Feeling alone

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

22 Replies

  • Hi - I'm so sorry you are suffering so much so young. What treatment have you had so far and what symptoms do you have, both at period time and at other times?

  • 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

  • Where in the UK are you?

  • Wales

  • Hi - can you click on my name and look at my post on rectovaginal endo and the one on how to find a specialist centre. You must be see by a skilled surgeon. You don't have NHS Choices like in England but you do have a centre in Wales and also people have been referred over the border. Have a look at all the links in my specialist post as you almost certainly will have rectovaginal endo and the European guidelines confirm this must be dealt with in a centre. Private message me if you have any problems. x

  • Hello Lindle.

    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?

    Many Thanks.

  • Hi - strictly the ESHRE guidelines are recommendations as they can't be enforced in law but clinicians (GPs) are expected to comply with them under Good Medical Practice. The section in the ESHRE guidelines is 2.4.5 and this is in the second bold box at the end of the section that talks about the risks of surgery for deep endo. Deep endo means rectovaginal and other deep disease such as bladder nodules too. This recommendation is incorporated in the BSGE guidelines. If you go on the BSGE site who maintain the list of centres you will see a tab at the top 'guidelines'- go down to 'Endometriosis, Investigations and Management' and click on the link. This then refers back to the ESHRE guidelines. Finally, if you look at Good Medical Practice (link below) and go to point 11 in Domain 1 'Knowledge, skills and performance' it tells clinicians 'you must be familiar with guidelines that affect you work'. So this is saying that they must comply with the guidelines. So if you want to go to your GP with the evidence that you must be seen in a centre take references to all of this.


  • Thank you for your input, Lindle.

    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.

  • Hi again

    Ultimately GPs across the whole of the UK (including Wales) are bound by Good Medical Practice as produced by the General Medical Council. They state their role as;

    'We decide which doctors are qualified to work here and we oversee UK medical education and training.

    We set the standards that doctors need to follow, and make sure that they continue to meet these standards throughout their careers.

    We take action when we believe a doctor may be putting the safety of patients, or the public’s confidence in doctors, at risk.'

    In Good Medical Practice the terms 'you must' and 'you should' are used as follows:

    ‘You must’ is used for an overriding duty or principle.

    ‘You should’ is used when we are providing an explanation of how

    you will meet the overriding duty.

    ‘You should’ is also used where the duty or principle will not apply in all situations or circumstances, or where there are factors outside your control that affect whether or how you can follow the


    In relation to guidelines it says 'You must be familiar with guidelines and developments that affect

    your work. You must keep up to date with, and follow, the law, our guidance and other regulations relevant to your work.'

    This therefore confirms that all GPs in the UK, including Wales, are duty bound to follow the ESHRE guidelines. They recommend that women with deep endo should be dealt with in an endo centre so the 'must' in Good Medical Practice confirms that women in Wales who have rectovaginal or severe disease carrying risks from surgery must be seen in a centre. Those refused should complain to the the GMC and perhaps if enough publicise their stories about GPs in Wales failing in their duty of care it might make some difference.

    As a side note on the hysterectomy issue I'm not sure what specifically you refer to by the NHS England Guidelines but perhaps the NHS Contract for severe endo. This is backed by the ESHRE guidelines (reference to the Green Top Guide that is now archived and replaced by the ESHRE guidelines). ESHRE aims to give recommendations based on evidence and in section 2.4.6 the available evidence is discussed, but it does seem that this is not considered conclusive or that a hysterectomy is a potential cure for either pain or disease. But for women who have tried all other possible treatments and these have failed it recommends that a hysterectomy in conjunction with BSO and excision of all disease should be considered as it has been found to be effective in some women. Ultimately stopping periods is likely to be the only solution to preventing new endo from forming (it is now generally agreed that the source of tissue for peritoneal endo is retrograde menstruation) so for women whose periods don't stop with hormone meds and who appear to have aggressive endo that recurs after repeated surgeries then the ESHRE guidelines recommend that a TAH, BSO and excision of all disease can help some women.

  • 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.

  • In answer to your points:

    I said that GPs MUST comply with GMP and GPM states they MUST abide by guidelines (ie recommendations) that affect their work which include the ESHRE guidelines. Therefore the are duty bound to abide by ESHRE. Interpret it as you want. It could be used to help Welsh women but if you believe otherwise then this is your opinion to have.

