I can’t stop peeing : when I have a flare... - Endometriosis UK

Endometriosis UK

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I can’t stop peeing

Littlebug77 profile image
20 Replies

when I have a flare up or in pain I need to pee constantly 5 to 10 mintes if I don’t the pain and trying to retain the pee is unbearable. This is always accompanied by spotting, severe abdominal pain, nausea and constipation.

I take cranberry supplements and drink it. I try to stay dehydrated but having to pee all the time especially when exhausted is so distracting. I’ve tested myself for UTI nearly every month it is clear.

Dr has suggested blood tests to be done.

Also gained 2x my weight in 8 months in mirena and struggling to loose weight as I’m in bed 2 weeks of the month any ideas so I can get my Laparoscopy.

My pain had seemed to settle back in June July but it’s been horrible again constantly bleeding I’m august :(

any advice is much appreciated thank you for reading

20 Replies
AllthatGlitters profile image

I have been like this for years as I am constantly needing to pee, can’t pass a toilet without going in. I just assume I have endo on the bladder. Nothing makes it better for me.

PS love the kitten photo x

Heloo85 profile image
Heloo85 in reply to AllthatGlitters

At what point are you like this?

You see, after being lied to for years, having my worsening symptoms dismissed as IBS and fibromyalgia, to hit deaths door, to take 12 months to finally bounce back, to then slowly deteriorate again while on the pill, I have switched things up! I have stopped all estrogen! Instead of the severest constipation, and lowering amount of urine, I am now flushing well while healing! I can tell I’m healing cuz I’ve gone from 6st 4, collapsed veins, dehydrated, rashes, pain, burning acidosis lungs, can’t poo won’t poo, high inflammatory markers, high clotting markers ect ect, to now over 7 stone, and for the first time in years I can almost touch my toes again 💪.

So, my flushing happens either during a peak, ie ovulation, or a couple of days before my period! So ovulation is estrogen peak! A couple of days before your period is when your estrogen levels fall! So I’m plagued with polyuria or I almost poo myself! It’s a bit much, but as the old saying goes, it’s better out than in! And believe me, after wasting to the point of looking like a cancer patient and feeling so bad I can’t even put it into words, it really is!

Do not treat it! Let your body do what it naturally does, which is to try and heal itself! Keep up with plenty of antioxidants and fluids! Healthy fluids such as orange juice, pomegranate juice and water!…

Yes it’s a pain, but believe me, after living the other alternative, which is slowly dying, I much prefer almost shitting myself! Xx

Escapologygirl profile image
Escapologygirl in reply to Heloo85

Yes I had a horrible experience with the mini pill and the decapeptyl injections and ballooned in weight very quickly and nothing shifted it. My GP agreed with me that synthetic treatments just don't suit me and like you I've just let my body heal myself. I jokingly call my peeing problems latchkey incontinence as I can't leave the house without peeing or pass a toilet. The pooing is extremely painful it feels like either my insides are falling out or there's a hot knife moving around.

Littlebug77 profile image
Littlebug77 in reply to Heloo85

What is flushing how do I do this I’m in so muhc pain

Heloo85 profile image
Heloo85 in reply to Littlebug77

Right! So we are toxic! For whatever reason we are estrogen dominant! Estrogen is inflammatory!

You no doubt have widespread pain!.. because it effects everything! The human body is adapt to try lower toxins by pooing and peeing them out! But the thing about estrogen it slows down the process! So you usually become constipated! It’s so estrogen levels rise! You will also notice sometimes you’ll piss like a racehorse and other times you will piss far less than you should! Or if you’re like me, and busy, not even notice!

So what we want to do is aid our body to do what it wants to do, and that is to rid ourselves of toxic build up! So we shit daily, pee normally!

So, we start the anti-inflammatory lifestyle! That starts with fish oil!..

if you’re constipated a lot, which you likely are, you need to set your bowel back! You do that by drinking at least a litre of apple juice a day! It’s a mild laxitive!..

you take deep baths! Deep! 30 mins before drink a litre of water! Up to your neck deep! This will lower any toxin shit in your body! You will want to pee, so pee! Shower after!

You need to increase the amount of antioxidants you eat to bind to free estrogen! Blueberries, blackberries and black grapes! But increase all low glycemic fruit to your diet!

You need a multivitamin/mineral!

You go back to a very basic diet! Whole foods, nothing more! You cut all wheat and limit dairy!

Hot lemon and ginger is a good drink!

Give it a go! Worked for me! Gone from deaths door back to the best I’ve been in 6 years, since my Endo journey began xx

Heloo85 profile image
Heloo85 in reply to Littlebug77

I went from that….

Heloo85 profile image
Heloo85 in reply to Littlebug77

Because of that!

Beyond stage 4 Endo….
Heloo85 profile image
Heloo85 in reply to Littlebug77

Spent 2 years like that!

