Endo , Interstitial cystitis & TTC -anyone in the same boat?

hi all

i am new to this forum...

i have been diagnosed with endo 2010 had 2 laps... now i have interstitial cystitis which is horrible pain.. like having a UTI 24/7.... been trying to fall pregnant for over 3 yeras....2 x IUI hasnt worked... our sex life has dropped off cause of the interstitial cystitis pain that is unbearable... so trying IVF next.

have started having acuptunture this week... so hoping that will help with the pain and getting pregnant. ...

currently on panadol forte every day... so not sure if i can continue to be on them when trying or even when pregnant...

is there anyone on here in the same boat? what sort of pain management do you take? any help will be great?

Hi Simone

I feel your pain, I don't have endo - I have PCOS but am also an IC sufferer, and have been for about 15 years. After years of referrals to Urologists (a lot don't believe it exists) I was finally referred by a good GP to Helen O'Connell (in Melbourne) who specialises in IC.

I ended up having bladder surgery whereby she basically cleaned out my bladder and used an antiseptic wash to clear everything out and to help my bladder lining heal. I still had to go through IVF to have my babies, but since having that done 7yrs ago the amount of UTI's and discomfort I have has decreased dramatically and any UTI's I now get can be managed with antibiotics.

Where are you based??? I would recommend trying to see a specialist who knows and acknowledges IC to get help :)

Hi

thanks so much for replying.. i am in perth .. but my hubbys family lives in melbourne so i can always come over to see the dr. where is the dr located that you recommended? is it a specialist or a gp?

while going through ivf was the pain worse.. or just the same?

i have been told by my speciaist to get pregnant to help with the endo.. but then i still havea 20c peice size of it on the outside of my bladder which doesnt help.....

She is a specialist located at the Royal Melbourne Hospital - google her "Dr Helen O'Connell".

I had the surgery 2 years before starting IVF, I don't think I could have managed IVF and pregnancy with my IC as it was pre surgery. So I wanted to get my bladder fixed first and then tackle the TTC process.

I have read that many IC sufferers have successful pregnancies, but in my case my IC was so unmanageable as I was having UTI's 3 out of every 4 weeks which no antibiotics could help and the pain and discomfort was too much to bear.

When you do IVF a lot of interferance is done around that region and I would still end up getting UTI's after my embryo transfers - then having to take antibiotics to clear it up - but as you know being an ICer does make you more prone to getting UTI's but anti's would clear it up and touch wood I haven't had any major IC attacks since the surgery..

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She is a specialist located at the Royal Melbourne Hospital - google her "Dr Helen O'Connell".

I had the surgery 2 years before starting IVF, I don't think I could have managed IVF and pregnancy with my IC as it was pre surgery. So I wanted to get my bladder fixed first and then tackle the TTC process.

I have read that many IC sufferers have successful pregnancies, but in my case my IC was so unmanageable as I was having UTI's 3 out of every 4 weeks which no antibiotics could help and the pain and discomfort was too much to bear.

When you do IVF a lot of interferance is done around that region and I would still end up getting UTI's after my embryo transfers - then having to take antibiotics to clear it up - but as you know being an ICer does make you more prone to getting UTI's but anti's would clear it up and touch wood I haven't had any major IC attacks since the surgery..

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hi K

glad you havent had any attacks lately...

i am still in the process of getting diagnosed correctly... my IC feels like a UTI but no dr will give me antibiotics so i just live with the pain.. over a month 3 days i get with no pain.. thats just before and during my period.. the rest of the month i haev cystitis symptoms plus all the pain and throbbing , pain while going to the loo etc.. its horrible.

i am hoping getting pregnant is going to help.

i still am not clear on what sypmtoms are endo on the bladder and what is the IC..

thanks for the dr name.. i will look her up!

did you have a cathater after the surgeory..??? what was the time like after? how long til you felt no pain?