Dear ladies, if you read a list of these symptoms that was caused by just one disease and you had never heard of endometriosis would you be HORRIFIED that this disease actually existed in at least 1 in 10 women and 99% of the worlds medical professions have not done anything positive to help these poor women over the last 50 years + and you learnt that these women just get fobbed off time and time again, even laughed at by them and fear the battle they have daily trying for treatment and hoping they will be cured of this disease. What would you think? Would you believe the lack of knowledge? Would you believe that in this day and age women would still be treated like this? If it were 1/10 of the population of men worldwide would they be left to suffer every day?...not be able to work?... not be able to father children?....
A disease that: Infertility
Eats your organs as it spreads through your body
You can lose organs
Your organs do not function properly
Constant dull ache every single day of your life
or constant dull ache 2 weeks before your period
Depression
Sharp stabbing pains in lower abdomen like being stabbed by a knife
Diarrhoea
Constipation
Migraines with sickness
Sore/(excruciating) bbs before a period
Back ache
Sciatica pains
Excruciating bowel movements
Pain before/during/after urination
Painful sex and pain for days afterwards
Tampons too painful to use
Tearing of the anus area after bowel movement. 2 weeks to heal
Extremely heavy periods
Irregular periods
Endometriosis deposits causing fibroids due to excessive oestrogen
Endometriosis deposits causing other disorders due to excessive
oestrogen caused by endometriosis itself
Pain so severe they are unable to do daily tasks
Pain medication that is useless
Hormone (very strong) treatments that are useless
A & E visits to hospital ending up being sent home with pain meds
99% doctors from gyneas to gp,s appear to have no knowledge of
this disease
No research done
Relationship breakdown
Family/friends not understanding/not interested
No information or leaflets anywhere regarding this disease
Battle to see, get heard, taken seriously, proper treatment from doctors
10% of women worldwide have it (1 in 10) astonishing
Higher % of getting cancer
Can be found in places like the brain, nose, knees, lungs, kidneys etc
Doctors say no cure but in reality there is but they are incapable of
treating this disease thoroughly. All we need is it to be thoroughly
excised
I know I have missed loads of symptoms out, please feel free to add more. Thank you for reading x
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It makes you sick doesn't it that nobody seems to give a damn... I have often felt isolated, alone and frustrated that no-one in the medical profession gives a s*** about me...thank God for all the wonderful people on here - I don't know what I'd do without you all!
Sorry to say but this petition is really out of date from a legal perspective - the disability discrimination act was repealed by the equality act 2010. Also it is extremely unlikely (close to 0% chance) that the government would ever formally state endo (and many many other serious conditions) as a disability in the equality act, the law is purposively designed to be flexible around what is a "disability" as it needs to be considered on an individual basis, no 2 people with the same condition (endo or not) are affected in the exact same way so it would be very restrictive and dangerous if a long list of conditions were stated as automatically being a disability (ie. women diagnosed with endo but no symptons would be classed as disabled yet they may not feel disabled and could effect things like their job opportunities etc) therefore the ONLY conditions that are automatically a disability in the UK from the point of diagnosis are cancer, HIV and MS.
Yes have to agree with Hays on this issue. Not meaning to diminish how debilitating ENDO is and can be for some of us. But Hayls is right - I know a few girls with endo but it does not impact them at all, they get normal pain in periods, still work, had kids etc etc. And even though they have endo, they cannot relate at all to what I go through. And so they would be pissed off it was considered a disability. This is why it has to be on a case by case basis only to protect the likes of them. However I realise it makes it more difficult for people like us, sadly.
I personally think the 10% stat for endo is misleading. Yes, I'm sure it's correct but I think that it's probably only 5%, if that, of endo sufferers who get such severe symptoms that we all get. Not saying that the 5% don't need help, but i think the numbers are misleading. For me personally, I do not know or have never met in my own 'real' life, one girl with symptoms such as I, or you live with. Which makes me believe that Deep Infiltrating, stage 3 and 4 stages of the disease are rarer than we think. It's just the issue is polarised for us personally, and for us as members of this forum.
