Potential endo on bladder, none found on ultrasound.

[mils_]

Hi! I have been told that I have potential endometriosis on my bladder! I suffer weekly and sometimes daily with a painful bladder and UTI symptoms and have also suffered with heavy bleeding and painful periods since i have been 9 years old.

I have an appointment with my GP today about my pain. I am currently on the mini pill, was on the depo injection but was put back onto the mini pill as the injection was just awful. My symptoms have got gradually worse over the last few weeks to the point i am in agony everyday which is not normal.

I have an internal ultrasound done a few weeks back for endometriosis, PCOS and fibroids as a lot of this runs in my family unfortunately. My results showed that everything looked normal which is positive but at the same time really frustrating as I have suffered every month now for over 10 years now.

I have been referred to gyne a few months now and now on the waiting list. I spoke to my GP today about my severe pain and bleeding and for the first time a GP has not shut me down about the idea of endometriosis and PCOS and has very kindly trying to make my referral more urgent which I understand may not work but I was wondering if anyone knows like a normal length of time ti wait for my referral? I know it could be months but I am going crazy here not knowing.

[Tangoandmax]

Hi!

The likelihood that your previous ultrasound was carried out by someone who is experienced enough/has a special interest in endometriosis is possibly quite slim. As such, don’t let that they didn’t locate it previously dishearten you.

I had 4 ultrasounds through GP and 2 with the hospital over the past 8 years which all said everything was fine. I believed them and they were absolutely wrong. The 8th was carried out by an experienced sonographer who confirmed it was highly likely I have adenomyosis and endometriosis. A following MRI, reviewed by someone with the special interest confirmed adenomyosis, deep infiltrating endo, my uterus is completely tethered to my bowel - amongst other things.

You know your body. Don’t let them fob you off. Keep a diary during your wait of any/all symptoms, it really does help you make them take it seriously. Also request that all scans are carried out/reviewed by qualified personnel, either their resident endo specialist or someone with a special interest. You shouldn’t have to, but standard gyne/radiographers honestly just do not know what they’re looking at/for from my experience.

I was told it’s normal period pain, ovulation pain, UTI and IBS. All of which it was not. I’m sorry you’re suffering with daily pain. You’re not alone. You’re also not alone in the hellhole that is NHS waiting lists, it’s unbelievable we’re left to live with piss poor quality of life for unbelievably extended periods of time. My last referral was made Nov 22. I got my appointment Sept 23. Currently stuck waiting for inital consult with a specialist endo centre witch is another 6 month wait.

Keep trying to remind myself, one day it will be better 🤍

[mils_ in reply to Tangoandmax]

Aw thank you so much for your reply and experience! I will definitely keep a diary now of any new symptoms and any reoccurring ones! It honestly sucks how there’s no improvement on the investigation into women’s health but thank you for taking the time to reply to me with some helpful advice and I hope you get the help and advice you deserve and need xx

[Croydebay]

could this be intercistital cystitis as this is quite common with endo so my consultant has just told me as I’ve always suffered with bladder issues since being diagnosed with endo. Very similar symptoms to yours but it’s not constant everyday I have flare up with it.

[mils_ in reply to Croydebay]

Ok that’s interesting thank you! I’ll def research more into this! X