Unbearable burning! :(

[points94]

I was diagnosed with extensive endo in January however have had symptoms since I was 13 (I am 20 now). The reason it took so long to diagnose was because my symptoms were similar to bladder and kidney infections.

I was in and out of hospital having multiple ultrasound scans which showed that nothing was wrong with my kidneys or bladder.

I always (at least once a week) had burning when I went to the loo and for a while after and was also urinating a lot more than a normal person! However since my laparoscopy in January the burning is getting a lot worse and every single day at some point I will get agonising burning which feels like it is inside of my vagina (sorry for the detail). It cripples me and the only thing I can do relieve it for a few hours is to drink pint after pint of water and then go to the toilet around once every minute for a couple of hours which helps the pain.

I have had urine samples done A LOT! And it only shows a slight bladder infection in around 1 or 10 samples.

I am left clueless about what could be causing this horrible, horrible pain as it was bad before my diagnosis but never this bad.

I also have nights where I go to the toilet around 15 - 20 times a night and sometimes it is so bad that I just give up going back to bed and sit on the loo for an hour!

Does anyone else suffer with this as a result of endometriosis or is it something else?

Thank you ladies! X

[Bugsy1806]

Hi I am currently in a similar dilemma . Had a laparoscopy 24th feb and same as you constant burning ever since . Just finished 2nd course of anti biotics and they have not worked.Sorry I can't give an answer as to what is causing your symptoms.

[Hidden]

Your symptoms sound very much like the ones my friend gets. I'm not saying this is what you have but it may be worth you having a look at the following website.

nhs.uk/Conditions/Cystitis/...

Best wishes,

Barbara.

[points94 in reply to Hidden]

Thank you I will have a look in to it! X

[lm330]

I have the same symptoms; although mine improved after my second lap. My ureters and kidneys were stuck to perineum and I had endo vaginally too around the neck if the womb. This is still an extremely painful area for me but my urinary symptoms used to be so bad I was basically house bound , so I have found some improvement. Where did they find endo on you? Mayb they need to do another lap? On my second lap they found lots they missed first time round. Sorry to be the bearer if bad news . Hope you find out wats triggering your pain. X x x

[points94 in reply to lm330]

Thank you for your reply, they found endo mainly in my POD, ovaries and uterosacral ligaments and was told my Fallopian tubes, vagina and liver were fine but no mention of my bladder! I am waiting for my second lap in the summer so I am thinking too that they may find some they missed the first time! My only worry is that I am currently on zoladex implants and was told they can make the endometriosis dormant and harder to detect! We will see though x

[Sunset81]

I do I get all the same as you plus I suffer with bladder infections a lot I totally understand about the burning If possible I get in a nice warm bath which helps sometimes I know it's awful suffering with endo big hugs from me him xxxxx

[points94 in reply to Sunset81]

It's reassuring to know it's not only me! I do find baths helpful too even though I was told to avoid them by the urologist! Thank you for your reply xxx

[newz]

Yes I had this too but since my excision surg endo was removed from my bladder and it has improved greatly. I agree with the above poster a warm bath was the only thing I found that gave some relief!