Has anyone developed Lichen Sclerosus after pelvic radiotherapy?

[Hopeful-one]

I was recently diagnosed with Lichen Sclerosus in the genital area. I had chemoradiotherapy 14 years ago for SCC rectum. The cause of LS is not known though trauma to the skin is thought to be one contributory factor. I am extremely worried about this recent development as LS is associated with the development of SCC of the vulva in people who have not SCC before (which I have had, so presumably my risk is higher). Any tips on how others have successfully managed LS would be welcome. I'm using Dermovate steroid cream over three months, daily at the moment and then tapering off gradually- the standard treatment. I am also on the list for a urethral dilation to relieve difficulty urinating, slow stream, peeing in fits and starts, spraying on voiding. All symptoms I've had post radiotherapy, but they've got worse in recent months. Now I'm wondering if the LS is making symptoms worse and I'm not sure whether to go ahead with the dilation or not incase that aggravates the LS further. Anyone had any experience of these issues? I'd be interested to hear. Thank you.

[readingaddict19]

Hi Hopeful -one

I have vulval LS which was diagnosed over 20 years ago , pre- treatment for womb cancer which included extensive radiotherapy and bracytherapy . The radiotherapy / bracytherapy have affected my bladder and bowel -frequency and urgency - with occasional urinary incontinence ( none of which I had before my cancer treatment ). I have not experienced my LS being worse post cancer treatment .

I have an annual check up with a vulval specialist and 6 monthly reviews with the local continence services ( the latter say my urinary problems can't be cured as they were caused by radiotherapy . I have been offered medication to help control the symptoms but this is only a temporary measure ). For vulval LS , I also use Dermovate ointment for flare ups , and cetraben to soothe the area . There are several Lichen Sclerosus support groups and info online which may be helpful .

Perhaps useful to get a second opinion as regards treatment proposed ?

[Hopeful-one in reply to readingaddict19]

Many thanks for your reply readingaddict.Interesting that your LS didn't worsen following radiotherapy, which is great for you. I agree I need a second opinion- infact I have not seen a dermatologist at all yet, never mind a vulval specialist, really crazy. I'm only going on what gynae chap said when he was doing a smear and he diagnosed LS then, but he didn't prescribe the Dermovate at that point, that only happened after I'd subsequently read up about the condition and I asked the late effects team to ask the gynae chap about steroid ointment which he subsequently prescribed- but he's discharged me from him so I'm in limbo and reliant on gp who I can't get an appointment with currently. The late effects team are doing a referral to dermatology but wheels grind exceptionally slowly, so frustrating. All completely unsatisfactory and very worrying.

☹️

[maddie_1234]

Hi there, I'm sorry for what you are going through & I know the worry can be worse than the symptoms sometimes. Using a Steroid Cream often actually thins the skin even further so maybe using something like Sudocream which has been my Saviour for bleeding around the Vulva, Simple, harmless but effective as it creates a barrier between the effected skin & the world around it. I think my bleeding although it's very small & intermittent is coming from wearing a thick pad 24/7 for Bowel Incontinence but the Cream really helps. I have no knowledge of LS but at least you have a diagnosis. Keep on with the Medical Professionals until YOU are satisfied with the full diagnosis & proper treatment. Unfortunately that's what all of us have to do......fight, fight & fight some more. Good luck with everything & I hope your worries are dealt with to your satisfaction. x

[Hopeful-one in reply to maddie_1234]

Hi Maddie. Thanks for your reply. It is very hard to get the correct and prompt treatment for things isn't it. I think often the staff are willing but their training and the way everything is organised in the NHS means that there is not a holistic approach to a range of symptoms, every specialist - IF you can near one- looks at 'their' bit of the body in isolation without making links between what is happening with different bits. I saw a lovely gynae consultant yesterday- though it completely messed up my w/e away- when I suggested how various of my symptoms might potentially be connected she agreed that my theory was perfectly possible, but somehow they don't make those links themselves and treat holistically. Most frustrating. Anyway, I'm making a bit of progress now. I agree that long term use of steroid cream isn't great, but it is the standard treatment for LS and does stop it worsening though sadly can't reverse damage already done. I've been referred to gynae team for follow up so will have to see what happens. She was clear that I need to have the dilatation though, which is helpful to know.Thank you for your thoughts.

