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Endometriosis UK
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please if anyone can help

Hi, everyone

I was just wondering if anyone could help i have a large list of health conditions and i am really struggling with a diagnosis. if anyone feels that there condition may be similar or may even know what this could possibly be i would be grateful. I do understand that i shouldn't just take the first bit of advice an act on the information but a bit of help would go along way :)

# I have just been diagnosed with endometriosis (even though i have had it for 16yrs) my bowels was stuck to my cervix and had to be removed, i had leisions, cysts and endo in the pouch of douglas

# I have severe problems with nerve pain/ pinches (some days i wake up in the middle of the night and i cant feel my legs they are numb my partner has to massage my legs and move them for me,

this also happens to my arms i get really bad pins and needles and then from the shoulder to my finger tips are numb

# My hands seize after i have been doing anything with my fingers for more than 20mins (but i can also wake up and they are seized) My ligaments in my fingers are already too short and my fingers are all crooked

# My joints are the worst i get stiff and my shoulders, knees, wrists, ankles, back fingers hips even my toes make sickening cracking noises.

# On my left hand side it feels like muscles get stuck under my rib and it hurts alot (this happens once twice a month)

# I constantly feel the need to urinate and i just let a dribble out even though it feels like im going to wet myself

# severe migranes

# My eyes i get this grey gunk that covers my eyes and i cant see properly until i pull it out - its like gunky string

# my body temp is all over the place, one minute im freezing cold the next i feel like a volcano its ridiculous

# the worst is when i get over heated, my body draines from head to toe in about 30 seconds, i can hear everybody but i cant talk i cannot move or give any response to my partner or son that im ok. i get this terrible sick feeling i start to shake and then slowly come out of this stupor, but i cant move for a few minutes after.

# i get really confused sometimes, stutter and cant find the right words for what i want to say

I know there is alot of symptoms and again i understand that not everybody is a doctor but please if anybody can shed any light i am all ears

29 Replies

also i am only 27, and in a wheelchair


Hi there, I'm so sorry to hear you are struggling with so many different issues. I think? I may have posted with you before?

The thing is lots of different illnesses or conditions can cause many of those symptoms, so it can be confusing. What specialists have you been referred to so far, and what tests have you had? I mean none endo related by the way. It sounds to me as though you need various investigations by both a neurologist and a rheumatologist. Also to be referred to a physiotherapist asap to work with you, to try and help with the difficulties you are having in the meantime.

Things can get better, you just need help - is your GP helpful / supportive? Take Care. :-)


Hi Arcadia-77

I was actually a professional carer about to do my nursing degree 6months ago and now my health conditions are getting so bad i cant look after myself.

There are so many other things i have missed out.

The thing is with these symptoms is i might only have the nerve pain for 2 days or a week or a month, or it could be the stiffness and joint pain or the muscle pain or it can be a mix of a couple of them. it may just be the left hand side or just the knees and shoulders. i have had loads of blood tests they are now saying my full blood count is abnormal and my white blood cells have always been low. they have done tests for inflammation but say it hasn't shown anything abnormal - but at the time it wasn't my joints playing up. Naproxine witch they give for inflammation really does benefit me and confused the doctor (she has just left - has taken me 16yrs to find a doctor who will listen to me - she got my endo appointments and pain management started but left last week) i am at my wits end :( x


What a nightmare :-( sounds as though things have changed really quickly for you. You really need some answers, as it must be very distressing too.

I'm really glad you have been referred to a rheumatologist. I would still push to see a neurologist as well though, as they deal with different areas that can cause those types of symptoms, and it's likely both would do different types of tests. You "may" have to wait a while for a neurologist, but you should definitely be able to get a referral to one. Assuming you are in the UK, if you can afford a private consultation to speed things up - it would probably be about £250 you can usually see them in a week or two then. You can then ask to be referred back on to the NHS for all the tests, and any treatment.

Although you have already had blood tests etc GP's are just the "gatekeepers" for other specialists, so they can't possibly know everything - needs to be a specialised consultant. Sorry to hear the good Doctor left too, just typical!


i do have an appointment with a rhumertologist next month as a neurologist is apparently hard to get an appointment with x


i am in the uk, dorset. how would i find and get a specialist for that can i just research the internet and phone up do you know??? x


If you are considering a private consultation, (I do think it would be really a good idea for you, only IF you can afford it) look up the local private hospitals in your area and the Neurologists on their consultants list and study their profiles. Hard to advise other than that really because they can all have different neuro illnesses they specialise in more, you just need someone with as much all round knowledge and experience as possible.

I hope some of the comments on here haven't made you worry more, don't jump to any conclusions yet, lots of illnesses can cause those symptoms even things like ME/CFS and Fibromyalgia in some cases - which most people don't expect. Just take one day at a time for now, but try and and focus on getting to see a neurologist asap and getting everything investigated by the rheumatologist too. If you don't feel well enough, get a friend or family member to ring up your GP surgery and keep telling them / hassling them about it all, same if you can't afford private just keep at them - you should be getting an urgent referral really. Sometimes no matter how bad things are we can downplay our symptoms, you need to tell them exactly how bad you are feeling, and how much things have changed so rapidly.