Yes I think you're right about the stats, I have very severe grade 4 endo and at times things have been unbearable, I have 2 friends with endo and they can't relate at all as they suffer only very little in comparison. I discussed this with my Gynae a few months ago as he is compiling info on recto/endo, he is also a recent previous president of BSGE and he said that only a very small percentage of women with confirmed endo have severe/stage 4 and the associated problems - on forums like this you are always going to predominantly find those of us that have endo at its worst and struggle the most and those at the early stage of diagnosis - there have been a lot of girls on here asking about diagnosis and first laps who have never come back, presumably because they either don't then have endo or once diagnosed they have managed to get it under control and get on with their lives ok like my friends with endo have.
EXACTLY, yes yes yes to all your points. It's something that has been bugging me for a while and it's relieving to hear someone who realises this too, and interesting what your gynea said, very interesting Hays. I think you are spot on about a lot of the new members on this site. There have been a number that have come and gone, people I used to communicate with but they have moved on, which is great, but I think as you say, they didn't have it or just have mild forms where they can continue to work, exercise etc - such things that I cannot do anymore. I've written so much on here over last few years that I have actually deleted a lot of my entries because I don't want a whole history of my life on a web site that I don't have admin power over, but I actually think there are only a smaller percentage of total users on here with D.I.E others recover and move on. Thanks Hays x
Just agreed with the original woman's sentiment and I feel so lost and I don't know what to do. Employers don't take it seriously at all and it started so early in my life I could never claim on a life insurance or health insurance policy. Feel like I'm at everyone else's mercy. I realise they believe through projected figures 10% of women have it but it doesn't feel like the case. I am weirdly lucky in that my auntie has it too and I have someone to talk to about it. I have it constantly throughout the month and it grows back in weeks, not years after surgery. I just wish there was a way to have a break from it. And no I don't think a blanket of all endo sufferers are disabled is the point much like other conditions but that some extreme cases can be understood to be perceived as a disability.
Oh i do hear you, I really do. I can't work due to this crappy disease. I was on a £60k package including pension and health care. That's ALL gone because there is no way I could perform my job due to this illness. So I do get where you coming from. My issue is that there seems to be so many women with it where they were only diagnosed because of infertility. Not diminishing that either, because it's the worst thing in the world and I am living it now. But they had NO pain at all, and still don't. But yes,wouldn't it be nice if those of us with stage 4 of the disease who can't work,actually got some benefits. I get nothing, despite working crazy hours in my 20s and 30s, leaving it til late 30s to deal with pain and infertility. I get NO thanks for that from anyone. So yes, for many of us, it is a disability. The good thing is, there are ladies on this forum who have won disability cases, but that doesn't stop the discrimination. I know there were people at work who viewed me as a skiver, as I used to take a few days off each month, or every two months, for years. I'd love to tell those bast****s where to go now, makes me very angry. An old female manager was the biggest bully and culprit.
So you do have a point you really do. I got used to having very nice things, earning that money at my ages but that's all gone. Health comes first for me now. Xxx
When endo is covered in the media it largely cover the symptoms that women suffer which at least helps educate people. However, I think people aren't really that interested in women suffering (even other women without endo). There's plenty of evidence around the world and down the centuries of women being abused, suppressed, ignored etc. etc. Something else is required to give power to the message. Simply saying "it devastates lives" is sadly not going to motivate anyone.
One thing that make people pay attention a bit more is....money. Many of us here know all about the personal economic impact of endo. I lost my job and I'm unable to work 1 week out of 4 so who on earth would employ me? However, I still don't think that people without endo would listen much if it doesn't affect them financially. They just kind of feel sorry for you but cannot identify with you.
