Re-write for 2008!

Once again it’s time to dust off the site and do some improvements. Things have come on a long way since we launched this back in 2000/2001 .  We are going with a Blogging theme now, mainly as it’s easier for us to get articles up.

The site probably looks sparse at the moment, but we will be covering new news stories as we hear of them and get the old content back as soon as possible, we only have limited time.

Don’t forget you can contribute – just get a message to us via the contact page on the site and we can sort out getting your article or story or picture etc.. up.

Endometriosis Documentary Advert

We are looking for cross section of women to appear in a documentary that aims to both raise awareness and combat the unfamiliarity of the disease by providing an intimate look at how Endometriosis affects not only the sufferers but their partners, family and friends. Whilst both being
informative and sensitive to the subject matter, the style of the film will be casual and informal, so as to encompass an “every day” or “real life” feel. We need women to talk candidly about their quality of life and the toll it takes on those around them, especially family and friends. We also want to explore their “management” the disease, any surgical procedures they have undergone, or at this point are considering and also, their hopes for
the future.

In particular, the producers are looking for case studies to allow for a “warts and all” insight into their lives. Although, this aspect of the production will be intrusive and at times disrupting, it will allow for a unique opportunity to document the iscomfort and inconvenience of the illness. A small camera would be left with the subject to record the ups and
downs, including “diary moments” during the difficult times, so as to reduce the level of disturbance posed by a cameraman. We also want to include a young woman, approx.16-25 yrs, in the group.
If you feel that you would like to share your experiences with others, please get in contact with us as we want to hear your story. Unfortunately, we cannot pay a fee to all those who appear in this documentary, however, we
will reimburse expenses within reason. We need you to provide us with some background information, so as to collate the data prior to production.

Please inform us with: a brief history of your condition, contact details, age, marital status, single, family, job etc. Additionally, if you have any
information connected to Endometriosis that you feel would be of interest or know of any unusual or inspiring circumstances, we would very much like to talk to you. Our contact details are as follows. e-mail:
Postal address: 32 Falkland Road. London. N8 0NX.
Once you have sent your information, a member of our production team will contact you as soon as possible.

Conclusions that may be drawn from the Endosupp 2002 Questionnaire results

The majority of women who suffer from Endometriosis and are diagnosed with it or seek online information or support for Endometriosis are between 20 years old and 39 years old.
It should be noted that this age-range is affected by the age of

the majority of Internet users – studies show that men and women above the age of 35 tend not to utilise the Internet as extensively as those ages before 35 (this figure is improving all the time).

The majority of respondents were from the UK, this is due to many factors, the questionnaire was publicised both in the UK and in the USA on official message boards and mailing lists, however the UK community tend to have a more focused approach with many sites available for messaging, live chats etc. This led to a faster and more widespread response from the UK than from any other country. We are seeking ways of publicising the next questionnaire further.

The majority of women have been diagnosed for 1 to 5 years, this may be because women who have been diagnosed for less than a year are still learning about Endometriosis and have not yet found online resources to help them and so they haven’t learnt about the questionnaire. The drop in numbers for people diagnosed above 6 years may be because these people fall into the over 35 range and may not use the internet.

On the subject of other medical condition people suffer from several conditions stand out as having a good possibility of being closely linked to Endometriosis. Ovarian Cysts formed a massive 39 percent of other conditions that exists with Endometriosis; this may indicate that any woman who has been diagnosed with Ovarian Cysts may have Endometriosis, especially if the woman suffers from one or more of the other frequent conditions. Migraines feature highly, this is probably due to the pain and stress induced in many women by Endometriosis and probably cannot be taken as a condition linked to Endometriosis as in today’s lifestyle so many aspects can trigger off migraines. On the other hand IBS and Depression do seem to be symptoms that many women suffer from with Endometriosis. Many Endometriosis sufferers were initially diagnosed with IBS, this would indicate that Ovarian Cysts, combined with IBS – both of which can lead to depression being diagnosed – are strong indications that Endometriosis may be involved.

The symptoms that women have with Endometriosis was by far the largest ranged, but some results stand out. These symptoms could(or should) be taken as indications that a women may have Endometriosis and that potentially more diagnosis should be undertaken to ascertain if this is the case.

Fatigue is the biggest symptom; unfortunately it can be brought on my many aspects of modern life and on its own cannot be taken as a good indication. However what is apparent is that the community could benefit in help in dealing with fatigue.
Back Pain is present in a surprising number of women with endometriosis, this is another area that more information needs to be made available to Endometriosis sufferers in order to help people cope with it.
Headaches are present in many women, this is probably due to the indirect effects of Endometriosis. Fatigue and Back Pain coupled with Depression are most likely major contributors to this.
Many women suffer from bloating, from the results of the questionnaire this appears to be a good indication of Endometriosis with over 75 percent of responders suffering from it. Along side this Pelvic Pain and Painful Bowel movements along with constipation appear to be linked to Endometriosis.
A strong link is apparent between painful sex and Endometriosis, the figures may be higher than reported due to the personal nature of the question.

For more information look at the results page on
If you want more detailed information about the results you can send an email to asking for the information you requires, if you can tell us why you want the information we will respond as soon as we can.
N.B. All information divulged would be without any information that could identify the respondents in any way.

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