Your help is needed urgently - Please con... - Endometriosis UK

Endometriosis UK

73,026 members53,343 posts

Your help is needed urgently - Please contact me with your experiences of Endo (& other Gynae problems) and work.

Scooteeder profile image
9 Replies

Hi again folks,

I'm delighted this Forum exists; it's the best thing for Endo since "sliced bread"! Women NEED to be able to discuss problems such as Endo (and other Gynae complaints) openly, and honestly. They need to be able to talk frankly, with no fear of embarrassment. Forums such as this provide that opportunity, as they are populated by women experiencing similar issues. There's something about shared experiences that leads to greater empathy...

Anyway, I'm asking if any women would be happy to contact me about a particular issue. As I've started to find my way around this Forum, I've noted a particular, and VERY DISTURBING, theme... Women with Endo (and other Gynae issues) are finding it hard to get support at work. Employers seem to be lacking in information, and understanding.

Now, I'm NOT saying this is always the case; there are a few stories from women who have had lots of support and encouragement at work (obviously, they are the lucky ones!). There are also stories from women who are self-employed, and therefore have totally different experiences from women who work for an employer. Some women report working for the Private Sector, and others for the Public Sector.

What I have noted, however, is that women are DEFINITELY HAVING DIFFICULTIES. Those who are self-employed say that although they can manage their own working patterns to take account of when they feel ill, or well, they struggle with the fact that they get no sick pay or other support when they have to take time off because of their symptoms. Women who work for employers often seem to indicate that they feel under pressure to return to work before they are fully fit. Others indicate that they are not given enough support, such as part-time hours or flexible home working. "Reasonable adjustments" are not made for those who cite disability legislation. Yet more feel threatened with dismissal because of cumulative time off work. It is clear that women do not feel supported, and that employers are NOT doing enough to provide support.

I have further noted a worrying trend; in that it seems predominantly to be PUBLIC SECTOR EMPLOYERS who are LEAST supportive. This is very disturbing, because these jobs include the NHS, Social Services, Youth Work, Child Care, Education... JOBS THAT CALL THEMSELVES "CARING" ... SURELY any job where the staff are supposed to care, is a job where the employer should care for the staff?

It would appear that many employers are less than helpful, because Disability Legislation is unclear as to exactly what constitutes a "disability", and many employees are not fully aware of their rights. Furthermore, employers seem to vary considerably in the level of support they are prepared to offer - some are willing to accept employee's explanations of their symptoms, and to accept them as evidence of disability; others deny any evidence of disability at all, and literally force employees to take the matter to Tribunal. This inconsistency is very disturbing, and suggests evidence of prejudice.

I would like to ask if there are any women who would contact me, with their experiences of having Endo (or other Gynae issues/Infertility) and work. I am concerned that, in the midst of the Recession, women with health problems such as Endo are NOT getting a fair deal, as far as employment is concerned. AND, because Welfare Benefits are under attack, those women who cannot work because of symptoms, are finding themselves stuck "between a rock and a hard place" - unable to work, but also finding it increasingly hard to get benefits.

I intend to collect together women's experiences (which WILL BE MADE ANONYMOUS) and to send them with a covering letter to my Local M.P., to National Government and to the Department of Work & Pensions. I want the Government, and employers, to understand that people with long-term health conditions, and disabilities (such as Endo) cannot be "scapegoated". NOBODY asks to be ill, or to have a disability; so it is wrong, and cruel, to make it difficult for such people to find work, whilst also making it difficult for them to secure benefits.

I have already set up an E-Petition asking for better and quicker treatment for women with Gynae complaints and/or Infertility. I'd be delighted if readers would sign it (it can be found at the post called "Please consider signing my E-Petition). However, I still want to do MORE to help... so, if I can collect together women's experiences and send them to Parliament, I hope I have a REAL chance of explaining to those in power what it is like to live daily with an illness you did not ask for. Perhaps, then, women (and their families) will get the help and support they so need and deserve.

Anyone interested in helping me can e-mail their stories to elaine-ellis1@hotmail.co.uk

I thank you all in advance...

Elaine Ellis.