I agree with "Mabes" comments about the bladder symptoms.

I wouldn't worry about candida for now, it can be a contentious diagnosis, there's no way that could be causing most of those symptoms!

Please keep us all posted, feel free to PM me if I can help - I do know about these things. :-)

1 like

Firstly has a full thyroid function test been done.?

Has vit B12 been tested because pins and needles are often low B12

have you considered Candida infection

do you use aluminium or non stick cookware or slow cooker,electric steamer ,george foreman type grill , foil etc

heat aluminium and a form of radiation goes through everything and affects the food and you especially gut , joints and brain


thyroid has always come back as ok

b12 i am low on

candida? do you mean like thrush i suffer all the time

i used to use slow cooker but have recently became a vegetarian well 7 months ago yes my partner always uses foil to line trays and non stick pans but how would this effect me? x


Wow that's a big list! I really feel for you. Not knowing is sometimes worse than dealing with the truth. Your overactive imagination suddenly kicks in and you fear the worst, for everything :( have you explained all of this to a gp? Go armed with a list, examples and times, dates etc...of these things happening. I call it my evidence list. It's ridiculous I know but at least then I have ammo for when the doctor asks me to try X Y Z then go back again.


Oh my that sounds a lot like my symptoms. I have weird feelings down my arms, my tongue even feels weird, my eyes when they are shut seem like waves going across, I get the shakes, the antidepressants seem like they make the shakes worse and am having bad pain all around pelvic area and lower back. I had laporscopy a few years back and am pretty sure the endo is back. The pain is unbearable:( uggh!


Hi have you been diagnosed with anything else? Did you have Endo in the pouch of Douglas? X


Do you think you may have MS? It sounds a lot like the beginning stages of MS, especially the legs and the pins and needles feeling in the fingers-- My aunt was diagnosed like twenty years ago and this sounds a lot like what I've read about it.


i too experience the pins and needles in my hands and legs similar to how u describe. it was actually my optician that referred me as i had it in my face too along with other symptoms. they suspected ms or hnpp. i was told by one doc that it was hnpp but another doc said they couldnt conclude either. i was put on amitriptylene to try to suppress things but my symptoms by this time, although still there, had improved so didnt take them. think i saw both neurology and rheumatology. so unfortunately im still none the wiser. hope u find some answers soon x


Hi thank you for your reply, what is hnpp? X


hereditary neuropathy to pressure palsy. i had to have a nerve conduction study done.


Hey, I get some pins and needles and have poor circulation but nothing like you describe. I'd agree with the advice here - show your gp the symptom list (if you haven't already). Seeing a rheumatologist and definitely a neurologist asap would definitely be a good idea. My friend had numbness/pins and needles/eyesight issues. Diagnosed with relapsing remitting ms. She has changed her lifestyle and is on beta interferon injections weekly - now doing better than ever!

It can be normal to feel hot and cold with endo and maybe some problems with bladder. But really from what you've said from physical and cognitive problems you definitely need to see a neurologist.


To me it sounds like your symptoms fit with MS unfortunately and I really hope I'm wrong. However the chest pain sounds like an MS hug which is your muscles spasming, lots of neuropathic symptoms such as pins and needles. MS also causes urinary problems and temperature problems. The joint pain also could be a form of arthritis, get your doctor to do a CRP, ESR, anti CCP and RF blood test. I would say a referral to a neurologist is definitely a must, possibly urgently if you feel you are deteriorating rapidly and MRI scan to help with diagnosis or rule it out.

I wish you so much luck with your problems and hope you find the answers you need!

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Hi thank you for your reply, could you tell me what all the blood tests stand for so I can check list if I've already had them done x


CRP, ESR, anti CCP and RF - I know three of them:

C Reactive Protein

Erythro Sedimentation Rate

Rheumatoid Factor

If you google CCP blood test it will tell you what that one is, I think.


C reactive protein and erythrocyte sedimentation rate are measures of inflammation. Rheumatoid factor and anti cyclic citrullinated protein tests are used in the aid of diagnosis of rheumatoid arthritis

1 like

Has it become worse since you became a vegetarian? If you are low on B12, it won't help. Have you looked at pernicious anaemia? Low B12 causes all manner of nerve problems and other symptoms. Slow cooked food (if you get a slow cooker with a ceramic and not non-stick inner crock pot thing is very good for you).

Also when doctors say thyroid results are okay, sometimes they are not ideal for us or may show a developing problem. If you get a copy of your results for previous thyroid tests (including ranges) and post them on Thyroid UK (also on HealthUnlocked) then the members on there can advise you if they might be indicating a thyroid problem. Symptoms like the over heating, the pain in joints, confusion etc could be thyroid. Sometimes people have both thyroid and B12 issues so they get a mixed bunch of symptoms and then add in endometriosis and it gets very confusing!

