Calling on any medical professionals or anyone please

[Spotify82]

So I've posted already to someone's threat I think. I have my period coming out of my urinary tract. It's the second time now. I have used tampons and wiped and there is some from my vagina but most of the time it's from my urethra.

I have had a clear cystoscopy. Ultrasound showed fibroids. I cant hold my wee...and I'm suffering from urinary incontinence.

I had a CT scan.

Here are my questions for anyone who has knowledge and could shed some light.

Will the CT scan show endometriosis of the bladder

Number 2...when I get referred to gyne which I have been. Will they do a laproscopy? Have they refereed me to the correct place?

Is there an endometriosis specialist they should have referred me to instead.

I'm fed up of being in excruciatingly obnoxious pain. And I'm drugged up to my eye balls.

I missed 4 weeks of work, im a teacher and ims stressed about taking more time. They are all struggling at the moment...but everytime I wee I literally shriek in pain.

You poor woman. That sounds awful. I am not a doctor, but a retired HCP who has had gynae/urinary tract issues myself.

It sounds to me as if you need to see a urogynaecologist. They tend to be few and far between. I suffered for months waiting for an NHS referral that never materialised and in the end saw someone privately.
I did a lot of research to make sure I found the right person. It cost me around £1000 but she cured me in a few days.

Do some googling in your local area.
If you are in London I can recommend someone.

Have you dropped a urine sample of to be cultured if you are experiencing blood in the urine and pain OP? I would do this ASAP.
If you've had a cystoscopy (which you have) they would have been able to tell you if you had endometriosis in the bladder. If it was clear, then you don't, they would have told you.

You can't get your 'period' out of your urethra and it's virtually impossible to tell from wiping where the origin of bleeding. The urethra is tiny and the layout of the vulva means the urethra, vagina and anus are very close together on a woman's body.

Fibroids can cause pain and intermittent bleeding, if they are above a certain size or causing severe symptoms of pain then they can be laparoscopically removed. A laparoscopy can also be done to investigate for endometriosis in the womb etc. If they can't find an answer to your symptoms via scans etc then they may request to do a laparoscopy to investigate further if you consent.

A CT scan of the bladder is used to highlight any abnormalities in the bladder or abdominal organs such as shape, size or the presence of growths. If you've had the scan and that was also clear you do not have them.

It might be helpful to have more information on your symptoms. Is this just during a period or all of the time? Have you been tested for UTI's? Have you had your smear test done and up to date? Does anything trigger it (such as having sex, after a period etc). Are you otherwise well? What are you taking for the pain? Do you have a temperature?

For some context I am not a qualified doctor. I have interstitial cystitis which can be agonising and causes the problems you are having with bladder pain. I also have pelvic floor dysfunction and a boeel and bladder prolapse which causes some incontinence issues. I also have vulvodynia which causes burning pain and ovarian cysts which cause mid cycle bleeds. There are so many things it could be (lots of them treatable) but nobody here can tell you.

I would call your GP ASAP and ask to have a urine sample sent off and cultured to rule out UTI as a lot of the symptoms you have match up to one. Make sure it is sent off for culture not just dipped.

Then request a referral to urogynae or urology for assessment. Explain again to your GP you are unable to work for the pain. In the meantime for the pain I find cooling gel packs between the legs so helpful, I get them on amazon. Warm baths are also good if it's not a UTI. Using a jug of water to tip on yourself as you wee can also take the sting out of it.

@dontgobaconmyheart

Have you dropped a urine sample of to be cultured if you are experiencing blood in the urine and pain OP? I would do this ASAP. If you've had a cystoscopy (which you have) they would have been able to tell you if you had endometriosis in the bladder. If it was clear, then you don't, they would have told you.

You can't get your 'period' out of your urethra and it's virtually impossible to tell from wiping where the origin of bleeding. The urethra is tiny and the layout of the vulva means the urethra, vagina and anus are very close together on a woman's body.

