Ive been diagnosed with endo for 4 years now and I keep thinking that it'll become better, everytime i see my doctor its worse news, but one thing I keep doing is hide how much pain im in on a daily basis, my sister has endo too everyone thinks shes worse off because she shows her pain yet nobody knows my pain, I have the best boyfriend! He's so supportive and understands absolutely everything with endo, but i need someone that knows what im going through to advise me! Im 17 been ill since i was 13 i feel like i have been robbed from my teenage years because of endo, i feel like I can't do anything because of endo, doing normal day to day activities is a struggle, im having a really bad day today and i feel alone, does anyone else feel like this? Sorry
Thank you for your time x
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17yearoldgirl
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Ive been through the menopause that didnt work because i got an allergic reaction to the injection, im currently on a pill, ive been on a different pill losterin 20 before that didn't do anything, i had a lap in feb and found out that I have stage 4 endo.. Ive had 2 laps in the first one in 2013 they removed my endo but in the one o had in feb they couldn't remove any.. Im in constant pain everyday to the point I can't go to school or work, I have to go home early from school because i cant do a full day becauae of my pain, painkillers dont work for me and because of my age they won't prescribe anything stronger.. I dont have periods i haven't had a proper period since i was 13-14 but when i did have them they were horrible i was in bed all day.. My pains getting to the point it traveling down to my legs and around to my back
U should ask your dr if u can be refered to endometriosis specialist clinic also ask your gp if your locial hospital has one also u can go on bsge website and check if ur hospital has a endometriosis specialist clinic I had a lap in January this year for stage 2 endo and aheasions in my pouch of Douglas but still no better off as reckon as was delt with in general gynaecology but push to be refered to a endometriosis specialist clinic
It sounds as though you have a lot deal to with right now, and have really not been treated correctly by medical professionals, I'm sorry that things are so difficult for you - but there is hope!
If you would like to have a look at my profile we run a group on Facebook to help women in Wales, you are most welcome to join us and we will do our very best to help you, and make things happen so that you can get the best care.
Can you please clarify for me on which page of the eshre guidelines for professionals, you deduce the statement above confirming RV endo must be dealt with in a specialist centre?
At FTWW, we have been very much focused on the ESHRE guidelines and, like you, were convinced that they could be used to benefit women in Wales.
As a general rule, we've been slightly disappointed in some of their recommendations (ie the mention of a hysterectomy as a potential 'cure' for endometriosis) and felt that the NHS England guidelines were vastly superior, and more explicit. However, it's good that you too have noted their reference to the use of specialist centres as, currently, women in Wales are having tremendous difficulty accessing them. There is only one in the principality - in Cardiff - which women located outside of that particular health board's coverage are not routinely permitted to use. Our aim is to make it possible for women throughout Wales to utilise the BSGE centres across the UK, just as English patients are able to do. To that effect, we are lobbying ministers and the Welsh NHS.
Nevertheless, as you indicated, Wales is part of the EU - and receives considerable financial assistance from it to improve the lot of women in the region; being able to access proper, timely, and efficacious healthcare is a crucial part of that - something that is currently being denied to the vast majority of endo. sufferers.
Thank you again for reinforcing a central tenet of our aims. The ESHRE guidelines are supposed to form the basis of the Welsh Assembly's health policies and, clearly, this isn't happening. If others can see this too, then that proves that this is the case - helping to increase our conviction and belief that things have to change.
If any other ladies in Wales are interested in joining our campaign, or just want support in trying to find their way through the system as it stands, please see my profile - we are in the process of setting up a website too.
Well, therein lies the confusion...They SHOULD refer to a centre is not MUST refer to a centre...However, I would agree that it's open to interpretation and could be used as evidence of poor care.
In addition - who are these people in "general agreement" that retrograde menstruation (Sampson's Theory) is the primary cause of endometriosis? There is widespread concern about the plausibility of this theory - so I'm not happy about any organisation positing that as the definitive 'answer' to the cause of endo, tbh. Latest research suggests that endo. lesions are present before birth (which would also explain their being found in men).
Finally, one further point: a hyst. may provide some symptom relief in a small number of cases - possibly because of concurrent adenomyosis. However, removal of ovaries (and the concurrent loss of oestrogen) doesn't 'cure' endometriosis because it has been shown that endo. lesions can produce their own hormones and continue to thrive post total hysterectomy / BSO.
