New here Please help

Hello I'm Bethany (18) and this is my first post as joined today. I'm wondering if there's anyone around my age having problems? I've been suffering a lot with bowel problems for the past couple of years but from clear colonoscopy which leads to then thinking IBS (not sure if thats relevant ) and also have no feeling in pelvic floor so got very bad incontinence anyway, Seen a gynaecologist last month and he said that it's hard to see if there is any issues there as such a young age but due to my problems I've been having it could be something or could not be. Anyways tomorrow I start my injection (1 every 3 months and I start Livial (tibolone 2.5mg) im wondering if anyone else has had this and how did they get on with it? My doctor told me today that it's not really a common drug used in people my age. Any help greatly appreciated thanks x

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  • Hi Bethany - are you in the UK? And when did you periods start, are they painful, heavy, clotty, irregular? Are you on contraceptives? Do you have any back pain and/or pain in you bottom, things, legs, pain with sex if appropriate? When did the incontinence problems start and is it that you have pain holding it in and/or does it hurt at all after you empty your bladder? Was there a gradual lead up to it such as frequent urgency to pee?

    In any event these injections must not be given under the age of 23 with or without add back therapy (livial) because your bone density will still be forming and these drugs act on it. Your consultant has just gone down the lazy route by suggesting these medications to 'prove' if your problem is gynaecological or not. But if you do have endo affecting your bowel then it is may not respond to hormone withdrawal. This is a very flawed diagnostic test. If you are in Europe he is going against recommended guidelines that he is obliged to abide by. IBS is the usual misdiagnosis. Have you been tried with contraceptives first?

  • I would have thought I'd have been offered a laparoscopy x

  • Hi! I'm 19 and was diagnosed with endo this year after a 6 year misdiagnosis (ugh!). Because of my age they wouldn't do anything else but put me on the pill, which hasn't really done a lot for me so far. I also had vaginismus so I was given dilators to help with my pelivc floor, and they worked a treat for me, and I know the endo affects my bowel, so might be worth a check there with a laparoscopy! x

  • Hello, yeah I'm from the Uk (Scotland) I've been on contraceptives since I was 16 due to irregular period me and my boyfriend are hardly active since it hurts so much, not sure when incontinence started as always been kinda damp since I was very young and struggled with constant urine infections that weren't infections at all. I was rectal bleeding and lots of pain with fissure and a fistula. Sometimes after I uriniate theres a lot of pain, I didn't know this about the injections nobody has really explained it and I'm quite worried ment to get them tomorrow? Sorry it took so long to reply x

  • What I should do is print off the evidence and take it to the appointment tomorrow. Don't worry because it is your choice entirely and you don't have to have these injections if you don't want. These are the links to the guidelines:

    Page 26 of patient version.

    file:///C:/Users/linda/Downloads/ESHRE%20ENDOMETRIOSIS%20GUIDELINE_Patient%20version_FINAL.pdf

    and page 35 of the full versions for the medical people

    file:///C:/Users/linda/Downloads/ESHRE%20guideline%20on%20endometriosis%202013%20(1).pdf

    and this is the link to the NICE guidelines that confirm that you should be offered a diagnostic lap if endo is suspected which it must be for them to be suggesting these injections. The correct procedure is to first offer 3-6 months of contraceptives (which you've had for a long time already) followed by a lap if the symptoms continue. These injections aren't the appropriate treatment at this stage for anyone, but especially not for someone as young as you.

    cks.nice.org.uk/endometrios...

    Unfortunately you don't have NHS Choices in Scotland and have to rely on your GP to refer you to someone with a special interest in endo. Have a look at my post on the diagnostic lap as it is very important they are thorough.

  • Thanks so much for your help! I'm going to cancel my appointment tomorrow and go back and see my GP and see if he can give me some more guidance as nobody has really explained much at all. Sounds to me like I'm just being shoved off as always X

  • Yes, I think you are being wise. You now need some time to digest this new info because these injections are a big deal.

  • hi there I'm new from yesterday too. Ur not on your own I suffer with ibs as well endometriosis how r u today? My pelvis is hurting mild at the moment.

  • Hello I've only just seen this sorry my Internets been down.😔 Today I feel Rubbish so exhausted after working all weekend and doesnt help with chronic fatigue either, hows things with you?

  • Hi there, my pelvis having been giving me twinges of pain today but I'm coping so far. xx

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