Dealing with endo after children in late thirties

[EKP31]

hi there

I’m 37 and had two children via IVF when I was 33 and 35. I have stage 4 recto vaginal endometriosis and had a bowel resection and temporary stoma when I was 31 before starting IVF.

Now I’m finished having children, I’ve gone back on the pill and run it back to back to prevent periods. I’m still getting breakthrough bleeds and my last bleed has been really uncomfortable and painful particularly around my rectum so feel my endo is back in full force.

I’m worried about the future and how to manage my endo pre- menopause and wondered what treatment plans others use? I feel like that I'm too young to have a hysterectomy but don’t want to live in pain.

Any advice gratefully received.

Many thanks

Emma

[Sonia1976]

Hi Emma

I’ll be honest with you. I had a hysterectomy when I was 38 years old, 8 years ago. I at that time had stage 4 and was in and out of hospital with my endo and decided to have the hysterectomy. 3 months later I was in agony again and two years later had an oophorectomy and 2 months later was back in pain again.

I have had the resection and it’s back wrapped around my bowel, bladder, adhesions, cervix (they left that in for some reason) and everywhere else in that region.

I am not saying this will happen to you at all because everyone is different, however to not have the bleeding has been a god send. The bleeding stopped me from doing a lot of things and although my endo is now stage 5 - deep infiltrated endometriosis I am grateful for the bleeding to have stopped.

If you choose to have a hysterectomy they will probably only do a partial one due to your age leaving your ovaries intact, if they are healthy. If they are not, I would rather of had a full hysterectomy to save me from having the oophorectomy 3 years later and creating even more adhesions. Please keep in mind if you have a full hysterectomy, you will go into menopause

This might not help you but this was my experience and by taking HRT (both hormones given to me ‘by accident’) my endo grew back with a vengeance.

Good luck with your decision.

Sonia xx

[EKP31 in reply to Sonia1976]

Hi Sonia. Thank you so much for your reply! I’m sorry it’s taken me so long to acknowledge it. I’m really sorry to hear your story - it sounds like you’ve had an awful time with it. How are you finding your endo now? Are you still in pain?

I met with my consultant last week and we’ve agreed for me to have an ablation which will stop my bleeding and at the same time for the mirena coil to be fitted so I’m hoping this helps me in the short term.

Take care and really appreciate your advice.

X

[Cailleach]

Hi,

I am assuming you were treated at a specialist endometriosis centre before, due to the severity of the disease, it would be worth asking to be referred back to them for advice on future management. It will probably mean a long wait however.

The pill has probably stopped being effective for you, given you are getting breakthrough bleeds. Your GP can prescribe you meds to reduce the bleeding and help with the pain though, in the meantime,but I would think a discussion with a specialist about your future is best. Xx