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Worsening incontinence with endometriosis - really hoping referral at last

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Ginny31
Ginny31

It's been a while since I've posted here for many reasons. A lot health related has been going on in the past year.

I'm having more and more gynae problems from my endometriosis. The pain and bleeding at the time of the month is getting worse despite having tried 3 more kinds of medication. My period is lasting up to 2.5 weeks with only 2 weeks between.

The incontinence got worse recently and seems very much linked to my periods. I'm more desperate to go and go more often when I'm on my period. When the worst pain comes, often together with the pain suddenly peaking, I wet with no warning even if I wasn't aware of a full bladder.

I'm having to wear very large pads daily now. I can't wait very long when I have to go and leak a small amount or a lot when I'm trying to 'hold on'. I also leak throughout the day even when I don't feel I have to go. Sometimes I don't realise as it happens only after when I feel damp.

I've been told the endometriosis has grown over my bladder. I'm really hoping to get referred back to gynae clinic to try to get they pain under control and also to try to understand what's going to happen with my bladder - I'm scared I might end up not able to hold my urine at all. It's aleady daily not only on my period.

The pills just aren't helping.

Xx

0 likes, 3 replies

3 Replies

  • Jan999
    Jan999 Ginny31

    Posted

    Ginny go back to your doctor and ask for a referral to a Urogynaecologist. You can't carry on like this, you must be so miserable. 
    • Ginny31
      Ginny31 Jan999

      Posted

      Thank you for your support. It's horrible situation. I know it's not medismally serious but it has a huge impact on life. I don't know why they are so reluctant to refer me. I've been asking for help for years and insisting for months for a referral. They say I won't get help because of my relatively young age which makes no sense as it affects fertility and plenty of women with endometrioasis are in their 30s. Even if it's a costs thing which I suspect it is - it dones not make sense. They've now tried so many drugs and I've ended up in a&E on out of hours GP''s advice twice and collapsing an ambulance being called anther two times. All this can't be cheaper than the right referral having been made earlier.

      I did see a urogynae doctor years ago when my incontinence was first lookEd into and I had investigations re bladder etc and I've had a pelvic ultrasound but I really want the referral to the endometriosis clinic. The a&E doctor has told the GP she wants me to be referred. Just hope it'll happen this time. I see the GP in a couple of weeks (soonest prebookable appointment). The GP is good for other health problems and I'm grateful but this is really difficult.

    • Ginny31
      Ginny31

      Posted

      Just an update that at last, hopefully, the endometriosis is being investigated further. I collapsed again twice and was taken to a&e and was in hospital overnight, to cut a long story short. I've been referred to haematology because it appears I have a blood clotting problem and to the endometriosis clinic. Inexplicably the appointment with them was cancelled by letter the next day - I'm going to phone them tomorrow and praying this isn't another set back. Today I had another ultra sound scan external and internal.

      Thank you for your support. I'm thankful that finally things are moving on please God.

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