Intimate gyn dryness tips

[Barnclown]

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 😉

🍀🍀🍀🍀coco

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:

lupusuk.org.uk/publications/

Meanwhile, here are a few tips:

*= on NHS prescription

Lifestyle Stuff:

• 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 


Topical Steroids:

· 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

Oestrogens:

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

Links:

patient.info/doctor/hrt-top...

evidence.nhs.uk/formulary/b...

Emollients:

• 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

[noonoo57]

Hi coco,

What a great post.👏🏻👏🏻👏🏻👏🏻👏🏻👏🏻👏🏻👏🏻

This is really good info just what I was thinking about and what can I do to improve exactly the same issues that you have gone through.

Just printed it all so I can have a good read again.

Thanks guru yet again helping out the troops. What would we do without your wise words and experience to get us through the day.

Take care and lots of love noonooxxx🌹🌹🌹🌹🌹🌹🌹

Ps. What a beautiful photo. Is it a wild Orchid.

[Barnclown in reply to noonoo57]

Thanks noonoo...am so glad😆😆😆😆👍👍👍👍😘😘😘😘

It's a self-sown native Bee Orchid. they've colonised grassland here in Badger's Wood: so exciting!!!!

[noonoo57 in reply to Barnclown]

This Badger's wood sounds delightful, how wonderful to wake up to it everyday.

Just catching up with all the posts, not been good since a steroid injection, must have had a reaction or flare this time round. Starting the Methotrexate as soon as I am over this hope it helps the pain.

I'm sorry you are still waiting for results but it's part of the course we are always waiting with fingers crossed. Good luck and I will be thinking of you.

Thanks for the Photos I always enjoy them.

Take care coco. XxxxxxxX

[Barnclown in reply to noonoo57]

Thanks again....sorry you're having this reaction, noonoo 😏....counting on you to let us know how metho goes 🍀🍀🍀🍀

[babssara]

Brilliant post as usual. You put so much effort in to help all other sufferers.

Thank you so much

xx

[Barnclown in reply to babssara]

You're totally welcome, babs. Am just so happy & relieved if any of it helps...I simply cannot bear the thought of not passing info about this stuff on & on & on...it mustn't end with me.....and I hope future generations of men & women communicate openly about this + know more about it + receive treatment as a matter of course: it would be great if no one has to suffer in isolation &/or PUSH for help the way we mostly have had to 🤗😘🍀

[AnnNY]

My OB/Gyn referred to "Dilator training therapy" as physical therapy and recommended a place to go. After I asked her just what that meant, she told me there is also a "do it yourself" method and told me where our local sex toy store was. Never so embarrassed to be a late 50 year old lady in there. She also gave me some vitamin E capsules to use with my "physical therapy." Since I'm single, and no prospective boy friends in sight, and since I don't know if I'd have the energy for a boy friend anyway, I have pretty much given up. Later I told her I had bought the "do it yourself" device, but am afraid after I pass away someone in my family will find it. She told me she would write a prescription for it that I can leave with it!

[Barnclown in reply to AnnNY]

👏👏👏👏 Ann, you've got me laughing....I keep my 'gear' in a Brown Paper Bag on top of the wardrobe: no way am I not going to be hovering over it observing the reaction of whoever discovers it once I've passed on 😉😆💃💃💃

[GlasgowHen in reply to AnnNY]

Thank you for making me laugh so much. What a fantastic Dr with a sense of humour you have!

[AnnNY in reply to GlasgowHen]

Thanks!

After I went back to the doctor and reported my experiences with my "physical therapy" we were both laughing so hard, I can't imagine what the nurses outside the door were thinking.

[ExtremeDuvetDaze]

Wonderful post Coco thank you so much for sharing your experiences and for such helpful info, really appreciate this, and very well written 👍🏼 and what a beautiful photo too.

All the best

Diane 🌺🌸xx

[Barnclown in reply to ExtremeDuvetDaze]

🤗: diane, am blushing...thanks so much 😘🌻🍀

[misty14]

Hello Barnclown

Thank you so much for sharing your very helpful, informative article. You are such an inspiration, how hard you've worked over the years on lifestyle management techniques and still do . So pleased you have had good improvements for such complex health problems, heartening to know hard work can pay off!.