    'Who are these people in "general agreement" that retrograde menstruation (Sampson's Theory) is the primary cause of endometriosis?'

    'I'm not happy about any organisation positing that as the definitive 'answer' to the cause of endo, tbh'

    'There is widespread concern about the plausibility of this theory'

    Who said anything about Sampson's theory? Sampson's theory is not retrograde menstruation, Sampson's theory is, by definition, a theory. I'm certainly not aware of anyone claiming Sampson's theory as the cause of endo or that there is widespread concern about it as I didn't think anyone believed it any more - as far as I was aware this is considered completely outdated and incorrect. The cause, i.e. the triggering factor(s), that cause potential tissue to become pathogenic, whether immune, autoimmune or otherwise, is unknown.

    You seem to be confusing the cause of endo with the source of tissue that transforms into endo, which is a common mistake.

    Retrograde menstruation is the term for a process that current research believes causes menstrual blood to be forced back through the Fallopian tubes assumed to be with contractions of the uterus. Sampson's theory states that this is the CAUSE of endometriosis. Clearly it is not for the many reasons we all know and understand by now. There is a very great difference between seeing this as the CAUSE, as he did, and seeing it as the SOURCE of the tissue that becomes transformed into endo. The endometrium of women with endo has been found to be different to that in women without endo and evidence suggests it had already begun the transformation process by having aromatase expression (an important feature of endo) that endometrium of normal women does not.

    'Latest research suggests that endo lesions are present before birth'

    Anyone who believes that endo is present from birth necessarily has to believe that retrograde menstruation could be the cause of peritoneal endo in the way that Mullerian tissue is thought likely to be the source of tissue that becomes nodular endo and probably adenomyosis. Your statement is incorrect and the article about this on Endometropolis provided as evidence confirms this. The article confirms that the tissue found in foetuses is even further removed from endometriotic tissue than endometrial tissue. Tissue found in foetuses is still poorly differentiated but this means it possesses great plasticity to be modified in endometriotic tissue later in life by whatever triggers it - it does not represent endometriotic lesions, it is tissue that could become endometriotic lesions later in life. Thus both endometrium and mullerian tissue are considered viable SOURCES of tissue that becomes endo. This is very different from claiming either one as the CAUSE as Sampson did. There are many recent papers on the pathogenesis of endo that discuss this and since they are peer reviewed and accepted in journals they stand as evidence until proved otherwise. Obviously if you have evidence that proves these incorrect then you should perhaps submit your findings.

    '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.'

    I'm not aware of anyone claiming that a hysterectomy cures endo. Certainly the ESHRE guidelines do not. But if all else fails and all lesions are fully excised at the same time as they recommend then there will be no endo left to thrive. That is the point being made. I am simply quoting what the guidelines say not expressing an opinion, so I don't know what your point is. If you have evidence to dispute the evidence put forward by ESHRE then perhaps you should submit it to them for consideration.

    I am very well aware of the ability of post menopausal endo to locally biosynthesize oestradiol through aromatisation of cholesterol in order to proliferate. My own endo was only found as post menopausal endo after a TAH/BSO activated by oestrogen replacement, a particular aggressive form of disease that was more like ovarian cancer than endo.

  • 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.

  • I am not sure who this person is who is conducting this argument but for the benefit of people in Wales:

    The guidelines as such are not enforceable in law since they are Europe wide and this would be impossible. The task of ensuring compliance lies with the individual health organisations. As discussed above the GMC in its Good Medical Practice requires that certain duties of clinicians 'must' be complied with and 'should' refers to how this is to be achieved. But both are obligatory. And one of these duties is to abide by guidelines. This is clear. Whilst the guidelines might not be directly enforceable in law a clinician could face legal action if they damaged someone's life by failing to comply with the requirement to follow guidelines and they could be struck off.

    This obligation is clearly born out in the updated Welsh Governance e-manual issued on 1/4/15 that states under 'Health and Care Standards, Standard 3.1 Safe and Clinically Effective Care':

    'Care, treatment and decision making should reflect best practice based on evidence to ensure that people receive the right care and support to meet their individual needs.'

