Endometriosis or kidney disease? - Endometriosis UK

Endometriosis UK

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Endometriosis or kidney disease?

Pengkie
Pengkie

Hi everyone! Every month, 2 weeks before my period I have been experiencing lower back pain - this month the pain is mostly on the left side, numbness/tingling on left leg, frequent urinating and the feeling of pressure in my bladder and the feeling of dysmenorrhea. Felt horrible the whole time thinking I am going to be sick. I had my urine test and came clear. My creatinine test is normal too. I was diagnosed with PCOS too 10 years ago. I am now a diabetic - type 2, and hypertensive resulting from PCOS.

10 Replies
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Wow I could've written this myself! Two weeks before my period which is generally during ovulation I get this too. This week has been particularly bad hence being back on here.

I'll share my story in case it helps. I'm on my second surgery with an appointment next week to see if I need another. I've had endo excised from my uterosacral ligaments, ovaries and pouch of douglas. I've also had bilateral uterolysis which is essentially freeing my ureters (tubes from kidney to bladder) from scar tissue/endometriosis.

I had some bloods taken last year which revealed my kidney function was poor. My doctor referred me to have a kidney ultrasound which showed swelling and slow draining of my left kidney. I'm also booked for a CT scan. My doctor thinks the endo may have come back on my ureters which is why my kidneys are playing up.

Be persistent with the doctor as a lot of them don't fully understand how common endo is blocking ureters. If left untreated it can be really bad for your kidneys.

Good luck and feel free to ask me anything, I feel for you xx

Pengkie
Pengkie in reply to chloe3011

Hi! Thank you for your response. I haven't got the chance to visit my gynaecologists due to the current situation of the pandemic. I might try to book by next week.

Anyway, do you mind sharing your symptoms?😊 and the pain in your back is it constant?

chloe3011
chloe3011 in reply to Pengkie

My symptoms are left side pelvic pain, ovary area, left flank pain that feels like a dull ache most of the time but during ovulation it's tender and sore. The pain radiates down my leg/legs sometimes all the way to the foot, it makes walking uncomfortable. When it's really bad I feel nauseous and light headed x

Hey! I guess it could be either. I myself had most of these symptoms and it turned out to be Endo, including on my bladder. It was removed through excision by an excision specialist and I felt a world of a lot better. Changing my lifestyle to being natural and holistic also completely turned the tables for me. Hang in there and hope this helps

Krithika
Krithika in reply to Krithika

I also have pcos!

Pengkie
Pengkie in reply to Krithika

Hi! Thank you for your response. Yeah I think it's affecting my bladder. I'm getting anxious everyday. I just hope I can have a sched a with my gynaecologist next week.

Another snap here, it reads so true to myself apart from the diabetes. I always describe them as mid-cycle cramps as it is the same pain, nausea, pins and needles/numbing in my legs, pain going to the toilet - if i don't go immediately it gets worse and worse (for me it is mainly my right side) as my period. It leaves very few days out of pain and problems. It was the mid-cycle pains that forced me to the doctor after I ended up in A&E, of course I was telling myself I just had awful periods but I was getting a lift to work and the flare up came on strong whilst being forced to sit upright and I felt as if something would pop, I had been meaningto go to the doctors about mid-cycle but never found the time because of work. I was originally diagnosed with PCOS seven years back, a couple of years back they determined there was actually just a few amount of fibroids and not PCOS. I was due to have surgery to determine whether I have endometriosis this summer, delayed understandably, I'm hoping I'll have the laproscopy before the end of November- had my pre-op a couple of weeks back. Have you been to the doctors about the mid-cycle cramping?

Pengkie
Pengkie in reply to SLT82

Same here. I get that feeling too and that something is pushing my bladder inside. It's awful.

SLT82
SLT82 in reply to Pengkie

Yeah, and I'm never sure if it is possible endometriosis or kidney pain - I had problems with my right kidney, at the time I was mis-diagnosed with PCOS they also discovered a tumour in my right kidney, I had it removed and it was benign fortunately but suffered kidney pain for years but know the function has been okay in recent years.

It sounds terrible I am experiencing the same symptoms but the pain is on my right side!

Always 2 weeks before the start of my period

I have been referred for scans which have been ongoing since February but because of covid with my appointments keep being cancelled

I managed to have a telephone appointment with the doctor who has referred me to a gynaecologist

She suspects Endo again as I had a previous lap surgery in 2015 to drain a cyst and remove other bits

The pains in my lower tummy too really bothering me

Have you tried the Endo diet I’m currently researching it xxx

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