[Rebas]

Hello, I developed LS after Chemotherapy and Radiation treatment for a childhood cancer located my primarily in my pelvis. During the cancer therapy I went through treatment-induced menopause. I completed treatment when I was 15 and a couple of years later I developed LS symptoms that took years to officially diagnosis. After that, my flare-ups were infrequent and I would be prescribed a mild steroid to use for a week or so.

My LS has worsened and spread in the past 15-20 years (I’m in my fifties now). I use a mild steroid ointment every day and have regular check-ups with a gynaecologist from the Colposcopy Clinic. I also have Radiation Cystitis and frequent UTIs which can aggravate the LS and cause pain.

I see a Naturopath and more recently (and suggested by my Urologist) a holistically based Pelvic Floor Therapist. Both practitioners have help tremendously as they consider my entire medical history and the late-effects from cancer treatment, as well as the LS. I follow their recommendations (don’t swim in chlorinated water, wear cotton underwear, etc.) and am very careful with what I eat and drink. Doing this has also helped to keep me from getting yeast infections which are painful for those with LS.

My experience is different than yours but I hope something I wrote may be helpful.

[Hopeful-one in reply to Rebas]

Hi Rebas. Thank you so much for your reply, it sounds as if you've had a long and difficult journey, and how tough for you as a child. Sounds as if you're doing brilliantly.Where do I find a pelvic floor therapist I wonder, is that private? I've not heard of them in the nhs?? Is that a specialist physiotherapist? I've been reading some blogs and support group info online, and in Canada they seem to have specialist physical therapists who help with priming fusions apart and such like. Don't think we have any of that in UK do we? I would love to reverse the fusions I now have....

[Rebas]

Good morning Hopeful-one - I am in Canada and pay for the Pelvic Floor Therapist (PFT) myself. A PFT is a physiotherapist specializing in treating the Pelvis.

The specific Therapist I see was recommended by my Urologist and my Physiotherapist. When they each recommended the same PFT, I thought I should try them. It has been worth it. I am not sure if a PFT can treat fusions but may be able to help keep the skin from getting too scarred or stiff and increase blood flow. I'd ask one of your doctors if they know of a PFT to help you or look online for one near you. You want one that knows about LS and cancer treatment, as not all of them do. Take care and hope this helps.

[Hopeful-one in reply to Rebas]

Many thanks Rebas, I suspect we don't have such people in the UK but I will enquire.

[Scubababe]

Hi our NHS in England has women’s physiotherapists who deal with pelvic floor. I asked for a referral from my GP and it was pretty quick. I see her once a month and it’s been a great help. Maybe ask your doc for a referral wi womens physio x

[Hopeful-one in reply to Scubababe]

Hi Scubababe. Thanks for that. I am under a physio in the late effects team but she is more into signposting for things like PTNS for incontinence etc, and sorts out anal plugs and such like. No hands on treatment, which is odd. But I'll ask her about it, and also a sensible GP I have only just discovered as newly arrived at my practice. Fingers crossed🤞

[Silver1-lady]

The only cream that works for me is the one I was given whilst having radiation constantly develop sores/and had many biopsies it’s unreal. I understand completely regarding peeing in fits and starts and then your bursting and nothing comes out

[Hopeful-one in reply to Silver1-lady]

Hi Silver1-LadyThanks for your reply. Yep, very frustrating re peeing! When things work well one isn't aware of all the complicated mechanisms at play, but when they don't work well you realise how complex the human body actually is. Sometimes I think that it's a miracle that any of the normal processes work at all following the bashing the body gets in radiotherapy treatment. But then thank goodness the bashing includes knocking off the cancer cells or none of us would be here discussing these things at all!!😉

[Silver1-lady]

yes very true but radiotherapy is the gift that keeps giving I was fine for 2 years after treatment then things went downhill from there hope you get relief soon sending 🤗