Week 10 - things are looking up 😃
Posted , 6 users are following.
Firstly heartfelt thank you's to everyone who has taken the time to reply to me when i've been feeling low - i wanted to share where i am now in the hope that it might be able to help anyone newly diagnosed or finding themselves in a low moment.
It's early days but here's where I am now.
After days/weeks of tears I knew that I had to make peace with LS as we've hopefully got a long future together -
WASHING & GENERAL MAINTENANCE - hydromol shower emollient, washing hair over bath separately, water mist and CETRABEN ointment after EVERY toilet visit. Only white underwear ( at home none ) and transfer from trousers to mid length skirts. Washing clothes in Surcare detergent & softener then re - rinsing underwear with just water.
REFLEXOLOGY - once a month for relaxation & stress relief.
PELVIC FLOOR PHYSIO -once a month , alongside the reflexology relieving tension in the pelvic floor ( i believe the heaviness i was feeling was my anxiety), it also reassured me that nothing hurt inside the vagina and gave the green light for sex - tentative but good. Also a good reminder of how to do pelvic floor exercises correctly.
DIAPHRAGMATIC BREATHING - 2 x 5 mins daily recommended by physio and THERAPIST
TALKING THERAPY - once a month is helping to put things in perspective, she's not (yet ) a specific expert in LS but specialises in chronic conditions.
5mg of AMYTRYPTILENE before bed - a tiny dosage for a minimum amount of time, my GP explained that the burning i was still feeling was neuropathic and this would help break the cycle - it has.
DIET - no alcohol , no refined sugar and being mindful of but not a slave to excluding anything else.
I have 2 weeks left on daily dermovate then drop down to 3 x weekly and use less than a pea ( petit pois size) more than that left the area sore the next day. This was the standard care routine recommended by vulval clinic - fingers crossed !
I am Uk based, luckily the talking therapy is covered by ( husbands private health insurance) but the other stuff i figure is an investment in my future health and giving me tools to go forward. Now that i have all this in place I dont feel the need to talk so much LS stuff to my husband and life is much more normal. LS is not dominating my life at the moment.
As i said its still early days - maybe this will help someone and thank you for all the suggestions i've been given. Its a personal journey !
Good luck on your journey !
2 likes, 5 replies
justine89448 sarah24152
Posted
Glad to hear your doing so well, this is a great site, for a not well understood disease.
LS is really awful sometimes so hearing this gives us all hope and confidence to keep fighting back, Thank you
Debbz1989 sarah24152
Posted
Sarah - so happy to hear you're doing better! Thanks for sharing your journey so far.. it helps to read some positive news 😃
sarb73328 sarah24152
Posted
Wow what an encouraging post, thank you Sarah. I too am in UK, was advised to take amitryptiline (10mgs) which i agree helps. I am also following a similar regime to you. I find it interesting that you are having reflexology as I have tried this too. My very trusted reflexologist identified I hold a lot of tension in my shoulders and neck (I am aware of this) and that I breathe shallowly and need to breathe from diaphragm. So, like you, I try to practise this. I believe that so much of my LS was brought in by stress and tension. I think I am in permanent 'flight or fight' mode which produces a certain hormone (the name of which escapes me) which is not good for one's metabolism. Keep us posted in your progress please.
msbutterfly sarah24152
Posted
Thanks Sarah. I was diagnosed a year ago and I think we all go through the depression over it, then ultimately acceptance and coming up with a plan. It's interesting that 2 people mention amitriptyline because I've been taking it for years for sleep (it's the only thing that helps). Maybe it's helping because I don't have any pain (never have). I also don't have itching, fusing, or white patches (I think because of my Borax baths), but I am "disappearing," which is highly upsetting.
kay70189 sarah24152
Posted
hi Sarah
haven't been on the site for a while.
felt i had to reply.
i did all what you are doing inc diet went paleo. i became much healthier and the illness has gone in to remission.
i use the clob now and then when it feels odd. dont wear panties. use estriol cream as i have gone through the menopause.
eat a normal diet now include alcohol.
took 24 months to get to this position . still have a lot of stress but feel it was a healthy diet that helped and using clob regular twice a week.i now after speaking to the skin specialist to use only if needed. seems to be working . my mum had this LS so its heredity 51 when it started.58 now. your on the right track. also baths with bicarbonate of soda (salt baths) Really helps skin.
kay x