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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