Endometriosis UK
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Why don’t people believe your I’ll with Endermetriosis???

Hi, just wondered if anyone else found people don’t believe your I’ll. I’m still goin to work and to be honest I have no energy and I’m not sleeping as well as numerous other Symptoms. People make little remarks and they really hurt me. I’m a lot more sensitive I know that, but it’s like because I’m in work they think I’m 100% or forget that I’m poorly. I’m sure they think its like a cold and will disappear. I’m still waiting to have my opp and my symptoms are getting worse. I’m really trying to put a brave face on but all I want to do is break down and cry all the time 😂

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Yup I know exactly how you feel. Recently I had to admit defeat and go on sick leave for a bit, while I undergo investigations, because everything got far too much and my symptoms developed and got worse and I essentially burnt out! To be fair to work when they realised how bad it was they felt awful but that’s part of the problem isn’t it, I also feel that I have to put on a brave face because like most of us it effects us everyday all day most of the time and I don’t want to be a downer the whole time and complain. The flip side is everyone forgets we are ill or doesn’t believe it can ‘be that bad’ because we made it into work and are talking to them and even smiling sometimes. If only they knew what was going on inside! My pet peeve is also people treating it like it is a cold and something that will pass and get over, like well get better soon. Like 1 day of rest is going to fix my insides being a mess with an incurable disease 🙄. Sending love and hope your pain settles down a bit ❤️

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Hi Becca,

Thanks for your reply. Its nice that you understand. It’s horrible isn’t it. I had 2 days sick after my colonoscopy as it made my endo Alot worse. They were sympathetic then but it’s like because I’m not physically sick or have any cuts or bruises to show at present its all in my head. I know I’m not the happy girl I once was and that upsets me. My mood is really low and finding it hard to be happy with the pain and lack of energy I have. I can tell they think I’m just been misserable and moaning I’m tired all the time but they don’t see How much of an effort it is coming in to work. It’s a really busy time for us and I don’t want to let anyone down so I’m makin an effort to keep goin in. I’ve ended up putting holiday days in just so I can do abit of Xmas shopping which is tiring for me now. Also to rest up and have abit more energy to go on some xmas parties. They then questioned why I booked holidays If I have nothing special planned. I really wanted to shout out because I feel that rubbish and you don’t believe me. How are you now? Are u back at work? Xxx

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I understand exactly how you feel! But similarly to what Lilloise is saying I have learnt the hard way that you have to open up and tell them and then take time for yourself. The hardest part I found was actually admitting I couldn’t do it to myself, and that I am not the same carefree, happy, work all hours of the day person I was even just a few years ago. Adjusting to our new ‘normal’ isn’t easy for us or the people closest to us.

It was also super busy for us at work too and I just kept pushing myself so I wouldn’t ‘let the team down’. What that has done now is I completely burnt out and made everything worse and I am still not back to work. Had a brain mri this weak to figure out why I have muscle weakness and pain in all my nerves.

It’s so cliche but put yourself first and take some time! And make allowances, I am having trouble getting out and doing christmas shopping so now amazon and etsy are my best friends this year ha! I hope you both feel better soon ❤️

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Ohh gosh I’m sorry to hear you have had an mri this wk. Did it go ok? Will you get your results soon? I really wish we didn’t all have to go through all of this. I’ve definitely become more selfish which isn’t me at all but I’ve had no choice but to sometimes say no to things I’d do just to please others. I really hope your results come back ok and you start to feel a little better soon xxx

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Yeh it went fine thanks, as I imagine you remember it’s the mysterious illness part that is the worst, not have a diagnosis. Although on the other side you end up with a disease no one has ever heard off and so you get no support🙄Just want to know if it’s somehow endo related or something else. Thanks for the support ❤️

Unfortunately you have to be selfish because you are the one that feels the after effects of pushing yourself too hard! I found myself trying to suggest more evenings in with friends with cups of tea, pjs and food, so that way I wasn’t isolating myself and could have company but I can still wear comfy clothes and have my hot water bottle near by? Although I still have some way to go to make them fully understand but baby steps I suppose. Are you waiting for an opp as well I saw in the comment below? Best of luck with that! xxx

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Well good luck with the results. Have you had a lap done previously?

