Question for the females in the group

Hello Jo

You really are in the thick of it now and must be so relieved that you only have 12 treatments to go.  This will pass quickly and then you can really rest and recover.

Unfortunately, everything between the tattoos is in the line of fire, and all the skin can be affected too.  Any creams that you get to treat sores for around the anus can generally be used around the vagina too and for some time afterwards.  After everything has healed the skin tends to continue to be fragile and sensitive, although some people are affected less than others.  Using lots of creams (and lubricants) is also recommended afterwards.  As the vagina can be affected by the radiotherapy, the nurse gave me dilators graded in size to use.  Others have used a more expensive silicone version available online.

The tiredness is absolutely normal - you are undergoing a very toxic treatment and your body is in overdrive trying to heal itself.  At the stage you are at I often used to get home and just fall into bed, the fatigue can be intense.  But it doesn't last forever, just keep marking off those days.

The longterm effect for me was that the skin in my perineum split when my husband and I tried to have intercourse.  But again, this degree of sensitivity and fragility doesn't affect everyone, I think I was just unlucky.

Keep the potions and lotions on the go - talk to your treating team if you think you need something extra or stronger pain relief.

Big hug

Irene

Thanks Irene,

Yes, I feel a bit silly not really appreciating that the whole area would take such a beating. The machine goes over the whole body so what did I expect. I thought the treatment would be on your front with just your anus being targeted....wrong!!!!

I will have to lose the underwear I think and keep a close eye on breaking skin. It's uncomfortable and I'm not looking forward to it getting worse, along with the pain round the back end.

It's hard to keep your spirits up as life is totally on hold.

I hope I won't have too many long term side effects and am not looking forward to the dilators and ultra sensitive skin down there.

Just counting down the days as they are really dragging!

Jo x

I’m 6 days post treatment and the treatment did affect my labia, vulva and vagina. BUT this area is healing already although other areas are still very sore. I’m already noticing that passing urine is less stingy from today. 

A sitz bath is a god send - I find salt baths are really soothing and you can use it to wee in - the water helps the stinging. 

Thank you, that's great to know and I'm glad youre healing up quickly. Did you use salt baths during treatment?

Hello Jo,

Hopefully now as you are getting to the end of your third week, the end is in sight even if it still feels a long way off. It really sounds that you weren’t given a lot of information on what to expect from this harsh treatment. I was at least warned beforehand that the whole area would be affected and told that my vaginal area would feel severely sunburned and painful. 

So, yes, it’s definitely a normal thing although it certainly feels anything but normal. Lots of moisturising and very loose cotton clothing can help. Some forum members used post birth pads that you can put in the fridge but unfortunately I can’t remember what they were called.

After treatment I was told to use oestrogen cream or pessaries. 

The tiredness is normal too and I found the afternoon naps a necessity. Just rest up as much as you can as your body is really going through it at the moment.

Really wishing you well for the remaining treatments and keep crossing off the days. 
xx

Hi yes I did, I found them to be very soothing. Just plain table salt - a handful in warm water in the sitz bath. I thought it would sting but it doesn’t at all. 

Keep powering through.

one thing I have noticed is the skin in my groin / knicker line is how peeling off so boxers are also a useful investment. 

Hi Jo,

I really feel for you with this as that area for me became seriously swollen and painful. It's absolutely horrible to go through... I want to reassure you tho, that things have settled back down really well. Things feel 'different' down there, but not painful anymore. I think the enforced menopause is what's causing my issues now, but I have a GP appointment next week to discuss trying Estrogen gel. 

Regards the dreaded dilators, I felt very uneasy about trying them, it kinda feels like adding insult to injury? But it's not actually so bad... I had a gyne appointment a few weeks ago and they were unable to perform a smear at the time due to some internal soreness and tightness, but I now feel like it will be ok at the next appointment. I'm not sure if you have a partner, but sex is an alternative option. I am now in a rather unexpected new relationship and am pleasantly surprised to find things are actually ok down there! I wasn't sure it would be, considering just how badly the radiotherapy affected that whole area... it's truly amazing how the body has such capacity for healing. 

I know all if this probably feels like some distant future for you right now, while you're stuck in the midst of it, but things will get better. It's gruelling to go through, but you have the strength within you to make it through and one day in the not to distant future, you will be here reassuring someone else. 

Sending hugs,

Jenna xx

Your reply has given me, and I bet many women, hope that things may be ok down there! 

Congratulations on the new relationship! 

re smears I was told that smears are pretty unreliable post radiotherapy so my future ones would be colposcopy rather than smears at GP surgery. 

Thank you Jenna

Yes, things down there are very sensitive and now three weeks in the back end is getting sore to join the party! It's great to hear how quickly things settle and, although having sex is the furthest thing from my mind ATM, hopefully it can feature on the agenda at some point in the future. Great news about your new relationship, how wonderful for you 

I was also booked in to have a colposcopy not long after my treatment has ended so I do hope that healing will be relatively quick, if not I'll have to delay it.

Keep on getting better and I love that you are so wonderfully positive, it really makes me feel much more confident so thank you xx

They are called hot/cold perineal pads from Amazon. Brilliantly handy things. I now use them for headaches