Endometriosis and bladder issues

[Lucylight89]

Hi, I was diagnosed with endometriosis last September and I'm currently under investigation for bladder problems. (I had a cystoscope recently and they found out that my bladder is inflamed)

Is this a common complaint with having endometriosis?

If it is how do you manage the pains caused by it? I'm currently taking pregablin and have had to increase the dose twice. My GP hasn't exactly been helpful on the matter. He told me today that there are medications recommended by the urologist for the pain but they won't allow me to take them until I've completed the diet the consultant has given me. (In order to rule things out I suppose)

Any advise would be greatly appreciated.

Lucy

[Summer143]

Did they diagnose interstitial cystitis (IC) which is chronic inflammation of the inner lining of the bladder. I have or had both (had radical excision of endo) Google IC and endo and you will find that if you have one then the likelihood of having both is quite high. Yes, IC can be controlled with medication and regular bladder instills but its a chronic condition. Have you been advised to cut caffeine, alcohol, chocolate, spicy foods, citrus fruits and tomatoes from your diet - all are known to irritate the bladder.

[Lucylight89 in reply to Summer143]

Hi thank you for your reply, I thought the two could be related. Is IC also more common with IBS? I've done a bit of research into them and then I came across this forum. I've not been on an endometriosis forum before.

I'm on stage 1 of treatment which is diet. I've cut out all of the above. I'm only on my first week of the diet. My consultant doesn't think this will resolve the issue and has mentioned IC.

I'm currently taking pregablin for the pain but have to keep increasing the dose as it wares off.

My doctor (despite evidence of bladder inflammation and being diagnosed with endo via laparoscopy) keeps labelling me with chronic pain syndrome and keeps trying to get me to see a counsellor. He's doesn't seem to be interested in prescribing anything more or anything else.

Do you mind me asking how long did it take for you to get diagnosed with IC?

[Akxo]

Hi their. I have endometriosis and not long ago my doctor said i had an inflammed bladder. I got given oxybutin and it seemed to help. I no longer take oxybutin now x

[Lucylight89 in reply to Akxo]

Hi thanks for your reply.

Is oxybutin an over the counter medication or do I need to see my doctor to try it?

[Akxo in reply to Lucylight89]

Hi, it has to be prescribed by your doctor x

[Starry]

Hi bladder issues are what led to my diagnosis. Inflammation from an RV nodule and anatomical distortion of my bowel were causing issues

I also had IC which I got under control with anti histamines, stopping using toiletries with SLES and parabens and drinking more.

ichelp.org/about-ic/associa...

[Lucylight89 in reply to Starry]

Hi thanks for your message and the link.

I'll look up the cosmetic side of things and see if there's anything that I've been using. I wouldn't of thought about cosmetics. I think I've got a lot to learn.

[Starry in reply to Lucylight89]

I also had two plaques of Endo on the outside my bladder. They and the adhesions causing the bowel distortion have now been excised.

Yes, I was surprised and pleased. I changed to a SLES SLS paraben free own brand and stopped using it on my lady bits entirely. My hubby also benefited, a longterm rash on his face and thighs that we had we though was eczema vanished, it was caused by run off from the hair shampoo.

natural-health-information-...

[Starry in reply to Starry]

I moved to natracare organic cotton lady's towels too as always brand has parabens.

[Stellauk]

Do you have bladder problem all the time or only a few days a month? I had endometriosis invading the bladder. I only had bladder problems a few days a month. After the endometriosis was excised I no longer have any bladder issues. Did they see any endometriosis on the MRI scan?

[Lucylight89 in reply to Stellauk]

Hi, thanks for your message.

The pain has been constant for nearly two years but has progressively gotten worse as times gone on. My doctors assumed it was anything but bladder and gynae related.

I haven't had an MRI scan for endometriosis. They did an ultrasound and then the laparoscopy and found it whilst doing the latter.

Is it a common thing to have an MRI scan done?

[Fabbird in reply to Lucylight89]

Hi, I don't think the MRI scan is that common. My understanding is that it's not as accurate as a laparoscopy but better than ultrasound at picking up endo. The scanners are expensive and the NHS has a limited number so you often have to wait a bit. For it to work they give you a gadolinium contrast, the long term effects of which are not entirely clear. I opted for one to avoid yet another laparoscopy and it did show up a couple of patches of endo, but of course it's not possible to know what it missed. My BSGE consultant would have preferred to do a lap.

[Lucylight89 in reply to Fabbird]

Hi, I think I might bare that in mind for the future. I dont really like the idea of having to keep having laparoscopies and not knowing what the outcome will be. I've had two so far. First time round (6 years ago) they only found a small lump which they couldn't tell me what it was. Would of been nice to of had an MRI back then really. I'll mention it going forward though. Thank you for the information ☺️

[Stellauk in reply to Lucylight89]

I had a MRI ordered by a general gynaecologist. Then I was referred to a BSGE consultant due to the MRI result. Still have to have a diagnostic lap then a major operation to treat the condition. Before the operation I needed to go to the loo every hour or so. Nowadays can go on for several hours and sleep through the night.

