Interstitial Cystitis and endo - Endometriosis UK

Endometriosis UK

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Interstitial Cystitis and endo

TennisAM profile image
9 Replies

Hey everyone

Has anyone been diagnosed with IC (via hydrodistention) but only get IC pain/burning symptoms during your periods?

Does anyone get pain/burning due to IC near the kidneys? Is that a thing that happens?

I haven't had a hydrodistention so not sure but in a recent lap I did have endo on both ureters.

Thanks all!

9 Replies
635703 profile image

This Endo Life Jessica Duffin has this and she talks about how to manage it with various means. Lots of information there online. She takes DM’s on Instagram.

TennisAM profile image
TennisAM in reply to 635703

Cheers xx

Bespp profile image

Hiya, I am not officially diagnosed with IC but as you describing i get the pain during period and the worse is on the last 2 days of my period somehow. Last year had an Mri scan to see if it has spread on my urethra and all that but apparently not according to the doctors but my body is saying something else.

Not much help but I though I will share. I have stage 4 endo and adeno.

The only thing It has been helping a bit recently is that I have been doing cupping and accupanture on my pelvic area and my overall pelvic pain has improved greatly from a 10 to a 5 now. I know is not a long term solution but if I can get relief for a while it is worth it to me.

Hope you get some answers and relief from the pain.


TennisAM profile image
TennisAM in reply to Bespp

Hi Bespp,

Thanks for your input and sorry to hear of your pain. I was under the care of an excellent urology department until recently and they told me that an MRI is not reliable for checking for urinary tract system endo. He says that the most reliable method is a CT scan with contrast is the most accurate. My local Radiology team said I was too young and they don't want to expose me to further radiation (I've had CTs when I was younger). So can't say it would have been successful to see my urinary involvement seen recently.

I think the urologist is right as MRI scan can only see "obvious" endometriosis greater than 5mm depth. Unless the ureters are blocked, I think most urinary involvement will be lower than 5mm.

Can I ask have they done a cystoscopy? Are you scheduled for surgery to have a look?

I also have history of stage IV and suspected adeno (shows up on scans but isn't seen on visual inspection). I get my symptoms 4 days before my period, during the bleeding and for 5 days after. So sometimes at 2.5 weeks of pain for a 7 day bleed.

Hope you don't mind me share my approach to the medical world. I don't pay any attention to them if my gut instinct says the opposite. Knowledge is power afterall. "Can I ask how you can say I definitely don't have urinary tract involvement from an MRI scan when it only shows obvious endometriosis that's 5mm or more?" It's possible to have 4mm of endo there and it wouldn't be seen. I'm also told the MRI scan can be 50-60% reliable for showing up endo. For example when I had an op in 2017 I had three areas of deep endo and only one was seen. My left ovary and colon were fixed and this wasn't picked up on either.

Ultimately (from my current gynaecologists perspective) it's only reliable when done with contrast injection and if the right consultant Radiologist (gynae) is reviewing it. To be clear we were talking about bowel involvement when he said this.

Anyway hope you get answers too and big hugs from me!

L0rlah profile image

I've got endometriosis and IC, I was diagnosed through a cystoscopy. I had this done under general anesthestic as I was really struggling with the pain prior to having it done. It's not a nice procedure but they found my urethra needed dilating and once I had that done I was symptom free for a while. It came back this summer when I was really stressed, but I started taking probiotics as I had awful gut issues and the ones I'm on now have cranberry extract in them and touch wood all of the burning has gone!! Even on my period and ovulation it's all gone and I had horrible burning and urge to pee especially at night. Hope you get some answers 👍

TennisAM profile image
TennisAM in reply to L0rlah

Thanks for your reply. How long did the effect of the hydrodistention last? Where did you feel the burning sensation? Have you had urinary tract endo? Hope you don't mind me asking. Just interesting to know the context. I take probiotics, they were helpful for my gut but not for the urinary issues. I have Cranberry juice too. Which probiotics were you using? Glad they helped! Much better than a procedure under General Anaesthetic.

L0rlah profile image
L0rlah in reply to TennisAM

Hi, I just constantly felt like I had a Uti I had burning pain in my kidneys and every time I need and I was up 4 times a night sometimes having a wee. I had the procedure done in the evening and stayed overnight in hospital. It honestly felt like peeing glass constantly for about 12 hours and I hardly slept the first night as I had the cystoscopy and dilation but after a couple of days I peed and it just felt better and I didn't have any symptoms for over 2 years, but my endometriosis and stress caused it to come back. I wasn't diagnosed with urinary tract endo but I know that something was done with my ureters during surgery. I had a laparoscopy in 2018 and am waiting for another one. For me my period isn't actually that bad it's ovulation that's the worst. I'm taking Boots probiotics with female support, is got b6 and cranberry extract I would really recommend they have made me feel a lot better. I can't tolerate cranberry juice as it's too acidic. Hoping you feel better soon. 👍

TennisAM profile image
TennisAM in reply to L0rlah

Cheers. I would guess it was a ureterolysis on your ureters which does suggest urinary endo involvement. That's what I've had done three times (due to endo). Good luck with it all. Hope you get an op soon xx

L0rlah profile image
L0rlah in reply to TennisAM

Yes that's exactly it!! That's what was written in my notes but it was never really explained to me. I was referred to a urologist straight away after my lap to sort out my bladder. And a bowel team as my bowel had issues as well thanks for your kind wishes, really appreciated! Hoping you get some answers too 👍

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