Yes iive had numerous tests and next stop is my lap. I’ve got my consultation on Tuesday. They found on my mri and colonoscopy that my suspected endo has spread to my bowel so I need two surgeons for the opp. I’ve had it for 5 years that I know off from symptoms but the first mention of endo was July this year and it’s just gotten worse x

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Yes I had 2 laps done last year. The first in january by a less than useful Dr that saw a bit of endo scarring, did nothing about it and said it had nothing to do with my pain and was irrelevant. To then finally get another lap in august after medically induced menopause and find the other side had loads of endo that had been settled for a while and she just hadn’t bothered to look 🙄. It was my biggest reminder that it doesn’t matter how many degrees these Drs have, we know our bodies the best and know which symptoms matter most. And because we are at such loose ends are actually more of an expert in some areas than they are because none of the ones I saw were specialised in endo, I now know that is an issue with general gynaecologists.

As awful as that sounds at least they know roughly where they are going and are prepared for it, that is really good! Better that than they panic and have to call in another surgeon or sew you back up and do it another day when they are more prepared! Is it your first lap? Prepare for the shoulder tip pain. Because they fill your stomach up with gas to see everything it quite often leads to shoulder tip pain caused by irritating the nerve below the diaphragm (I believe). So many recommend lots of peppermint tea to pass the gas as fast as you can 🙈😂.

Sounds like you have had a horrible time, I hope they fix it xxx

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Ohh bless you, you snd like you have had quite the journey with different doctors not been so great. I really hope your on route to getting sorted soon.

Yes I’m glad I’m having both doctors there together as I’ve read on here some people having a lap and then been sent for further tests like an mri scan afterwards x

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Wow just reading what you said there how you felt after your colonoscopy I had one Monday was in agony couple hours later for about 3 days I thought I was been stupid as that’s how people made me feel but I knew something wasn’t right I’ve not yet been diagnosed fully although been trying for 4 years but know I have Endo and it’s getting worse as in pain every single day

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Hi,

Yes I choose to stay awake for my colonoscopy as id had one b4 and was ok with gas and air. This time they found polyps and removed them. But I cried with pain when it hit the spot of my endo. Since then my symptoms haven’t gotten worse. It’s as though it’s irrited my endo. Hope you feel better soon xx

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Hello Swats,

One tip re. holidays, guess what? what you do in your free time is nobody's business but yours. First of all, you deserve some time off, like any other hard worker, even more when you are battling such a punishing condition and still working! Secondly, what may sound like "nothing special" to some people may mean a very exciting or "great deal" to others = You. Don't feel like you really need to explain all your personal plans to work colleagues, certain friends or acquaintances. You can still give them a very diplomatic answer and keep a healthy relationship but sometimes boundaries are required in order to do so.

I think keeping a few days aside to do your Xmas planning/shopping/activities is an excellent idea and shows being well-organised. This itself is worthy of merit.

Xmas is not always the "happy/relaxing time" it gets sold as, it can be exhausting and stressful and/or emotional, depending on each individual's case. Some people just need to be more open-minded about the subject :-)

We are proud of you! x

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Thank you for your wise words popetta. It doesn’t help I’m more emotional at the minute and everything upsets me. They don’t realise that going shopping is hard work at present and I tire easily. I’m normally such an active girl and I’m gutted I’m held back by this horrible disease. I hope your doing ok yourself xxx

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Hello Becca, this exactly what has and continues to happen to me. What's even more irritating is that I just discovered that some of the test results for procedures I have undergone, haven't even been shared with my GP and they revealed important facts!! They simply wrote a letter confirming tests had been carried out and did not reveal anything concerning or unusual. I had evidence of a ruptured cyst on my left ovary (for crying out loud!) something I had to suffer all on my own without even knowing I had a cyst in first place.

Needless to stay I'm still fighting my battle and will carry on even if it kills me. At least I'd have no regrets of not trying.

Chin up!

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I can relate to this so much! I'm still waiting for an official diagnosis but I feel the same - am still going to work but have realised I need to make some changes because it's just too mentally exhausting feeling ill all the time at work. Because people see you looking normal they just don't realise how bad it is. I've learned I've got to be more open with people even if I find that hard because if they just don't really realise they won't be able to help. It's only recently I've got the confidence (or desperate enough!) to start talking to people at work properly about my health problems and explaining how it actually affects me day to day. It's helped a lot and I've found people are loads more helpful and understanding once I've actually opened up to them a bit more. I've even had to do this with close friends who felt really bad once they realised how isolated I'd felt. It also helps talking to other people with long term health problems who understand the challenges we face. It's ok and normal to feel the way you feel, just make sure you keep talking and are as honest as you can be xxx

