How do you feel diagnosis times could be reduced?

Endometriosis is a difficult disease to diagnose because the symptoms are varied and could point to a number of issues. Also there is no quick test or scan to diagnose it accurately apart from invasive surgery (laparoscopy).

It would be really interesting to hear what steps you think could be undertaken to reduce average diagnosis times.

8 Replies

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  • I was just thinking earlier this evening, that I have never seen Endo covered in a soap opera for example. This would give better coverage of the disease, make it less taboo, and maybe let other young woman experiencing symptoms of this disease more likely to seek their doctors early.

    As for doctors they can be a bit more proactive in investigating the posibility of someone having this. We know there appears to be a strong genetic connection with this disease, so it could be tracked and the future young generations would instantly know their chances of having this.

  • I agree with VickyW, coverage on a soap opera would be really good because people would then understand it more and like you said would become less taboo and people may seek medical help earlier. On embarassing bodies a girl had it so I think that was good because it got more coverage of the illness.

    I think they are researching new ways to diagnose endometriosis without using invasive surgery, but for now I know it would be costly but maybe it should be more of an earlier step for people having a laparascopy as soon as they mention the symptoms to their doctor? I know it's a bit far out but I would happily have a laparascopy again if it removed my pain haha :)

  • Hi All. This is Helen North - I'm CEO at Endometriosis UK. I saw your responses to Carol's question and thought that you might be interested to know that we are currently working with a major BBC soap opera who do wish to cover a story about endometriosis. Because things are prone to sudden change within tv-script land I don't want to give too many details, but it's an opportunity we are trying to take advantage of and if things go our way then it might be screened in or just after Awareness Week. Keep your fingers crossed!

  • I think believing women's reports of symptoms would help. That sounds bitter but it's a real obstacle to diagnosis. Although laparoscopy is the only proof, when the symptoms are convincing enough to send a woman for a laparoscopy, it usually is endo (according to Eskenazi et al in Fertil Steril 2001; 76). So testing by treatment really makes sense.

    If the symptoms go away when you're on progesterone treatment (contraceptive pill, Mirena coil), that's a very strong indicator too. (Do be aware that it's estimated 1 in 5 women are progesterone intolerant, though. Details here: endowriter.blogspot.com/201... Looking at the cyclical nature of the symptoms is a huge indicator, too.

  • i agree with megan, maybe gp's should be more aware of syptoms aswell. personally i was told by one gp that if pains were as bad as i was saying i wouldnt be sitting there id be at the hospital! aswell as all the other things they tried to tell me it was ie ibs, urine infection and of course the popular one of it being normal and that was a gynae consultant.....

  • Soap opera storyline will get full exposure to millions of viewers so glad to hear one of the soaps have decided on this!

    Also yes if the GP's took more notice of the symptoms we tell them we r suffering maybe they should all be told to make a database and monthly they are to submit it to an Endo Expert who can then see from this database (from all over uk) any new symptoms many women are suffering which they are not already aware of and also this way they can monitor all issues too.

    Because i have gone back to my doc this month they have referred me bk to Gynae but are now also testing for IBS because she thinks some of my symptoms cant be do to with Endo but ive had them from day 1 too just they are getting worse!

  • The soap opera storyline would be grate, i think so many of us with endo just carry on because we no we have too. we don't look ill on the out side but on the inside were crying out for help. to see an endo story line played by the right person in a soap would be brilliant, seeing no just the physical effects but the emotional affects and how it talk over a persons life . I feel that making GPs more aware and nursers is so important, i feel its a taboo subjects for most people and so many people have endo without even knowing.

  • It's even simpler than that. GPs just need to stop being sexist arseholes and stop sending women away who are clearly in agony! I know some gynaecologists are a problem too but it takes years for some women to even get referred and that's so wrong. There's a misconception that period are supposed to be painful - a little ache, yeah, not absolute hell like we know!! I'm studying medicine and I want to do everything I can to sort this out.

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