Literally cannot take any more of this pain

Posted , 10 users are following.

Pain so bad that I cannot move my legs until I have passed the tiniest amount of Urine

Pain between my legs that is only relieved if I pass urine

Crying in the bathroom because you cannot empty your empty bladder that is telling you its full...being sat there for up to 30 mins straining to get anything to come out as that will stop the pain immediately

Breaking down in tears when someone asks how you are

Taking so many tablets you feel almost like a machine

Oh and lets not forget the effect it has on your life, cannot go for a summer walk in the beautiful countryside as I know I will need to have a wee at some point

Cannot drive too far without knowing where the toilet stops are

Not wanting another relationship as the pain could get worse if I have sex

Trying to explain to colleagues and friends how much pain you are in when all they are thinking is..."Its just a bit of Cystitis surely?

Any of you experience any of the above?

Do any of you "get me"?

Well if so I would love to know how you are coping.

I am 50 and had this almost seven years and I am starting to feel its winning and I literally cannot take any more of this life in so much pain

Sally x

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16 Replies

  • Posted

    Hi Sally I'm really sorry to hear you are in so much pain. Are you seeing a urologist? What have they said? Have they completed any tests?

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    • Posted

      Sandy I have been under a brilliant team in Salisbury but as I mentioned above I am in my 7th year and its just taking over my life. I am worried about my job and although I have a brilliant employer I today refused to be signed off as they wanted as I don't think my HR team would understand why I feel so totally awful

      I am now on anti depressants to help with the pain

      I was due a Rigid Cystoscopy a week ago but the sample I submitted when I was admitted onto Day Surgery showed the bug they thought would have gone was still there so no operation for me to soothe the pain.

      If it wasn't for my kids I would be under the next bus. I sincerely mean this

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  • Posted

    Sally so sorry to hear about the bad time u are having. Yes this is a terrible condition and the pain some of us get is beyond anything that i have ever had. Some people compare it to having cancer pain. Have you been diagnosed? What meds are u on.? I was diagnosed in February 2017. I take no meds, only zoloft for severe anxiety. I had pain all the time. And going to the bathroom at least 6 times a night. My urologist wanted me to go on Elmiron but my ins company only paid so much and i would have to pay 320. Us dollars a month. So i decided to eat properly, which was alot of chicken and stay away from the foods and drinks that cause flares. Then i got myself a tens unit and i would use it when ever i needed it which in the beginning was every day. I am glad to say that as of today my pain is no longer a problem, dont get me wrong i do have a flare when i eat or drink something that i shouldn't but it doesn't last long like before. So i hope this helped some. If u need info on anything else please feel free to send it

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    • Posted

      Hi Brenda

      I am in the UK and we tend to do things differently over here and we are so lucky we do not have to pay for treatments. Tens Machine doesn't help I am afraid sad

      I was diagnosed late 2011 hence my feeling of utter despair right now

      Thank you for taking the time to message me Brenda x

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  • Posted

    I am in my late 60's and I understand your pain and how it affects your life. My uro gyno told me to soak in a bath tub, and Im on estrogen cream. This cream is essential due to our age, as we are in a state of atrophy. Heating pads on the front and back. I hope this can help you. The cream has transformed my pain so my life is manageable. I don't know where you live but uro-gyno's are the medical person for your needs. You are not alone!

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    • Posted

      Hi there

      I am actually in the UK and have been on everything there is but I did not know about Estrogen Cream The pain between my legs could be nerve pain I was told today but I think it is something I will definitely investigate. Thank You for taking the time to reply x

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  • Posted

    I can relate.  I’m 51 and luckily, my IC hasn’t flared in a few months. Did yours go away then come back?  I’ve had the same feelings for most of my adult life, especially the last 5-7 years I’d say. I didn’t get diagnosed under 2015 and felt so much better when I started Elmiron. I still had problems though so doc gave me pyrdium. Continued have problems of severe pain and needing to go back only dribble, crying, and it would hit so quick. Doc checked my bladder with a thing like an ultrasound and found my bladder was completely empty (unusual for anyone) but still trying to urinate, this spasming.  So along come the added diagnosis of overactive bladder and a new medication which helped too. I went several months with not as bad flares and then now a few with no flares. 

