Endometriosis and severe mobility issues

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

12 Replies

  • 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

  • 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

  • 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!

  • Hi Nicky - endometriosis is an autoimmune disease that involves many as yet poorly understood inappropriate immune responses both involving the immune system itself and the endocrine system. One characteristic of endo is chemical allergy where the immune system reacts to low levels of chemicals that should be normally tolerated as if they were poisons. This includes allergy to our own hormones and can produce just about any symptom, including a vast array of neurological ones but also joint inflammation has been found to occur too. Since people with autoimmune diseases can sometimes develop others it might be worth having tests for rheumatoid arthritis at some point as this is an inflammatory disease too, but for now I am concerned that your 'suspected' endo has been left so long. I am so sorry that you have been in this position so long.

    You are finally having a lap but be aware that this will be carried out by a general obstetrician and will be diagnostic. They may burn off any superficial endo but deeper endo may be missed. For instance it sounds like you may have endo in a place called the Pouch of Douglas that should be dealt with by a skilled specialist in endo. So if your symptoms continue once you have recovered I suggest you learn all you can and get a referral to an endo centre for any continuing treatment you need. Click on my name and read my post on POD endo to see what you identify with and on how to find a specialist should you need one in future. I hope it goes well and see this as the beginning of taking charge of your health x.

  • 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 .. :(

  • 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?


  • For the benefit of every one else I wish to follow this through.

    Endometriosis is a systemic autoimmune disease that does not just affect the reproductive system; it affects the immune and endocrine systems and also the gastrointestinal system. This is established. The gynaecological manifestations cannot be addressed without considering the autoimmune involvement that has explained so much.

    I have not stated that all of these symptoms in the case in question are related to endometriosis; I have suggested that they might be and I have already suggested a follow up with a rheumatologist should it be felt appropriate. But since endometriosis can cause all of the symptoms mentioned and endometriosis is the condition currently under consideration I do not consider it irresponsible to first consider this as the possible cause. I would be inclined to think it irresponsible not to.

    Most endo sufferers are familiar with chronic fatigue and many other 'unexplained' symptoms that are so often dismissed by their doctors as in their head and it can only be helpful to such women to find an explanation for these. Chronic fatigue syndrome (ME) is often diagnosed alongside autoimmune diseases, to include endometriosis, and is now classified as 'associated' with autoimmunity. It cannot be formally classified as such since these 'syndromes' are based on a collection of symptoms that have no identifiable underlying disease process. There are many references available to the possible causes and symptoms of chronic fatigue syndrome but for convenience the NHS states possible causes based on research findings as 'problems with the immune system' and 'hormone imbalance' both of which are involved with endo. They list documented symptoms as:

    Fatigue, muscular pain, joint pain, severe headaches, poor short-term memory and concentration, difficulty organising thoughts and finding the right words ("brain fog"), dizziness, balance problems, painful lymph nodes (small glands of the immune system), stomach pain and other problems similar to irritable bowel syndrome, such as bloating, constipation, diarrhoea and nausea, sore throat, sleeping problems, such as insomnia and feeling that sleep isn't refreshing, sensitivity or intolerance to light, loud noise, alcohol and certain foods, psychological difficulties, such as depression, irritability and panic attacks, excess sweating and difficulty controlling body temperature...the list goes on.

    There are also many references to chemical sensitivity, which is referred to as 'multiple chemical sensitivity' or MCS but can involve from one chemical to many, and it is acknowledged that this is often involved with autoimmunity, including endometriosis, with involvement of auto-allergy to our own hormones. Since the brain is targeted the symptoms can be extensive throughout many body systems and are documented to include nausea, fatigue, vertigo/dizziness, headaches, "brain fog" (short-term memory problems, difficulty concentrating), visual disturbances (blurring, halo effect, inability to focus), neurological symptoms (nerve pain, pins and needles feelings, weakness, trembling, restless leg syndrome), abnormally acute sense of smell (hyperosmia), muscle pain, pain/inflammation of joints, stiffness, tendonitis, seizures, extreme anxiety, panic and/or anger, sleep disturbance, suppression of immune system, digestive difficulties, indigestion/heartburn, vomiting, diarrhea, sensitivity to natural plant fragrance or natural pine terpenes, dry mouth, dry eyes, an overactive bladder...the list goes on.

    It can quickly be seen that in essence these lists are pretty much the same and it is my belief that CFS/ME will be found to not exist and be due to chemical allergy, especially as both conditions are usually associated with the same diseases if and when finally diagnosed. This is just my opinion based on extensive research. It is no coincidence either that these endless lists of symptoms will be familiar to most of us on inserts from medication packets when describing possible 'adverse side effects' that indicate chemical allergy...

    Clearly everyone won't experience all of these symptoms as it will depend on their particular immune and endocrine status, but the point I make is that they should be aware of them when there is apparently no other explanation. In my own case I experienced every one of these symptoms other than an actual seizure and was sent to neurologists for numerous brain MRI scans, rheumatologists, psychiatrists, ENT consultants to be written off as psychologically unstable and left 20 years without a diagnosis. I was ultimately diagnosed with endometriosis and severe allergy to oestradiol (both my own and in HRT), the oestrogen involved in endometriosis, and to suggest that it is irresponsible to wish to bring attention to this hugely significant aspect of endometriosis to others in the hope of preventing them from going through what I did is very worrying.

    It is hard for me to grasp why there should be such resistance on a facebook group to the many recent findings that have classed endo as autoimmune, involving such aspects as pro-inflammatory cytokines such as interleukins, altered T and B lymphocyte activity to include autoantibodies, natural killer cells, altered apoptosis, increased aromatase, endocrine allergy and many other fulfilled 'requirements' for the disease to be autoimmune. To do so and to disregard all these immune symptoms is to shut the door on any hope of finding the cause and developing effective treatments; thankfully those holding these views represent a minority and won't adversely impact on the crucial research now underway for the benefit of future generations of women at risk of endo.

  • 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

  • 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

  • Hi - sorry I inadvertently replied to Nicky but hope my reply might have been helpful to her too. The facebook group someone has referred you to on the whole does not accept that endo is an autoimmune disease although it has been formally confirmed after having been suspected for years and all those symptoms I mentioned and many more besides can be present with endo. My knees used to swell so much sometimes that the skin was so tight that it hurt and I couldn't bend them at all. But the features of your symptoms that have raised my suspicions are that they first came and went with your monthly cycle, you have had untreated suspected endo for 16 years and the left leg is involved (the usual one with POD endo) and seems to start with a sense of a nerve being pinched which would be typical. You may need other investigations doing but severe endo in the rectovaginal area can cause considerable disability after being left so long if this turns out to be the case and since you are having a lap tomorrow I didn't feel it appropriate to worry you about other things when hopefully tomorrow you will have some answers. If not then you can ask for other investigations but endo is the current consideration. I will reply to your private message directly. x

  • 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

  • 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!

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