Fibroids can cause pain and intermittent bleeding, if they are above a certain size or causing severe symptoms of pain then they can be laparoscopically removed. A laparoscopy can also be done to investigate for endometriosis in the womb etc. If they can't find an answer to your symptoms via scans etc then they may request to do a laparoscopy to investigate further if you consent.

A CT scan of the bladder is used to highlight any abnormalities in the bladder or abdominal organs such as shape, size or the presence of growths. If you've had the scan and that was also clear you do not have them.

It might be helpful to have more information on your symptoms. Is this just during a period or all of the time? Have you been tested for UTI's? Have you had your smear test done and up to date? Does anything trigger it (such as having sex, after a period etc). Are you otherwise well? What are you taking for the pain? Do you have a temperature?

For some context I am not a qualified doctor. I have interstitial cystitis which can be agonising and causes the problems you are having with bladder pain. I also have pelvic floor dysfunction and a boeel and bladder prolapse which causes some incontinence issues. I also have vulvodynia which causes burning pain and ovarian cysts which cause mid cycle bleeds. There are so many things it could be (lots of them treatable) but nobody here can tell you.

I would call your GP ASAP and ask to have a urine sample sent off and cultured to rule out UTI as a lot of the symptoms you have match up to one. Make sure it is sent off for culture not just dipped.

Then request a referral to urogynae or urology for assessment. Explain again to your GP you are unable to work for the pain. In the meantime for the pain I find cooling gel packs between the legs so helpful, I get them on amazon. Warm baths are also good if it's not a UTI. Using a jug of water to tip on yourself as you wee can also take the sting out of it.

Hello. Thank you for the response. This is exactly what is stressful. When you feel your wee coming out....and place a tissue over your urethera with a tampon in and a clot leaves your urethra...it is coming from your urethra!

I have double and triple checked. Cystoscopy isn't the only and best method to check for bladder endometriosis. But anyway I will wait.

The blood leaves from my urine! I have been woth my body and I know how a clot feels when it leave my vagina and when it leaves my urinary tract.

I have dropped several urine samples and they are always clear.

I'll wait for the CT results. I have a gyne referral. And I do have a family history of endometriosis....mum sisters.

@endofthelinefinally

You poor woman. That sounds awful. I am not a doctor, but a retired HCP who has had gynae/urinary tract issues myself.

It sounds to me as if you need to see a urogynaecologist. They tend to be few and far between. I suffered for months waiting for an NHS referral that never materialised and in the end saw someone privately.
I did a lot of research to make sure I found the right person. It cost me around £1000 but she cured me in a few days.

Do some googling in your local area.
If you are in London I can recommend someone.

Thank you. I will be going to a private doctor if this doesn't go through. Something happening is not right and it needs to be sorted.

I have never heard of this before but I hope you get some answers soon op, sounds horrific! Really salty baths might soothe things a bit discomfort wise.

Endometriosis won’t show up on a CT scan. Sometimes it will show up on an MRI, if it’s deep infiltrating.

And yes, many gynaes are unfortunately clueless about endo in the main in my experience, which is shocking given how common it is. You need a specialist who can perform excision surgery and there aren’t many of those sadly. I go to the John Radcliffe in Oxford even though I live a few hours away, and before that I was under UCLH in London.

I have a friend who had Endo effecting the urethra that was causing bleeding during her period but nothing inside her bladder so that’s also a possibility.

I'm frustrated. Im fed up. I popped out to get shopping and I'm in pain..I'm practcining so that I can go back to work and the pain is beyond explanation. See I dony know how to explain but right on the day of my period...I did a wee and it stung and felt painful when it came out. When I wiped there was blood. I always hold the tissue away from my vagina.

I'm just feeling really depressed, obviously my hormones don't help but the pain and ugly bitchy feeling in my urinary tract is not nice. Its affecting me after wards intimately with my husband too. I'm sorry to be whining but lockdown is crazy and everyone has their troubles and I dont know who to turn to.

