New to forum - possible endo/ bladder endo? Advice needed!

[rww84]

Hello. I'm new to the forum and at this stage, I am not sure that I definitely have endometriosis but it is suspected by my GP. I suffer from anxiety and I am getting more and more worried about my symptoms as they have been ongoing since September.

The symptoms I have are blood in my urine, urge to urinate, frequent urination, and pain in my left lower back, with a throbbing sensation in my left lower abdomen. Occasionally it spreads down into my leg and foot, esp round thigh/ groin (this feels like a hot/ burning sensation, like a nerve pain). When my symptoms are very bad, my bladder and vagina feel like they are burning and that my pelvis is stinging. I sometimes have blood when I wipe after doing a wee, accompanied by mucus. It's not clear whether this is from bladder or elsewhere. I have given mutliple urine samples that have never shown bacteria/ culture (despite me being misdiagnosed with a kidney infection and treated with a heavy duty antibiotic back in Sept). I have had an internal examination by GP, ruling out STIs etc, standard blood tests and a transvaginal and abdominal ultrasound, both which came back normal.

My urinary issues seem to be cyclical and related to my monthly cycle, but oddly (and against classic endo symptoms) they do not flare up before my period, I tend to notice them afterwards and they continue for around 2 weeks until ovulation, before dying down a bit. The back discomfort is pretty much constant. So basically I get the issues at the opposite point in my cycle than would normally be expected with endo or even IC.

I also don't have any of classic endo symptoms like heavy, long, irregular or painful periods. I am 33 and haven't taken the pill for a few years now, although I was on it from about 17-30 years old. I am pretty sure I ovulate as have been using home OPKs and having been trying for a baby now for 4 months with no success.

I have bitten the bullet and am paying to see a private urologist this weekend as I am at my wits end going back and forward to docs every month! Although I'm not in severe pain, it is becoming chronic and I have had time off work due to my symptoms flaring up and also the feelings of anxiety and depression which are getting worse the longer this issue goes undiagnosed.

So I guess my question is, is it possible to have endo or bladder endo without any of the normal pain symptoms of endo, aside from the lower back/ groin issues (which are uncomfortable but thankfully not unbearable as some of you ladies describe)?? I have a few friends that have suffered with endometriosis and although some of their symptoms have differed, the thing they all had in common was extremely painful periods.

Sorry for the long post. I have been sending myself nuts with this, as you can probably tell!! Any advice much appreciated.

[nikaykay]

Hey there I don’t know if this is helpful but I used to get recurring urinary tract infections with all the symptoms you are describing. These were cyclical and came monthly. Every time I got my urine tested no bacteria came back either. It was highly frustrating! My doctor suggested I may have urethral diverticulum which often has symptoms of both endo and UTI’s however my symptoms went away on their own and I haven’t had problems since so I never got further treatment or investigations. Obviously I’m not a doctor I just thought it might be useful to think about or talk to the doctor about for you. Hope this helped and you are able to get help soon! I’ll add a link to info on the condition for you to have a look at

muschealth.org/urology/our-...

[rww84 in reply to nikaykay]

Thanks so much for your response. I haven't heard of this condition - and having a Googled it, there doesn't seem to be much literature around. So thanks for flagging it up. It does match many of my symptoms, so I will mention it to the consultant on Saturday. All the best