My Turn

• Hi, mg04221. Firstly during Radiotherapy Flamojel, post radiotherapy Flamazine for the burns also for painful external vaginal and anal burns...a c50/50 combination of Drapoline and catheter anaesthetic ( only given by your nurses). Polymer is a great help for the creases of the groin and (sorry to be graphic) between the libia (girly bits). Having a wee post treatment is without doubt one of the most excruciating experiences I've ever had and the recommendations of this group have saved my sanity.. a seltzer bath! It's basically a training potty that you fill with cool water and place it on the toilet, sit in it, cool water l and have a wee. Finishing the treatment is brilliant but yes you do have a "way to go". Have you been given oromorphin and had explained about pain and side effect management? Take every day as it comes and always ask here for advice and your medical team if you're worried about anything. You will get through this and I can say that in all honesty as I have recently been exactly where you are now. I wish you all the very best my dear xxx Marie 

Hi ,

As Marie has said I was prescribed flaminal cream during treatment & Flamazine cream once treatment had finished both of which I used liberally. I had radiation cystitis on & off from week 2 of treatment, one of my radiotherapy team advised to wash only with aqueous cream ‘down below’ as anything else even the feminine care washes kill off all the good bacteria & it’s really important to try & preserve this, it also has the added bonus of moisturising any sore skin as you wash. Unlike bacterial cystitis, as you’ll already know, radiation cystitis can’t be treated with antibiotics etc., so along with the aqueous wash I was advised to drink lots of water & take regular pain relief, as I’ve mentioned before my pain relief consisted of paracetamol alternated 2 hourly with ibuprofen. I did as you’re already doing & either used a jug of water when having a  pee or went in the portable bidet, this also helps sometimes with painful bowel movements too but I found the best solution for that alongside the regular pain relief was to keep everything really soft with laxido during the time when it was painful. Everyone’s recovery from treatment is different, my symptoms peaked around day 11 post treatment then things began healing really quickly & I went back to work part-time around 3-4 weeks later. Just gauge things on your own scale & nobody else’s, as I say we’re all different just get as much rest as possible in the coming couple of weeks & hopefully you’ll be feeling much better very soon. 

Nicola

Thank you, Marie and Nicola for the information. I don’t know what I’d do without being able to come here for advice and encouragement. I have been given pain medication but I only took it once because it makes me sick to my stomach. It’s also addictive. So I’m afraid to take it. But I might try it again with some anti nausea medicine. I haven’t been able to be very far from the bathroom for several days now. I never know when I’m going to have to go! I hope this too is only temporary. 

Meg

Hi Meg, its a real trial getting through this phase. I echo the others with advice. I managed with 2 paracetamol at 6am 12noon 6pm and midnight, I would have taken the ibuprofen at 8, 2, 8pm and 2 am but they gave me a bad stomach. You can take both if you overlap them. If I even sniffed the addictive codeine I would get constipation which is terrible in our condition, you dont want constipation.

What worked for me was the pink foam POLYMEM which was prescribed, pretty messy but effective and soothing, you can walk about with it with the special pants they give you. They gave me some morphine gel in big fat syringes, I used this for 3 days when it was really bad, it stung but took the pain away a bit from BM's. Also had a warm salty sitz bath on the loo. 

The 12 days after were worse, I hibernated, then I improved.

Now at 3 months, I still have a little pain weeing, my vagina is short and narrow and my bum is a lot better with no bleeding, it's narrow and I do little and often poos like snakes. I have put on a stone and everyone says I look great !

Keep crossing those days off girl, you will get there !

Sarah.

ps, get the Water Wipes from Sainsburys, they are an Irish brand and cooling and soothing, I would clean my sore skin with these and apply calendula infused oil all over my undercarriage which stopped rubbing together of swollen bits, I did this more in the later phases, I didnt put anything else on with the polymem as it had stuff for healing in it. I used about 3 packs of the water wipes over the time, but my last packet is still lying there as your skin does grow back in the end