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Thanks for your reply. Sorry to hear your having a tough time too. I’ve opened up a lot but they forget quickly and they just think I moan and am miserable. You would think they would realise that’s not the girl I once was and it’s because I’m I’ll but no. I am really thinking now if I’m having a tough day to phone I’m sick and not pretend to be strong wen I’m dying inside. You don’t get any better thought of and people go off sick for a silly cold. Just wish there was something to help with my energy and help me sleep as that’s making me feel worse. I’m glad you have found some people to talk to at work. Have you got suspected endermetriosis? I’m back at hospital next wk and hopin to get my date for my opp then 🤞 xxx

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Yeah, I think you're right that if you're not well enough you need to just take the time off. I took two days off recently and it felt like a massive deal to me to pluck up the courage to do it but it was good because it triggered me being a lot more clear with work about what I can realistically manage. I'm sorry your colleagues aren't that supportive. Bottom line is they can't relate so they don't understand what it's truly like. I guess that's why sites like this are so important. Yes I have suspected endo but I have a gut feeling they will say at the lap that they didn't find anything and I will be back to square one! I hope you're able to get the treatment you need and that something works for you xx

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Luckily my mum and Dad are very supportive and a few of my friends understand. I admit it’s been an eye opener for which friends stick around in tough times too. This site is very helpful, and it’s nice to know everyone is very supportive and understands the journey and pain we are all living through. I find I’m on here more than Facebook these days. Have you got a date for your lap? I’d have mine over xmas if they offered it me. X

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You're so right! I've only just joined. Yep it's mid jan so just got to push past Christmas really x

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I’m sure it will soon be here in no time for you. Hope it all goes well xxx

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Lilloise do you have a gynaecologist who deals with endo a lot for your lap? Because my first lap was a disaster and didn’t come to anything and I felt like I was back to square 1 too but I had to keep pushing and I was right I did have endo and they found it in the second lap with a different dr. Part of my problem was that it was a surgeon assigned to me after I was an inpatient after a&e but by voicing all your concerns and talking to the dr before hand they should know what they are looking for! Trust your body you know it better than them, and I hope you get some answers soon! 🤞🏻

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I definitely can relate from all y’all reply’s

I just discovered that I too may have endometriosis. And if it wasn’t from me googling, I would have never suspected that I may have it. I too had to stop working cause the pain is so bad. I tried a couple of times to try to work but the pain was so bad I couldn’t make it and had to leave. My coworkers know that something must be really wrong because I never miss days like this. I too haven’t been diagnosed but I have all the symptoms. I had an endoscopy done Tuesday that revealed I have gastritis but my GI has to do an biopsy to figure out what caused the gastritis. Because my H Pylori test came back neg. I believe it’s from the endometriosis. I do have an appointment with my GYN to see if she can get me in for an hysterectomy next month. Now I’m on my cycle and the pain is worse.

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Hi Sway72,

Sorry you are having such a hard time it truly is awful! Sorry to ask but is there other reasons why you want to have a hysterectomy or is it because of the suspected endo pain? I only ask because it is a bit of a myth that a hysterectomy will solve endometriosis and some women still suffer from endo pain after a hysterectomy, so I would hate to think that that was the only reason you were wanting one?

Some treatments I had was medically induced menopause when they couldn’t decide if I was meant for the gynaecologists or gastro. It helped the pain because it essentially switched off my hormones and thus confirmed to them it was a gyny problem. I have also been on pregabalin for pain, which worked better than any other pain medication. Hope you get some answers soon! x

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I have heavy periods and my uterine lining is 18-20mm thick. And I have bladder pain, suspecting it’s from the Endo. And I’m just afraid if they remove all the scar tissue and not take my uterus that it will come back

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Aw totally fair enough! That is horrific you poor thing❤️Sending lots of best wishes your way! It’s awful the amount of pain we endure for such a common illness that gets barely any recognition or research. Hold in there

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Thank you and the same to you as well😊

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Hi Sway72

Sorry to hear your not feelin so good and your having to take time off work. It’s not nice Is it. I really hope you get some answers soon and hope the pain eases for you xxx

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Hi,

I've been on the receiving end of this.

I had my laproscopy and was diagnosed in September 2016. I caught c.diff while I was in hospital which meant I was highly contagious. While I was contagious the doctors found that I had blood in my urine but couldn't do anything about it then. (The hospitals didn't want me attending because of being contagious) they finally got to look into it and it's still on going at the moment.

While all of this was going on in kept trying to get into work and had several unsuccessful phased returns. On my last one I was met by a cold shoulder by most of my colleagues workers. I was also belittled and on one occasion told to shut up.