Hey, im 19 and have had endo symptoms since i was 13. I understand everything you're going through, i used to miss out on so many things with my friends just because of the pain i was in, they understood to start off with but after a while they didn't understand as much. Im the sort of person who will not show im in pain even when it feels like im being stabbed so i understand completely what you mean. Quite often people ask me how i am and when i explain to them the pain they are shocked that i can do just about anything. Anyway what im trying to say is we seem very similar so if you ever need to talk about anything i am here for you xxx
I completely agree! My friends used to understand now they seem they dont care, explaining the pain to someone is horrible, i missed out on going out with work last night i know it's pathetic but missing something like that because of endo really does suck! If you ever need to talk feel free to private message me xxx
If they're recommendations, then they're not laws, are they? You yourself said there was a distinction to be made between "must" and "should" whilst simultaneously referring to the 'recommendation' that women with severe endo. "should" be referred to a centre - which does not have the same weight as a 'regulation' which "must" be obeyed (a point you made yourself, before - apparently unwittingly contradicting yourself). The ESHRE guidelines are just that - GUIDElines, not hard and fast RULES - again, something you yourself said, and on which you now seem to be backtracking...This may seem to be mere semantics but the distinctions are crucial if a legal case is to be made (that seems to be the potential thrust of your argument, I'm surmising).
Similarly, NICE guidelines (based upon those drawn up by ESHRE) are to be used as a recommended basis for treatment protocol, but they go on to say that the devolved governments don't have to abide by them - so, again, the Welsh NHS (for example) does have wiggle room on the issue of treatment for endometriosis; wiggle room which means they're not strictly 'required' to provide excision or access to a BSGE centre, if cost (or other factors) are deemed contraindicative. I think the key argument for those fighting the Welsh Health Service (or those of other devolved governments) is to concentrate on proving the fiscal / economic argument for routine referral to a BSGE centre. The ESHRE guidelines are undoubtedly useful, but given that they are NOT 'laws' but recommendations, they would, I imagine, play a 'supporting' role in the case being made, rather than the main thrust of it. I agree with you that this is a bitter pill to swallow when we're discussing people's health. However, despite all of this, this is not meant to diminish the ESHRE guidelines' value in terms of presenting a case for best practice. Undoubtedly, they will be used as such - in fact, I think that has already been indicated.
In answer to all of your other points...Surely you cannot fail to be aware that many, many surgeons in the UK (and elsewhere) believe in Sampson's Theory and still posit at as the 'cause' of endo? Perhaps those working in the field haven't read the same documents as you have? In which case, maybe you could consider sharing your findings with the medical community (gynaecologists and GPs) rather than bashing me - a mere mortal - who is simply commenting on the current status quo. And the status quo still reiterates the myth that a hysterectomy can 'cure' endometriosis. This belief continues to feature quite prominently in most medics' understanding of this disease - so, whilst I appreciate your efforts to 'educate' me, really, they're misplaced. You would be far better served by concentrating your efforts elsewhere: doctors, surgeons, clinical strategists, politicians, etc...After all, THEY are the ones 'in charge' of our treatment.
In any case, I am bowing out of the thread now. Thank you for participating in this discussion...I hope it proves to be useful to any ladies reading and wanting to access care elsewhere.
Have you read the Welsh NHS guidelines for endometriosis? If not, you really should. They are nowhere near as sound as those pertaining to England. They first of all (falsely) claim that endo. is incurable (which it isn't, if proper, wide excision is utilised - evidence suggests an 80% chance of non-recurrence if this modality is used); they then go on to claim that the "disease can be managed" using hormone treatments (when as we all know, hormone treatments might temporarily manage symptoms; they don't prevent disease progression), and, CRUCIALLY, they refer refer to the ONLY surgical treatments being "heat, a laser, an electric current (diathermy) or a beam of special helium gas" (no mention of excision). They go on to say that if disease is extensive, a laparotomy will be used, and that a hysterectomy and BSO may also be offered by way of a 'cure'.
At NO POINT in any of the Welsh NHS guidelines, updated in 2014, and which, as you say, are supposed to be based on ESHRE and NICE recommendations are the BSGE centres mentioned, the use of excision, or the need to access a specialised multi-disciplinary team. It seems, therefore, that the Welsh NHS does NOT feel the need to abide by the obligations to which you refer, or indeed follow through on the service agreement to which it has signed up.
This is borne out by the experiences of the ladies in the FTWW group. Yes, the Welsh NHS is complying with its OWN (shoddy) guidelines, but as has been said, those do not represent the guidance issued by either ESHRE or NICE. Quite evidently, they are not providing care which constitutes best practice - and their preferred treatment modalities are indeed causing "harm".
At FTWW, we are trying to fight this battle, and right this wrong - but it is proving incredibly difficult. Any further input you have on how we tackle the issue would be gratefully received.
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xxx
Feeling alone - like people just don't understand 
Feeling very alone and hurt, endo and friendships
feeling super lost, scared and alone right now
Scared and feeling alone
Feeling so lost and Alone! 
