Hey guys,
So this is my first time posting here, I am currently waiting for keyhole surgery to properly diagnose my endometriosis. Recently I have had alot of pain in my bladder and kidneys with pressure and never feeling like I don't need to pee. Has anyone else experienced this that can give me advice as I haven't slept in 2 weeks with the feeling of needing the toilet with the pain and am at the end of my mental tether now.
Thanks guys!
Hi, So I was diagnosed within 3 days of experiencing extremely bad pains like contractions described by the gynae and was lucky enough to be diagnosed with endo within the space of 3 days whilst being admitted.
Long story cut short, I waited 11months to get my first surgery to remove endo behind my uterus,and left ovary. I had my surgery Aug 2019 and recovery went all well no complications. But what I had noticed was I started getting pain everything I emptied my bladder and after opened my bowel. It would last around an hour or so. I didn't think anything of it as I thought it was just my recovery from the surgery as I had endo also in my bowel. Whilst I was post surgery I thought it was just recovery pain. I went in for my 3months follow up and explained to my endo specialist that I been getting these pains in my bladder and bowels to the point I can not sit i have to stand, he did a few tests and told me I had a bladder infection which is known as a silent infection as I don't have burning sensation when I urinate. I was put on antibiotics for 1 week and I can say once I completed this antibiotic I had no pain since Nov 2019.
Till last week, I had a period that was running for 3 weeks straight and with this locked down I was very worried I will not have enough sanitary towels left but luckily the period stopped. I the started getting lower abdominal pain again like the ones I had in November 2019,I called my gp for a telephone appointment and he said to me its bladder infection and its common to get it after having period. So I was put on a high dose of antibiotics for 3 days which I completed last week Thursday and now feel so much better.
If you can try and book a telephone gp appointment i know with the current situation right now the doctor will not ask you to come in for a urine test. But you dfoz will need antibiotics to clear it up. I dunno if having endo is related to being prone to get bladder infection, I am 31 now and all my life never had UTI till I was diagnosed with endo in 2018 I have had two UTI and jts a lot painful when you have endo.
Im so glad I’m part of this group, I have endo waiting for my lap and a month ago my husband has to do a 999 call as I wasn’t even able to talk due to the pain, it was presenting as a kidney infection and bladder infection.
but I’ve been feeling awful bladder pains and kidbey pains for months, I get no burning wee just this awful full, pressing and inside burning pain, with random sharp stabs, so bloods and urine come back clear which is so frustrating I keep looking like a kidney fraud as well as an endo fraud. I’m used to be dismissed but this was awful..
Can I ask what antibiotics your GP gave you and what they said it was? I will ask my GP for some to try and help me.
It’s calmed down but everyday without fail I get some bladder pains.
My Journey started at the age of 28,and if I am honest I found it really difficult to deal with, no one in my family had endometriosis nor anyone I knew. So I couldn't turn to anyone with experience, I was first under gynae at my local hospital and even then I felt emotionally exhausted because i was ask them questions about endo and they would say 'we still do not now, we still discovering how endo exist' and it really mentally and emotionally affected my well being. I then came across this site and also realised there were some ladies that had the same issues like me. That is a sign of relief. But I also got telephone counselling through my work insurance to support me.
I felt I wasted 11months under gynae hence why my endo increased and spread to my ovaries. I had 9 hospital admissions, due having flare up every 2 months, the pain would start on my lower abdominal area and get worse within 4 days, codeine was helpful at the start but then it got to the point even codeine wouldn't stop the pain.
Hence why I would end up in hospital for 2 weeks on morphine.
I then sadly had a bad experience last year march where the hospital overdosed me in morphine and I had a cardiac arrest. After that day I discharged myself under the gynae care and researched on a endo specialist who knew what they were doing.
My endo specialist knew exactly what endo was, he could relate to the pains I had and within 3 months put me on a mri scan, got my results and done my surgery. all within 3months unlike a gynae specialist who wasted 11months putting me on pain relief and increased my endo to a stage 4.
The pain your having is exactly what I had, these were during my flare up. Yes I never got the burning pain when peeing but had pain all over my lower back, bowel,kidney, expenditure,ovary and uterus area it was horrendous it would get to the point where I was unable to walk, and that's when I would end up in hospital to get them to put me on pain relief using morphine.
My antibiotics was called Nitrofurantoin 100mg. This was the powerful one my gp could give me, I had to take 2 a day for 3 days.
If you book a telephone appointment with your gp due to the current covid circumstances and tell them where the pain is coking from and especially after emptying your bladder they should be able to give you prescribe you the antibiotics and you just have to collect the prescription. When you book it tell them you reckon its UTI. They will go through a little assessment over the phone such as where is the pain when does it start. Also mention your due to have surgery.
Hot water bottle in the meantime helped me. I am now currently using cocodamol for very severe endo pain.
x
forgotten to mention as you are waiting for possible endo diagnosis it helps to tell the gp this. Tell them your pain is mainly lower abdominal area. I really hope they prescribe you some antibiotics because POSSIBLE UTI should not be left untreated.
I have been on 2 different antibiotics including the one you were on with no change in my symptoms 
are you with a endo specialist? Which comes under bsge centre?
We don't have one in northern Ireland that I can find
oh no, have you tried to look on the bsge site again?
Hi
I had this most of last year and still do at times. Pain ends up more kidney area. Sometimes UTI, most not. Bladder and kidneys ok, endo diagnosis end of the year. Symptoms can be related. Best talk to GP/ out of hours though, their service is still running and it’s important not to miss infections.
It’s one of the worst feelings.
I have been on 2 different antibiotics with no change in symptoms
They should ask you to drop a urine sample to check. If two lots haven’t changed anything might not be, but dr should check.
I realised end of last year it was sitting in a chair at work was causing a lot of the frequency issues.
I am just back from A&E they said it's not an infection
Did they make any suggestions?
Probably not, if they weren’t busy might have given them something to think about.
They want my GP to contact the gynaecologist to investigate
I've got endo but never had any bladder infections or anything. Sometimes it hurts when I wee and as you said, I never feel like I have an empty bladder? I don't believe from my laprascopy that the endo was associated with my bladder (this was a year ago though?) so I found it weird that I've been like this for the past year.
When I'm downstairs on a night, getting another drink or food, I will nip off to the downstairs loo and then get the food/drink then have to go back to the loo afterwards as it feels as though I need to go again. It's really odd! So I get what you mean, but unfortunately I have no answers for you. Just another thing added to the weird things my body does list.
Good luck with your keyhole 💛
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