Constant need to pee

[Henry1858]

Hi all.

I have suffered with chronic pelvic pain for over two years now. It is getting worse.

Every few weeks it flares up - constant need to pee, burning in perineum and pain when pushing to pee. I also have spasms in my perineum and urethra.

Every time this happens, I have my urine tested and it comes back normal. So I doubt it is bacterial.

Does anyone out there suffer with similar symptoms and have any advice or suggestions? I would be very grateful.

Thanks.

Henry

[mollypopple]

Hi Henry

I have suffered with pelvic pain for four years endured many tests to finally diagnose pudendal neuralgia your symptoms mimic nerve pain...

[Alaine1 Administrator]

Hi Henry

It sounds to me as though you may have bladder pain syndrome (sometimes still referred to as IC). I have a range of reasons for my pelvic pain but one of them is bladder pain syndrome. The urine tests will show no infection despite the symptoms suggesting otherwise. There are many ideas about the cause of this condition but nothing has been proven, and it might turn out that there are a variety of causes. I myself very often experience pain in the urethra and spasms. I often use buscopan for these which sometimes needs more than a days treatment before the spasms stop. It was something another specialist suggested after my lap and the anaesthetist agreed it was a good idea. It won't have much impact on your bladder or urethra as that needs a different approach. There are lots of options out there - some medical and some lifestyle, it's worth trying out the lifestyle first and if that doesn't provide enough benefit use medical treatments alongside. There are a lot of good websites on the management of bladder pain syndrome (some still use interstitial cystitis/IC) . You won't necessarily have every symptom or severity as it can range from mild to severe but it might be something worth discussing with you GP. The RCOG have recently published a new set of guidelines for its diagnosis and management, it is written by gynaes but the management is the same. Judy is at some point going to add it to the Pelvic Pain Support Network website so it might be worth a look but please remember it will make reference to some women's health conditions - for you just focus on diagnosis and treatment. I hope this helps

[Henry1858 in reply to Alaine1]

Hi Alaine

Thank you very much for your excellent reply. I have just finished reading the IC guideline on the Pelvic Pain site - overwhelming, but much to take on board in stages.

I have booked to see my urologist. I think a cystoscopy is the next step. I am on Pregabalin and Duloxetine and have had a few sessions with a pelvic floor physio. But invasive 'wand work' seems to have exacerbated my symptoms.

I am very tired and miserable, but helped by the knowledge that there are others out there with the same problems and worries.

Have your symptoms eased at all?

Thank you.

Henry.

[Alaine1 Administrator]

Hi Henry

It can be very overwhelming in the beginning to take in all the info. Unfortunately I'm at the very extreme end of the IC/BPS scale and have run out of options so have to now have my bladder removed and reconstructed but this is very rare which will happen next year. But please don't worry about that as it's very likely you will find treatments to help you.

The physio is a good idea as often the pelvic floor muscles do become involved which can increase symptoms- I've never really got on with the therawand so the women's physio has used other ideas. I also use pregabalin and amitriptyline and other pain medications

It maybe you have a combination of problems cause pain so please keep an open mind. I myself suffer with endo and adenomyosis so know how miserable the pain can make you but please don't lose hope

[Henry1858 in reply to Alaine1]

I'm sorry you suffer so greatly. I hope the whole procedure is successful.

I try to stay positive, but it is, as you know, difficult. I will persevere with the physio and with the drugs.

Thank you.

Henry

[Alaine1 Administrator in reply to Henry1858]

Thank you I'm sure it will be fine when it happens

Yes definitely difficult to stay positive at times but I think it's good to do something for yourself no matter how small. I love my mindfulness colouring books, fluffy socks and favourite hand cream. Maybe yours could be a good film?

[andy1012]

I'm sorry for the situation you are in. I know some supplements can help to relieve the urinary symptoms, including buchu, Chinese ginseng, talcum, antago seed, dianthus superbus, and polygonum aviculare. But before you take these herbs, you need to consult a herbalist for the types and dosage of the herbs. You can also take herbal medicine called diuretic and anti-inflammatory pill. Good luck.