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Endometriosis UK
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Suspected Endometriosis with bladder issues

Good morning everyone. I am new to this community and could do with some help.

I have posted on other forums but they are not specific to endometriosis. I am currently in the process of meeting my specialist and have another appointment in January.

I have a lot of other symptoms however this one has left me confused and concerned. I have been put onto the pill to help manage my symptoms, a 21 day pill but to take 2 months consecutively. It was messing me about (was on my period for 4 weeks) but it seems to have settled.

My bladders issues, so everytime I have a full bladder I am in excruciating pain, this is something I have never experienced and I have been tested for urine infections and all fine. When I use the toilet I start to bleed heavily as though I am on a very bad period. Urinating doesn’t actually hurt but there is just so much blood. Has anyone else experienced this?

I am keeping a diary and will be telling my specialist about this but it has me very worried.

Thank you for taking the time to read this!

12 Replies
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Oh my poor Charley!!! It must be terrifying! You must record it all and tell the gynaecologist, you are referred to one roght? I had endo and they removed a lot behingvmy bladder. My chance was that I had no serious pain and no blood! But you must be referred for a laparoscopy, asap.. please insist and make sure to tell them all about the pain/blood. If you see the right soecialist youll be booked for a lap in no time ( well 2 months😊) xx

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Right Specialist sorry

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Yes I have met the specialist once! I didn’t tell him about this though as because I was bleeeidng constantly I didn’t even notice. Yeah I am definitely going to make a massive point about it. Thank you so much!! Out of interest did they ask whether you had pain or bleeding with the endo behind the bladder?

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Hey,

I have had issues where the endo is taking away the ability for me to urinate, the endo can cause so many problems and issues, bladder being a big factor. I would certainly write it all down, that’s a good idea. I would be tempted to call your specialists receptionist and request and earlier appointment, however it is common to have breakthrough bleeding, and if the endo is around your bladder, when it is full I would imagine it’s pushing on the endo and causing the discomfort and breakthrough bleeding.. I’m really sorry for your discomfort.. we are all here if you need advice!

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Thank you for the reply! I booked the earliest appointment as possible, christmas got in the way a little bit! So I’ll definitely be going on the 7th. Yeah I knew breakthrough bleeding was rather common but when I saw it was everytime I urinated I was scared and shocked. Gladly it’s not coming from my bladder but it’s still such an annoyance and painful at times. Thank you so much for the support I really appreciate it!

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Its such a hard illness to cope with, please let me know how your appointment goes, I hope it subsides so you can enjoy your Christmas, all the best xx

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Merry Christmas to you too! I will definitely keep you updated. Xx

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Hello, how did your appointment go?

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Hiya! I wrote a little update down below. Thank you for checking in x

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I had this exactly the same! And couldn't stand up straight for 10 mins after emptying my bladder because the pain was so bad, turns out my bladder was stuck to my cervix. I'm currently recovering from a total hysterectomy as it became my only option (23 days post op). I'm 26. You definitely need to mention this to your gynea Xx

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I’m so sorry that sounds horrendous. I am not too bad after emptying my bladder fingers crossed! I definitely will

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Little update!

I went to see my specialist today and basically the lining of my womb is constantly shedding, he thinks this is due to my pill so we are going to try a pill on top of that.

I’m so grateful to see them but I also kind of feel that they are just delaying the surgery to diagnose it. But regardless it’s a step in the right direction, he asked me to keep an extensive diary over my period which should be the next week or so.

We’ll discuss then what to do. However I’m still going to be having this!

Side note, I had the worst of this on Saturday evening. I took a shower and had a wee before, I was stood in the shower and it was as though someone turned a tap of blood on. I was screaming and called my SO to the bathroom. We were about to phone 111 but it stopped. Next time I will go to hospital because I was honestly so scared and crying a lot.

Thanks to all the support so far I’m hoping something will be sorted soon!

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