Endometriosis and intestinal cystitis

[Joannaf78]

I saw a new gynae yesterday, I've already been diagnosed with endo but the gynae also suspects that I have intestinal cystitis. Has anyone else got these both together? How do you get diagnosed? What's the outlook? 

[Sweetyassi]

Hi,

I've had both, I have both. Every month I have IC infection and am on antibiotics, but as soon as I come off antibiotics the bladder infection comes back along with bleeding in my urine and burning, stabbing pains. 

I also have Endo inside my bladder which causing IC. I had a cystoscopy test done and was diagnosed with IC and endo inside the bladder which was attached to my ovaries, bowels. I had Endo burned off inside the bladder, and gave me antibiotics, but they didn't remove any Endo on my bowels, overies.

If you do go down that route please ask them to check everywhere for Endo and remove it. I don't know why my surgeon didn't remove it from anywhere else he saw it but left it there. I had to have another operation to unstick my organs and to remove Endo.

Sweety.

[Joannaf78 in reply to Sweetyassi]

This is what's worrying me. I had a lap in December where I was diagnosed with endo. But since then the pain has got worse and worse. It's all the time worsen more around my period. 

The endo was all over my left side on my womb. But I think they didn't take all the endo away and think it's on my bladder/bowel. I had a colonoscopy, so inside my bowels are clear and now the gynae thinks it's IC. So I'm now being passed to pain management and they are finding me a urologist. I just want a clear diagnosis and someone that can do something about it. The whole thing is getting me down, I can't work, go for a run or have any kind of life until this is sorted.

It sounds like you had a rough ride has well! Can't believe the surgeon didn't remove all the endo. How are things for you now? Are you on any treatments to manage this? 

Jo

[Sweetyassi in reply to Joannaf78]

That's the thing we don't know if they removed all of the Endo or not. Sometimes when you have any kind of scan nothing shows up as Endo could be there but hiding behind organs so the consultants miss it completely.

Yes I've had a really tough time these last 6 years. I've had 5 operations to remove Endo, adhesions and to unstick my organs. I'm now in constant pain, having issues eating solid foods. Been diagnosed with celiac disease and disc protrusion, bad depression. I've been on antibiotics since last year November.

I'm currently on Zoladex injection which I hate, my bones hurt, I feel as if I have high temperature all the time I have cold chills, hot flashes, dizziness, nausea. I'm really poorly at the moment. I've had a scan done inside my bladder and my consultant wasn't happy with what he saw or how my bladder felt. He said if the Zoladex injections don't work then it's likely I am going to have an operation sometime this year. As all my old Endo symptoms and pains are back in the same place. I'm really struggling to cope with this all over again, I don't think my body and mind can handle another operation.

How are you doing today?

Sweety.

[Joannaf78]

Oh my god, you've had an awful time of it! I keep getting told that if endo is back I should only feel it when I'm on! 

You are right about the scans, I've had mri's as well, showed nothing!

I hope the doctors can do something for you, as it must be miserable for you and unfair that you have to go through this.

I've been given nothing to deal with the Endo or IC, all I know is I want my life back. I feel drained all the time. 

How are you today? 

[Sweetyassi]

Hi Irisbaby2,

Thank you, I will look into buying that and trying to out.

Sweety