Endo affecting your sex life? Sensitive media request

We have received the extremely sensitive media request, copied below. If this sums up your experience and you would be willing to talk about it, please email information@endometriosis-uk.org.

"I am writing a piece for one of the UK's largest newspapers about women who have yet to have sex. As part of this I am looking for a woman over the age of 25 whose endometriosis is so severe that she is still a virgin. This is to be a sensitive and wholly supportive piece on how the ordeal has affected her, most likely written in first person, so entirely in the interviewees’ words. She would have copy approval, would need to be named and pictured (a photographer, hair and make-up artist could be sent to her) and would be paid £250 for her time. Please do let me know if you’re interested or have any further questions"

12 Replies

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  • We understand that this is a really sensitive subject and not one that most wish to talk about. We weighed up the pros and cons of posting this media request before we did (we tend to reject more media requests than we post) however, we felt that there may be a number of women out there feeling extremely scared / confused / worried about intercourse as a result of their endometriosis (especially younger women) and hope that a sensitively written article may be able to shed some light on this often extremely lonely condition.

  • how would they know they have issues with thier sex life because of endo if they are a virgin???

  • I agree with u, i was thinkin the same, thought i wad bein thick n didnt read context right.

  • I am not ashamed to say this would be my experience. I would be happy to help but would like a bit more detail before I bare all to a national paper. I shall contact you Aaron.

  • I hope the newspaper puts it in perspective, althought providing a valuable insight into an individuals experience, I would be conserned that the piece would lead many underinformed women believing that their pain could not possibly be endometriosis because it isn't affecting her life as badly as the person in the article and therefore she may avoid getting help.

    The pain of many undiagnosed endo women is downplayed so much already by themselves, doctors etc that many don't get diagnosed for a long time (if ever) and as we all already know, this delay in diagnosis can have a real and enduring effect on the woman and her family's life..... Can we request that the article makes sure it actually educates the readers about the variety of severity of genuine symptoms to ensure that the public, aswell as many readers who may have endo, who may work with people with endo etc don't dismiss less severe symptoms as not "valid" or not worth investigating. xx

    also Kaye, good luck. we look forward to seeing your glamorous photoshoot! :D and yay for spreading knowledge xx

  • Thank you crystal_willow.

    Like you I would not want wrong or misleading information to be given. I am very much about promoting to early diagnosis of Endo (took me 15 years to be taken seriously) and very much want to stress that if you know something is wrong with your body, to keep asking questions and to realise that what a woman can go through with this condition is NOT NORMAL.

    The delay in my diagnosis has lead to major physical problems but also major physiological ones as well, including sex.

    It was my embarrassment, constant pain and tiredness and shame of my symptoms that lead to my problems with finding love. I would hate another woman to go through the same thing.

    I was sure no one would want to touch me, and when I tried to play around a bit, even that was agony.

    There is a REAL stigma to being a virgin, you don't talk about it, ESP when you are a 30 year woman. They make films pointing out and laughing at people like me, but you try and feel sexy after you have been bleeding for weeks, throwing up from pain and so tired from working you could cry!

    I think is could be a very good chance for a story to be told, it does not have to be mine, BUT (it's a big but) the paper must treat it with dignity and with well researched facts to back up the story.

    I hope what I have written makes sense, bit emotional as I type at the moment.

    Love and good health

    Kaye x

  • :o) if anyone if going to make sure the article ensures that the condition is depicted informatively it sounds like you're the girl!

    I'm so sorry its affected you like this, I have had some problems in this area but I am lucky that with considerate partners I hardly notice anymore. Younger partners can be much less considerate :o( but I guess I am lucky in that this issue was a pretty good test of who was (and was not) mr right.

    Have you been given any psychosexual counselling? some NHS services provide it for free and it may be useful to you. I know my area does it through the GUM clinic or CASH (condoms and sexual health) clinic.. I am going to send you a private message with one that I think will be local to you xx

  • I am lucky to have found a man I really thought I would never find. We are working through issues together and he is so very supportive. A few years ago I was very angry and bitter, but I worked through so much of it and I now use what happened to me as a tool to help other women and to promote and diagniose the condition.

    Thank you you very much for advice, I look forward to receiving your message.

  • It also took 15 years for me to diagnosed and I have to agree it with everything you say, It could have been me writing it.

  • Thank you RuthKelly. Nice to know I am not the only one out there. x

  • I just wanted to add my support for you Kaye. I have a lot of pain with sex and having the right partner is key, and your very right about being sick with pain and bloated doesnt make you want to go out and establish a sexual relationship. I have spoken to a lot of young women about their pain with periods and with sex, it is much more common than people realise. I was lucky to be diagnosed at 19 and spent a lot of time telling other girls that pain is not normal and to talk to the GP about it. I think if it is done in the right way it would help raise awareness. Best of luck. x

  • i am a 47 yr old woman who was ill from the age of 11, first hospital admittance when 16 and diagnoised when i was 20... i have been left with chronic pain and have been with my partner 11 yrs and have hardly had a sex life in all of these yrs and no sex life totally for nearly 4yrs .. it,s like the lady before was saying you are in pain , bloated and totally feel un sexy i still feel bitter and angry and only got out of hospital with this terrible disease yesterday.. i have ibs , chronic pain , depression stress all sorts due to endo and sex is the last thing i want ... any advise would be appreciated as my relationship is falling to pieces

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