About radio host and writer

[Ginger5641]

I don't think that's right. Or funny! If you have permission to be on site. Then ok. If you don't have this problem. It's not a laughing matter.

[mablesky]

Can I ask what the post is you are talking about??

[Ginger5641]

It's about the fact... It's not funny. To profit from others pain and suffering. About such a serious problem. With having Endometriosis. It's not a laughing matter.

[Amelia_M]

Huh? You're going to have to be a little bit more specific. We don't know what you are referring to.

[Kerri215]

I dont understand....

[Ginger5641]

About having Endometriosis

[DSan]

Who is the radio host and writer???

[Ginger5641]

I don't know. But don't think they should be on site. To make fun of people about something isn't funny. That they don't understand.

[confusedandworried]

Hi, if it's the one I've seen on the forum they aren't making fun of the condition. Rather they are trying to highlight it and get sufferers input to ensure a holistic approach to the broadcast. That can only benefit endo sufferers.

We need people to hear and learn about this horrible disease so that it is taken more seriosuly! What better way to inform on mass then through the media?!?

If it is the one I have seen on this forum then I for one am grateful they are doing this.

[Ginger5641]

Ok then. I guess I took that the wrong way then. That's different. Normally you don't see many people wanting to help with that. But seem to misunderstand Endometriosis. And how it affects you. Thanks. For your message. I can deal with awareness/understanding.

[EllieWorldwide]

Hi,

I am the producer for the radio documentary about endometriosis and I want to reassure you that this is absolutely not 'making fun of endometriosis' (I'm deeply concerned that anybody would even come to that conclusion), nor am I 'profiting' in any way, in fact I am funding the programme from my own pocket because I want to raise awareness of the condition.

The piece aims to highlight the condition, its prevalence and the issues surrounding diagnosis and treatment, which could likely be improved if Endo was more widely recognised and understood. Hearing individual's stories adds reality and human context to the story, otherwise it is simply a medical condition, and my aim is to show how Endo is much, much more than that, as we on this forum all know.

Also I would like to reassure you that I am a sufferer myself, as I said in the original post, so I have a great deal of empathy for everyone on this site; reading through everyone's posts is like reading my own diary. I am stage 4, I've had 11 surgeries, took 7 years to be diagnosed and deal with chronic pain issues working full time and as a part time postgraduate student. I have been to some dark places in my Endo journey, and I have at times suffered in silence out of some kind of misguided pride. Now I am older (and wiser?!) I am turning that around, and want to speak up for all those who aren't ready or able to. I therefore aim to represent Endo and the women in the Endo world in a genuine and compassionate manner, whilst informing and educating the public.

Many thanks to those commented above who also helped to clarify this for the concerned poster.

I hope this provides some reassurance.

If you would like to discuss it further please do not hesitate to contact me on [e-mail] or 07814 802356.

Ellie

[confusedandworried in reply to EllieWorldwide]

Hi Ellie

I'd like to say a big thank you for trying to raise awareness of this horrid disease.

I have suffered for 20 years and have been appalled by the lack of knowledge and understanding within the both the general public and healthcare professions, despite the fact that endo is one of the most common gynaecological disorders.

I have had comments that I'm sure are familiar to many - "have a baby, that'll cure it", "a hysterectomy or pain medication is now your only option" and my personal favourite "It's just painful periods. Most women have to deal with this"!

Women are having to educate themselves on the facts rather than rely on the word of their GP and, in some cases, so called specialists. When they then try to share with professionals what they have learned they are fobbed off as being unqualified to know what they are talking about!

I also am appalled that my GP practice hadn't heard of the BSGE accredited endo centres, again especially given the prevalence of endo. I also know from being on this forum many endo sufferers sadly aren't aware of these centres or the fact that excision surgery now is classed as the gold standard in the treatment of more advanced endo.

Nor are some women aware of the risks posed by numerous surgeries to rid themselves of this disease which has the potential to make it worse with the scar tissue and adhesions that can form. I have heard of one women undergoing 18 operations.

It would be really good if you could highlight these issues on your broadcast as well.

Wishing you all the best, Jo