raising the profile 'TooLong'. Jeremy Vine show

Hi all. I managed to get and speak about this on the Jeremy Vine show today and tried to raise awareness of this condition. I have signed the petition on change.org to raise awareness of time to diagnosis. I have suffered with endo for many years, my sister and cousin have it. Now it looks like my daughter may have it. I wanted to talk about how it had affected me for nearly all of my life since the age of 13. I am 44 now. I had very painful periods, diarrhoea, nausea for at least 10-14 days of the month. diagnosed aged 22 yrs (lap). carried on with masses of drugs-tricyclic pill, ponstan forte (mefanemic acid) tramadol, domperidone and aspirin for a week before my period to help break down prostaglandin.

I was lucky to have two girls in 2001 and 2004 but symptoms returned. I had been misdaignosed with IBS but it was actually endo (lap) on the bowel aswell. I had the mirena coil but had anaphylactic reaction (rare). eventually started Zoladex and had total abdo hysterectomy and ovaries removed too. that was 6 years ago and I have been very lucky to feel very well since then. I was put on HRT but in the last two years I felt like I was having the same symptoms coming back but without the period. I assumed that the hormone was inflamming the endo that was on my bowel. I stopped taking HRT. I am fine now, BUT it looks like history is reapeating itself and my oldest daughter (14yrs old) has just been suffering with the most horrendous dysmenorrhea and menorrhagia. I am definitely getting her referred to a specialist.

keep pushing folks for recognition of this disabling condition.

I would also like to pass on my love to you all- you are not alone. take care and blessings xx

19 Replies

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  • I just heard this and was really pleased that endo is being discussed in the main stream media. I turned up the volume on the office radio so I could listen. I did cringe a little as discussing anything period related is so taboo but the more we talk about it the easier it should become. I've found it difficult talking about it with my very macho boss who has been surprisingly supportive - I know some ladies aren't so lucky.

    Well done for speaking up for all of us dealing with endo. I hope your daughter gets some help soon xx

  • Hi elisepalmer71, I listened to the Jeremy Vine show this afternoon it was good to hear him raising awareness for endo. Thank you for ringing in and speaking up about this horrendous hidden disease. Hopefully there was women out there hearing the symptoms for the first time and thinking this is me I must get checked out rather than sitting there in silence thinking this is normal.

    I pray you get a quick referral to a top specialist for your daughter who will listen and take your concerns seriously and that she doesn't have endo.

    God bless

    Jane xx

  • Am so pleased you were able to speak on this terrible disease .Have recently had a bowel resection amongst other things due to endo and I really feel it is not taken seriously enough .My consultant said very well to me " endo isn't life threatening but it can be certainly be life wrecking" he is so right .

    I really wish your daughter all the very best this must be terrible for you all .

  • Thank you. I was trying to pack as much in as I could. I thought Dr Jarvis played it down a bit, as I have know a lot of women and girls suffering really badly. In the whole scheme of things, I think I was lucky. X

  • Thank you so much. I feel better today about. Empowered and ready to ask for what is right for my daughter. My daughter is a bit embarrassed that I have been talking about it on national radio though! 🤗

  • Well done on raising awareness! When I have recovered from my lap I intend in trying to do some things to raise awareness. I have written to Loose Women as I think that would be a great platform for awareness xx

  • Great idea!! Definitely get it on there. There is a buzz about it at the moment and we have to play the media to our advantage. Good thinking and good luck. X

  • Maybe you could email too, if we bombard them they might listen !!

  • are you the same Adele on fb, of the post I have shared? (Neal)

    pic of young girl with long dark hair and pic by the side with nasal oxygen? that would be just 'small world'!!!

  • Yeah that's me!!

  • I will definitely join you both in emailing!!! Elise - you were brilliant calling in to the show xxxx

  • I looked it up and have listened to it now, you did so well ! Thank you for getting it out there x

    bbc.co.uk/programmes/b06nrgrl

  • Thank you. The profile has been raised a lot recently with the guardian article and (I haven't watched this yet) #DONTDOPOP. and today. Have you seen the petition as well? Xx

  • Yes I have signed and shared on my Facebook so lots of friends and family have signed also

  • Thanks Adele. Xx take care. I'm here if you need to chat. You can follow me on Twitter too @MommyElise

  • Thankyou for the link! Was really interesting listening to it x

  • I heard you on the radio. Well done you! I really hope your daughter does not have to go through this for long... Let's hope more awareness leads to more research and more research to a cure!

  • I've just listened to the show and wanted to say well done Elise for speaking up. You came across so well and made it clear how awful this disease really can be. I'm certain this has raised much-needed awareness. I hope your daughter gets the help she needs. I'm sure with your knowledge and experience she'll benefit hugely x

  • Fantastic - heard you on the radio; was a bit disappointed that the doctor seemed to be implying that hormone treatments and/or hysterectomies were successful all the time...Good for you for getting on the radio. I've submitted an email to Victoria Derbyshire and hoping she'll pick up on it either interviewing me or others with the disease!

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