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jeananne

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Posts: 227
Reply with quote  #1 
After having an Overactive bladder and bladder pain for over 10 years now, i finally got to get an appointment at a Pain clinic.  In all honesty, I was very disappointed by treatment. After a 5 minutes talk with a doctor I was literally asked what do you think we can do?  Where i tried to discuss Codeine being my only way to stop the pain  I felt he was thinking I just want more of this like I may be addicted or something.  I suggest maybe I could try "Tens" or could I learn about that method, would it help me.  Then the consultation stopped and I was given an appointment to trial a tens machine.  Where do the electrodes go?  Sounds implausible to me?  Any answers out there in "bladder land"?   Also why I have come on to this site today, are there any people who find lilke me that my urinary system is very dry? I tried massaging down below last night, was in so much pain, been sore all day and several tablets were not helping. I realised that I was very dry and massage maybe making it worse.  Are there any medications to lubricate the bladder system?  I really need someone to help me with this. Cannot get help I need from doctors. Thanks everyone, Regards Jeananne
Moderatorsusan

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Reply with quote  #2 
Oh how desperately disappointing for you to be brushed off like this and I'm sorry you were treated with such rapidity. I wonder if you could get a referral to a pelvic pain clinic rather than just a general pain clinic. There are a number across the UK and BHUK have more info. The BHUK office have info on the PTENs treatment which is placed on the lower leg and is completely pain free. Its a very easy system and you can be taught to do it at home. I use it for when my bladder pain is bad and it has really helped. I have a letter from my pelvic pain physio so I can carry it with me abroad and it has also helped for non bladder aches and pins too. The dryness down below sounds like vaginal and bladder atrophy and ideally you should be referred to a uro gynae for treatment asap. Sadly as women go into their peri, menopause and then post menopause years our oestrogen levels disappear leading to atrophy, increased UTIS and bladder pain.Oestrogen is needed for the vagina to maintain its natural flora and lubrication.. Interestingly, the bladder also needs oestrogen and some people see a reduction in pain after adding this hormone. Oestrogen also has natural antibacterial properties particularly against e coli infections and in studies increasing the levels of oestrogen in the vagina has a beneficial effect on the bladder as the wall between the bladder and vagina is very thin and by plumping up this wall, the bladder becomes strong and is able to fight off infection better and dial down pain receptors. Obviously with any HRT treatment, you must take into account any family history of cancer but I'm aware of gynaecologists who will prescribe local HRT such as Vagifem as it is so localised to patients with a history of breast cancer for example and is not systemic so will not affect the rest of the body. Stick with it as it can take anything up to a year before symptoms finally settle.

You could also try a simple vaginal moisturiser as well which a number are finding helps with burning over the vulval area as well as the vagina. Its called Yes and is completely additive free. Sylk is another one with no additives. Links below https://www.yesyesyes.org/why-yes/ky-jelly-how-does-yes-compare/?gclid=CjwKEAjw_uvHBRDUkumF0tLFp3cSJACAIHMYwD9q9KQLl56HBGZqrpjpuKvc34Ok-G-4ONFliSBt4hoC0fnw_wcB http://www.sylk.co.uk There was an excellent documentary on television the other night about the effects of the menopause on women and it may be worth searching out via BBC I Player. Again BHUK has further info on the effect of hormones on the bladder and the recent winter newsletter had a great article written by a gynae with more info. Give them a call on Monday.
jeananne

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Posts: 227
Reply with quote  #3 
Thanks for the early response.  Yes it was really quite horrendous to find once again to get a member of the medical profession who was completely void of sympathy or compassion.  I was trying to explain that while I had been waiting for the appointment to go to this clinic, I had stopped taking all of the bladder medication because I was having so many nights where I was up and down every half hour to do a wee and it was like it was doing exactly the opposite than what is says on the packet. Because, without this medication I found that I needed more Codeine during the day because I was getting more sore.  I was trying to explain that the amount of tablets I had prescribed were not lasting me so I needed temporary help while I was waiting for the help from them.  He completely ignored me and I realised I was not going to get help from him. Anyway, I have printed your notes out and I have had the hormone cream you insert vaginally once before but only few about 2 months.  I did not notice any improvement but I will ask the GP about it againl  I  am 73 now and not likely to get HRT.  But I also note your experience of the Tens, you have made me mor hopeful.   I will ring the office next week.  Thanks for now,
ModeratorKate

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Posts: 1,590
Reply with quote  #4 
Hello jeananne
Sorry your having such dreadful scenario that is ongoing.

Found this article re PTENS very technical but informative.

https://bmcurol.biomedcentral.com/articles/10.1186/1471-2490-13-61


Also I really would consider asking your Doc to try the internal HRT again( I use Gynest) and have really found with perseverance , and using just twice a week , have seen improvement.

Do keep posting as this really does help others looking for help.
Kind regards
Kate

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jeananne

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Posts: 227
Reply with quote  #5 
Thank you for your help I have printed out the "Tens" info and at least now I know what to expect and what the procedure is.  I have been reading more about the eostrogen problem and I was thinking this is one area to discuss with GP again.  I was given this  at the hopital when everthing else had failed but I cannot remember now how long I had to use it.  I did not notice any improvement but I am pretty sure some of my pain is caused by the dryness of the urethra and it feels sore where the passage ends and bladder is joined.  I tried showing the doctor this by drawing the bladder but he showed not response at all. I now realise that by having the cream in the vagina can help the urainary tract so perhaps I did not have this treatment for a period long enough to help.  As usual this forum is so good at giving suggestions which can help.  I Have at least 3 weeks now to get appointment with GP of choice but I will come back with the outcome.  Best wishes.
doloroso

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Posts: 63
Reply with quote  #6 
Good Morning Jeananne.

How awful for you.

You have come to the right place. Each case is subjective but the support is 100%.

I am one of the lucky ladies. I have been on long term antibiotics now for about 3 yrs. for ongoing UTIs. I see my Urologist every 6mths for follow up.

I use YES. I have been using it for about 18mths after having tried various products and do find it helps me. I insert the cream every 3-4 days.

I was prescribed Vagifem but it did not agree with me. It caused bleeding no less!

The codeine can cause constipation which could put pressure on your bladder causing you more pain possibly.

Do keep posting. I wish you good luck and send you positive vibes.[wave][wave]


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