Interstitial cystitis / pelvic pain syndrome and pregnancy

[maloney123]

Hi All

Just wondering if there are any fellow IC sufferers who are pregnant or have gone through pregnancy with this condition?

I have IC although I largely have it under control now. However I’ve had loads of issues with my pelvic floor (incontinence for many years followed by pain caused by overly tight / weak pelvic floor) so I have to do stretches and exercises regularly.

I’m really worried about going through labour with these issues and would prefer a c section rather than subject my pelvic floor to more stress. I mentioned this at my booking in appointment and the midwife had never heard of the condition and just said they could refer me for pelvic floor physio therapy. I thought it was a bit mad that a midwife hadn’t heard of a gyneaological condition - she said “I’ll put it down as “other””!

Would love to hear from others with IC as to how you cooked through pregnancy x

Hi!
I have this too, though by the sounds of it, not as bad as you. I can't have my monthly instillation anymore though which isn't great - I really enjoy getting up every hour for a wee in the night...not!
My IC condition is as one of the reasons why I was referred for consultant care. However, whilst lovely, my consultant didn't really have a clue either. Just asked whether I had a contact in my urology department I count contact if I needed to (which I do). However, she didn't mention anything about if affecting birth (and whether a c section should be undertaken)...but I think it's because she doesn't know much about the condition! However, this has now prompted me to contact my urology nurse. Once I have done, I'll post back to see what they advise!

Thanks @TH22 ! Please do keep me posted it wasn’t my permanent midwife I spoke to yesterday so I will bring it up with her again when I have my next appointment.

Hi, I don’t have IC but I do think I might have a gynaecological condition called vulvodynia (started end of last year and with everything else going on and the fact that it’s not easily diagnosed- I haven’t been officially diagnosed).
I have mentioned it to a midwife who’d heard of it but kind of brushed it off, and a consultant who didn’t have much idea about it. They both kind of focused on the pain of labour whereas I am more concerned about additional issues long-term after a vaginal birth if I already suffer from vulval pain.

I’m now 36 weeks and considering an elective c section for other issues anyway. But you’re right, it is strange that they don’t know much about these conditions.

As you’re early on I’d say keep pressing to speak to someone about it and plant the seeds that you are concerned about a vaginal birth x

@BG1234 I’m sorry to hear that, I’ve read about vulvodynia. I hope you’re able to get them to agree to a c section. I just can’t see that the trauma of labour would do an already stressed pelvic area any good?!

I dont know if I have IC, but after having UTI symptoms for a few years that were getting worse and worse and driving me INSANE I finally got referred and during a recent cystoscopy they discovered I have a very tight urethra that apparently needs stretching out (anyone else cringing and crossing their legs at this!?).

In the meantime, I've been prescribed amitripyline at a low dose to help with the symptoms and honestly it's been a godsend. I seem to remember it can also be useful for IC so might be worth considering? I know your issue is more about after effects, but sometimes any help is good :)

Hey @curiouscat1987 that’s really interesting thank you. Can you take amitriptyline in pregnancy do you know?

I have IC and I'm 3+5 at the moment, I'm really worried about how my bladder is going to be the next 9 months I turned down the hyacsyt treatment a couple weeks ago as I felt I was managing my symptoms, but I guess that won't be the case anymore haha

@maloney123

Hey *@curiouscat1987* that’s really interesting thank you. Can you take amitriptyline in pregnancy do you know?

I think it depends on the dosage and the reason but my gp has said its fine. Im on 20mg daily so a low dose :) good luck!

I haven't got IC but my SIL has. She couldn't even try for a baby as she could not come off the meds (codeine etc) and is strapped to a TENs machine a lot. It is a shit thing to have so you have my sympathies.

With everything you have been through I think you should explore the C section over a vaginal delivery due to the issues with your pelvic floor. Are you still under the care of a doctor/gynae for your IC who can advise you?

I have endometriosis and I found both pregnancy and labour very painful as the scar tissue inside didn't stretch. Ouch. I ended up with EMCS first time round, second time I opted for ELCS.

@curiouscat1987

I dont know if I have IC, but after having UTI symptoms for a few years that were getting worse and worse and driving me INSANE I finally got referred and during a recent cystoscopy they discovered I have a very tight urethra that apparently needs stretching out (anyone else cringing and crossing their legs at this!?).

In the meantime, I've been prescribed amitripyline at a low dose to help with the symptoms and honestly it's been a godsend. I seem to remember it can also be useful for IC so might be worth considering? I know your issue is more about after effects, but sometimes any help is good :)

I've had 3 bladder and urethra stretches.It's not that bad. For the first day it's like you're peeing poker red hot razor blades, then it eases up!

Hi @TH22 did your urologist ever get back to you? @BG1234 how did your labour and delivery, and recovery go? Xxx

Also intrested to know!! I think I have IC and not sure what best birth options are