Urination symptoms, does this sound like endo? Anyone else have these symptoms?

Posted , 6 users are following.

Since I was 16 (24 now) I’ve had pain during urination. I can manage the pain by drinking enough water, for some reason the fuller my bladder is the less painful it is to go. But if I don’t drink enough, or if I’ve drank alcohol, I get a pain which is just like having a urine infection. Right before the wee comes out (sorry tmi!) I feel a slight resistance, as if there’s something in my urethra, it’s really hard to describe. The pain starts as the urine is travelling down the urethra. I’ve had urine tests, ultrasounds and a cystoscopy but everything comes back clear.

I also have pain during sex/when trying to use a tampon, this has been happening since I first tried to use a tampon ages 14.

I also have pain during bowel movements and have seen a colorectal surgeon who says I don’t have fissures, although I have had them in the past as he can see where some have healed. I wonder whether the fissures are secondary to pain caused by endo.. I.e tensing up because of the pain, leading to fissures.

I don’t know, I’m trying to figure it all out at the moment and keeping a diary to see if it’s worse with my period. The symptoms are there all the time but not sure whether they’re worse when I’m on, I’ve only just recently been offered endo as a possible diagnosis from my GP so never tracked the symptoms properly before!

Any help would be lovely smile x

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  • Posted

    Hi, I was just wondering if you got any further with getting diagnosed?

    I have similar symptoms to you (also 24) - what feels like a UTI all the time (but urine tests are negative), which gets better with drinking more water and worse when I stop drinking consistently throughout the day (also bad after drinking alcohol), very painful sex and also bowel problems (which can be bad diarrhoea one week and then "normal" another week). I also have horrific bloating frequently, which makes me look more pregnant than my pregnant friends!

    I've been in and out of the doctor's for the past year or two, but have gotten nowhere with a diagnosis or even a referral. I did my own research and took endo as a potential cause to my doctor, but after three months of tracking my symptoms he is unsure it is endo, as although there is significant correlation to my cycle, there are some anomalies. However, I have read symptoms can appear outside of your cycle and my symptoms get worse and better in phases each month.

    I hope you've had more luck than me and any help would be much appreciated! smile

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    • Posted

      Hello!

      So so sorry for the late reply I’ve just logged in and seen your message! Our symptoms sound so similar! Since I’ve posted I’ve been back to my colorectal surgeon and been seen by a gynaecologist. My colorectal surgeon was left scratching his head as to what is causing the painful BMs as i definitely don’t have any fissures and no other obvious physical cause so he referred me for a second opinion. That doctor also couldn’t see anything and said it must be nerve pain caused by having fissures in the past and so put me on amitryptilline which is a nerve blocker. My GP said that this would help my urinary and painful sex symptoms too if it was nerve problems causing these as well. I asked the colorectal surgeon if it could be endo and she just dismissed it and said there would be blood if it was. Even when I said well there sometimes is she still wouldn’t consider it.

      The gynaecologist I saw said my symptoms didn’t sound like endo as I didn’t have any pain in my abdomen. She said it’s vaginismus which is an involuntary tightening of the vaginal muscles when penetration is attempted and there’s nothing you can physically do to stop it happening and often no reason as to why some women have it. She’s referred me to sexual health psychology and I’ve got an apt this week. I’m not overly convinced or optimistic, basically she said they’re going to give me some dilators to try and get my body used to penetration without pain and talk through what’s causing my issues. It’s not in my head, it’s a physical problem I’ve had forever so when I got psychological well-being questionnaire through the post I did a massive eye roll ! I asked her what is causing my urinary symptoms and she said it will be the same thing, the muscles are so close that the tightening will be making it feel like I have a UTI all the time and she also said this could be causing my anal pain as those muscles are close too. All sounds a bit strange to me but will have to see what they say this week. The amitryptilline isn’t working btw so that’s ruled out nerve damage as a cause for the vaginal and anal pain and still leaves endo as a possibility, in my mind anyway!

      It’s so horrible all of this isn’t it! I would def go back to your GP and ask for a referral because even if he thinks it isn’t endo, you need an explanation for all the pain smile x

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    • Posted

      Hi again!

      I'm so sorry for the extremely extremely late reply! I just wanted to see if you have had any improvements in the past few months? I've been to a urologist and gynaecologist since I first posted, neither of which have been massively helpful. The urologist has basically told me to drink water and stay away from acidic drinks. He also gave me tablets which are supposed to make you go to the toilet less, as I generally go about once every 3 hours (on a good non-attack day, otherwise it's a lot more), even though I told him the burning UTI like pain is what is really uncomfortable, not the need to go to the toilet more frequently than the average person. UTI like symptoms are still hell though. Like yourself, the gynaecologist said I have vaginismus and referred me to a sexual health therapist (I have just had my initial appointment so far, after months on the waiting list). I am also not overly convinced, as I'm not sure if it's an effect of the pain rather than the cause, but willing to give anything a try!! I hope you have a better time with it than me! x

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  • Posted

    Hi! i have very similar urinary pain and was just diagnosed with endometriosis and pcos. i was seeing a gyno for infertility not the urinary pain and was surprised to find out i have endo because i dont have that many endo symptoms. at my next appointment i plan on asking if the urinary pain could be related and will update this post!

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  • Posted

    Hi

    Does it feel like a balloon getting blown up right before you urinate? And does the end of your urethra hurts?

    Bowel movements can be painful but definitely after going as it comes with this deep painful throbbing pain.

    I have endometriosis stage 4 but my recent keyhole they found endometriosis on my urethra, rectum and another right by rectum.

    I won't go into all my symptoms but they are my symptoms for bowel movements and urination.

    Hope you get keyhole operation soon to find out for sure if you have endometriosis

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  • Posted

    My daughter has been diagnosed with endo. She finds it extremely painful to urinate which last for some time after she has done so. The same when she passes a stool. She also find it hard to start weeing, even if her bladder is very full. She will sit on the toilet for some time before she can start weeing.

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