[Summer143]

Hi, it took about 8 months to properly diagnose IC. I was put on a med called Vesicare first which worked for 6 months then stopped working, I was then put on Betmiga which was good as it had no side affects but never really worked. It was at this point that my urogynae did a rigid cystoscopy and I was diagnosed with IC. I am now on oxybutin twice a day and have monthly bladder instills of a drug called cystistat. I do pretty much follow the IC diet which seems to help.

I did have a hysterectomy at the same time as radical excision of endo but kept my ovaries. The IC did seem to flare up a few days leading to a period and still does (when period would be due) so could be hormone related. Did you have a rigid or flexible cystoscopy? Rigid is normally done under GA as your bladder is filled with fluid to stretch it. I believe its the only was to accurately diagnose the condition. Before I had endo removed I had endo on everything including the bladder, even with it removed it has made no difference to my IC symptoms.

You really need to be referred to a uro gynaecologist or a urologist. Even though I went private it still took time as I think consultants would rather try meds first. I was just happy that I was eventually diagnosed with a condition, you do get to the point where you think its all in your head!! I also had a second rigid cystoscopy after 4 months of meds and bladder instills to check if the IC was under control. Some of the inflammation had reduced but at least it was under control. Hope this helps.

[Lucylight89 in reply to Summer143]

Thank you for your message. They have mentioned the instills as part of the treatment plan I'm on. Next step is to take medication to stop me going to the loo as often as I currently do. I had a flexible cystoscope. I had read up on the rigid cystoscope I was quite surprised that they didn't get me in for one of those too.

I've not long been with my urologist. My previous doctor dismissed all of my symptoms and started recording tests as normal when they weren't. Thankfully my gynaecologist said he wanted to keep me on his books and has given me an emergency contact number. I'm not sure if he's a uro gynaecologist though. Would I need a separate referral for one if not?

It's more than helpful. I usually go direct to my sister who's got endo too but she doesn't have the bladder issues that seem to be effecting me.

[Summer143]

I guess if he has given you an alternative number then a referral is not necessary. I would definitely push for a definitive diagnosis. I wasted 6 months going to my GP who prescribed antibiotics for UTIs , which I did not have. I found it hard getting a diagnosis, my GP told me I was too young to have IC at 46!! I am sure consultants think it's all in our heads and seem quite surprised when they actually find something - but then the majority are men. It's not even as if I have used the NHS either, I get corporate BUPA cover through work, so have always gone private.

[Lucylight89 in reply to Summer143]

I'm just glad he's going to keep seeing me. He's the best gynaecologist I've seen so far.im pushing at the moment on the bladder side of things. The consultant doesn't think that the diet side of things is going to work for me. So he's told me to call in 6 weeks time to ask to bring the appointment forward should I need to.

I had the same thing with my GP. I've had to really assert myself with them. I have issues with antibiotics as it is ( I caught c.diff in hospital when I had my laparoscopy last sept) and they just want to keep giving them to me.

That's ridiculous as it is. My friends younger sister has it and I think she's early 20's. GP and consultants are like that too often. I've been told to see a counsellor take antidepressants and currently they keep labelling me as having chronic pain syndrome. They've even completely dismissed my even being diagnosed with Endo.

I wish I had private medical cover. When things started getting worse for me I paid to go and see a consultant and it set me back £175.

How do you manage going into work with having endo and IC? Does it become a lot more manageable with treatment for IC?

[Summer143]

Before I was diagnosed I had a fair bit of time off work due to the IC. its not nice always wanting to go to the toilet, the constant pressure on the bladder drove me insane. I work for a very large bank who have been really good about it - I personally think the larger the company the better you get treated as they hate bad publicity!! I do work shifts so pretty much managed all Hospital appointments on my days off. I found in hardest working nights for endo/period pain, but again managed to use annual leave when I knew I would have bad days. Thankfully endo has now been completely excised and hysterectomy (private BSGE centre), so now I'm still left with IC which still causes me grief but at least I know what it is and can control it most of the time. If you are suffering from bladder issues I would not wait for another 6 weeks I would insist on action now.

[Lucylight89 in reply to Summer143]

That's good they have been alright with you having time off. I'm in the same boat at my work. They keep doing occupational health referrals to try and help the situation. The only issue is that they monitor your the frequency of your toilet breaks and how long you're gone. Puts a lot more stress on me when I'm in. I've told them it's out of my control at the moment but it hasn't stopped them trying to cause issues with it.

I've been off work again for about three weeks now it's frustrating for me as I can see my career slipping away. I've asked to work from home but it's not part of their policy to allow me that. My doctor has been on holiday so I haven't been able to speak to him about what's going on. I have spoken to the hospital twice now about it. First time they said it wasn't bladder related and tried to fob me off and second time I spoke to another lady who has taken it more seriously and they're bringing my appointment forward thankfully.

Do you have any advice for pain management? I'm on a lot of medication which doesn't seem to be helping me any more. My doctor won't prescribe me the medication I need until I've had my hospital appointment.I'm still on my bladder diet and avoiding anything that causes issues but the pain is pretty consistent at the moment.