frequent urination

[Livylou1112]

Hi, I’ve got 2 endometriomas on my left ovary and I find that I need to pee all the time. I wake up early hours of the morning every day needing to pee and then I can’t get back to sleep afterwards :(. Just wondered if anyone else with endometriomas has experienced this as I imagine it may be due to them pressing on my bladder x

[nanomyous]

Hi! I have endometriomas and often have to go to the loo in the early hours. It could well be pressure though I also have microhematuria so it could be that. Have you had your bladder checked out for endometriosis? Recently, nettle tea once a day seems to have helped (early in the day as it's a diuretic) and I'm waking less but check with your doctor first. Audiobooks and guided meditation are good for getting back to sleep if you don't use those already. I hope this is helpful.

[Livylou1112 in reply to nanomyous]

Thank you so much for you response! I have a pre op on Friday for a laparoscopy where my endometriomas are going to be removed and any other endometriosis that’s found so I’m unsure if I have any around my bladder yet but I suppose it may make sense if there is as I often find weeing slightly painful too. Thank you for the tips, will definitely be using guided meditation! Xx

[nanomyous in reply to Livylou1112]

You're welcome. Good luck with your operation!

[Amy2106]

Hey,

I have one in each ovary both over 10cm and I am the exact same. Last month it’s been getting worse probably because they are growing and I get up 4-6 times in the night and then struggle to go back to sleep! Hope your surgery is soon I have mine next week.

[Livylou1112 in reply to Amy2106]

Thank you so much for replying. That’s awful I struggle waking up once let alone 4-6 times, I don’t know how you’re coping! Wishing you luck with your surgery, I hope all goes well x

[Amy2106]

Thank you hopefully you don’t have too long to wait for yours too!

[BlueGiraffe9]

Hey, I was like this as well. The good news is it hasn't been an issue since surgery. I think it was just everything being squashed by the endometrioma. Hang in there, I know it's rubbish.

[Livylou1112 in reply to BlueGiraffe9]

Thank you for replying, thank god because it’s driving me insane haha. Fingers crossed surgery is soonish x

[BlueGiraffe9 in reply to Livylou1112]

Totally does. In retrospect I genuinely don't think I'd realised how ill I was...but it's insane, I sleep better, eat better and have so much more energy! I know some people have more challenging experiences but 6 months post op, I'm pain free and all my random symptoms have gone.

[Livylou1112 in reply to BlueGiraffe9]

Wow that’s amazing I’m so pleased for you, to be honest when I come on this forum it does make me realise how fortunate I am because even though I'm suffering I’ve only had symptoms since last November and I’ve already got a pre op appointment and I know some women have to wait years and years so im super grateful that my experience has been fairly smooth so far. I have so much hope that after surgery I’ll feel back to normal, thank you lovely! Xx

[Katiahead]

I feel your pain. I went almost two years without a full nights sleep as I had an 18cm cyst on my ovary which was pushing on my bladder and I had around 5 wees a night. I had lap surgery 3 weeks ago and they drained the cyst and shaved some off as it is attached to the ovary. The relief was instant as the night after surgery I slept all the way through for the first time in a long time. I woke up freaked out that it was sunlight!! I was just so exhausted from not having a nights sleep. I also got lower back pain and sciatica because of this. I would talk to your doctor about it and say it is having an impact to see if they can expedite your surgery which is what happened with mine . I am so glad I had the surgery as I do not think mentally I could have gone much longer without sleep. Good luck x

[Livylou1112 in reply to Katiahead]

Awh bless you, thank you so much for replying. You are amazing I don’t know how I’d cope with getting up 5 times a night! I’m hoping my surgery is soon as I’ve got a pre op on Friday and I’ve heard other people say surgery is up to 6 weeks after. Just can’t wait to get them out haha I want to sleep throughout the night without waking up at 3 bursting for a wee! Again thank you for responding, it’s really comforting to know other people have been through the same thing! Xx

[Katiahead in reply to Livylou1112]

You will feel so much better when it's done and back on your feet before you know it. The swollen tummy is the worst part of post surgery so if you can have mint tea try that. I had two massive chocolate cysts drained and I'm not as tired now. I need a hysterectomy and bowel surgery too but dealing with one thing at a time. Take care of yourself x