    I’m so sorry you’re in so much pain. 

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    • Posted

      Hi Debie so I was diagnosed end of 2011 and given Elmiron but after three months I saw no improvement and was taken off. I just get by on painkillers and anti depressants now for the nerve pain

      Its the most rubbish way of feeling I have ever experienced

      Thanks for the reply x

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  • Posted

    Hi Sally I'm so sorry that the pain is so bad right now. I know exactly how you are feeling. I'm 49 and been having IC for 15 years now. Its a nightmare. Seems like it does get worse as I get older. What meds are you on right now?

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    • Posted

      Just anti-depressants for nerve pain and co-codamol for pain in general

      when I have a bad flare as I am now you just cannot function

      The tablets can really knock me out!

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  • Posted

    Hi Sally, I’m sorry you’re suffering so much.  I can certainly relate to some of your symptoms, although I’ve never had pain involving my legs - that sounds awful! Can I ask if you’re going through the menopause? Or have had any gynae probs? I was in a similar state to you a few years ago and I really didn’t want to go in, but I had had an early menopause (aged 30) and so

    My estrogen levels had been very low for a good few years before I got bladder symptoms.  As soon as I started HRT my symptoms began to improve immeasurably.  The lining of the bladder is estrogen receptive the same as the uterus and the vulval area.  If you’re not sure you can have a blood test to find out what your hormone levels are.  I still get flares so I’m carefully to follow the IC diet and drink plenty of water as being well hydrated calms the urinary tract. But overall my life began begin worth living again when I was given HRT.  There are many women suffering bladder problems whose doctor’s don’t realise the connection between that and low estrogen levels - thank goodness my urologist did! Do you think this might be the case with you? 

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    • Posted

      Hi Shirley

      Yes I have been going through the Menopause the last year or two and had the coil fitted in January this year as I was bleeding so heavily so long

      I cant have HRT as I had two blood clots on my lung back in 2007 and My GP put me in front of a Consultant about having the HRT Patch but I was advised against this for safety sake

      I did not know that the Estrogen levels were important to the Bladder.

      I am now waiting a cystoscopy in two weeks time so will talk to my consultant

      Thanks so much xx

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    • Posted

      Hi Sally,  ask about vagifem HRT vaginal pessaries.  These are easy to apply and will release  estrogen into the surrounding tissue and bladder but won’t be absorbed into your body like systemic HRT.  Although it is still HRT it is very low risk and should be suitable for you.  It might make all the difference especially as you’re having menopausal symptoms.  I’m

      sure a sympathetic urologist/gynaecologist will realise that it’s all about weighing the risks in individual cases and the risk with vagifem is negligible.  Hope you find a path through all this - it’s a painful journey but there is light at the end of the tunnel! 

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  • Posted

    Hi Sally, Hi, has anyone suggested you could have Interstitial Cystitis? Medics seem to ignore this and prescribe Antibiotics which do nothing for IC. I had problems for ages before I sussed out that it was IC. I know what you are going through as the pain is terrible and no one seems to realise what you are putting up with.

    Then 7 years ago I started taking Pukka Aloe Vera and Serrapeptase and have been free from pain since (NO I am not an Agent for these products ha ha)

    Try taking Serrapeptase tablets for inflammation - wonderful to clear up bladder inflammation (whether its cystitis or any other problem). When I had a flare up I took 2 tablets every 2 hours during the day.

    Pukka Aloe Vera tablets are very good but not the ordinary Aloe Vera - must be freeze dried and only the inner leaves used - Pukka are perfect. If you buy them from USA they cost over 100$ but they are available online from Naturisimo for about 15 pounds a bottle with free postage.

    You must stop taking anything with Cranberry in and never use Green Tea proucts as they irritate the bladder - these are ok for ordinary cystitis.

    Good Luck

    Jean  

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