Endometriosis on the bladder

[Lorna84]

I am 34 years old and suffer with endometriosis deep routed inside my bladder wall, I was diagnosed with this when I was 22, the NHS consultant in my area at the time didnt want to do an mri and nothing was done, 3 years later I had a 3rd laproscopy with laser. The 1st laproscopy was a wrong diagnosis so I went private to be told the endometriosis is deep routed inside my bladder wall. Can anyone help? as I am now getting symptoms, my bladder is so weak, I always test positive for a urine infection, I don't get any symptoms of a urine infection. And occasionally it feels like someone has punched me in the right kidney. Can anyone suggest what I should do as the consultants just want to give me zoladex and pain releif when I see them. They said that scar tissue is present and they don't want to make it worse with another laproscopy.

[Bdgjdjd]

I have really bad endometriosis on my bladder

I have always crazy burning urination which means infection

I know i have it on my bladder because when i pee (wee) during period i have blood small clots like hair in my urine and my doctor said this is caused by endometriosis

Burning urination makes me having bad times (crying) as it will make my getting pregnant journey much harder

I hope we can find something helps us

I had lupron before it was great for my endo but now bladder issues came back

[Lily1985]

Hi Lorna,

I am sorry to hear that you also struggle with Endometriosis on the bladder.

I just posted about the same issue a few days ago as I ended up in hospital with it.

In 2013 I was diagnosed with Endometriosis and adhesions.

The Endo grew on my bladder and recently it got so bad that it must have grown right into it causing recurrent infections.

The infections went into my kidneys getting me hospitalised with high fever and excruciating pain.

My urologist kept me in hospital for 5 days and told me that once you have Endometriosis inside your bladder that you need another surgery fast as this causes recurrent infections and pain.

She says that it's better to have a few adhesions than the recurrent infections and kidney problems.

So she told me to go back to my Endometriosis centre to say I need surgery and to not let myself get fobbed off. Otherwise she said to go to another doctor who will listen!!

I hope I could be of help here. I am struggling with the same problem.

Only got out of hospital yesterday and my next appointment with my Endometriosis centre is on the 18th of September.

If you like I will let you know what they say and to keep in touch. 😊

Best wishes xx

[Lorna84 in reply to Lily1985]

Thank you please keep me posted I am at the end of my tether with it. I keep getting fobbed off. I have had this condition since I was 15 I recon. I don't know where to turn or what to do as Lupron, zoladex is a short term fix for a long term condition.

[Lily1985 in reply to Lorna84]

Of course 😊 will keep you posted.

Doctors put me into a short term menopause etc as well. And yes you're right it's just a short term solution to a big and long term problem. 😳

Very annoying and with major big side effects too!!

[Hidden]

So I have had "suspected endometriosis" for about five years and finally got my lap next week!

I am interested to know more about your bladder endo. I had the common symptoms... heavy period, back pain, pain during sex, pelvic pain etc. That was when it was initially thought I may have endo but I was told I didn't need to do anything, just take the pill...

Its gradually got worse and therefore I started pushing for the lap. However last year I got a urine infection which became a kidney infection and I was hospitalised. since then I have had regular checks and discovered that I ALWAYS have a urine infection, despite antibiotics and I knew this wasn't right. Anyway, I started to question it when I had antibiotics for about the fourth time and not getting better and I went to see a urologist. He didn't seem to think endo would cause these symptoms and it's likely i have a damaged kidney from the infection. So on Hiprex now but i'm not convinced. I don't get any symptoms of a urine infection at all.

Do you test positive on a stick in the gp office, or actual sending pee to the lab?