[Livylou1112 in reply to Katiahead]

I’ll stock up on the mint tea then! Wishing you so much luck with the rest of your journey lovely, take care x

[Loriiim]

Hi, I've got endo & frequent urination, but no endometriomas (although am prone to large simple cysts). I got my GP to refer me to a urologist, where they did an ultrasound before & after urinating, & then another appointment with the consultant to talk through my symptoms. They haven't been able to rule out endometriosis of the bladder because my laparoscopy was uninformative (not an endo specialist, contradicting information, but endo confirmed via biopsy. So still no real idea where it's growing except for what was found on ultrasound/the visible adhesions). They've referred me to an endo clinic for a 2nd opinion, whilst I'm also waiting to speak to the endo clinic at the hospital I had my first op/diagnosis. In the meantime they've basically got me doing brain/bladder training (after ruling out interstitial cystitis etc). I've gone from weeing 20+ times a day to 12 (still hoping to improve on this as am only 2 months in). They did tell me getting up in the night once was normal, but more than that wasn't (sometimes I was getting up 5 or 6 times). I've also given up caffeine & try not to drink too much before bedtime. When I mentioned it to the gynaecologist at my initial consultation he wasn't overly interested, although he did point out I wasn't fully emptying my bladder when doing my ultrasound. I recommend getting your GP to refer you to a urologist just to check all is ok, & in case it isn't endo related (although it does seem a lot of people with endo have this problem).

In terms of getting back to sleep (have this too!) - my therapist gets me to do A-Z brain games, that are hard enough to keep you from ruminating, but boring enough to help you fall sleep. I do A-Z of vegetables a lot, thinking with my breath, or sometimes just pick a letter & do all food I can think of beginning with C for example. But you can obviously pick any subject - names, countries, occasions etc. Have passed this on to lots of friends who've found it helpful, so hope this helps you too! Good luck.

[Livylou1112 in reply to Loriiim]

Awh thank you lovely, I’m so sorry you’re having to put up with all of that, well done for making progress though! I think I’m going to wait for my laparoscopy which fingers crossed will be soon and if I’m still frequently urinating I will seek further help as it’s so frustrating, even after I go I still feel the urge and I constantly look bloated haha. As for the sleeping tips thank you so much, I always try to count sheep backwards but I think my brain is so used to doing it it’s not effective anymore haha. I will definitely be trying a-z of food groups though! Thank you so much and good luck with the rest of your journey xx

[Loriiim in reply to Livylou1112]

Yeah fair enough, it's a lot to take on all at once isn't it! Although you'll have a bit of a wait for an appointment anyway. I had to wait 5 months for mine, so you could start the process before your op & always cancel if you no longer need it. Yeah I still need to go immediately after I've been, but am just holding it in & delaying when I go again & trying to keep myself distracted 😅

Yeah I find the A-Z is less effective if it's one I've been doing for a while. Good to mix it up! I used to try the counting backwards too, but found I got bored with numbers very easily. I visualise walking round the supermarket with the food one, very helpful 😂

Hope your op is soon & is helpful, & your recovery goes ok! Best of luck!

[Livylou1112 in reply to Loriiim]

Thank you! I‘ve got a pre op tomorrow so I’ll ask how far away the surgery will be, if it is a while away then I’ll definitely get in touch with my gp. I’ll have to add wandering around the supermarket into the mix when I’m listing my veggies haha. Thank you for all the tips you’ve been super helpful! Xx

[Sophia92]

Hi, I'm the same. I have to wee a few times in the early hours of the morning and several times during the day. My bladder hasn't got better after surgery but maybe it's because they performed ablation rather than excision of my endometriosis. I feel your pain because I have to pee so much I can't travel very far without having a toilet nearby. I've found that cutting out caffeine as much as I can helps

[Livylou1112 in reply to Sophia92]

Awh thank you for responding, sorry you have to put up with that. I’m hoping after the surgery it will be better but if not I’ll try cutting out caffeine and maybe see if I can get referred to a urologist like one of the previous comments suggested. Maybe if you haven’t already that could be a good route for you, best of luck xx