But it does affect everyone financially. Think of the cost of our illness to the nhs. And they seem to be mostly useless at treating it. So I found this study done in Austria called "Costs of endometriosis in Austria: a survey of direct and indirect costs."
ncbi.nlm.nih.gov/pubmed/235... These figures are obviously based on Austrian figures but are still useful to demonstrate the impact in most developed countries. The population of the UK (including Scotland) is about 7 times that of Austria so if we use the Austrian costs established and assume that they would be similar in the UK, this would indicate an annual economic burden equivalent to £1.8 billion. That's £30 a year for every man woman and child. remember it and quote to EVERYONE! Bear in mind that these are estimates only and are based on costs in the health system and pay scales of another country. It includes things like cost of days off due to illness.
Please feel free to correct my maths. It's my worst subject!
I could not agree with you more Brownlow, spot on. Women are still treated very badly and i really think it just doesn't 'feature' for others. I have tried to explain it to my family and they have been very very slow to pick up how serious endo is. And as for my brothers in law - I know they think I am just a lazy 'B'. One even tells me so regularly, which is incredibly upsetting. He runs a company and simply won't accept women's illnesses other than his wife's, my sister.
Really, we just have to look at the recent news regarding rape. Women are disbelieved all the time and sadly 2 women in the last month have committed suicide due to their attackers being believed over them. One story was covered yesterday, a lady in the forces, who was raped, complained, then bullied and kept quiet by seniors to shut her up. They simply didn't value her enough to believe her. She killed herself and there has been strong evidence about the cover up. But as usual, too little too late.
So, I agree - only finances and money may change things, because no one gives a hoot otherwise. As I said above, I felt I had to resign from a pretty well paid job, which I'd dedicated so much time to. I was too ill to continue working and didn't want a good career there to be ruined. So I just walked away. You know the funny thing, most of the nice girls I was colleagues with I have stayed in touch with, but it was mainly men I worked with and I actually got on really well with some of them, really well. Only one of them emailed me after my surgery to see how I was, not heard from any other since. I worked with them for 13 years, had lunch with them most days, went on holiday with them. It's awful, people do not wanna know about endo. Had I left due to another disease, I wouldn't be judged as much. Says a lot about how they valued me.
I had a similar salary package to you. I opted for career instead of children as the career I ended up in involves living in different countries around the world and involved a lot of travel. Long hours, high pressure, but incredibly rewarding. That's all gone now. Since my last contract I have not looked for work and I have lost my job in the past due to endo. My choice was to watch my career and health crumble or try to get better. My health comes first.
You are valued and listened to here. I enjoy your posts and have learnt a lot from you.
That is very kind of you to say. Sorry you also had to abandon a good career. It's really nothing more than a disgrace.
And re being valued, like wise, I always love your posts - though sometimes I feel too unwell to even type a response. But I am reading and taking it all in
Likewise for a lot of other girls on here too, I really value what everyone says.
There are so many bright, smart, knowledgable girls on here - at least we have each other. Sometimes it feels strange because it's all rather virtual, but it does count and does help me feel less isolated.
It really upsets me how many of us had/have good careers destroyed by endo. I'm a solicitor and my days are truly numbered unless there is suddenly some miracle. It's a hell of a lot of hard work and training (and money!) to go to such waste. I'm actually surprised I've lasted as long as I have but still really frustrating! My employer has actually been really supportive up until now but midway through phased return after 5 months sick leave due to major endo surgery I'm signed off again, not specifically due to endo but most likely connected to my surgery in October, I've been working from home even though I'm signed off but still not good
Similar situation, I just didn't recover quick enough. I was being signed off bu was so worried that I applied for a career break which I had to force to be accepted. I hated having to keep justifying why I was still unwell after surgery and sensed that I wasn't believed completely. I was initially, for a long time, took 6 months unpaid where I thought I'd recover but didn't. When back to work, was still so unwell and things progressed to the point I could barely walk for half the month. I was probably stupid to resign but once I found out I needed more surgery, I just gave up. I really hope you can find a way through this. I miss work a lot, the like minded people, the social side too. But I am relieved that I don't have to work now. I worked for one if the big accountancy firms, things were so competitive there, i couldn't maintain that. I hope you can somehow avoid having to give up a good career. Oh and i did the work from home thing too, my manager was in France so she didn't care where i was but I was too ill to work from home too, in the end.
