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MagicMurphy36

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Posts: 25
Posted Reply with quote  #1 
Hi everyone

Can anyone give me advise or have similar symptoms, I've been in a horrible flare for 8 weeks, I've been doing well over a week ago with the amitryline but this time last week I made a terrible mistake of introducing some different foods and the next day my flare has got worse again like at the start.

That was a week ago but I noticed in the last three days I seem to be having uretha burning pain and sort of stabbing pain on and off that wasn't there in my original flare. I found it difficult to walk bout a lot of sit comfortably. I don't know if it's a uti I don't have cloudy urine or smell urine or burning while peeing. So unsure.

Can anything help for the pain? Wish this would leave me alone and give me a break.
Ania

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Posted Reply with quote  #2 
Yes I believe you on that ! I hope you get some help
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Vania Anna terzopoulou
Annabel1979

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Posts: 38
Posted Reply with quote  #3 
Hi there.. Ive had dreadful pain for over two months...same symptoms as you..Given lots of different diagnosises.. suggested IC, bladder endometrosis (but dont know as haven't had the laproscopy as sounds a bit harsh).

Finally given a couple of explanations that sit better with me and beginning to treat. Firstly my gyno suggested i had a hormone imbalance (i came off the pill 4 months ago and then two months ago had a huge and stressful upheaval in my life and stress and weight loss can also attribute to estrogen loss). An estrogen deficiency can cause urethral syndrome she said (cystitis like pain, cramps, vaginal pain).  I am now back on the pill and have started to slowly see a difference. so think it's worth checking hormone levels. I can't believe will all the tests i had no one even suggested hormones.

Second of all.. Im starting to see IC goes hand in hand with pelvic floor dysfunction. I just had a session with a women's physio and under an ultra sound they showed me how 'high' my pelvic floor was (prob due to stress and the related pain) and that it was pushing on my bladder..

I recommend finding a women's physio. Where do you live? I went to an amazing place in Barnes in London, she spent so much time with me and was really caring (unlike the other 'specialists i have been to). It's called White Hart Clinic.  It seems to me conventional doctors dont even recognise the physio/ muscle side of this  (and generally dont know what they are doing).  Anyway i'm slowly on the mend (not affected by what i eat, but symptoms sound same of you).

What's amitryline like btw, make you really drowsy? How long does it take to work.. i'm getting better but about to move from singapore back to london to look after my mum with dementia so quite fancy something to get my through as removing stress from my life right now not really possible!
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Annabel fox
Annabel1979

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Posts: 38
Posted Reply with quote  #4 
Quote:
Originally Posted by MagicMurphy36
Hi everyone Can anyone give me advise or have similar symptoms, I've been in a horrible flare for 8 weeks, I've been doing well over a week ago with the amitryline but this time last week I made a terrible mistake of introducing some different foods and the next day my flare has got worse again like at the start. That was a week ago but I noticed in the last three days I seem to be having uretha burning pain and sort of stabbing pain on and off that wasn't there in my original flare. I found it difficult to walk bout a lot of sit comfortably. I don't know if it's a uti I don't have cloudy urine or smell urine or burning while peeing. So unsure. Can anything help for the pain? Wish this would leave me alone and give me a break.

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Annabel fox
Annabel1979

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Posts: 38
Posted Reply with quote  #5 
Oh and in terms of pain relief have you tried Azo? I bought it on Amazon.. its not meant to be very good for you long term but when you are that desperate you dont care. it's the only thing that seems to get rid of the pain for me. jsut be prepared for illuminious orange wee!
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Annabel fox
MagicMurphy36

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Posts: 25
Posted Reply with quote  #6 
Hello Annabelle

Thank you so much for your reply. I will look into those suggestions, I had been wondering myself the possibility of my hormones playing a role in this as like yourself I've had a very stressful year before the flare started two months ago and I've also lost quite a bit of weight recently. I have been on the pop pill for over 10 years and wondering if low oestrogen could be an issue.

I have tried Azo before and sadly didn't suit me made more burning for me. I have found with Amitripyline that the sides effects were not very nice to start with, very drowsy and lightheaded but I found it did help me relax and sleep better at night. Sadly I found after increasing the dose it started to cause me urinary retention so I had to go down to a very small dose. It not really helpung much with pain.
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