ANY advice on lichen sclerosis/recurring UTI for a desperate mum?

[StripyFish24]

Hi everyone, happy new year to you all.

This is a shot in the dark to see if anyone has any experience of, or advice for getting through, the awful chronic pain and discomfort that comes with recurring UTIs and lichen sclerosis.

My mum (71) has been struggling for years with recurring UTIs and, as is so often the case with women’s health, has been pushed from pillar to post with no answers and often not a lot of sympathy (one GP, who was both female and a gynae specialist, told her rather flippantly that this was all “the joys of being a woman”). We went on holiday together in August 2024 and mum had so many bad days that she spent more of the break in bed than not, missing out on everything she’d been looking forward to doing with her grandsons. There have been sporadic good days since then but this August we went away together again and once again she was barely able to leave the accommodation. Since then, there have been hardly any good days and she’s at her wits end. She’s had countless rounds of antibiotics - some of which she knew she was intolerant or resistant to - scans and tests to rule out really serious things (she has come through cancer once before and is a tough cookie), topical creams… you name it, she’s tried it, all with limited results that last a matter of hours in most cases. On the best days she’s not in as much pain, but she’s back and forth to the toilet literally every few minutes all day and night.

Mum is healthy and, normally, active. She doesn’t drink, doesn’t smoke (toyed with it as a student but hasn’t done it for at least 45 years), has a really healthy diet, and usually walks everywhere, racking up an average of 20,000 steps a day. She’s an amazing mum and granny, but has lost all hope of late and ended up in A&E in crippling pain more times than I can remember.

I love and value our NHS (and have several family members and friends who work for it) but I really feel we may have exhausted what they can offer. A medic in the family advised that private treatments may just bring more of the same but with a hefty price tag. So I’m asking if anyone may have any suggestions, however weird or far out they sound, for anything we may not yet have considered. Dietary, topical, holistic, exercise related, even conditions that may not have been considered yet.

It’s a long shot but I’m so worried for her and seeing her so constantly upset is just awful. Please be kind, and apologies for the excessively long message.

Thanks in advance x

Has she ever tried vaginal oestrogen? It is thought of as part of HRT but is such a low dose it only reaches the pelvic organs and a lot of women of any age find is makes a massive difference to bladder health as well as vaginal health.

Thank you, super quick reply! She was prescribed vaginal oestrogen about 4-5 weeks ago and has started taking it; she said it helped initially and she is aware it can take months to have a real effect. She’s also been taking a bowel relaxant for about a week, but one of the side effects of that medication is that it can cause a UTI, and the existing one never seems to fully clear up with antibiotics. She says she thinks she is on the right track medically, it just isn’t a quick fix, but every time something seems to be working it then does a u-turn and she’s back to being in a lot of pain again.

If she's prescribed vaginal oestrogen, make sure she uses it often enough.

Usually the instructions say to use it daily for the first two weeks and then drop down to twice a week.

For a lot of women twice a week is not enough.

Probably why she thought it helped initially then wasn't as good - she needs to use it more often.

That’s really helpful, thank you

I take D mannose which apparently is effective against E. coli uti infections.

not sure how good it would be compared to antibiotics.

Has she had any microbiology done to check what bacterium is causing the UTIs? If not and she can afford it maybe worth getting a Digital Microbiology (or similar) test as AFAIK you cannot get tests as comprehensive on the NHS. But before that - has she had a bladder ultrasound? And been tested for diabetes? I would avoid caffeine, alcohol (I know you said she doesn't drink, just listing it for anyone else reading for advice) and sugary drinks, which is very boring but can help with bladder irritation.

For the LS, is she using dermovate/clobaderm? You're meant to use it daily in a flare and then a twice weekly maintenance dose for life. I have LS and doctors have told me it doesn't affect the bladder but I went through a horrid spell of UTI like symptoms (with no infection showing in tests) and wondered. Is she also using emollients to wash/shower, avoiding detergents for washing underwear (or double rinsing), avoiding tight trousers etc.?