Ever time I call to speak to my manager and someone else in my team answers they are rude to me. I think that in my absence they've had a good chin wag about me. A few of my colleagues were close friends of mine before I came ill and now they can't be bothered.

It's frustrating for me as they know what's wrong with me but I don't think they realise how bad I've been over the last year. I'm dreading going back into the office with how they've all been towards me.

The management have been pretty good over it all but I've given them a full break down of my symptoms and how I've been. When I did go back and was ill I was told not to come in the next day or go home.

X

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Im so sorry to hear that😔. My goodness you have had an ordeal. Yes, they really don’t know how horrendous endometriosis can be. But one coworker that works with me knows exactly how I feel. Cause she had it also. So I’m hoping she can shed some light to them and let them know it’s very painful. I pray things get better for you. Thank you for your comment.

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Sorry dear but let me tell yo you are not alone! It happens to all of us out there “endo suffers” I battled with work colleagues and family members they always thought her it was psychological that I was exaggerating that it’s only period pain that I have to be brave, I don’t know how bad your symptoms are at the moment but for me it got to a point t where I couldn’t go back to work! Muncjntract had been terminated as I don’t have an specific “date” to my return! It sucks but that’s the reality! Nobody understand unless they are in your shoes... I am exhausted lacking energy is one of the commons symptoms, and if you are feeling so sick why you are evare n bothering going to work? Honestly I can tell your from my own experience, I tried keeping my job but I couldn’t and decided to stay at home and deal with all the excruciating pain and various symptoms from home... it is so depressing but at least I don’t have anyone pointing the finger at me anymore.... I really hope you can make the right chlice just remember that when it comes to dealing with endo pain only you know how bad it can get and nobody out there has the right to judge you! All the best x

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Thanks for your support. Well today I went to work again. But when I got there I broke down in tears with the pain and think the pretence of how strong I was trying to be was over. I’m now home and resting. I hope you feel better soon and the pain eases for you xxx

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Thank you. That’s what happened a week and a half ago to me. I thought that I could stuff it out and work. Nope! The pain was so bad I had to go to the ER. I have a high pain tolerance but that pain broke me down to tears. Still do at times, cause it’s just too much.

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Thank you, I too don’t know when I may return to work and hoping I will still have a job.

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Well fingers crossed you will be ok at work. You are genuinely ill so I’m sure they have to understand that. I’m now having a sofa duvet day which is the norm lately. I’ve cancelled the girls xmas party 2nite. I haven’t the energy to get myself lookin glam and I don’t feel like pretending I’m ok and happy 2nite. Gutted but I just think I’d cry if I went wen I see everybody happy and celebrating as that was once me xxx

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Thank you and I hope you feel better as well. It’s hard sometimes trying to put on a brave face.

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Aw i hear you. I had the same but not with colleagues. My colleague's have been really supportive but with my boss. Which had forced me to walk out and not return.

Sometimes people find it hard to understand and empathise when they haven't experienced things like this themselves. They can detach themselves.

I think this is where you feel icsolated with this illness.

Look to your friends and family or those who you are close to for support. I've recently lost my best friend due to being poorly for so long. But i am lucky to have good people around me still.

Have a look at the diet for endometriosis sufferers. I've recently cut out dairy and it has decreased the horrendous bowel pain in the mornings and at night.

Regarding work, i myself got to a point whereas i thought sod it. You dont care or appreciate that im coming in and working a physical job sick then i wont come in.

Maybe speak with your manager and explain again. That you really are suffering but you come to work so not to let everyone down.

I know how frustrated you feel. But doing your best is all you can do. And if they don't appreciate what you are doing then we sure as hell do.

Sending hugs xxx

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Thanks Agilitina for your reply. I’m sorry you have had to leave your job and have lost a best friend too. That must have been tough for you. I’ve definitely found which of my friends have been understanding and supportive so far in my journey. Hope you find a new job with a super boss and your friend obviously wasn’t the best if she doesn’t understand. My boss wasn’t in today, was off sick with a cold. They know I’m not having a good time and waiting for an opp but some days they forget I’m suffering. I’ve started the diet which has helped a little but it’s also depressed me with it being xmas time with all those lovely treats on offer xxx

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Crikey, your boss was off with a cold?!

If he/she can be sick with a cold then they absolutely should try to respect that you are being brave and working through it.

Try to keep in your mind it reflects badly on others and not you. However j do think people just get so busy they just forget.

I wouldn't wish this on anyone.

Hopefully the lap will help you.

Oh yes, xmas does seem grimm without choc. But there is carob you can get at holland and barret. 80% dark could be an option. But its still sugar.

