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[Lynne888]

Constant urination has driven me back to the forum to post (I often lurk!). A quick reminder.. I had this issue before, previous GP gave me Vagifem and it worked a treat for a number of years.. moved to Wales, new GP immediately took me off vagifem and left me with nothing. Fast forward a few years and I paid privately to my old GP to get Vagifem. However, it's no longer working or I have something else going on.  I went to see my GP here in Wales in March. I'd had constant urination for a few months. I tried everything to calm it. I suffer with interstitial cystitis so tried all of the calming methods for that to no avail. Doctor wasn't that bothered, asked for a urine sample which came back with a UTI she had never heard of it was so rare. Since then, the constant urination has not slowed, it's accompanied by back ache and stomach pain, sometimes extremely bad. I have now been diagnosed with 4 different UTI's in less than 6 months.. I don't think for one minute I've even had one. I remember a consultant once telling me that we all have a lot of bacteria in our bodies that can be picked up and assumed to be UTI's. In this case, I haven't had any burning, it's just frequency. I've asked if I can have a pelvic scan.. no. I said I would pay.. they said wait until bloods come back. Bloods came back today, nothing on them.. can I have a pelvic scan? No.. they want to do another urine test. I am at my wits end. For around 8 months in total I have been up several times a night to pee, I am exhausted. I cannot even go to the shop as I usually need the loo. I have a portable toilet in the car to allow me to stop and pee and quite often, if I'm out for two hours I have to stop twice if not more. I do not know what to do or say to get my GP to listen. I've been here before.  I went to see them with blood in my poo 6 years ago. They were not that concerned and to condense the story it took 10 months to get a diagnosis of bowel cancer..so now I'm worried they are not picking up on something that could be serious.  Please don't say move GP.  There is no other GP in the area. What are my options here? Anyone had similar and found a way of calming the peeing down? So far I've had vesicare (had that for years), vagifen and ovestin. I've had 5 lots of antibiotics. Doctor said if there are still red blood cells showing in my urine this time without a UTI (there has been red blood cells for months) she will send me for a pelvic scan.  I just don't know what I'll do if there are no red blood cells as I feel I will be just left to live with this frequent urination and I'm honestly going out of my mind. 

[Taz2]

Did you have an operation for the bowel cancer? Any operation in the pelvic area can lead to bladder problems according to my urogynae and as a previous cancer patient it's shocking that you are not being taken more seriously.

 Also, have you gone through the urodynamics testing recently? I take it you have had this done way back but it does need repeating sometimes to check how the bladder is reacting.

Taz x

[Lynne888]

I didn’t have surgery Taz, I was lucky. The cancer was contained in a polyp and hadn’t spread. I only had that removed. No chemo. I’m eternally grateful. I’ve finished the 5 year surveillance now. No urodynamics testing for many years 

[Taz2]

That's good news about the cancer.  Is there any way you could get referred for urodynamics testing again? It seems the only thing that hasn't been dealt with recently https://www.nhs.uk/conditions/urinary-incontinence/diagnosis/

Taz x

[Lynne888]

I would be afraid to ask but I guess I’ll have to see what happens when the urine test comes back from the lab. GP absolutely hates it if I ask for something to be done/checked and always refuses

[CLKD]

Constant urination has driven me back to the forum to post (I often lurk!). A quick reminder.. I had this issue before, previous GP gave me Vagifem and it worked a treat for a number of years.. moved to Wales, new GP immediately took me off vagifem and left me with nothing. Fast forward a few years and I paid privately to my old GP to get Vagifem. However, it's no longer working or I have something else going on.  I went to see my GP here in Wales in March. I'd had constant urination for a few months. I tried everything to calm it. I suffer with interstitial cystitis so tried all of the calming methods for that to no avail. Doctor wasn't that bothered, asked for a urine sample which came back with a UTI she had never heard of it was so rare. Since then, the constant urination has not slowed, it's accompanied by back ache and stomach pain, sometimes extremely bad. I have now been diagnosed with 4 different UTI's in less than 6 months.. I don't think for one minute I've even had one.

I remember a consultant once telling me that we all have a lot of bacteria in our bodies that can be picked up and assumed to be UTI's. In this case, I haven't had any burning, it's just frequency. I've asked if I can have a pelvic scan.. no. I said I would pay.. they said wait until bloods come back. Bloods came back today, nothing on them.. can I have a pelvic scan? No.. they want to do another urine test.

