I have stage IV endometriosis mainly in my bowel & bladder AMA

[Destinyknown]

There is very little information out there for women who have endometriosis of the bowel and bladder.
I have endometriosis all over my pelvic area too but my serious issues are with my bowel and bladder.
I'm 37 years old and struggled for over 15 years before getting help and diagnosis.
AMA

Hi, I'm sorry to hear this, hope you're doing ok. What were your symptoms?

Thank you. It's can be emotionally and physically draining.
My symptoms weren't classic signs so went under the radar.

For years so called cystitis, IBS and then in my twenties I had sudden episodes of what I thought was severe food poisoning.
This included severe diarrhea, sickness, chills, high temperature, extreme tiredness and flu like symptoms, passing blood in stools (very similar to Crohn's flare up)
This actually happens during ovulation for me.
Then with my bladder I can pee up to 20 times per hour, burning and unable to empty my bladder.
When ovulating I have extreme shooting pains in rectum and ovaries, and areas of effected bowel.
Sex can be painful too.

Jesus OP I feel for you!! I have endo on a tumour in my csection scar and am on the surgical list waiting for it to be removed. What is the long term plan for you?

@ChristMyArse sorry to hear this.
I'm waiting for surgery on my bowel. I am also waiting to see a urologists and pain specialist to manage the pain. However because of covid nothing had happened yet. I have a hospital appointment next week to discuss my surgery.
Currently feel like I'm in limbo

@Destinyknown wishing you much luck with your appointments, it must be very hard for you 💐

This is such a stupid question I'm afraid to ask it but do you mean you have uterine lining growing in your bladder and bowel? How does it get there? Is it literally overgrowth from the uterus itself?

Thank you @ChristMyArse and good luck with your treatment

@Porcupineintherough not a silly question at all! I find that there is very little solid research concerning endo hence not loads of info out there.
You are correct. Womb lining tissue and cells grow elsewhere which is at best an irritant at worse causing debilitation.
When the tissues bleeds the blood has nowhere to go this then can cause severe pain and complications.
Due to this my gynaecologist has said the endo has shattered my bladder nerves and a reason why I am incontinent.
In terms of my bowel it causes adhesions, holes, tethering etc
I believe if women were taken more seriously acting faster would slow down the growth of endo.
The popular theory is that retrograde mensuration blood travels back and causes growths.
I'm not convinced by this. There is a theory about immune system which I believe fits better. My immune system has always been shattered.
Genetics also seems to have a link to women who have endo in their family.

@Destinyknown
I know you've not seen the urologist yet but has anyone spoken to you about intermittent catheters? I use them as I had a spinal cord injury late 2019 which crushed my nerves. I also use an irrigation system for my bowels as I have no real control now. Possibly something to think about? X

Hi @ChristMyArse I had not idea about this and thank you so much for your suggestion.
No one has spoken to be about intermittent catheters but this is something I will bring up. I'm sure you can empathise when I'm having a bad flare up with my bladder or bowels I can't leave the house.
My bladder is constantly inflammed so I have to plan my day and my stress levels go through the roof if I have to travel or have a long meeting especially at work
Now that I finally know it's a condition I feel more confident to say I need loo breaks.

At the start of this back when I was in my 20s I was dismissed and told my bladder issues were psychological and to stop wearing tights.
A bad episode can mean easily getting up 30 times a night.

And @ChristMyArse I hope you're doing ok x

Is there anything you can do at home to ease symptoms? Any medication that helps?

I have this too. I hear you. Stage 4 endometriosis and adenomyosis (plus pcos). It was on bladder, bowel, US ligaments, diaphragm, ureters, pelvic side walls, peritoneum, ovaries, rectovaginal area, and distorted my anatomy. 25 years to be diagnosed.

Do you have any other chronic conditions? I was just diagnosed with three others.

Have you had excision surgery?

I had some endometriosis removed from my bladder by laparoscopy a few years ago. My symptoms were/are mild compared to yours and are usually only during my period.

Just wanted to wish you luck with the surgery and treatment. Have the doctors mentioned the endo might also improve with age and the coming of peri menopause and menopause? I realise that could be a long way off.