You are so right saying a lot of us just put up with symptoms rather than seeking help. This will help and encourage us to do so, we don't know what help is available either so thank you so much for sharing. Keep up the good work, your such a star for us. Lovely pic of the orchid, they're beautiful aren't they?. X⭐️⭐️😊😊

[Barnclown in reply to misty14]

😍Your wise & kind words mean a vvvv great deal to me misty: 🌟🌟🌟🌟🌟 expert patients like you who inspire me...without you, I wonder if I'd have been brave enough to try the cocktail of prescrip meds that are helping me feel better at 62 than I have since my 20s. Yes, lifelong i have been & still am totally committed to lifestyle management, complimentary therapy & NHS rehabilitation techniques, but now I KNOW patients like us do need the help of pharmaceuticals in considered doseage & combination. So, 👏👏👏👏thanks for your guidance, feedback, friendship & encouragement. 😘🍀😘🍀

PS yes: orchids are so beautiful they take my breath away! And our forum is so beautiful: all of you take my breath away!

[misty14 in reply to Barnclown]

Hello Barnclown

It's not right for me to have so much credit!. You would have tried the immuno- suppressives out of sheer necessity because you were suffering so much!. Also the detailed research you do might well have given you the confidence to try!. Thank you for being such a shining star on Forum . 🌟🌟🌟👏🏻👏🏻👏🏻X

[Barnclown in reply to misty14]

Yes 😏 point taken...but I'd have felt more isolated & anxious than I have thanks to all of you here 😍😍😍😍

[Chantev]

Hi Coco

This is a most comprehensive and constructive post. I must admit I never associated this condition with my lupus. As you said many of us suffer in silence, thank you for speaking up for the silent majority. I did seek help from my gyn dept but was dismissed with a tube of Gynest and this was the end of that. Am going back to my gp with your info and request further referral. This forum has been an immense source of information and support, thank you so much for that feature and all the others that have brought some light into our dark lupus tunnels.

Keep up the good work

Chantev

[Barnclown in reply to Chantev]

You're vvvv welcome 😍 Chantev: and 🍀🍀🍀🍀get stuck in: please report back on this: am already in the edge of my seat!

Since 2007, over the years I've had 3 separate phases of NHS Women's Health Services Physio treatments & training sessions...each phase involved a series of WHS Physio clinic appts. Each referral began with a general review of my diagnoses, meds & specifically gyn issues + explanation of my new problem.

I got these referrals via a combo of both GP & gyn & urology referrals (once my GP wrote to my gyn & told her to refer me...because at that time the system actually required gyn referral). I'm infertile due to DES-daughter internal repro organ birth defects, but even though I've never given birth, the NHS has been obliged to help me.

Take care 🌻🌻🌻🌻

PS you can see WHS trained physios privately IF the NHS won't come round 😉. Some physiotherapy practices do have WHS-trained physios.

[JL1w]

Thank you so much for your very informative information - I have been suffering with issues down below for many years well before I was diagnosed with any auto immune issues and was treated for years for vaginal thrush and I do think at times it was thrush but there was other problems going on that was never addressed - I was told by my GP about 4 years ago I had vulvodynia she prescribed dermovate stwroid cream and ultra base emollient this does help a lot but I still have flare ups approx once a month cuts sores and very sore and painful seems to be pre menstrual related ,even though I don't have periods as if that's when my cycle would of been -

I thank you so much for your information I am going to go armed to my GP and ask for a gynae referral as I recognise I need help as it now causes major psychological issues -

I feel very emotional as if you have already helped me by allowing me to talk about my problems with you all and helping me to recognise it's something I need to address -

I feel I am still learning only 1 year post diagnosis and still so much to know and learn . Would you mind Barnclown if I asked what Meds are you on and what seems to help with your autoimmune illnesses ?

Thanks for all your help and most of all I think I have found friends who really do understand my problems - thanks for allowing me to share with you all

Have a good weekend xx 💐

[Barnclown in reply to JL1w]

😍Hello JL1w...am giving you a BIG gentle hug ....you've been through an awful lot...am so glad you found our wonderful forum👍👍👍...and am delighted if I've helped at all. Just this week I've replied in a couple of threads here, and given basic details of my lupus treatment plan, so here are links to those threads....hope this helps...please let us know how you get on:

healthunlocked.com/lupusuk/...

healthunlocked.com/lupusuk/...

🍀🍀🍀🍀

[MrsMouseSJ]

Thank you so much for this, Coco. and a big hug to you

[Barnclown in reply to MrsMouseSJ]

🌻🍀😘🌻🍀😘🌻🍀😘

[Purpletop]

This post should be made a "sticky" so it can be visible all the time and easy to find.

Thank you again for sharing this invaluable information x

[Barnclown in reply to Purpletop]

😉thank you my guru: 😍😍😍😍🍀🍀🍀🍀