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Kimberly

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Reply with quote  #1 
Hi - does anyone have any advice or knowledge on this one? I'm 17 weeks pregnant and experiencing the worse symptoms I've had in years. It's unbearable. I'm on the Prof's AB regime so things haven't been too bad for the last few years. I'm still on the ABs, but now feeling as bad as I've ever felt (pain and swelling). I know in pregnancy there are a number of reasons that bladder symptoms can get worse (baby pressing on bladder, larger urethra, some medications being passed out of you more quickly than when you aren't pregnant), but I need some advice on what to do to help if the moderators or any out there has any advice. Thank you! 
ModeratorKate

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Reply with quote  #2 
Hello Kimberly
Oh dear so sorry the symptoms are marring the joys of your pregnancy.

Do PLEASE ring or e. mail Susannah at the BHUK, she will have some,really helpful advice to assist you, as she is our pregnancy advisor.

Special Advisors

Bladder Health UK provides special advisors who are volunteers, either members or professionals. This service covers help and advice for young people, those considering surgery, how to cope during pregnancy, male sufferers and nutrition and herbal remedy advice.

  • Serene Foster – A qualified Nutritionist and Herbalist Consultant
    See our Nutrition Service: Click here for more info
  • Gordon Willetts – Male Sufferers Advisor
  • Brenda Waller – Surgery Advisor and “Friends Group”
  • Susannah Fraser – Pregnancy Advisor
  • Mary-Lynne Van Poelgeest-Pomfret - International Liaison to Trustee Board

If you are a member and wish to speak with a special advisor, please contact us.

 
Also hope some others will post,

Kindest regards
Kate




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Kimberly

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Reply with quote  #3 
Thanks Kate. I just tried the office, but got the fax response so assume it’s closed for the day. I’ll try tomorrow. If I email is it just the info@ email address? Thanks again
ModeratorKate

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Reply with quote  #4 
Hello Kimberley
e. mail.......... susannah@bladderhealthuk.org

Oops re the phone, I think new systems have been put in but I will contact Sussanah, and I am sure she will assist and advise.


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Kimberly

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Reply with quote  #5 
Brilliant thanks. I'll send her an email too. Have a lovely weekend x
BHUKOffice

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Reply with quote  #6 
Hello Kimberly

Congratulations on your pregnancy!

I must apologise that you have had problems getting through to the office today. I have been on annual leave and will also be off on Monday too. Something has gone wrong with the advice line as it should allow you to leave and message and when I rung the line a few minutes ago it is not allowing this.

I have had two pregnancies with IC. For me the first trimester was difficult but things felt better during the second trimester when the baby rose higher into the pelvis. Have you contacted the Professor and told him that your symptoms have worsened? He may suggest a 'pee and flee' to assess what is going on at the moment.

Are you a member of the Facebook page for those in treatment with the Professor. If not, you might like to join as there is a lady on there who is at roughly the same stage of pregnancy as you as she is experiencing similar symptoms. It may be helpful to both of you to be in touch with one another.

We also have members who have recently been pregnant who may be able to offer support and encouragement. If you would like to message me your number, I can give you a call when I return to the office on Wednesday.

Susannah

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Kimberly

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Reply with quote  #7 
Hi Susannah - no worries on the phone line and thanks for the quick response!

I have advised the Prof's team who replied today to say "wait and watch" until Monday. Unfortunately I'm not in the country right now, but will come back in December for an appt if it's needed. I just want to do what's best. What's a pee and flee? One of their urine tests?

I'm in my second trimester and things are just worsening. Obviously I hoped they would improve at this point, but not to be. I'm glad things were ok for you in the end! 

Can you send me the link for the FB group please. I'm not actually on FB anymore, but will set up a new account.  

I just emailed you before seeing this so will send you my number. Would be great to chat.

Thanks so much for getting in touch.


L8tti_x

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Reply with quote  #8 
Hi Kimberly

Congratulations on your pregnancy! What an exciting time...

I gave birth to my little boy in August and like you I was under the care of the Prof the whole time with a chronic uti which began in March 2016.

Unfortunately for me my symptoms were worse throughout the pregnancy (sorry I can't be more positive). I had a huge flare in the first trimester and although it settled a little I was definitely more uncomfortable than when I was in a non-pregnant state. The Prof took good care of me and I had four weekly urine checks to monitor the situation closely. I ended up on two antibiotics.

On a more positive note I had an uncomplicated normal delivery and my bladder has been behaving itself ever since. The infection is still there but my symptoms reduced greatly as soon as my son was born. I made it clear in my birth plan that I was not to be catheterised without explicit consent but luckily my 6 hour labour went smoothly and no catheter was required.

