stage 4

[Starry1977]

hi everyone. I got diagnosed with stage 4 endo in may after I had a laparoscopy to remove a 4cm endometrioma. I didn’t know I had it. I had been having heavy periods for a few days a month but put it down to my age 45. I did occasionally have pain going number 2 and other random pains but didn’t think much into it. 🤦‍♀️ My lap showed my ovaries stuck, endo on bladder wall, appendix and problems near bowel. Plus frozen pelvis. He removed what he could but I then had an mri in July. A lot of issues I had b4 surgery have got better. My groin, leg and hip aching is 95% better. The mri shows 10 mm scarring and endo nodule of 18 mm in pouch of Douglas. It mentions possible adenomoysis due to 14mm thickening of a zone and also a thickening of endometrium 18mm. Plus significant scarring in mesorectal fascia. I’m due to see consultant next week to discuss these results. I went on mini pill after surgery but I constantly bled and my mood was awful,,,really angry so I stopped it a few mths later. Does all this sound that I’d need a hysterectomy? I’m not actually in any mega pain even though it sounds like my insides are a right mess, but im worried im gonna end up with a bowel problems if I leave things. Has anyone else got similar diagnosis but wasn’t in much pain? Did yiu leave things or take it all out. It’s awful not knowing what to do!

[annieorrell]

I had a similar diagnosis and had a total hysterectomy and oophorectomy almost a year ago now. I’m 48 so the menopause was going to happen soon but I didn’t really a choice in the end as everything was really stuck together. The surgical menopause has been challenging and I still get some pain weeing in particular but still the best thing I have ever done!

[Starry1977 in reply to annieorrell]

Were you in lots of pain before? Or did you get it done to prevent further damage?

[annieorrell in reply to Starry1977]

I was in agony. I could hardly walk- it was awful!

[Starry1977 in reply to annieorrell]

luckily I’m not, I feel like a fraud, but my insides are telling a different story!

[Ess1982]

hi starry, I’m really sorry I have no answers. However we are in a similar situation medical wise as what you listed above is exactly my diagnosis. The only difference being I was so scared of the endo getting worse and infilitraring more of my bowel on my consultant advice I had the Mirena coil fitted. This then introduced an infection which meant I was hospitalised for a week. I’m out now it’s been two weeks of agony different pain killers. Started amitryptaline yesterday. My advice to you is do not do anything to mess with it if you are not in pain. I wish I had left well alone. I also have rheumatoid arthritis so a surgical menopause will be quite difficult and may make my RA worse (it’s like Sophie’s choice). I think I have now made my peace that realistically I will end up having a hysterectomy with a bowel resection. Even then that’s a long wait.

[Starry1977 in reply to Ess1982]

I declined the coil as I don’t like things I’ve no control over that’s why I opted for the mini pill, but it made me awful. I’m also thinking not to mess with anything but am concerned about future damage. Luckily my symptoms are random aching, griping , stabbing , but nothing horrendous. I guess I’ll see what my consultant says next week regarding the results and what he’s advise. My mum as a colostomy bag, and it worries me ending up like that as I’ve seen it’s affected her.