I didn't even get that far. I'm only 23. I've tried all the different hormonal treatments. Including all the different pills and chemical menopause and progesterone only. I can't get a decent job, I have a crap job in sales that I hate. I've never had a time of freedom or money or anything. I've had surgery four times. I have been lucky in that I got pregnant after my 3rd surgery even though my organs were stuck together. But my pregnancy was really hard and the endo was still growing through it. And now I'm struggling to look after my child. I've not finished my mat leave yet and I have to go in to the gynae this week to discuss 'options'. I want to be independent and work but it feels impossible. So not even pregnancy and breastfeeding helps. I am so grateful for my daughter everyday and I adore her so please don't think I'm not, I was told I was infertile so she was a wonderful surprise. I just don't know why it has to be so hard. I'm sorry I sound so pathetic but I'm really struggling with agonising diarrhea purely from endo on top of everything else.
I am so sorry to hear this. It's so hard, and you have been through ALOT for some one so young - so please do not apologise at all for what you say. We are here to support each other and you need, and deserve support. It's great you have a child, and sorry it didn't help, but I think it's a big fat myth that it helps endo, sadly. Having a child at your age is a big responsibility anyway, without this illness, so you are facing a massive challenge. And I salute you for admitting that you are struggling - this shows you care - there are some parents out there who don't really care about their kids. You are not one of them, you just need help. I dont know how you do it, I admit that I struggle to look after myself, and question whether I will ever be well enough to look after a child, should a miracle ever happen.
And you are right to still want to work, it gives us a lot, independence, confidence, a life!!! Is there a job you really would like to train or learn, what's your ideal job? Xx Don't give up hope, without hope we have nothing. I still believe I'll be a mum one day, even though I am too ill to have ivf at the moment, and I'm nearly 39!
Oh and I've had the constant bowel issues which has left me exhausted and constantly dehydrated, no matter how much a drink. It's awful. I get that too
Yes! I am constantly drinking squash by the pint. Never thought of the connection. The thing is I just know that this condition is a lifetime deal and I would rather be young with a child than older plus I was told I couldn't have children I could try now or they would do a hysterectomy with no other choices. The main thing I wanted to do with my life is be a mum so most of the time I just tell myself to shut up because it doesn't matter - I have what I always wanted, my beautiful baby girl. I'm
Just worried tomorrow he's going to tell me I have to have a hysterectomy. Best of luck with IVF and getting better!! I've heard how much hard work it can be. Xxx
Oh you are welcome. I mean what I say. It's good that you value being a mum, but it's not to say its easy, especially for you. My sisters don't have to work, live in huge houses with everything beautiful, but they still struggle as mums. It's a hard job, for even the most fortunate of people. So please,don't tell yourself to shut up. Don't talk to yourself that way, be kinder to yourself. But you have a right to moan about things, don't let anyone tell you otherwise. Seriously xx
And I know I sound selfish but I really trusted them that pregnancy would give me respite til my hysterectomy in a few years time. And I do my best for my daughter and I am trying harder to get help for her.
I get nauseated and vomiting right before my period because of the endo.
Hi ladies I have endo from last two years nd didn't get proper trearment till now. I am from India and there is very few doctors who deal with endo nd I m badly suffering from pain as all. They should really do something for us
There are varying presentations of endo and many women may only present with some of the symptoms listed here. As previously discussed some women do not experience pain at all or very minimal at the most.
I have had awful pain for the last few years but I would not consider myself to have a disability. I manage to continue at work and have found ways to cope with it.
