SLIPPING THROUGH THE CRACKS PLZ HELP

[merina21]

Hi all,

First my interstitial cystitis was diagnosed year ago. I was suffering with unbearable pain due to UTI+Bloating. Sometimes i found blood in my urine too.

Last week i had my laparoscopy to remove ovary cyst identified due to fertility difficulties. However this is the time when they found out that i have advanced Endometriosis, laterally spread everywhere.

I am struggling with my emotions lately when it comes to fertility.Any info/experience would be appriciated.

[LCI1]

This sounds exactly like me. IC diagnosed in 2011, having difficulty conceiving been trying for 18months +.

Had an ultrasound and a cyst was identified, HSG failed as they couldn’t cannulate the cervix.

Had an ultrasound last week 15/1 for Hystecopy, lap and dye, cystectomy and minor endometriosis removal if found.

Hysterectomy showed womb is fine, severe endometriosis was found so everything else became purely a diagnostic lap.

Post surgery consultant briefly told me the above and said IVF is likely our best option for conceiving if pain isn’t a priority.

I knew my period pain was bad but hadn’t really considered there was a cause for it. Reading up about Endo my bladder and bowel pain on emptying along with other things definitely makes it seem like Endo I just didn’t know.

Confused about what next - do I go straight for private IVF ( not entitled on nhs as partner had previous children)?do I need to get the Endo explored further? Could further surgery for this increase chances of a natural conception? Do we try some IVF while I wait for the Endo to be explored? Do I need to be referred to a BSGE specialist Endo centre?

Seeing consultant on Monday for post lap appointment.

Feeling really confused and overwhelmed and partner isn’t the easiest to talk to about this - he just says it will be fine we have options just see what they say!

Was hoping to ask work about going back early (tomorrow) rather than Thursday next week but have woken up today feeling emotional, overwhelmed and confused so not sure if that is the right thing to do!

[StefaniaJW]

There is not much I can advise other than undergoing complete excision with a highly skilled and trained excision surgeon. There are several in the UK, working within the NHS or privately. I have seen many women with stage 4 or deep-infiltrating endometriosis conceive naturally after FULL excision, but it's pivotal to have a TRULY capable surgeon perform it.

The hardest part is correctly researching and finding one who can help you.

I wish I could name those I have heard of but unfortunately I cannot due to the privacy policy on this forum.

Anyway you need to research an EXCISION surgeon with significant experience and low recurrence rates. You can use the BSGE archive to start looking for one near you, but make sure you do your research too.