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coboffice

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Julianne

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Hi, I'm sorry to burst in like this, but I could really do with some advice at the moment. To describe my situation as desperate is an understatement, I feel despair and feel like giving up. I feel very depressed and like no one is going to help me cope or understand what is going on with my body.
Sorry to sound so negative, but I will try and give an idea of my situation:
For at least two years I had suffered with recurrent water infections, often with nothing to show after samples were sent away by my GP. Sometimes 'nitrates and blood' had shown and my GP prescribed antibiotics. So, for over two years, I would say, I have had at least 40 prescriptions of antibiotics until my system got so ill when I took any antibiotics, I couldn't lift my head from a pillow. I felt like I had a virus. Numerous blood tests and scans all revealed normal until I nagged the GP enough for him to refer me to Urology and they did a Urethra stretch under general anaesthetic. Just a few days after that (which was last November) my life turned to utter hell. As if it could have got any worse! Constant pain, needing to pee, unable to walk because of feeling like something was falling out of me and being so swollen down there after the stretch.)
(Just as an aside, I have suffered with Crohns in the past and have a permanent ileostomy and a full hysterectomy due to entriomitriosis. So, I already get tired easily because of the way my body now functions. However, I normally manage that quite well. It's just with this going on with my water works, I really can't cope and feel despair.)
My GP can't help me anymore. He has referred me to the pain clinic (I am waiting for an appointment) because I still get awful groin pain and constantly need to pee. I have pain inside and my urethra is now a different shape at the end and it has an opening which shows. It didn't look like this before the stretch. So I am wondering if any germs are getting in there in an instant to start an infection? 
I have been referred back to the Urologist and he says he can do nothing further to help me and even though I told him about how much more pain I now feel, he still discharged me?
My GP has referred me to Gyneacology and I have an appointment on Tuesday. But, after my most recent visit to A&E the Gynea team examined me again and said it was nothing to do with them and I need to see Urology. But, Urology will not help me, they have discharged me. I told my GP I feel despair and pain 24/7, all he does is give me more and more pain killers. I am now taking, Codydramol 2, when I need them. Dyhydrocodeine 30mg twice a day, Cyclizine 50mg twice a day, Ibuprofen 300mg three times per day, and Gabapentine 100mg at night (but they make me feel depressed if I take them for too long, so I try to only take them when absolutely necessary.) I am frightened and don't know where to turn now. I can't get to see the same doctor each time at my GP surgery and therefore do not get the consistency I need to get this sorted out. I do have a Gynea appointment on Tuesday but think they are going to say they cannot help me. I haven't the money to pay privately. Sorry this is so long, but is there anyone who can offer advice. I would absolutely and totally appreciate any support. Thank you.
MollyB

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Julianne, Sorry to read your story but you could be right about the stretch introducing bacteria which may be causing your symptoms. Have you had a recent urine test? You can also get the names of two doctors
who treat for bacteria. One is private but one does take NHS patients and COB hold details. Perhaps phone COB Monday and ask for details. I too have constant urge to pee and feel as if I am carrying an anvil around in my bladder.
Much love
Xxx
ModeratorKate

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Reply with quote  #4 
Hello Julianne
Welcome to our Forum, I am so sorry to read of your ongoing suffering, as you will see if you can read on here unfortunately, there is no quick remedy and also as we are all so different there is no fix o suit all.

On Monday as you will see the specialist Nurse is online at the COB office, so do please telephone, also consider becoming a Member of COB as the office can then give you so much more help , support and and advice.

Also our ADVICE LINE is available 24.7 whilst your message may be recorded, someon will get back to you if you leave your Telephone number.

Do keep posting, as we really do understand and will always listen and try to offer you some support.
Kind regards
Kate

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Julianne

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Reply with quote  #5 
Quote:
Originally Posted by MollyB
Julianne, Sorry to read your story but you could be right about the stretch introducing bacteria which may be causing your symptoms. Have you had a recent urine test? You can also get the names of two doctors who treat for bacteria. One is private but one does take NHS patients and COB hold details. Perhaps phone COB Monday and ask for details. I too have constant urge to pee and feel as if I am carrying an anvil around in my bladder. Much love Xxx


Hi Molly, thanks for your help. I ended up going to A&E because the pain was so bad. They prescribed me a 7 day course of Cefalexin 500mg 3 x day. Within a few hours of taking one, I could feel the difference, I wanted to cry because it had been so long since I felt well. The day after I felt even better. So, even though the urine sample said no nitrates, the nurse thought I might have a kidney infection and that would have been why I felt so confused and feverish. So, for the minute, I feel lots lots better, thank goodness. For how long, I don't know. I am trying not to think that far ahead. I spent most of Monday sleeping so I didn't get the chance to ring COB on Monday, but will do. I think it is going to be worth me joining to give and share support. I am sorry you are suffering too. No one can possibly know what this kind of pain and discomfort is like unless they experience it. Desperation and anguish are two possibilities. I am sorry you suffer in a similar way.
(I went for my gynea appointment and they said it was nothing to do with them! So it's back to the drawing board.)
Julianne

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Reply with quote  #6 
I just wanted to add a thank you to Kate for answering my 'ever so desperate' plea. I will ring the COB offices. Thanks for your advice.
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