Kidney pain / frequent urination in endo?

[ellisicg]

Hi!

I'm new to this forum so hope I'm asking in the right place...

I haven't been diagnosed with endometriosis yet as I am still waiting to be seen at the hospital but it is expected. I'm so frustrated with the lack of support by my GP but it sounds like this is quite common amongst endo patients!

I have really come on here to ask some advice regarding symptoms. I originally went to my GP with the complaint of very painful, irregular periods and pain during sex 2-3 years ago. This has been ongoing since then however in November last year I started to experience lower back and kidney pain, and the urge to pee more often at night time. I have contacted them a number of times and they've started me on a new contraceptive pill. So far all it's done is make me bleed for 14 days straight! I know a breakthrough bleed can happen but it's the kidney pain that is really getting to me at the moment. I have had a urine test today and there is no infection present. Does anyone else experience these two problems with endo??

Thank you!

Ellis

[LME5]

Hi Ellis, I'm also new to this forum Yours is the first post I've read and it really resonated with me.

I'm no expert, just an endometriosis patient.

I had a laparoscopy about 5 years ago which officially diagnosed me with endometriosis. Endometrial lesions were found on my left ovary, bowel and bladder. I was only sent for the surgery because I had a cyst on my left ovary measuring over 5cm, which appeared endometrial in nature following an MRI scan of my lower abdominal area.

Before and after the diagnosis/surgery, I experienced similar symptoms to that which you describe. Whenever I would break from the contraceptive pill for a bleed, I would experience severe pain in my lower-back to the left-side, which felt in-line with the location of my kidneys. I could only describe the pain as stabbing, like nothing I've ever experienced before. It landed me in A&E a couple of times because of the severity. As with you, they tested my urine for infection. The results were negative, the A&E nurse tried to calm me, as I was crying in hysterics and just sent me on my way. I still don't know what caused the pain because no doctor officially investigated the issue. Fortunately, it has since sub-sided - mainly due to having no periods by taking the pill continuously with no breaks.

I also experience frequent urination, for years now, since being diagnosed with endometriosis. Gynecologists and even those who "specialise" in endometriosis working for the NHS, claimed it had nothing to do with my endometriosis. Yet, they offered no alternative cause. My GP tested me for diabetes and other possible links, all of which came back negative. I personally believe it is endometriosis-related as I have endo on my bladder.

My advice to you - push your GP for a gynaecology referral and an ultra-sound scan. With the NHS you have to almost play out a drama for them to take you seriously - exaggerate your symptoms to the extreme, how it's affecting your work, your quality of life, etc.

Unfortunately, doctors in general believe women are supposed to suffer when it comes to gynaecological issues, which is not the case at all. One gynacologist suggested the pain I was experiencing might have been "sympathy pains" because I informed her that my sister had the disease... Yep, I had to do everything in my power to not leap over her desk and smack her in the face. They will gaslight you to try to make you believe it's all in your head...

But that's enough of my rambling! First get the gynae referral and get the scans booked in. Then take it from there.

Hope this helps,

Lena x

[ellisicg in reply to LME5]

Thanks so much for getting back to me... this is super helpful! Managed to get an ultrasound booked for pelvis and kidneys... still waiting for my gynae appointment. Fingers crossed it won't be too long! Thanks again

[LME5 in reply to ellisicg]

No worries!! Hope you get some answers xx

[Lolpolaza]

Hi Ellis, my kidneys suffer badly too! I’ve had two trips to A&E this week for classic kidney infection symptoms but no infection in urine sample. I get cysts on my bladder so I can only assume it’s that. I’m currently on painkillers, antibiotics and anti sickness tablets whilst further investigations happen. Get booked in for a scan

[ellisicg in reply to Lolpolaza]

Thanks so much for getting back to me... this is super helpful! Managed to get an ultrasound booked for pelvis and kidneys... still waiting for my gynae appointment. Fingers crossed it won't be too long! Thanks again

[EndoJaz]

Hi I also get pains in my kidney area and my right groin. Had excision surgery last September and hysterectomy 4 yrs ago. Pee samples come back inconclusive whatever that means so have given up now and drink warm water with cyder vinegar which seems to help. X

[LifetoCherish]

Hi Ladies,

Firstly, sorry for the essay, but I want to help if I can.

I have very painful periods where I am in bed for the first whole day and it's been working up to 2 days. I am 39 and was on the pill (Cerazette for 11 years). I went on it purely for the pain at 21 years old. I came off it in September 2015 and was pain free to start with and slowly but surely it’s built back up with the pain level – exactly like when I started my periods at 13 years old. 24 hours before my period is due to arrive I also get the left hand kidney type pain. I read somewhere that endo can affect the kidneys. I also have a constant need to go to the wee.

I got to my wits end (with lots of ailments I have) and did lots more researching, forever googling trying to find success stories from infertility and painful periods. Eventually I found an American lady who sold her story to a type of diet programme over there. She swore that cutting out dairy gave her back her fertility and she was completely pain free after a year of cutting dairy out. If anyone wants the article I can see if I can find it.

I also found 3 books, both of which said to cut out gluten and dairy. The books are at the bottom of the page, but need to give you my background to understand why these books first:

I have cut gluten and dairy completely out of my diet and I won't lie it was very hard as I love cheese and also sandwiches are my favourite lunch item! I am going through IVF and I have been told I have a small amount of endo after a private MRI via the IVF doctor that I paid for (£400 if anyone is thinking about having one).

For years I have suffered with psoriasis all over my scalp and my hayfever is all year round now - both are autoimmune disorders. They are now beginning to believe that endo is also an autoimmune disorder. When I was 3 I was very ill with a virus that caused my red platelets to attack my white immune platelets. This is called ITP, again another autoimmune disorder.

They are beginning to realise that gluten and dairy have many different levels of allergies and that they can make your autoimmune system step up when it doesn’t need to. Hence skin issues and internal issues. Google the words gluten and frequent urinating – you will see one example of how they are learning it’s affecting internally, not just skin (skin is an organ too).

Since cutting out gluten and dairy around June last year with a treat of a sandwich or a cake once every 3-4 weeks, I have found my periods are lessening in pain by about 5% each month. I am also taking Magnesium with B6 from Wilko’s each day. I started taking this 2 months ago (Jan 2021). The frequency for the loo has pretty much disappeared and the kidney pain hasn't been around for the last 3-4 months.

This could be from the diet or it could be from having IVF and periods being slightly different (although not the latter, really in my opinion).

Again,sorry for the essay but I just wanted to post what I am doing atm and hoping this news can help others if it really is the diet.

If there is one book you buy then I would suggest the period repair manual – I have sent it to friends who suffer irregular periods, endo, pain etc. I wish I had been sent it when I was 13 years old!

The books:

Period Repair Manual by Lara Briden (a naturopathic doctor who has 20 years experience in womens health).

Radiant by Hannah Sillitoe, re psoriasis.

It Starts with the Egg by Rebecca Fett

All books suggest going gluten free and dairy free.