I hope this has been helpful in some way... I wish you all the best.

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Lotti
BHUKOffice

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Reply with quote  #9 
Hello Kimberley

I have sent you a private message.

Best wishes

Susannah x

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Kimberly

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Reply with quote  #10 
Thanks for your message Lotti. And congrats on your baby boy! I do appreciate hearing from others even if the news isn't always good, although I'm glad things have settled down for you now. It's reassuring in a way that others are finding pregnancy hard as it helps to know you're not the only one and that this isn't something completely abnormal.

Interesting to hear about your birth. One obstetrician I've seen has recommended a Caesarean which I'm considering. If I go natural I'll keep the catheter advice in mind. I'm pretty nervous about giving birth as I've been having symptoms since 2010 and I can't deal with making the situation worse. My infection level has been very low or non-existent for some years since I started seeing Prof, but symptoms still range from none to terrible. What you gonna do eh. 

All the best. K 
L8tti_x

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Reply with quote  #11 
Hi Kimberly

That is interesting as my obstetric team said an outright no to a c-section.

It might be worth checking if they will use an in dwelling catheter for the surgery... I was informed that the bladder has to be fully deflated during a caesarean in order to keep it out the way so a catheter is essential. I was pretty scared of anything going near my urethra after an horrific cystoscopy experience, so I opted to try for a natural birth. Of course everyone is different but if you're anything like me I felt it was important to have all the facts before making an informed choice.

Is this your first baby? I can honestly say I wasn't aware of any bladder pain during any part of the labour.

How long have you been seeing Prof? I have been in treatment for 16 months and although my white cell count is low it shows no signs of disappearing. Since having my little one my symptoms have all but disappeared some of the time, then I have the odd bad day where I'm burning and constantly needing the loo! I get disheartened at times and feel like I will be on antibiotics forever but like you say.... what's a girl to do!!?




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Kimberly

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Posts: 70
Reply with quote  #12 
Thanks good to know. In all honesty I chatted about the C section briefly with an OB a couple of years ago so we didn't discuss the details. I'll get in to it more soon so I'll work out what sounds best bladder-wise. It's good to hear about your experience and lack of impact on your bladder. I'm concerned it could make symptoms worse after the delivery so it sounds like there is some hope.  

It is my first baby. It's taken a long time to get here not least because of the complications caused by this illness. I've been seeing Prof since 2011/2 and yes I have serious concerns about what seems to be a total reliance on antibiotics, but I guess I choose quality of life and hope for the best in the long run! I had seen many consultants and tried many treatments that didn't help at all. The Prof's 'regime' is the only thing that has helped. I'm out of the country quite a lot so haven't been able to attend regular appts which isn't ideal. Just trying to muddle through the best I can. 


Kimberly

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Posts: 70
Reply with quote  #13 
Quick question, if you don't mind, about how things were when you were pregnant - I'm finding that symptoms are coming and going. About a week of bad symptoms then a couple of days improvement then worse again. How were yours? Thx 
Kimberly

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Posts: 70
Reply with quote  #14 
And one last question! Did the Prof's team give you info on what causes the increased symptoms? It always helps me to understand even if it that doesn't help the symptoms! 
L8tti_x

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Reply with quote  #15 
Ask away! I am very happy to answer questions.

During the first trimester I noticed a significant worsening of my symptoms. The burning increased dramatically which prompted me to book an 'emergency' appointment with the Prof. My white cell count usually hovered around 10 but at that appointment it was 52 which was very high for me. I had a few tweaks of medication and by my second trimester my cell count was back down but I remained uncomfortable. I would describe it as 'up and down' as I did have some manageable days but the constant need to pee was far worse than before pregnancy. I was also getting up in the night to pee more and more often and my pelvic floor felt very tender. Having said that I could never work out if this was bladder related or just another symptom of pregnancy. I remained this way for the rest of the pregnancy but ever since I gave birth my symptoms have reduced and I almost feel 'normal' presently.

The birth has in no way caused the infection to worsen or caused me any further bladder difficulties/complications. I feel much better now that I am not pregnant.

Prof never gave me a reason... he just said that most of his preggo patients report a worsening of symptoms. I guess I just presumed it was the pressure building on the bladder? He did monitor me very closely though so I travelled to London every four weeks to get my urine checked.

Please let me know if you have any other questions.

I promise your baby will be worth all the bladder woes xx

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Lotti
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