Update

Hi ladies, I mentioned in my last post about discharge and pain I went to a&e and they send me to the surgical team with suspected appendicitis. After the surgical team seeing me for 2 days and sending me for scans they decided it wasn't appendicitis, they didn't find anything on the scan they said it was my endo flaring up.

So just an update iv come off my back to back pill after 4 months Iv started my first period this weekend and I have also developed a kidney infection I am in agony not just with my period but the infection. This is what happened before partly a reason I was advised I stared the back to back pill I had infections pratically every month. Whilst I have been on the pill no infections and first period and infection, is it possible my endo could be on my kidneys or bladder?

Thanks for any advice in advance ladies xx

3 Replies

oldestnewest
  • Hi - have the infections always been proven with blood tests as you could have a condition called interstitial cystitis that can flare up at period time and is often present with endo, although unrelated. This is the NHS page on it:

    nhs.uk/Conditions/interstit...

    I had a quick scan through your posts and in your first one you described your symptoms as 'bleeding after sex, pain during sex, constant tiredness and such severe pain in my back and down my legs etc'. These are all suggestive of deep endo behind the uterus that can develops when undiagnosed endo is left or allowed to progress under the suppression of contraceptives. It is time that someone took you seriously and suspected deep endo needs to be dealt with by a specialised endo consultant as it is routinely missed in general gynaecology, even at a lap. Your choices depend on where you are in the UK. Where are you?

  • Hi my infections have always been confirmed with blood tests and urine tests. I was under a urologist for a while but he couldn't find anything apart from scarring on my kidneys which some docotrs I have seen seem to be conflicted about whether it's scarring or not could it actually be endo showing up on my kidneys?

    I really wish someone would give me the answers I need I'm under Gynocology now I am just praying they decide to do a lap.

    I am in the Leicestershire area so not sure what's near me? Thank you for you help xx

  • Endo is very rare indeed on the kidneys as they are outside the peritoneum (the pelvic cavity). And endo itself would not cause infections. It is an immune system disease though and women with endo will often tend to have more infections due to the underlying immune problems. Endo is linked to oestrogen and when you are on the pill your levels are much lower than with the normal cycle. Endo quietens down and it seems likely that this may free up the immune system to cope with infections better. For me it was respiratory tract infections that only started once I came off the pill and it was then that endo was triggered as my oestrogen levels were high again for the first time in many years.

    Endo can be on the top of the bladder more commonly but you would usually expect endo to be elsewhere as well and the symptoms that you described ('bleeding after sex, pain during sex, constant tiredness and such severe pain in my back and down my legs etc') are classic for rectovaginal endo that probably hasn't even been considered yet and as I said before is regularly missed in general gynaecology.

    As you are in England you have a right to a referral to a centre anywhere in the country. Have a look at my post on the referral pathway, how to find a centre and those on rectovaginal endo and endo on the uterosacral ligaments to see what you identify with.

You may also like...