Written by
Scooteeder profile image
Scooteeder
To view profiles and participate in discussions please or .
9 Replies

I would definitely like to help!

loopylou55 profile image
loopylou55

I would help too, I have severe endo, work for the nhs but my employers are understanding & supportive. I do however support those who also suffer who are discriminated against. I get so angry the way people are treated with this vile condition. We haven't asked for it and until a cure is found this will be an on-going scenario x

Scooteeder profile image
Scooteeder

Goodness... Thanks EVER so much. I hadn't expected such quick responses. There really ARE some seriously caring and thoughtful people out there.

Anyway, the best thing I can suggest for people to do, if they would like to help, and share their stories/experiences... is to send an e-mail direct to me at...

elaine-ellis1@hotmail.co.uk

In the e-mail, you do not need to personally identify yourself (as I promised to keep your anonymity), just initials, and town where you live (or you could use your Forum user name, and the town where you live). Then, please tell me about your experiences with Endo/other gynae problems or infertility, and work. You can tell me as much, or as little, as you like. I want YOUR experiences, in YOUR OWN WORDS.

Once I have collected together a number of stories, I shall send them to my local M.P. and to Parliament, as well as the Department of Work & Pensions, together with a covering letter explaining why. I am happy to e-mail you a copy of this letter, if you wish to have it. Please let me know in your e-mails if you do.

Meantime, thank you ever so much for any help. Thanks also to anyone who has signed my Petition. maybe one day we will all live in a world where disability and long-term illness is no longer such a problem - instead, people with disabilities/illnesses will get all the help, support, care and treatment they so deserve, from people who are educated and sympathetic. Perhaps one day society will understand illnesses and disabilities far better than it does today?

We can live in hope...

Best wishes,

Elaine Ellis.

in reply toScooteeder

I wished we could all be treated adequately and promptly enough!

Imagine if we were all taken seriously to begin with..... How many fertilitys would have been preserved, how much emergency treatment we wouldn't have needed and most importantly how much suffering (both physical and emotional) would we have been spared?

Another bug bear of mine is the withholding of medical details about our condition!

Barbara x

Leeshaun profile image
Leeshaun

I would love to be able to help, let me know what I can do to help xxx

Count me in! I would love to help. xx

purpleyears profile image
purpleyears

I'd be happy to share my story - though I'm self employed working as a freelance producer and event manager. My nightmare is getting the NHS to work with me over dates for procedures. Folks who work on salaries have NO understanding of how devastating loss of work is when one works contract to contract.

Scooteeder profile image
Scooteeder

Hi again,

Thanks once more to anyone who offered to help - I've already had a couple of women e-mail their personal stories to me. This is just a little assistance for those who have yet to do so...

Cuddlybarb, Loopylou, Leeshaun, Fordie and Purpleyears... if you would still like to send me your stories, the best way to do so is to e-mail them directly to me at...

elaine-ellis1@hotmail.co.uk

You can write as much, or as little, as you like. I do not want you to have to personally identify yourself - just initials, and the town where you live. Once I've collected together enough stories, I'm going to go through them all to make sure they ARE anonymous, then send them with a covering letter to the Government (& DWP). Hopefuly, this may work in conjunction with my Petition to raise awareness of the issues facing women with Endo (& other Gynae or fertility related complaints).

Thanking you again in advance for your help. I look forward to receiving your stories...

Regards,

Elaine Ellis.

Blondedia profile image
Blondedia

Hi. I would like to help. I only work a couple of hours a week, but no this condition is not talked about or understood by people who don't suffer from it, it's just classed as "women's problems".........there's no sympathy from those who don't go through it.

Lisa xx

Not what you're looking for?

You may also like...

Your experiences with merina coil and endo 😄?

I had my laparoscopy on the 8th of march 2018 and they told me I have endometriosis on my left...

Is there anybody who, like me, feels that the poor treatment and delayed diagnosis of Endometriosis is an example of SEXISM?

I know this may sound stupid, or controversial... but it's something I can't help asking myself......
Scooteeder profile image

Endo doctors/specialists - who would you recommend?

Hi ladies I hope you're all OK. I was just wondering who of you have had good experiences...
Becsidom profile image

Gastro and Bladder problems and anxiety with Endo - help please xx

Hi there community, Firstly its really great to find this forum - I can't tell you how grateful I...
NatalinaE profile image

First day back at work post-surgery went terribly

So I've just had a call from the BSGE Endo Centre my GP referred me to, telling me that they can't...
staceymacg profile image