Doctors keep filling me with antibiotics - Endometriosis UK

Endometriosis UK

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Doctors keep filling me with antibiotics

Flowerpotgirl1
Flowerpotgirl1

I had a lap last June and was diagnosed with endometriosis but only a little bit. I feel like they missed some on my bladder and my doctor agrees but won’t help? After every period I get symptoms of a urine infection but when sent away they can’t find any infection! Has anyone got any tips and tricks to soothe the horrible bladder pain etc so I can avoid the antibiotics seeing as there’s no infection?

13 Replies
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Do you feel pain mid way when you wee and after in your bladder? Also do you feel like you aren’t emptying your bladder fully? That’s how I’m feeling but I’m 5 weeks post op x

Yeah, I have pain towards the end of peeing, it’s like a burning feeling inside my bladder and then it keeps on burning until it fills up again:/

I don’t have burning. It’s more of a pressure pain. Maybe the GP should refer you for a scan to see what’s going on, this doesn’t sound right with you x

Mines sometimes feels like my bladder is being stretched and I have to crouch over to stop it hurting! I was referred to urology and they jumped in on my lap but said everything looked normal and left me to it! My doctor spoke about referring me back to gynaecology to see if it’s endo related as it’s always after a period but he’s not done that yet and it’s been way over a year since it all started! My op was over a year ago though so isn’t related but if you think yours is op related you should go back and speak to them:)x

Hi Strphhb1,

Sorry you're still in pain.

The only relief is the removal of endo. Once it's on organs ir sticking organs together the pain will remain until it is removed.

You need an endo specialist who is skilled enough to remove the endo off your organs. It is risky as there is always a risk of them nicking the bladder, but without it there is little chance of relief.

Really hope the wait is not too long for you. Xx

Flowerpotgirl1
Flowerpotgirl1 in reply to Abbbb

My surgeon said I only had a little and not enough to cause pain then just left me to it so I think a specialist is a good idea just most of them are England and i’m worried I take time off work and spend money going for them to say the same thing:/

Thank you!x

Abbbb
Abbbb in reply to Flowerpotgirl1

That's someone that def does not know their stuff. The tiniest amount of endo can cause extraordinary pain, and a ton of the stuff in a different pain causes no pain at all.

Not to mention that left untreated, it produces it's own source of estrogen and keeps replicating. If left without hormone suppressant and removal it can stick organs together and in final stages fuse bone.

I dint say this to scare you, only to give you knowledge to pressure these lot into helping you.

I know it's hard I've had 4 operations, 2 required a lot of recovery and I'm basically self employed, but you need to get this sorted. The longer you leave it it is unlikely to get better and you could be looking at more invasive surgery with even longer recoveries!!!

Wish you every luck.

Oh and endo can show up as an internal infection. I got sent home from a&e with a bladder infection, I actually had stage 4 endo all over my pelvis, in and around my ovaries that were twisted and stuck to my womb. That might be what the test is reacting to!

Xxxx

Flowerpotgirl1
Flowerpotgirl1 in reply to Abbbb

Well i’m going to speak to my gp tomorrow and ask to be referred as he keeps saying he will then he doesn’t:/ I don’t know what to do if he says no?

Oh I never knew that! I know it often comes back saying blood or whatever has been found in it but they don’t do anything with that either🤔 it’s always confused me but never knew endo could show up like that!

Thank you! Xx

Abbbb
Abbbb in reply to Flowerpotgirl1

Well if def did for me! Its nit a standard test though so I dou t theyll accept it as proof if that makes sense.

If I were you I'd have a look on endometreosis uk, and a couple of the us sites, specifically parts where it says treatment is required to stop pain etc. And print it off to show the gp. Gp often have no idea about the disease. Also if yo usage a specialist to be referred to that would be ideal as you are then asking for a specific person, not just a general referral.

Good luck xx

Flowerpotgirl1
Flowerpotgirl1 in reply to Abbbb

Yeah that makes sense! Thank you! I will maybe give that a try and see!:) xx

First of all, physicians should not be prescribing antibiotics unless the urine culture came back positive for certain bacterial strains and should pick the right antibiotic accordingly.

If not bacterial culture was performed or if it came back negative, see a urologist and an endometriosis excision surgeon ASAP to rule out interstitial cystitis and endometriosis respectively. If you need names of extremely skilled endometriosis excision surgeons please do PM me (many work within the NHS and your GP can refer you to them)

Well the dipstick test says infection but when sent to the lab they can’t find any infection🙄 I will pm you as I have a doctors appointment tomorrow so would be great!

Yes, please get to the bottom of this because either an infection is there or it isn't. A bacterial culture is either positive or negative, can't be both nor neither.

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