Hello Terri, Thanks so much for sharing your story. You've certainly been through the the mill! I'm sure it was a very difficult journey with no one to talk to who truly understood what you were going through, but I'm SO glad you've come so far and are now able to share with us here. For myself, such was the placement of my cancer that I would've had no option for a recection, only a colostomy, & by the sound of things for you I'm glad that wasn't possible! I'm sure you're correct that things have come a long way since your treatment. I too ended up with severe 'saddle' burns because of my treatment zone of pubic bone right around & including the tail bone. It's pretty horrific treatment, & one of my nurses tole me it is the worst radiotherapy there is for a woman, so no wonder you ended up in hospital. I don't know what age you were when you had your treatment, but it's also harder on older women as their skin is more delicate & doesn't cope very well. Yes, 'toilet timing' is always a key factor nowadays, & I don't plan anything anymore in the mornings until the 'garbage has been emptied', but I'm sure it's a far bigger issue for you to try to manage. Isn't it amazing how different we are?... I need to be almost religious about what I eat & when I eat it so as not to get blocked up! I still have the urgency of needing to go immediately though when it does happen. It fascinates me how much I never thought of & took for granted in the past, like even just sitting down without having to think about how I approach that. And there's always new things that pop up, like straddling a puddle! My skin reminded me very quickly that I should've walked around it instead!!! That's wonderful you could help that lady through her treatment & give her someone to relate to Terri. Hopefully that helped you process some of your own journey too. It's very interesting you ended up with VIN & requiring a vulvectomy. My mum had Lichen Sclerosis about 8yrs ago which she ignored for too long (due to assuming it was just her psoriasis playing up), & it turned cancerous requiring her to also have a vulvectomy with radical reconstruction. My gyno said she will monitor me for the rest of my days to ensure I don't go down that same path, as Lichen Sclerosis can easily develop from trauma to that area like we've experienced from the radiotherapy burns. It's something that can be easily controlled with a steroid cream if it's detected early enough thankfully. This is not at all upsetting to me Terri - thank you for having the courage to share with us. I have a few questions, but feel don't feel obliged to answer them... How did you go 'internally' after the radiotherapy? I'm now almost 7months post treatment & my vaginal opening is still incredibly sensitive. I'm also still using 'dilators'. Do you recall what the time frame was before you felt 'normal' again down there? And did your treatment bring on menopause for you? If so, how did you find it affected you most? Thanks again Terri. It's so great to have others to talk to, & I know you understand that. Heids xo
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