LUpus Patients Understanding and Support
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What on earth is this? Photo

What on earth is this? Photo

Hi everyone, I'm 30. Had bladder probs for years. Actually think I possibly have ulcerative colitis or eosoniphilic cystitis. Have been cathetrised in and off for months. Had multiple severe urethral strictures and I have lichen sclerosus. Had multiple dilatations. Anyone had this type of thing coming out in their urine. Sorry its a bit gross. I always get these even when I don't have a foley in. I have had biopsies and been told there was severe Inflammation but they dont know why? So I'm just left to deal with it with antispasmodics and codiene. I want to demand an mri now. Whats your thoughts?

Can anyone shed any light? No pun intended lol. Thanks

3 Replies

Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.

I am sorry you have had to endure such discomfort and pain. I am sorry, but I really cannot see anything.

Do you have a diagnosis of SLE? I just want to understand whether you are asking in a variety of forums (not a criticism); and also have SLE.

Inflammation is a feature of SLE and the bladder can be affected. Ulcerative colitis, is also an autoimmune disease affecting the bowel.

For the reader who does not know this unpleasant condition.

Lichen sclerosus is a long-term skin condition that mainly affects the skin of the genitals. It usually causes itching and white patches to appear on the affected skin.

Other areas of the body are also occasionally affected, including the upper arms, back, breasts and shoulders.

Lichen sclerosus is most common in women who have been through the menopause, although men and children are also sometimes affected.

It's not clear what causes lichen sclerosus, but it's thought to be related to overactivity of the immune system. It's not an infection and can't be spread to your partner or other people.

Lichen sclerosus can be uncomfortable and distressing, but it's usually possible in most cases to control the symptoms with simple treatments.

Symptoms in women and girls

In women and girls, lichen sclerosus tends to affect the vulva (the skin around the entrance to the vagina) and the skin around the anus (back passage).

Symptoms include:

small white areas that may increase in size and join together to form larger patches – these patches may become cracked and sore

itchiness, which tends to be worse at night and may disturb sleep

the skin becoming fragile and thin, or wrinkly and thickened

red or purple blood blisters

pain when having sex and/or passing stools

Without treatment, the vulva may gradually scar and shrink. This can make the entrance to the vagina narrower, which makes sex even more difficult and painful.

I presume you have been sent to an urologist?

I am sorry that I cannot be more helpful, but do feel free to talk.

With good wishes,


Disclaimer: No attempt is made to diagnose or to make any medical judgement. You are advised to seek the advice from your own physician. LUpus Patients Understanding & Support (LUPUS) is not a substitute for your own doctor.

1 like

Thanks for your response. I don't have a diagnosis of lupus but have lots of other things wrong. There are lumps of blood and tissue in my catheter bag. So much so that it is blocking the outlet. I am not seeing my urologist until tomorrow. At the stage where I want to demand an mri as I have never had pain like this in my life. My doc who deals with lichen sclerosus told me there is no way it can be inside the bladder and that something else is clearly going on.


I am so sorry. This sounds horrendous. I hope your appointment goes well and I am sure they will investigate as this means you have no quality of life.

You are welcome here any time, even if you don't have lupus!

If you want to talk, I am usually around!

With good wishes,



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