Are these all proven UTIs?

If she has undertreated lichen sclerosis and vaginal atrophy, it's very easy to interpret every burning sensation as a UTI, contact the GP, get prescribed another course of antibiotics without anyone looking at the bigger picture or whether these are UTIs at all.

And has anyone had a proper look to see if she has a prolapse? Seen a gynaecologist or had urodynamics done?

Op, is your mum seen by a gynaecologist or a dermatologist. I only ask as I didn’t start to get anywhere with my LS once I was seen by Dermatologists.

Is she on any steroids? Clobetasol for eg? And regarding the urine infections - it could be that the LS is irritating her Urethra and causing the infections.

This is a FB page I recommend.

There is a fantastic Facebook group - closed - have to apply to join about vaginal atrophy and associated problems - lots of experience and help on there and many who have LS and UTI problems could be worth a try.

I would be wary about using steroids on a maintenance dose because of thinning of the skin in that region but certainly a proper dose of clob daily then every two days then twice daily for the LS should bring it properly under control.

Agree with others that if she’s only just started Vagifem then she might need to take daily for longer and maybe forever given bladder issues - she can ask GP for this - different protocol for bladder support than vaginal atrophy. She may want to pair the pessary with some low dose oestrogen cream on the external area including perineum to support repair and health in whole area. A good GP/ gynae should support this approach.

What a shame your mum wasn’t prescribed topical oestrogen much sooner. Vaginal atrophy’s proper name is genitourinary syndrome of menopause (GSM) as it affects the urethral tract as well as the vagina and the vulva (external area)l Urethral inflammation caused by weaker thinner tissue due to low oestrogen can feel like a UTI and also make us more susceptible to a UTI. Repeat short dose of antibiotics that don’t clear the infection can lead to a chronic infection.

I’m not sure if it’s been properly established that your mum has a UTI or urethral inflammation due to GSM. Also, if she has been properly diagnosed with LS. The correct treatment for LS is steroid ointment which when used as prescribed should not thin the tissue.

You mentioned that your mum doesn’t drink alcohol. Other potential bladder irritants to be aware of include fizzy drinks, squash (except lemon barley water) tomatoes and caffeine. Drinking plenty of water helps prevent urine from being too concentrated which increases urethral irritation.

With bladder frequency, every time we wee urine (which by nature is slightly acidic) passes through the urethral tract, irritates it, and increases the urge to wee again. Vagifem inserted about halfway up is closest to the urethral tract in absorbing through the shared wall to thicken and strengthen the tissue. As your mum is aware it takes time to work, should be used for three months and then reviewed. If symptoms aren’t improved and controlled by that time the frequency of using it might be increased. Some women also use oestrogen cream externally on the vulva and at the urethral entrance which can be beneficial in targeting that area as well.

Once the topical oestrogen has started to thicken and strengthen the tissue, and any proven (properly lab tested) UTIs are under control your mum could try things like bladder training - only going at regular times rather than at the slightest urge to wee which can become habit.

As others have mentioned there are some really helpful online groups including the LS group tagged above, however some are paused over the festive break so might not currently be searchable on Facebook

Doctors are so reluctant to prescribe oestrogen. I bet many women are being left to suffer needlessly. I've been told I can't have it until I "fail" a blood test, regardless of symptoms. I really hope your mum can get suitable and longer term treatment that works.

I think this is changing, effectively as a lot of female GPs hit peri and realise how incredibly awful GSM is.

I was fully prepared to just see what happens and do it naturally. One week of itchy undercarriage was all I could put up with before I was begging for oestrogen.

Knowledge is improving a lot thankfully. Topical estrogen for VA is extremely low dose and there are very few women unable to take it.

What does failing a blood test actually mean? If under menopause age has FSH being done more than once to see if you are in early menopause following guidelines? Also have any tests been done to rule out other causes?