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Nikki99yellow

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Posts: 17
Reply with quote  #1 

Hi all,

I am looking for some advice as I am so down in the dumps.

I am 18 weeks pregnant with twins after a very sad and heartbreaking time to get here (long sad story but have had 4 + years of fertility treatments which include a miscarriage, failed embryo transfers and a termination for medical reasons of a very much wanted baby), so I am so thrilled to be pregnant with twins and things progressing well so far.

Due to the fertility roller-coaster, I have not been officially diagnosed with IC, as you have to make sure you are not pregnant during a cystoscopy, medications not safe etc. To give a bit of history, I have always had a "sensitive" bladder from childhood and remember having UTI's as a child and into my 20's. In my early 30's I was put on the fertility drug Clomid and that's when my problems began- I knew that the symptoms were different from a typical UTI but had no clue what it was. I am fortunate in that I can hold in my urine, but I get symptoms of a inflamed bladder which comes and goes during these flares. It seemed to coincide with ovulation and before my period and did not seem affected with what I ate. I found an understanding urologist but couldn't proceed further due to fertility treatment, who suspected it was IC. I managed my symptoms with probiotics and anti-histamines. I had a good 6-9 months after with pain on and off but it did eventually subside last August and only reared its ugly head again at around 16 weeks pregnant. 

My urologist will not see me until after the birth and I feel so low that it's came back. Could it be hormone related? Could it be due to me eating rubbish in my first trimester? Could it be the babies pushing on the bladder? I am back to eating more healthily again and my consultant says I can take Piriton which does help to take the edge off. I have good and bad days with it since it has started again and I find myself becoming fixated on my bladder and not enjoying my pregnancy.

I am just so scared it is back forever, and I don't know how I will cope during the next 18 weeks! 

Will be re-joining as a member again so any advise anyone has would be appreciated.

Thanks so much

xxx

I know I am in the minority in that it has come back during pregnancy and most people have 

Nikki99yellow

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Posts: 17
Reply with quote  #2 
I meant to also ask if anyone has any contact details of a urologist who would see a pregnant person? Mine categorically refused and I feel I do need some support. I live in Scotland but willing to travel. Now even thinking if I have some deep-rooted infection that was not treated years ago, as I can retain lots in my bladder (had a CT scan done a few years ago of my bladder and kidneys), and my main symptoms are a burning bladder and sometimes urethra burning. I can hold in urine for hours and do get relief once I have emptied my bladder, but it is short lived when I have a flare. I urinate about 8-10 times a day, even when drinking loads of water (4-5 litres). Would a consultant do a broth culture on me privately when pregnant? 

I just don't understand why it comes and goes. Could it just be co-incidental that its back during pregnancy? My last urine culture only had a few RBC and protein. I have never had a positive culture via the NHS.

Mind is pickled just now.

x
ModeratorKate

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Posts: 1,651
Reply with quote  #3 
Hello Nikki99yellow.

First HUGE congratulations on your pregnancy with Twins, sincerely hope all goes well for you.

Second how so disappointing for you to have a load of bladder problems to cope with as well.

Whilst I cannot offer you any answers, I am pleased to see you are rejoining BHUK, as you will receive so much more help and advice than we can give you here on the Forum, apart from anyone who has had similar symptoms and can relate with you. Do PLEASE contact the Office on Monday as Susannah I am sure will be able to give you some good advice, and may be able to suggest contacts for you in Scotland.

Personally am sure Hormones do cause a load of upheaval so would be causing some of your symptoms.

Do hope some our the Forum members can offer you some comfort.do keep posting and asking as much as you like, we will always listen ,.

Take good care and enjoy your journey, as much as you can.

Kindest regards
Kate 

EDIT from our website,

http://bladderhealthuk.org/cob-foundation/special-advisors










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tigger11

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Posts: 10
Reply with quote  #4 
I do know that Prof M-L has treated someone who was pregnant but unfortunately he is in London so I don't know if that will help you, I do hope so
Nikki99yellow

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Posts: 17
Reply with quote  #5 
Hi Tigger,

Thanks for this.

Unfortunately I live in Scotland, but would be willing to travel if he could help!

Do you know if he takes NHS referrals?

Thank you

x
tigger11

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Posts: 10
Reply with quote  #6 
Hi Nikki
I can highly recommend him but I'm afraid he is only taking private patients at the moment.  If you don't want to go privately can I suggest you ring Bladder Health because,  I'm not sure, but I think they may know of another doctor who is NHS and who uses the same treatment as the Prof.   Unfortunately I think this doctor is also in London.   Bladder Health will be able to give you all the contact details you need as well.  Good luck
Nikki99yellow

Registered:
Posts: 17
Reply with quote  #7 
Thanks for this Tigger- know who you are talking about and I have his contact details. I have private insurance too. How long did you have to wait to see him? x
tigger11

Registered:
Posts: 10
Reply with quote  #8 
I started seeing him a year ago and I think I waited six weeks, but that waiting time may have changed since.  I was so ill when I started seeing him and he has given me my life back.  Perhaps if you explain you are pregnant etc. he might be able to see you a bit sooner?  Do let me know how you get on
Nikki99yellow

Registered:
Posts: 17
Reply with quote  #9 
Hi will do Tigger. Thanks so much. x
tigger11

Registered:
Posts: 10
Reply with quote  #10 
Hi Nikki
I have sent you a private email via the link by your name, please can you let me know if you receive it?
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