Vaginal necrosis

Hi Dorset Girl 

Gosh, that sounds a horrible late effect from radiotherapy-I’m sorry to read this. How are you coping with the discharge and soreness?

I didn’t have it myself, and I’ve done a search in the community for any mention of it and drawn a blank I’m afraid. However, you never know who is reading the forums but not posted who may see this and respond.

It does sound like it’s a difficult condition to manage with the high risk of infection, but I wonder if you might get some information if you ask your question to one of the nurses here-

Ask A Nurse

With it being rare, you may not get replies from anyone who has had treatment or surgery. Did your oncologist recommend which course of action may potentially have the better outcome-ie surgery or close monitoring? 

Sarah xx

Hello I'm having this same problem after having brachytherapy to vagina. It started 7 months ago and I had an operation to remove necrosis. But still getting infections and terrible discharge. I'm constantly on antibiotics. Has your problem improved?. Don't know anyone else who's had this. Appreciate any information 

Hi Allie54, I'm sorry you have this too, and your symptoms sound horrible. 

I changed my oncologist as I wasn't happy with the original advice I received, I felt it wasn't taken seriously considering the effects necrosis has on you physically and emotionally. My new oncologist has a special interest in late effects and is very supportive. His management plan is:

Stop using dilatory and internal examination to reduce the risk of tissue trauma 

Twice yearly MRI scans to monitor both recurrence of cancer and to detect fissures and other organ involvement 

Twice weekly vaginal estrogen 

Only consider surgery as a last resort 

I also self referred to the Late Effects service at Bristol Hospital. Zoe, who is the lead radiotherapist, was incredibly helpful. 

She prescribed Flaminal Hydro which is type of internal dressing which sloughs off the necrotic tissue and YES vaginal moisturiser, both of which I now have on prescription from my GP.

She also told me HBOT, hyperbaric oxygen therapy. This is available in Plymouth and Warminster. It may be available elsewhere. 

My symptoms have improved since using the Flaminal, YES and the estrogen. 

I do hope this helps you, it's such an unpleasant late effect which very few professionals seem to know anything about. 

Please let me know how you get on. I'll be thinking of you.

• Hi Dorset girl thank you so much for replying to me. It's such a horrible illness to have. I started with bladder cancer 5 years ago and after radiotherapy and chemotherapy it came back. So I had to have bladder removed and hysterectomy plus other things. Then a year later it had moved to vagina. I had 6 rounds of brachytherapy and was ok for some time until I got the necrosis. My consultant did remove as much as he could. However I keep getting infections and its very sore with discharge. I will mention about the vaginal estrogen cream and Flaminal to my cancer nurse. At the moment I'm taking antibiotics quite often but it still is bad and has horrible smell. I've just had a pet scan and mri. Hope you keep well. Hopefully I will get better also. Many thanks 

Hello ladies

i am thinking I have this and feel so miserable and debilitated. They thought I had a recurrence and did an EUA with biopsy which was negative for recurrence.

i recovered well after initial chemo radiation and brachytherapy and by 3 months post treatment felt great with minimal pain and no discharge. However things then started to go backwards and now I have pain alll the time, am unable to insert dilators as obstruction and painful and have greenish discharge.

they have given me topical clindamycin after oral antibiotics and told me to use estrogen cream with applicator after this.  Nobody has called it vaginal necrosis and it’s hard to find any information - I have also been referred to the late effects clinic. I came across your posts and wonder if what I have could be vaginal necrosis as the pain, discharge, incontinence and seemingly increase in scar tissue to block my vagina is so debilitating.  I have been given oramorph but reluctant to take as it makes me so constipated and the laxatives are awful.

Hello Brightside I'm sorry to hear your in this situation. I can't say if its necrosis but if you have a green discharge then you may have infection. I have pain discharge and it can smell horrible. I've had so many infections and constantly on antibiotics. I'm now using metronidazole gel and flaminal hydro. Its painful sitting as I have to use a donut cushion. My consultant has said it will get better in time it takes many months to heal. So I'm hopeful. Just have to keep it clean so doesn't get infection. I sit in a bath with salt. Sorry I can't help anymore. I hope things improve. I think mine is a late side effect from brachytherapy. 

Hi

Sorry you're having problems. It sounds like we had a similar treatment, eg. radiotherapy and brachytherapy. 

I wouldn't be able to say if you have necrosis but I'll try to describe my symptoms which led to diagnosis. 

The 1st thing I noticed was a persistent itch and a bit of soreness. As my tumour was near the vaginal opening, I was able to self examine and saw a lot of inflammation and a lot of thick white patches. 

I also had a greenish discharge but no smell to it. This was investigated and was clear of infection. It has now stopped. 

I no longer use dilators as I have severe stenosis making them impossible to use without causing further tissue trauma. 

It is hard to find out much about vaginal necrosis but I found Chatgpt useful and the late effects service were great. 

I do hope that you soon start to feel more comfortable xx

Dear Allie54 and Dorset Girl -

I am so grateful to have found you both and know that you can understand this horrible side effect. 

It's such a sensitive place to have radiotherapy and bracytherapy and the side effects were horrendous but then I recovered  fairly well  - its such an awful thing to then get increased pain and discharge and have to stop using the dilators . I am also now inct of urine quite a lot. The specialist nurse has now referred me to the late effects clinic in Preston and prescribed estrogen. I feel from your descriptions being so close to my own experiences that it is highly likely to be vaginal necrosis.

I don't have a donut but I do have a pressure cushion which helps when driving and at work. I will try the salt baths too. 

If I find anything else that helps I will let you know. I hope you both continue to recover and it sounds like you have both found good professionals who want to help.

Good luck and thanks for making me feel less alone with this. 

Lovely to hear from you. I hope you get better soon. I've unfortunately got another infection. I've also been referred to late effects team. They are suggesting estrogen cream which i will try. Yes this is such a horrible side effect. Don't know how long it takes to get better. Keep strong lovely to have you ladies to talk too. Take care 

Hi Brightside and Allie

It is good to feel like I'm not the only one in the world going through this, not that I'd wish it on anyone! 

It does feel like a rotten deal to survive all of the brutal treatment, get the all clear and then to be hit with necrosis!!!

I have definitely found that the estrogen and Flaminal Hydro have helped. I no longer self examine as it I find it quite triggering and stressful. I focus on eating healthily and exercising when I have the energy. I'm also super careful to avoid infection, with separate towels etc and I keep a mega dose of canestan in the cupboard in case I get thrush. 

Good luck to both of you dear ladies. Let's keep sharing any useful tips, we're probably more knowledgeable than many medics when it comes to necrosis! 

X