The urination - bearing in mind the endometriosis has this been investigated in that context? It could be endometriosis or interstitial cystitis or something along those lines. I have/had endometriosis by my bladder (t was excised) and I have symptoms where sporadically (around ovulation and period mostly) I will feel the need to go (feels to me full & should be based upon when last went) and when I go, it takes time to start, there is very weak flow and I don't feel as if I have totally emptied. It feels like some form of urinary retention. However, it is not all the time, just spasmodic.

I agree with others that a visit to a neurologist would be warranted with your symptoms. You can ask your GP to refer you to one privately if you can afford it. Or if thy won't you can see a private GP and ask for a referral. The neurologist would be able to rule out or in MS ans things like peripheral neuropathy. The rheumatologist you are seeing should be able to look at causes of your stiffness and joint pains etc such as rheumatoid arthritis.


Thank you for all your reply's

6 months ago i was a professional carer working towards doing my nursing degree.

I have alot of experience with MS and at the beginning i thought it was looking like MS. after more research and talking to more people i think it may be E.D.S Ehlors danlos syndrome (i think thats how it is spelt)

Just want to thank everyone that has commented now i can go back to the doctors armed :) i do already keep a pain diary and i do have a very supportive partner (who was a carer too) it is just so difficult not knowing :/

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Glad to hear you partner is really supportive! 😊 Just something to bear in mind "IF!" it does turn out that you have EDS or another type of hypermobility. Hormones can really affect the symptoms of HM for some women too, might be a good idea to keep a diary to see if you notice a cyclical pattern with some of the problems inc joint issues. If you haven't come across it, have a look at this website which is good, this page explains more about the hormone connection. hypermobility.org/help-advi...

You haven't been put on any of the GnRH drugs like Prostap, Zoladex, Synarel etc? Or are you on Depo Shot or progesterone only pill?

1 like

Hi yes I am on Desogestrel which is the pop pill and I have been put on Norethisterone - since I have been on this past 2weeks all symptoms have got alot worse


That's really interesting! :-) Please have a chat with your GP, but I would really consider coming off them both for now to be honest. Oestrogen can help stabilise things for women with HM it explains it in that link, they have a forum on there too, many members share their experiences with progesterone contraceptives. There is quite a broad spectrum of HM too.


Hope you get sorted a lot of think going on I go to the toilet a lot go hot and cold but don't think I am going thought the change I am lot older then you get pins and needles in my arms and hand go dead and legs I am going to have a opp on both of my hands its carpel tunnel but I had a stroke last year so got lots of pains I've got APS too but I am getting there now hope you do too Hun xx


Hi what Is APS. Glad too hear your getting the help you need 😊 x


Hi C

You clearly do need things ruling out such as MS or RA and these can be tested for so that will give you definitive answers to those possibilities. But if they come back clear then the symptoms that endo can cause either directly or indirectly shouldn't be underestimated. My problems were very diverse and essentially I was unable to function. These were all caused by allergy to oestrogen (oestradiol) which is the hormone that drives endo and allergy to it is now being suggested as implicated with endo and autoimmune diseases and thought to be why they affect women so much more than men. It turns out that the symptoms of ME/CFS are pretty much exactly the same as those reported for chemical allergy and ME/CFS is now formally associated with endo and autoimmunity. These syndromes are diagnosed based on symptoms - there is no specific test that can be done - and for years I have believed that there is no such thing as these syndromes and that people diagnosed with them are actually suffering from chemical allergy. That is just my opinion. Chemical allergy is now being associated with autoimmunity.

Basically if you have chemical allergy then the allergen works on your brain and so can cause any neurological symptom. This is the basis of chemical warfare at the end of the day. Our own hormones are chemicals and oestradiol is likely to be the strongest steroid a women ever encounters. A woman with endo may be sensitive to any number of chemical allergens that could cause these symptoms. The effect of thrush (candida albicans) shouldn't be underestimated either and in the presence of allergies has been found to multiply their effects many times over so thrush should always be controlled in women with endo since it is an allergic condition as confirmed by the antibodies identified. These are the symptoms reported for chemical allergy and the list isn't necessarily complete:


Neurological symptoms (nerve pain, pins and needles feelings, weakness, trembling, restless leg syndrome)

Abnormally acute sense of smell



Visual disturbances (blurring, halo effect, inability to focus)


Anxiety, panic or anger





Soppression of immune symptom

Sleep disturbance

Mental confusion

Stupor (brain fog)

Difficulty concentrating



Intolerance to heat or cold



Stuffy head or respiratory congestion

Breathing difficulties/asthma


Dry, irritated/itchy eyes

Dry mouth


Sore throat

Memory problems

Changes in heart rhythm

Chest pain

Muscle and joint pain and/or stiffness


IBS symptoms (abdominal pain, nausea, bloating, gas, diarrhoea, constipation, indigestion. heartburn)

Bladder problems such as overactive bladder

Skin irritation, rash or hives

Mood changes

Sensitivity to natural plant fragrance or natural pine terpenes


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