Does anyone else have severe right side w... - Endometriosis UK

Endometriosis UK

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Does anyone else have severe right side waist and back pain and has blood and protein in urine sample?

Mcfw profile image
Mcfw

I had a complete BSO hysterectomy in April. Severe endometriosis was found by general gynaecologist on urethra, rectovaginal nodules and thethering from right side bowel to rectum. He separated the urethra to remove uterus, ovaries and cervix and presumed the endometriosis would then die off without hormones.

My bowel pains remain and I have since seen a ‘proper’ endometriosis specialist at BSGE clinic who can still feel nodules and noted that no endometriosis is noted on the pathology report even though it is shown on my photos and severs endometriosis is stated in the report. I can only assume the general gynae did not remove any of it only my reproductive organs.

Anyway, I have now developed severe pain in my waist and back on the right side. I have been prescribed oral morphine for the pain this week as it has become unbearable. There is blood and protein in my latest urine sample. Does anyone else have this? Could I have endometriosis on my kidney or damage to my kidneys or ureatha from surgery?

Any advice welcome as once again my GP surgery are hopeless. I have an appointment with my endometriosis specialist in 2 weeks but feel my body is going down hill daily.

3 Replies

Did they send the sample off for urinalysis?

It’s when they send the urine sample off to the lab to see if any bacteria grows.

Uti infections have always been a problem for me. Started getting them around the time my endo started. Although they say it’s not related unless it’s in the bladder.

Things have got increasingly worse over the last 2yrs and I’m getting kidney infections every 3 wks.

My kidneys have been checked and all is ok but nobody can give me any answers apart from supplying me with antibiotics. I get awful kidney pain, fatigue, nausea. I really don’t know what to do I’ve had 25 lots of antibiotics this year alone x

Mcfw profile image
Mcfw in reply to kellymarie26

My goodness that sounds awful, I have had the pain for over 2 years but the nausea is fairly new and added to the no sleep and pain is wiping me out.

I had several infections immediately after the operation and very bad bowel problems, with constipation lasting more than 5 days at a time. I have a feeling something is blocked and not working properly, I think you start to listen to your own body after years of pain and no GP help, Ive started to work out which organs are hurting and how one side feels inflamed and swollen. I am pretty sure by bowel is partially obstructed somewhere on the right as the pain overnight is only relived when I stand up and stretch out. I then have extreme pain as waste moves from my lower colon to my rectum and near fainting pain as I go to the loo, I can pretty much feel the muscles spasm and pull as it passes. I am wondering if my bladder/kidneys or urethra have also been compromised? Now I know the original surgeon was not qualified to treat endometriosis and appears to have 'left the bad and taken the good' I am concerned he has left endometriosis and nodules all over the place. I am just worried as 2 weeks until my first NHS appointment with the specialist seems a long time to wait in such agony and we will be probably be redoing the same appointment that I had with him privately to obtain a letter to request the NHS referral from my reluctant GP practice.

The sample was analysed last week and an ultrasound requested. I already know the ultrasound will show very little if it is endo.

Thank you for sharing with me. It helps to know that someone else is experiencing the same issue and has endo. I was starting to worry that I had kidney failure as my BP has rocketed over the last 7 years, combination of overnight relentless pain, no sleep, anxiety and endo weight. All of which i am trying to get a hold of.

kellymarie26 profile image
kellymarie26 in reply to Mcfw

I hope you get answers soon. It’s awful living with pain everyday it just takes over your life.

I’m just waiting on some mri results as I’ve been having bowel issues whether it’s endo related I don’t know.

I can go over a wk without going to the loo for a BM.

I’ve also been having severe lower stomach cramps then I’m on the loo rocking back and forward until I have completely emptied.

It would be so much better if all of the endo showed up on these scans. Laparoscopy is so invasive but what choice do we have 😌xx

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