I am at my wits end. For around 8 months in total I have been up several times a night to pee, I am exhausted. I cannot even go to the shop as I usually need the loo. I have a portable toilet in the car to allow me to stop and pee and quite often, if I'm out for two hours I have to stop twice if not more. I do not know what to do or say to get my GP to listen. I've been here before. 

I went to see them with blood in my poo 6 years ago. They were not that concerned and to condense the story it took 10 months to get a diagnosis of bowel cancer..so now I'm worried they are not picking up on something that could be serious.  Please don't say move GP. 

There is no other GP in the area. What are my options here? Anyone had similar and found a way of calming the peeing down? So far I've had vesicare (had that for years), vagifen and ovestin. I've had 5 lots of antibiotics. Doctor said if there are still red blood cells showing in my urine this time without a UTI (there has been red blood cells for months) she will send me for a pelvic scan.  I just don't know what I'll do if there are no red blood cells as I feel I will be just left to live with this frequent urination and I'm honestly going out of my mind.

[CLKD]

Your GPs ain't on the ball - still!

If this is an infection that she apparently hasn't heard of before, why hasn't she referred you to an appropriate Consultant?  If this is a rare infection she should have been in contact with the Path Lab. to find out which antibiotic therapy is required and for how long.  Is each urine sample sent to a Lab., a dip stick test often shows signs of blood especially if a lady has vaginal atrophy! 

In the first instance I would contact the Hospital to see whether there is a Continence Nurse .  We have the right to be dry!   The other option is to send an e-mail to Dr Currie for which there is a fee.  Have U spoken to a pharmacist to see if vaginal atrophy treatment is banned in Wales?  If necessary, make an appt over the Border, have a long weekend as a holiday and get VA treatment? 

When I get the need2P feelings I take 'nurofen', 2 tablets 3 times a day for as many days as necessary until 'ovestin' kicks in. 

[Lynne888]

The urine samples have all been sent to the lab. Took another one in today. Can I contact the hospital off my own back (incontinence nurse) or do I need a referral? I have a friend who is a nurse practitioner. She said she would get me a prescription for vagifem.. she actually  got one for ovestin and told me that vagifem wasn’t prescribed in Wales and she couldn’t get it for me. I pay to have telephone consultations with my previous Gp in England. Vagifem isn’t working for me anymore. It’s stinging and causing stomach ache. I’m not sure if I stick with it whether the stinging would go eventually? I usually have to stop due to the discomfort. It’s much the same with ovestin. I can’t take ibruprofen due to stomach issues. I’d be very happy to pay to send an email to Dr Currie . 

[CLKD]

Have sent you a PM 

Stinging should improve once the vaginal walls take up the ostrogen - 4 me it was like razor blades  up there, after a couple of weeks symptoms began to improve.

[Lynne888]

I’ll stick with the ovestin and see how it goes. Good description about razor blades.. that’s just what it feels like but the extra peeing from it is terrible!

[Ayesha]

What a terrible experience you are having under the Welsh health system, living in London your story is totally alien to me, up to date I have had nothing but the best under the English health system. It’s crazy the difference considering we are all in the UK!

Try and stick with the Ovestin and use a feminine moisturiser which will help with the stinging from using it. 

[Taz2]

I have a friend who is a nurse practitioner. She said she would get me a prescription for vagifem.. she actually  got one for ovestin and told me that vagifem wasn’t prescribed in Wales and she couldn’t get it for me.

My friend is in North Wales and gets vagifem from her GP with no problems. Are you sure your friend is correct?

Taz x

[CLKD]

MayB ask a pharmacist about what is prescribed locally ?

[Lynne888]

I have a friend who is a nurse practitioner. She said she would get me a prescription for vagifem.. she actually  got one for ovestin and told me that vagifem wasn’t prescribed in Wales and she couldn’t get it for me.

My friend is in North Wales and gets vagifem from her GP with no problems. Are you sure your friend is correct?

Taz x

I'm not 100% sure of course, but she is a prescriber and asked at the hospital here (she works in gyno as well as being a midwife) and was told it's not available here on prescription.. the fact my GP took me off it immediately I moved here made me suspicious.. maybe it goes by health board?  I DID tell my GP I went private for it and she just nodded her head as if to say she understood why I did it

[Ayesha]

MayB ask a pharmacist about what is prescribed locally ?

Excellent advice!

Not right that some in the UK can get whatever meds they need and some not, it shouldn't be a postcard lottery. I would definitely do lots of research if I was  refused a medication because I moved into another area within the UK. I would also be furious if I had to pay privately for that medication.