    Criteria to be followed in achieving this:

    'People are safe and protected from avoidable harm through appropriate care, treatment, information, support and early detection of risks.'

    'Practice evolves to reflect new evidence and provides an efficient and effective response to promote safe and clinically effective care.'

    'People receive a high quality, safe and effective service whilst in the care of the NHS which is based on agreed best practice guidelines including those defined by condition specific Delivery Plans, National Institute for Health and Clinical Excellence (NICE), NHS Wales Patient Safety Solutions, and professional bodies.'

    'Practice keeps up to date with best practice, national and professional guidance, new technologies and innovative ways of working.'

    Furthermore the Welsh Government have recently agreed a new Service Level Agreement (i.e.funding) with NICE which covers technology appraisals, clinical guidelines and interventional procedure guidance. Additionally the agreement now includes public health and future social care guidance as well as the new NICE Quality Standards, Clinical Pathways and NHS Evidence.

    This is all published in NHS Wales' own governance so I'm not sure how the person above concludes that NHS Wales does not have to abide by NICE/ESHRE guidelines. The guidelines are absolutely clear in highlighting the risks of surgery for deep endo and recommending this only be undertaken in a centre of excellence and the Welsh NHS governance is equally clear in stating that patients must be protected from avoidable harm through appropriate care based on evidence, with the NICE guidelines specifically quoted.

    In response to comments on the Sampson's theory and hysterectomy 'myth' the person above really does seem to be arguing with herself. It is really not of any interest to me what opinions others might still have either issue, and they are entitled to have them at the end of the day. I base my opinions on considering published evidence which is my choice.

    And for the record I have already put great effort into trying to help at the point of care having been responsible for getting a list of centres published on the BSGE website which I personally believe was a big move forward for endometriosis sufferers. Clearly there is a problem now getting the message through to GPs and gynaecologists and I am currently working on a submission to the BSGE highlighting the problems I have observed since it was established in 2009. So I think I am doing my bit to help.

  • Thank you for your input, Lindle.

    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.

  • Hi - I am in the middle of writing out suggestions but in the meantime can you give me the link to the Welsh NHS guidelines for endo. x

  • Hi again - are these the guidelines you mean?


    I think they probably are. These are not guidelines - it is just 'information' that actually is directly copied from the NHS Choices website for England. They actually say this at the bottom. This is the corresponding information on Choices:


    Much of the information published on NHS Choices is totally inaccurate and ultimately worthless. It is the underlying guidelines that matter and the NHS Wales version refers to the RCOG site as the external source which uses the ESHRE guidelines as its base for guidance. This was originally in the form of the green top guide but this is now out of use and replaced by the ESHRE guidelines. This is very useful to know because if this is the best NHS Wales can do in providing guidelines then they are confirming that the ESHRE guidelines should be applied. This link confirms that RCOG (that covers gynaecologists in Wales) uses ESHRE guidelines in determining standards to be applied to gynaecologists. x


  • Warning – it’s a long one! I do know you are working tirelessly to try and resolve the situation in Wales but in England, despite Choices, many woman are being refused referral to centres too by GPs giving all manner of reasons, if they even know of their existence. Ultimately regardless of whether they will oblige in providing proper care, what matters is what they should be providing and that this can be proved. Let's establish the things we know can be confirmed as fact, whether or not they are complying:

    1) The recent Welsh governance e-manual confirms that treatment must be safe and based on agreed best practice guidelines, including NICE. The NICE guidelines confirm they are underpinned by ESHRE (and other sources) and ESHRE confirms that rectovaginal endo must be dealt with in a multidisciplinary centre of excellence. So this confirms that NHS Wales agree that RV endo must be dealt with in a centre. There is no other way of interpreting this.

    2) The NHS information guide based on the NHS Choices site refers to RCOG as its external source that in turn is underpinned by the ESHRE guidelines. So they are agreeing that ESHRE should be applied.