I understand that for some women this is just not possible and I think it really depends on the amount of pain experienced and the impact of this on quality of life.
I would like to see endometriosis categorised not just by stage but by pain status also. Eg "endometriosis stage 2 with chronic pelvic pain" or
"endometriosis stage 3 without pelvic pain". A standardised pain scale could be administered to patients to assess their level of experienced pain and impact on quality of life.
A high score should allow such patients to be considered for a disability living allowance if necessarily.
The only worry I have here would be if women abused the system and over reported pain in order the receive government benefit.
As for the comments on the medical profession. I do not blame my doctor but I do think endometriosis is under researched and poorly funded. Most research in the Uk is funded by drug companies. Endometrosis currently makes drug companies a lot of money due to the excessive use of hormonal treatments and pain relief. Research to explore the prevention of endometriosis will not be of interest to drug companies. The other big funder of research is charities but charities need donations. The ignorance of the general public of the condition is a big reason for lack of resources.
There is no easy answer but unless women with endometriosis speak out about it then we will not make any progress.
I came across this post in passing - apologies for finding it so late in the day!
I cannot help but find myself agreeing - Endo is something that ought to be taken FAR MORE SERIOUSLY. Just looking at that hideous list of symptoms - one that I could easily add to - makes me realise that I am not alone in finding Endo a "personal hell"! SURELY, anyone who is aware that women can suffer in such ways would want to do something to make sure that the illness causing these symptoms is well-recognized, well-researched - and ultimately completely treatable.
I suppose there IS one thing I have frequently wondered - personal experience - DO some women suffer MORE than others, because of the TYPE of Endo they have? I ask this, because it's well-known that some women can have Endo, but very few (if any) symptoms; others (like me) have Endo that causes truly AWFUL symptoms, and seems to be a real beggar to get rid of.
Personally, I suspect that lots of the women who have no, or just mild, symptoms may have only superficial Endo. In contrast, mine is DIE (deep infiltrating Endo) - it grew in and around my POD and Utero Sacral ligaments, plus area between bladder and bowel. I am well aware from my own research and reading that Endo is areas such as these can cause horrible bladder & bowel symptoms - upset stomach, urinary problems, cramping, bloating, etc (ALL of which I have suffered now for years). I also understand from reading about it that DIE grows deep inside anatomical structures such as ligaments, etc. causing painful nodules - thus, it's a LOT harder to locate and remove.
I've used this Forum quite a bit, and am well aware of the problems that a number of other women in this Forum have endured. It seems to me that many of us who suffer the most have DIE, or recto-vaginal Endo, or very advanced stage 4 Endo. Ours is NOT just a superficial "laser it away" job! Ours is having multiple surgeries, lots of pills, hormone treatment, NASTY Endo!
Some women seem to be able to live pretty ok lives with Endo; others of us can not. I've noted the people (above) who have REALLY struggled - giving up on their career, giving up on trying for kids, living daily in pain, on tablets, having lots of surgery... I can totally identify with that!
MY Endo took YEARS to diagnose (with all the usual "fobbing off" included) - I've had misdiagnoses, failed treatment, wrong treatment. I've been told it's just "normal period pain", "it's stress", "it's in my head"! I've been made to feel like a hypochondriac, a malingerer, a nuisance, and a "drama queen crazy woman"!
I can utterly empathize with "Yellowrose" and "Brownlow", "Hayls" and "Endopains" - I felt pushed out of a job I loved due to lack of understanding of my ongoing symptoms and illness. I was bullied for over FOUR YEARS before I finally gave up (going into work made me feel physically sick!) - there was NO support or understanding. I'd get moaned at for being sick; moaned at for going to medical appointments. I also got totally fed up of trying (alone and unsupported) to manage really bad, sometimes embarrassing, symptoms that I did NOT want other people to find out about. I got sick of dealing with insensitive comments.
