and regardless of whether they found Endo or not please read my post above again and push your GP to refer you to both a Neurologist and a Rheumatologist. If they are not helping and supporting you correctly in that way despite the symptoms you have, either try another GP at the practice or change surgery. It sounds as though you have a lot going on and it's REALLY important to get things investigated from ALL angles. Take Care xx

[Dibblekins]

Hi reggaequeen

There is no doubt that endo. can affect all manner of various bodily functions and organs...However, your symptoms are worrisome and cannot - should not - be attributed to endo. until other things have been ruled out. I am particularly concerned by your mention of the drooping foot, amongst other things. You absolutely, definitively need to consult your GP as a matter of urgency, describing ALL of the symptoms you mention here. If I were in your position I would be requesting referrals to neurology and rheumatology. I would be wanting a range of blood tests carrying out, as well as scans of the affected areas. I take it all of your immunisations are up to date, aside from anything else? I do not wish to worry you - but having endo. absolutely does not preclude your having other, concurrent, problems - and you must not dismiss symptoms solely on the basis of having this one, particular (horrible) disease. Good luck, hunny...Please let us know how you get on!