This week there have been several discussions on forum about gynaecological dryness. Something of which I have plenty of experience. Last year my local Lupus UK group asked me to write an article for our newsletter, which got lots of appreciation. So, just in case it could be useful to someone, here is an excerpt of the bits readers liked the best. No doubt you'll have something good from your own experience to add 😉
Lots of us manage chronic dryness related to our inflammatory conditions: eyes, mouths, throats, noses and even our ears are affected, not to mention our skin. Lots of us feel we can talk openly about these kinds of dryness with whoever: doctors, friends, family. But what about dryness down below: that most intimate of drynesses...the kind affecting our vulvas, urethras and vaginas? How many of us feel comfortable bringing this up...even with doctors? Not me!
Plenty of us have been keeping calm while carrying on silently and despairingly with intimate dryness - often from relatively early in life, even before menopause. Meanwhile, life expectancy increases and research improves medical treatments. Consider this: an average woman in her 80s has lived around 40% of her life after menopause. That can mean a lot of dry years. And isn't 80 the new 60 now, where retirement is concerned?
Quite a few of us find the onset of vaginal dryness precedes that of dry eyes and mouth by many years. At first, our doctors may describe our early onset dryness as sicca symptoms…eventually attributing them to secondary sjogrens. From my mid 30s to 50s, way before my version of lupus was recognised, I spent painful, vexing, lonely years dismally wondering whether anything could really help with my version of early onset intimate dryness. I researched & conscientiously did all the recommended lifestyle management with OTC products etc...but that barely made any difference. When I did finally reach out to the NHS, I discovered there is real help available for patients with chronic inflammatory conditions from wonderful specialist Women's Health Services. Indeed, the individualised solutions provided are as reasonable and effective as those for other body bits affected by chronic inflammatory condition-related dryness.
Of course, i'm juggling the hospital clinic collection typical to NHS patients like us. My intimate dryness medication and physiotherapy regimes seem to me as reasonable as they are effective: thanks to my GP, gynaecology clinic, urology clinic and specialist physiotherapists. The effort I put in is no more energy/time-consuming than that I devote to daily routines for oral, eye , ENT and skin dryness. As with the positive influences of my lupus meds, the elements composing all my dryness treatments are definitely most effective together: one for all, and all for one! And, as with the combined therapy of my lupus meds, the benefits gradually accrue; improvements began within months, and continue to increase. Of course I can & do grumble at times, but generally, NHS commitment to my wellbeing is paying off big time - way beyond my expectations. And, yes, I do keep up those lifestyle practices I got into decades ago.
So, now, after decades of suffering pain, isolation and distress, my degree of dryness is more comfortable and sex is a joy. Lesions, tears and splits are rare. Inflammed, itching and fusing tissues are less troubling. Urological infections and leakages are better controlled. What’s more, 5 years on from starting daily lupus meds, I have less joint/muscle pain plus more stamina/resilience. What I had to do was proactively listen to my body, speak up to the right people, persevere, and give combined therapies a good go. Of course my version of lupus still means occasional phases of feeling more like 90, but I can manage these phases more efficiently and effectively now.
Lupus UK's range of publications includes the fact sheet 'Lupus: Fatigue and Your Lifestyle'. Its section entitled 'What about my sex life?' offers great advice: kind and well founded, clear and concise, touching on key physical and psychological issues. I recommend you download this...here is the link:
Meanwhile, here are a few tips:
*= on NHS prescription
• Anti-Inflammation diet & supplements do seem to help
• Avoid scented bath/shower products, treated pads etc, I use Weleda’s baby range
• Stick to showering and avoid soaking in the bath
• Go for fabrics that breathe, avoid tight clothing
· Hydrocortisone: apparently this can help with sores/lesions
· Dermovate*: extra strong, keeps my lichen sclerosus controlled, the ointment form suits me better than the cream
Topical HRT*: Vagifem slow release vaginal tablets, Ovestin & Gynest creams etc help some locally, but causes rashes all over my body.
- Vaginal Ring*: Estring: inserted into the upper vagina & worn continuously for 3 months before replacing (maximum duration 3 years)
Oral HRT*: helps some systemically, but does nothing for me
• Emulsiderm*: cutaneous emulsion/bathing water additive, I soak in the bidet for a few minutes after showering. Porta-bidets that fit into loos are available, sinus-rinse squeezy bottles are great for travel
• Aqueous creams: use cautiously, they give me rashes
Bio adhesive non hormonal Vaginal Moisturisers:
• Replens MD & Regelle*: easy to use, I apply Replens every other day...Regelle is supposedly even longer lasting...am about to trial it
• 'Yes' water-based intimate lubricant*: organic, hormone/preservative/paraben-free, of the loads we’ve tried, this is the very best – the website is great: yesyesyes.org
Women's Health & Biofeedback Services Physiotherapists & nurse specialists:
Ask your GP, gynaecologist or urologist which NHS practitioners are the best in your area
• Medical examination to assess pelvic floor muscle strength: I'd been doing yoga, pilates and tai chi for years...even so my PFM strength wasn't as good as I’d imagined
• Medical examination for prolapse: I’m having this now due to history of anal prolapse + persistent symptoms indicating several more developing down there
• Advice on self management and biofeedback muscle re-education: strength is as important as relaxation, expert help makes all the diff to getting the balance right
• Dilator training therapy for post menopausal vaginal atrophy: vital on the 'use it or loose it' principle alone - especially if you’ve not had vaginal births, or are infertile like me (the NHS protocol for DES-daughters like me involves annual internal exams with colposcopy)
• PSDWT: pulsed shortwave diathermy therapy helped my recovery from a colposcopy injury