Post sepsis I was given 3 month Zoladex! Combined pill!.. I can’t even describe how bad those 2 years were!.. Psychosis, insomnia, rashes, immense pain.. OMG thinking about it makes me feel sick! All because 35 is the age a woman’s estrogen levels top out!

Heloo85 profile image
Heloo85 in reply to Littlebug77

I wasted to that! Not an ounce of muscle on me! All treatment stopped at this point! Inflammatory marker going up! Clotting markers going up! Blood pressure going up! I had a chest x ray to rule out lung cancer…. like poorly, poorly! Referral made to Christie’s!….

Heloo85 profile image
Heloo85 in reply to Littlebug77

It’s been a very long, slow and painful journey!.. It’s taken me months to get to this stage, but the only way is up! I’m not selling snake oil, give it a go! Xx

Coming back! Me tonight! 💪 xx
Heloo85 profile image
Heloo85 in reply to Littlebug77

So my full routine is,

2 boiled eggs or a bowl of porridge with fresh fruit for breakfast! Some days I skip if I’m busy! Energy levels are increasing, but not exactly there yet! I’ve been on deaths door for 2 years, so as you imagine I ain’t 100%.

I only eat meat, veg & fruit! Obviously I have fallen off the wagon a few times and had a couple of biscuits!

Alcohol is a NO go! If I go out I drink fresh orange juice!

I take 2 grams of fish oil daily! Sometimes up to 4!

I have remained in work, and I’m still in work, as staying active is important!

I limit coffee but not quit it!..

Take a high strength vit/min daily!…

I’m stage 5 and beyond! If I can do it, anyone can! Xx

Avourneen profile image

Your doctor should be sending you for an urgent scan to see exactly what is wrong as you may have Endo on your kidneys and / or uretha. If you don't get it looked into urgently you could have big problems. Why is your doctor dragging his/her feet ? I can recommend a really good place to get a scan from a gynae expert if you want. Get blood tests too but you need a scan urgently and it's important that it is done by someone who knows what they are doing.Drop me a line directly if you need more advice. My sister lost her kidney due to this it's not something to mess about with.

Heloo85 profile image
Heloo85 in reply to Avourneen

I’ve had Endo wrapped around my ureters for 6 years, actually longer than that, but that was when it was discovered although it was treated by stenting 7 years prior to its discovery! And they left it there 6years ago, and they are definitely not ‘rushing’.. The reason for that is because you can’t be cutting out ureters until the kidneys are hung! You can’t move the bladder up!.. It’s attached by a short urethra!.. You can’t lengthen it!..

Urine is water! Even if the ureters are narrowed, it can still get through!.. cutting disease off ureters will leave you with bags! Which will shorten your life span! Permanent ones! Xx

Heloo85 profile image
Heloo85 in reply to Avourneen

There’s 2 medical emergencies that all people need to be aware of! And that’s urinary retention! Which is when you produce little to no urine! And bowel obstruction! Which is when you poo little to none!

They are the only medical emergencies! The rest can be treated by a normal medical pathway and by keeping up on fluids!.. You won’t die because your body is still able to flush waste! Xx

Littlebug77 profile image
Littlebug77 in reply to Avourneen

I’m based in Scotland and I’m constantly working before uni so doubt I will be able to travel but I’m happy to contact gyno for some advice my life is a mess I’m hanging on by a thread

Pinkmice profile image

Hi You may have some endo on your bladder - which means that you feel pain

if you retain too much pee. You are doing the right thing by keeping your

liquids up - Alot of us women having the same problem even now!

May need to get your GP to get you into a specialist - to explore the cause and

put your mind at rest !

Endo is an life long ailment - which like you us women have to put up with its many

problems which that we must over come.

Stay safe,stay well,big hug

Stitchrunner1 profile image

Your problem might not be linked to endometriosis.. It might be a direct issue with your bladder. This is not a diagnosis, only a suggestion: you may have painful bladder syndrome, I see you are in the UK. The NHS website has details of it. If you have ever had a catheter the chances of it being this are much greater still. It is easy to mistake painful bladder for other things because it mimics other pelvic pain. It is a relatively newly recognised syndrome to the UK but it has been know for quite a while in the USA. If you do have painful bladder, it is very easily treated. The first line is medication. In the mean time try using cystitis medication that you get in the packets. It softens the acid in the bladder and makes it less painful to pee. One other word from the wise, ( take that with a wink), is never restrict your fluid intake to stop you peeing. All that will do is make the acid stronger and the pain worse. Been there done that. I had great relief when my bladder issue was solved. Good Luck.

Sabrinacolada profile image

Hi there,

I currently have the same issue of urinary urgency, constipation. But I have already had my laporscopy which found severe endo ( stage 3-4). The symptoms started a month or so before the laporosopy. There was adhesions to the sigmoid colon and bladder ligament. The ovary and uterus where encased in endo scarring. Thus I have been now reffered to an endo centre.

When is your laporsopy? Is this your first one to diagnose and grade endo? Or is this a repeat one?