    3) The article published in the Welsh media in 2012 where the ombudsman found in favour of a woman inappropriately treated for severe endo in general gynae and not being referred to a centre also confirms this, as evidenced by the fact that the health board paid damages. In admitting liability they confirmed severe endo must be dealt with in a centre. I know you are aware of this article but I’ll put the link:


    4) There is an accredited BSGE centre in Wales. The BSGE website confirms ‘Severe Endometriosis should be treated in specialist centres’ in the first sentence of ‘requirements to be a centre’. The fact that a Welsh board has sought and gained accreditation for a centre confirms that that board at least agrees with this statement and upholds the role of the centres in treating RV disease. I imagine there may be a degree of autonomy in the different boards but assume all are governed ultimately by NHS Wales when it comes to fundamental principles and think the ombudsman would view this as having to apply throughout to avoid discrimination by post code.

    5) Good Medical Practice requires GPs to keep their knowledge up to date and to follow guidelines and developments that affect their work, but we know from experience in England that many if not most GPs don’t even know about the centres and refer to general gynae. So ultimate responsibility for endo treatment lies with gynaecologists who worryingly seem equally ignorant of the centres. Gynaecologists are bound by the GMC and RCOG guidelines which are very clear on severe endo:

    The 2008 RCOG guidelines state at 10.3.6:

    ‘To improve delivery of care for women with severe endometriosis, regional and national referral pathways should be developed for advanced laparoscopic procedures as the specialist centres emerge.’


    The GMC Advanced training skills module for advanced laparoscopic surgery for excision of benign disease states:

    ‘This programme defines the training required to produce individuals with the skills required for the excisional treatment of benign gynaecological conditions using advanced laparoscopic surgical techniques. This is an advanced training program for a specified small group of clinicians to be trained to carry out high level laparoscopic surgery in this field. It is not covered anywhere else in proposed RCOG training. It is envisaged that people attaining these skills would serve as tertiary referral leads. This programme requires two years intensive training and is separate from levels attained in the laparoscopic ATSM. The trainee needs to assign at least 50% of their time for two years to be able to have the necessary skills at the end of training.’

    The highly complex skills required of a surgeon undertaking excision of endometriosis, pelvic sidewall dissection and rectovaginal excision are then given in great detail on pages 29/30, that they must have acquired after the rigorous specialist training referred to above. This is also covered by the BSGE but gynaecologists are bound by GMC standards and so any gynaecologist tackling severe endo without this training to acquire these skills is in contravention of GMC requirements.


    I think this is probably the most important evidence of all that severe endo must only be dealt with in centres, whether in Wales or anywhere else, or in hospitals that can prove they have gynaecologists with this level of training with a multidisciplinary team of supporting surgeons available.

    6) As you’ll know women are already getting referred over the border in some cases so a precedent has been set.

    When helping women in the UK with uncooperative GPs who refuse referral to a centre my approach is to write formal letters to practices for them, detailing the patient’s rights and evidence of treatment they should be offered and putting the onus back on the GP by requesting that they confirm in writing why they refuse to allow the patient their rights and asking them to detail the NHS legislation on which they rely in refusing those rights. Since we have Choices this has worked so far each time. But I think a similar approach could be taken in Wales since there is so much evidence for proper care. I know ultimately it needs addressing at NHS level as it does in the UK but my hope is that by chipping away by enforcing individual cases where necessary by taking it to the ombudsman, the message will finally get through.

    I would suggest that every woman who is refused surgery in a centre for known severe disease or symptoms of severe disease writes a formal letter to their GP laying out the very clear evidence for referral to a centre or asking for confirmation/evidence (which can probably found by googling their profile) that the gynaecologist proposed has undertaken this training as required by RCOG, requesting they detail the legal provisions that allow them to refuse referral if appropriate, asking for confirmation in writing that the patient cannot have rectovaginal disease if the GP/gynae claims this etc.

    Women should also consider writing directly to the surgeon they have been referred to for RV disease asking them to confirm directly that they have undertaken the 2 year training for advanced lap excision as require by the RCOG in order to tackle such disease. Everyone should always satisfy themselves any way that any surgeon is up to the task for any surgery, but asking this verbally is no good. If they are required to commit this to writing they will be unable to lie and any general gynae being asked this is likely to run for the hills at the thought of being sued if things go wrong. I will put a post on along these lines asking women in Wales if they want me to look at their case and write letters to see if it has an effect.

  • 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

  • So sorry to hear that. I know what you mean about people passing off your pain as mild, its frustrating. Hope you get some good news soon xxx

  • Hello there.

    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.

    Hope to speak with you soon.


  • 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

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