I know the feeling. Same issues please if anyone solved this let me know. Same period blood from urethra. Not only vagina.ur not paranoid it is real but no doctor seem to know how to help this.i do believe it is sexuallyvtransmitted though as this happened after my new partner.

Is it definitely period blood? I’ve literally peed blood and clots in the past and was hospitalised with a kidney infection. It was very painful.
I’m sorry your in so much pain and hope you get it sorted very soon. Have you tried drinking lots of water? May help with the itchy urinary tract.

Do you think theres some sort of fistula allowing blood to move into the bladder or urethra? It all sounds pretty awful.
Hope you get some answers soon.

I was thinking about the fistula from vagina to bladder for sure because the blood as well as discharge the vagina should excrete is also excreting there. I am in serious pain.

@Spotify82 I too have the same issues. Please let me know if it was solved and how please

I'm not the right kind of Dr at all I'm afraid but it strikes me that you seem very sure that it is endometriosis whereas it seems to me that other causes would need to be ruled out before concluding it was definitely that eg maybe it could be some kind of fistula rather than endometriosis

I should very much doubt that a CT scan could show bladder endometriosis that a cystoscopy failed to show up. It would show a fistula though or maybe some other cause no-one has thought of.

I think with endometriosis you would have a normal period from your vagina and then you could additionally have bleeding from an ectopic source in your urethra but not less bleeding from the vagina.

I guess the thing that would differentiate a period related cause from some other injury or damage to the urethra that was causing pain and bleeding would be that it was only when you have your period and was OK at other times?

I would have thought that the most common cause of pain and bleeding from the urethra is infection or inflammation of some kind but if common things are ruled out then rare things obviously do happen.

When you say your urine samples are 'all clear' I assume you mean of infection. If you can see blood in your urine then it would also show up in a urine dipstick test and in microscopy of the urine.

You very definitely need a urogynaecologist and I hope you get to see one very soon to get to the bottom of it properly. Meantime can your GP prescibe anything more to help the pain eg some local anaesthetic gel to numb things.

When I say clear I mean of infections.yet still have burning when pee,pain and itch in urethra. There is clear liquid on normal days and on periods both vagina and urethra pass blood.

A CT can not show endometriosis.

A gynaecologist is the correct person to be referred to if endometriosis is suspected.
They normally take bloods and sometimes an ultrasound.

If they decide a laparotomy is relevant they will do one.

Pain when you urinate is much more likely to be a sign of infection or passing kidney stones.

Obviously a fistula from the urethra into the vagina is not impossible.

@Torvean What if it is not endometriosis as I have already confirmed its not. Do you have an answer for what causes someone to see there period from both their vagina and urethra?

@CovoidOfAllHumanity

I'm not the right kind of Dr at all I'm afraid but it strikes me that you seem very sure that it is endometriosis whereas it seems to me that other causes would need to be ruled out before concluding it was definitely that eg maybe it could be some kind of fistula rather than endometriosis

I should very much doubt that a CT scan could show bladder endometriosis that a cystoscopy failed to show up. It would show a fistula though or maybe some other cause no-one has thought of.

I think with endometriosis you would have a normal period from your vagina and then you could additionally have bleeding from an ectopic source in your urethra but not less bleeding from the vagina.

I guess the thing that would differentiate a period related cause from some other injury or damage to the urethra that was causing pain and bleeding would be that it was only when you have your period and was OK at other times?

I would have thought that the most common cause of pain and bleeding from the urethra is infection or inflammation of some kind but if common things are ruled out then rare things obviously do happen.

When you say your urine samples are 'all clear' I assume you mean of infection. If you can see blood in your urine then it would also show up in a urine dipstick test and in microscopy of the urine.

You very definitely need a urogynaecologist and I hope you get to see one very soon to get to the bottom of it properly. Meantime can your GP prescibe anything more to help the pain eg some local anaesthetic gel to numb things.

I agree with this.

I've not seen you mention that you've had specific medical tests.

Have you has a cystoscopy or laparotomy?