I suffer with severe breast pain and migraines too. And apparently caffiene choc and cheese can trigger this.

Let us know how you lap goes!

Thank you for your kind words. I just think this site is the best thing. I don't know about you but i feel less lonely. Xx

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Thanks, yes I’m loving this site as everyone really understands each other and what they are going through. Ohh I’ll look for that chocolate in Holland and Barrett I’ll try anything that’s worth a treat. Thanks. I get lots of migraines when it’s ladies time and especially if I’ve had alcohol. I know chocolate and cheese are bad for migraines but I now no they aren’t good for endo too. There isn’t much that’s allowed on the ends diet all my fav things are bad 😢

Thanks again for your kind words. Hope your on the mend yourself soon X

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Thank you so much for your comment. My best friend did text me back and said that she’s sorry and didn’t realize how much pain I was in. She has been checking up on me. And as far as some of the people I work with I can care less what they think. Until they have put they have experience Endo then they will never know.

I did read some things about how to eat with Endo. And I love dairy, so that’s definitely going to be a challenge. Would activia yogurt be okay to get. And I do have that issue too with the bowel pain. What do you do to help you to have a bowel movement? I been doing MiraLAX everyday but haven’t gone it

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Well I really hope you can rebuild your friendship and she I’ll be there for you more.

Well yogurt is good for the gut etc but it’s still dairy which is bad 🙈 I actually get excited now visiting the gluten free section in the supermarket to see if there is anything new and exciting I can buy. I noticed they do gluten free mince pies. Gosh how sad do I snd 😱. I’m still not having great times with the bowels and it’s worse since my colonoscopy. I’m hoping I’ll get some answers wen I visit this Tuesday xxx

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Okay I think I will be visiting the gluten free isle today😊

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I dont take anything for bowel pain. I am still waiting for more tests so im trying to stay med free. They keeo putting me on anti biotics high dose for what feels like infection but cultures come back clear.

If you google endometriosis diet there are some useful pages. I was reading this morning.

Ive started taking evening primrose and vit D as i am a little low. Apparently b6 and b12 is good to take.

I cant advise on meds though hun as i have a pile of abdominal pain meds and take none as they never worked.

Sending big big hugs. Xx

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Hello Swats,

Oh yessss! unfortunately this is a well known occurrence.

All I can say is that there's still a lot of hard work that needs to be done out there both on a social as well as medical level. There is a huge lack of the following:

- understanding (apathy & emotional intelligence in general) - by the way this includes also friends & family

- awareness of this health condition or "invisible illness" and the nature of its complexity (yes this also includes medics)

- available resources for patients and sufferers to gain some key knowledge in order to better help manage their condition and find the treatment most suited to their individual case (by this I do not mean the internet as a very valuable research tool, or the few non-for-profit organisations who do offer invaluable support. But what health providers & the Government should offer as a standard duty of care to patients).

I still work very hard on my resilience on a daily basis, it's not easy by any means, regardless of how strong-willed & determined you are by nature.

Hang on in there! Best of luck, you can do it!

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Thanks for your support. I totally agree with what you have said. It’s still a condition that many people haven’t heard of and I really wish it was more out there with more action and support for us all. Hope your doin ok xxx

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Yes people! Start to limp, touch your stomach, put a face! What they don't get is they can't see it, you probably like me put in 110% to be normal and fit in. I wonder if they really know what the disease is capable of? The common thing they would say was. 'It's not that bad, you don't look ill ' . . . and think your a weird woman making it all up ! The opp will help, what they need to understand this is a disease! Coping is very hard I know, I could til 40, then had to give up work as I no longer had any reserve and started to fail asleep at my desk and spent too much time in the toilet, trying to attempt a per, a poo or waiting for painkillers to work so was doubled up and at least could think about the work I was expected to complete. Good luck with everything we all need a medal for endurance! X

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I think its because its not an in your face problem like a broken arm. I read somewhere that endo fatigue is the same as that as advanced cancer! It can make you feel terribly ill too with nausea. I get what i call pregnancy symptoms when due on! Nausea, reduced appetite, diarrhea, migraines. Its a horrible disease and fobbed off by many as 'painful periods'. Thats probably the best thing about the disease. That i can cope with. The rest is a real killer!

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Thank you for your reply. Fatigue is definitely a major thing for me right now but I know that’s due to the fact I’m not sleeping. I cant remember the last time I had a decent 8 hours sleep. I wake up every nite and last night I think I got about 3 hours 😂 . Hope your ok, you snd to be having a tough time too x

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