Ultimately urinary urgency can have many sources but in my case without laporosopy there was a risk of permanent damage to both the colon and bladder. Deep endo can invade bowel and bladder tissue thus should be ruled out accordingly.

Other things should be ruled out as advised by some of the posts above e.g. urinary, renal disease etc. Which is why I your doctor has suggested blood tests and urine etc. I had all of this undertaken before lap.

Is your laporoscopy via an endometriosis centre?

In my case I had mentioned to every doctor my concern for urinary signs, I had been misdiagnosed with a cyst as the source of pain ( not a cyst but an ovary encased in scar tissue found at endo). I said my concern is adhesions from endometriosis which could cause permanent damage thus laporosopy was arranged. Thus express your concern of these symptoms. I am not sure of your circumstance regarding if you have already been diagnosed or staged yet but I would push for them to investigate.

I am for natural treatment as some of the posts above but my opinion is rule out severe disease, get appropriate staging for endo and support medically. There is no harm in natural treatment alongside or after but do not compromise long term health to just let your body heal itself. Our bodies are amazing but some diseases / deep lesions etc need appropriate medical / surgical intervention. Or at least investigations to find the issue in order to manage this.


Littlebug77 profile image
Littlebug77 in reply to Sabrinacolada

What natural treatments do you recommend I will try anything to relieve this pain. And I’m waiting for my first appointment. I got the coil out in and I gained more than 75% of my body weight in 7 months it’s hard to work out when I’m constant in bed exhausted or vomiting due to pain

Sabrinacolada profile image
Sabrinacolada in reply to Littlebug77

I am so sorry that the pain is this bad. I understand how awful this is I have had about 2 months of consecutive pain. I hope your appointment is soon. As I said you need a diagnosis and staging and with your symptoms to rule out higher stage endo in order to manage this better. With the help of a multidiscipline endo team if stage 3 or 4. Also for the urinary signs ensure you get them worked up like your doctor had said via bloods etc.

In terms of natural treatment my diagnosis is more recent thus I have started only a few so far. These are based on scientific papers I have read but this is not a much studied area with conflicting answers ( one study will say a positive effect and then others contradict this!) however some women will swear by them and I think anything that will do no harm but may have a benefit is worth trying. But this is only an adjunct I am using to modern medicine if you are in pain even on medicine this should be discussed with your doctor.

The first thing I am trying is reducing anything that could cause further inflammation. Given up caffeine and alcohol. In my case I have a dairy allergy. Prior to my diagnosis I would eat the odd slice of pizza, chocolate etc! But I am forcing myself to be strict.

The second thing with diet is oestrogen is involved in the progression of endometresiosis. Thus hypothetically dietary components that decrease the oestrogen levels can be used. Omega 3 is one supplement I have begun, I have also try and eat natural source e.g. pumpkin seeds, oily fish and dark green leafy vegetables. It has been suggested that omega-3 and omega-6 fatty acids affect biosynthesis of active prostaglandins (PGE2) which result in relief of pelvic pain. Conversely I have also tried to stop/ limit my intake of saturated fats, and processed food where possible ( hard because I have a sweet tooth). My goal is more of a Mediterranean diet. However yet again no research has proven any of this conclusively but given I have issues defecating due to endo a balanced fruit and veg rich diet is already helping maintain regularity. But I also think it is important not to be hard on myself for days where I may lapse.

I have recently bought a TENS machine but have only used it once. There is one study I found that had very promising results in a complementary treatment in pelvic pain management ( but was a very small sample size of 22 women). However TENS is already used for musculoskeletal conditions/ other areas with proven results. It is hypothesised that the electrical impulses may block pain signals travelling through the nerve or they may be involved in increasing endorphins. You would have to ask your GP if ok ( can't be used for certain other conditions e.g. heart disease, pregnancy, history of seizures ). The machine I have is a 20 minute cycle. At night my pain is often worse thus I find a good old fashion water bottle helps.

I had been hospitalised and recent surgery ( removal of scarring and adhesions, freeing the repro tract, sigmoid colon) thus I am gradually increasing exercise ( I was extremely active but prior to surgery even walking 30 mins would drain me for hours). I have gradually been able to increase my fitness levels. Since exercise gives off endorphines this is so important for mental health. But I appreciate when in so much pain this is not always possible, I was bed bound for a few weeks and its still taking time to regain strength again. So be kind to your body. One error I have is on a good day trying to be wonderwoman and overdoing things I find the day later I am worse. I have read somewhere it is better for pain management longer term to have a consistent level rather then the peak and trough like me of being wiped out one day, when better doing so much then I wipe myself out the following day!

Finally I haven't got to this stage yet but I am hoping when I finally get my endo specialist appointment I can find out more regarding pelvic floor physio. I suspect I may have to pay for this privately - when I get the chance I was going to check out pogp.csp.org.uk to look into it furthur.

And that is all so far I have done alongside conventional medicine. I have links to these papers if you want to read any ( I appreciate not everyone wants to read long scientific journals! ) I hope any of this helps and I hope your appointment goes well and you get the help you need xx

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