Bladder and bowel endo. Waiting for op ........

[Catmum]

I am waiting for surgery for my endo. I have a nodule inside the bladder and another on my bowel. The nodule inside the bladder is close to blocking one of the uretas. They plan to stent and re section the bladder and then re section my bowel.

I have constant lower back pain which stops me from sleeping. As does my need for the loo. I go around 5 times a night. I counted my trips to the loo the other day and I went 24 times. I have trouble with my bowels, it hurts to open them. I have sharp stabbing pains in my abdomen, needless to say my periods are rough. I have no sex life as I am exhausted and also, if I do have sex it is very painful afterwards (though not during)

My mood is very low and am on the top dose of an antidepressant. I am currently off work as I cannot do my job whilst I feel like this. My surgery has been cancelled once already. As I need 3 consultants there for the 3 specialities there it is difficult to arrange.

I just want some support and advice from others that have been through this please.

[loobyloo69]

Hi Catmum I went through a similar op about 10 yrs ago. My bowel bladder womb etc were all conjeled together. I had laser surgery with with 3 surgeons as well. Gyno, bowel and bladder. They cut away as much as the endo from everywhere they could withought causing damage to the bowel and bladder ( so I wouldn't need to have bags in ) which would not be able to be reversed. So because of this I was still left with a lot of endo. But I had a lot everywhere anyway before the surgery.

But the good news was I was fantastic for 9 months. Then the pain and everything started again. I'm just a bad case for it all so please don't think you'll be like that. This is just how I was with it.

It can have a very good success rate. I've spoken with girls that's had it done and it was brilliant for them. Hope your having a good day and best of luck love Linda 😘

[Catmum in reply to loobyloo69]

Thanks for your support.

I had my op on the 27th. Was on the table for 5 1/2 hours. They sorted my bladder, it has been resectioned and bilateral stents have been put in. They were unable to sort my bowel as that consultant could not attend the surgery. I have ended up with antibiotics and have a kidney infection and need morphine but am trying to stay positive!

My aftercare has been poor as I was told I may need more surgery but have now been left hanging! It's very frustrating!

Anyway, onwards and upwards!

[loobyloo69 in reply to Catmum]

Awe hon sorry it wasn't all sorted out with the one surgery. Keep on at them about what they are going to do.

Please don't do what I did years ago left it to them and didn't push about it. I did that for years and just took the new pills they always gave me but they didn't do anything ( the pills ). I just kept thinking oh they know what there doing haha. But at the time not many doctors actually knew much about endo but that was 20/25 years ago.

Then I refused to see the gyno I had at the time because of the way he spoke to me. I was shocked and heartbroken when I came out I foned the GP practice demanded to see a doc straight away they told me to come straight in I saw a new GP he was brilliant was completely shocked by the way the gyno treated me. He got me a new gyno who was fabulous. He took me in for a lap and was shocked by what it was like in there and couldn't understand why the previous gyno treated me that way because he was the one who actually diagnosed me so he knew what it was like in there.

My new gyno did everything he could for me ( the bladder bowel etc surgery ) but it was to late because all the damage was done.

So now ( because of my age etc ) I have only had a few periods over the last few years ). But all the symptoms are still there. We thought once I go through the menopause it would stop but no because of the damage so I'm always going to be like this and there isn't anything that can be done except pain management that doesn't help much it just dulls the pain a bit. They can't do anymore surgery as it would be to dangerous.

So please push them about it.

As I said not what I did and leave it to late to push and the damage was all done. Love Linda hope you have a pain controlling day 😘

Sorry for going on about it i just feel strongly about it because of what it has done to me. 😘

[Catmum]

It's awful how quickly this is dismissed isn't it? Even now.

I was only diagnosed in Dec last year as I had a biopsy of a growth in my bladder, which turned out to be endo. I had come off the pill almost 2 years before and pretty much struggled with pain throughout that time. The pill had been blocking the majority of my symptoms up until then.

When I finally saw an endo specialist in April, I had an MRI and basically my insides are a mess! I have deep infiltrating endo. The nodule in my bladder needed removing as it was close to blocking a ureta so surgery was not up for discussion!

I came off the pill as I wanted children. Now I will settle for feeling ok so I can have a life not an existence!

I will keep pestering the medics! I will not be dismissed!

Sorry your experience was so negative xx

[loobyloo69]

Thanks hon. I know it's so anger some I'm pleased your going to keep at them about it. I just wish now I had pushed about it all those years ago something could maby have been done and it maby wouldn't have gotten so bad ☹️

True what you said have a life not an existence that's all I've had for years.

I'm lying here on my recliner the pains ok pills are actually working so far today. But have got severe fatigue basically everything except the bad pain lol. It's either laugh about it or cry. Where abouts are you if you don't mind me asking I'm in Scotland 😘

[Catmum]

I am in Bury, a town a few miles out of Manchester.

It is a diagnosis that affects everything. I feel physically rubbish, and my mood is low (I have depression anyway which doesn't help) My attendance at work in the past 12 months has been abysmal. I manage a mental health ward and it's a job I worked hard to get, now I am letting everyone down. When I have been at work I have not been much use. Am so exhausted. And it's a good job my partner is so good as our sex life is non existent and we don't get out much.

I refuse to be beaten by this! Saying that, there are some days I lock the world away because I am so miserable.

Glad the tablets are taking the edge off for you today. I am still recovering from the op so am sat in my pjs watching Law and Order, SVU.