I'm now doing Postgraduate study - and it feels like I'm climbing a mountain! I've had to take a fair bit of time out of my studies to have LOTS of surgery! I feel like I'm constantly behind, and playing "catch up"! I really DO think having Endo disadvantages some women.
Maybe not ALL women with Endo need to be classed as disabled - but if we need to claim benefits, we should be entitled. Personally, I think the Government and health service DELIBERATELY downplay and trivialize Endo as an attempt to reduce the number of benefit claimants. If they make women feel like "fusspots" and "malingerers" rather than genuinely ill, women will not feel that they are able to claim benefits (even though they may be struggling with truly awful Endo symptoms). I do think there is an element of deviousness, as well as just general ignorance. It doesn't make sense that the NHS should be SO ignorant about an illness - unless there is a Government agenda behind it!
I think the other problem is that Endo is just not a "glamorous" or "headline grabbing" illness. It is not fatal (as far a I know); and the symptoms can be embarrassing (diarrhoea, painful sex, heavy periods...). It also affects areas of a women's anatomy that the good old, prudish society we live in finds "dirty", or "unpleasant" to talk about! I suppose because Endo is NOT a great topic for conversation, people just do NOT want to know. Besides, it's invisible - so I guess it's just some much easier for some people to believe we are "making it all up", than to believe we have an awful disease that they can't see.
MOST (if not all) of the illnesses and disabilities that gain most sympathy and attention are REALLY OBVIOUS - blindness, deafness, being in a wheelchair, having a birthmark, having cancer, having AIDS... They are things that EVERYONE can either see, or know the consequences of (e.g. you can see a wheelchair/ you know AIDS is fatal). Clearly, society just CANNOT deal with illnesses that are both invisible, and unpredictable!
I was diagnosed at the age of 18 with severe endometriosis which sounds great, wow getting a diagnosis so young, only problem with that is that it was an emergancy apendectomy. I don't doubt that if the endo had not grown into my appendix that it would have taken much much longer to diagnose.
From the begining of starting my period at the age of 10 I had extreme pain before, during and after. Coping with school was bad enough but when I started working it became even worse. I ended up doing agency work as this was the only way I could work round my endo.
I had a hysterectomy at 34 and not surprisingly did not get rid of my endo my stomach still bloats horrendously, I have urninary problems and I almost faint with pain with every bowel movement.
What I find most depressing is that at the age of 46 I am reading the same things that I was reading over 20 years ago. It is really shocking to see things that I thought should well and truly be consigned to history and I say history becasue it really isn't herstory or our story.
As for the question of Endometriosis being considered a disability it really doesn't matter the name or condition that one has it is the way it impacts on your life. As others have stated not all women experience the same symptoms and whilst I agree that this is because there are different levels/stages and dare I say types of endometriosis, this is the case for many conditions and therefore it is better to focus on how the condition affects you rather than giving it the blanket term of being a disability.
I do think that though that it is utterly disgusting that there seems have been little to no progress made over the last 30 years in terms of better informed medical proffessionals, treatments, research and the stupid and ridiculous assumptions and statements we have to put up with, 'too young to get it', 'have a baby/hysterectomy it will cure you', 'it's just your periods it affects' and so on. It seems to me that the thing we should be focussing on is educating medical proffessionals and getting more money funneled into research. The economic impact of endo on the UK is £8.2bn per year, so why haven't we moved any nearer to any sort of understanding about this condition than we have. I can't help think that if this condition affected men instead of women that we would definately have much better treatment options but maybe even have more than theories about what it is and why it is but also have figured out a cure, but then again I may just be cynical after living with it for the last 36 years.
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:D
My experience of the Mirena IUD and Mirena Crash - please read if you are considering having the coil, or are about to have it removed 
Is this similar to your endo experience? (Please take the time to read, sorry its so long!) Does endo hurt when not on your on your period? 
Smear test
"Is a hysterectomy with removal of the ovaries really a good treatment for endometriosis? NO,it is not." Pls read to help educate yourselves
