Deep infiltrating Endo 2 choices given.

[kerry2017]

Ìve been given 2 choices after being diagnosed. 1 is removal of endo and take medication. 2 is removal of endo and a hysterectomy. Has anybody had these procedures? and if you have how are you getting on? Thank you 🤗

[Starry]

Hi, I had removal with no medication for my deep RV Endo nodule, as medication was ineffective with me. I didn't have lots of extreme abdo pain like some, it was more bladder, bowel symptoms, fatigue, backache and Dyspareunia though I did have dysmenorrhoea. I suspect hysterectomy in addition is most beneficial where ladies have undiagnosed Adenomyosis.

A big decision to make with a hysterectomy would be whether to retain ovaries with a hysterectomy. I was offered an oopherectomy and declined it as I read there are significant health risks to removing them. But the risks and benefits vary by age and individual case and you might feel differently.

[kerry2017 in reply to Starry]

Thank you for yr reply. With you not having medication has it come back? I'm finding really hard to make a decision. My and my partner were trying for a baby for over a year an now I'm facing this. I have fibroids and polycystic ovaries too. I'm finding hard to walk and I'm in pain all the time. None of the medication they are giving me are touching my pains. Are you symptom free now? I've read so many stories that no matter what you do it can still come back. Even HRT can wake endo up 🤔xxx

[Starry in reply to kerry2017]

There are studies on recurrence and statistics with various definitions and time periods. The figures are surprisingly good, but are higher if you class pain as recurrence, which can often be adhesions / nerve pain resulting from surgical intervention rather than strictly a clinical return of the actual disease. Some Endo types are more likely to return than others.

ncbi.nlm.nih.gov/pmc/articl...

I am 5 months post. I have digestive complications (reflux oesophagitis and gastritis possibly due to the viral meningitis I developed 4 days after my op or chronic stress) and now suffer nerve pain but nothing to indicate an actual disease recurrence atm. I'm having a MRI on Friday.

[kerry2017 in reply to Starry]

I am in so much pain really hope they get rid of it all and it doesn't come back. Thank u for the link and reply I will have a read of that.

Aww that doesn't sound good at all and just after your op. Well really hope you get some answers from your MRI and hope you start feeling better soon 🤗xxx

[Starry in reply to kerry2017]

No it's been a tough ride and I'm struggling to return to work due to it all. It's been a long difficult process.

Good luck in your decision. Xxx

[kerry2017 in reply to Starry]

Aww that's awful. Really hope yr feeling better soon and you are able to return to work x Thank you for the good luck xxx