Severe Bladder symptoms

[Mazzao]

Hi. I have had Endo for 9 years and undergone 2 laps with ablations. Last time it was on bladder and bowel and ovary had attached to bowel. That was 4 years ago and seeing gynea again in 3 weeks. I am currently suffering from the most horrendous feeling of constantly needing to urinate. I have had 3courses of Abx with no effect and now they treating me for pid with more Abx. I don't think it's this as not had sex in over 6 years due to Endo pain. It's really bad. I can't sleep and in so much discomfort. I think it may be Endo and bladder but wondered if anyone else had this feeling constantly. Bladder discomfort is unbearable.

[MandyLou]

Hi there, sorry to hear you're suffering so much. I too have bowel issues and endometriosis, during my last op the endo was on my intestine and the doc had cut into my intestine by accident.. Since then I've had awful issues and my need to urinate has increased dramatically, in fact if I'm not near a bathroom it becomes excruciatingly painful and with endo pain too I just can't bear it some times. I have an appointment with a surgeon next week regarding my bowels and will hopefully go forward to excise my endo but will see.

I really hope ou have success with your appointment and hope the time flies. It's an awful this to suffer especially when pushing with meds that you may not even need. I can't be a great help as I have little knowledge myself right now but you're not alone in your endo and bowel issues. Thoughts are with you and hope you feel better.. 🙂

[Sweetyassi]

Hi

Sorry to hear that you're suffering. I've had horrendous pains in my bladder when urinating in the past 4 years. I was told I had chronic IC, I've been on numerous antibiotics and they not worked at all, no painkillers have helped at all. I've been in agony day and night. It turns out I had deep endo wedged inside and outside across my bladder which was attached to my bowels, both ovaries, vagina and rectom. I had an operation to remove all endo and I was pain free for 3 months then the endo retuned and now I'm in pain all over again. I will be having yet another operation but not sure when.

I hope you find some relief from your pain.

Sweety.

[Mazzao in reply to Sweetyassi]

Thanks for replies. so hard going through this alone. Everyone is supportive but they just don't really understand. It feels like constant pain and discomfort. Like having a severe uti all the time with no relief. And sleep deprivation is really affecting me. Sweety did they find all your bladder Endo on lap or did u have other bladder tests too?

[Sweetyassi in reply to Mazzao]

Your welcome, that's so true no one really understands unless they themselves are going through the same problem as you. I don't sleep much either due to burning pains and stabbing pains and then there's the bleeding in my urine too. I feel so exhausted all the time, can't walk properly sometimes due to pains and swelling.

They had to remove a little bit of my bladder, so my bladder is now smaller than everyone else's. They did remove all the endo from the bladder that they could see, but not from my bowels, my left ovary is smaller than my right one I had lots of adhesions everywhere too. I had an internal scan of the bladder a couple of months ago and my surgeon didn't like the feel of my bladder so I'm having an MRI scan on Sunday to see what's going on with my bladder and bowels as I'm having difficulty in eating solid foods.

Sweety.

[Mazzao]

Oh sweety. It sound horrendous. I hope things improve soon. Are u under a good hospital gynea team? Big hugs to u via this message.

[Sweetyassi in reply to Mazzao]

Hi sorry for the late reply. It is horrendous. I'm really struggling with eating as it's causing me pains and i can't seem to get rid of my bladder infection. I'm seeing my private doc by NHS, otherwise no I have no other consultants that I'm seeing as I know they can't help me as they don't know how to help me.

Hope you're feeling better today?

Sweety.

[Vikarymik]

Hi there, I have just signed up . And only had my diagnosis confirmed last week by mri.

Before my endo was diagnosed, they thought it was bladder infection too though no confirmation from urine test. Now have diagnosis of endo and get the wee problem, after sex and when having to hold urine for too long. My endo is attached to my bladder and my bowel.

Xx

[Mazzao in reply to Vikarymik]

Hi vikarymik. So sorry to hear u had diagnosis of Endo. Mine been really bad lately and bladder constantly irritated. Off to see my gyneacologist tomorrow. Will need another lap and ablation. Hope u manage to get some relief soon. X

[Jpaterson]

Oh I totally sympathise! I have suspected endometriosis and for 10 plus years have suffered with severe bloating, pelvic pain, ovulation pain etc. but the biggest one for me is the endless frequent urination and constant uti’s (never any bacteria). Urology diagnosed as interstitial cystitis but no medication has ever helped it.

Now waiting for diagnostic lap or MRI, but long waiting list.

My biggest trigger is alcohol so I’m almost 6 months no alchohol and I’ve cut out caffeine and drink decaf and herbal teas. I Also have IBS (but this could be endo related) so have started eating gluten free and low fodmap.

I make sure I start the day with a boiled water and lemon and take D mannose. I also take a pro biotic to keep vaginal ph balanced.

At some of my worst moments with it I’ve felt severely depressed and the panic that sets when you feel it starting is just debilitating, so I know how you feel. You’re definitely not alone with it all and hope you find some relief soon. 🤗