Changes and Confusion

Hi Pat, she did another biopsy and I am not sure why.....but I do feel better off the steroid...thanks

I agree Christine, am looking forward to the sauve she has ordered. Personally, I think the Clob usage has contributed to problem. I noticed when I cut back my symptoms improve...may be a foe and not a friend over time. Maybe with improvement my whole system to include emotional and gastro will be able to settle down and the healing can begin..The HRT she prescribed me I think has added to the already stressed feeling...my emotions have been tight strung, not good.  So grateful to everyone here...

Hi Guppy, since stopping it the symptoms of the Vulvadynia have stopped, I am hungry again and I don't have chills. My mood has improved but I am still just one step away from crying...this thing has crushed the active lifestyle I so loved. Can you ever go for a walk again without discomfort? Will I ever be able to wear a regular pair of jeans? And the fatigue is overwhelming....

Oh Linda, I recognise those thoughts! I lived most of my life in jeans, but felt less bereft when I was strong enough to reframe those thoughts. 'Here's an opportunity to experiment with clothes...' From being a jeans and t-shirt girl, I now wear dresses and skirts (and thank everything for leggings). And, you know what? I really like the new me! Leggings and a denim skirt are fine for walking in. I spent two hours in my local Oxfam, helped by two wonderful women volunteers and came out with a whole new look for less than £50. And it was fun! I'm not a leisure shopper normally.

Also have you seen the thread 'An experiment with Borax?' I'm seeing bits of myself I thought were gone for ever, it's taken years of micro-progress and stop-starting so I didn't get too used to anything. I don't know about vulvodyna, I can only talk about LS, but it's really worked for me. Feeling down is exhausting, pain is exhausting, not knowing what's wrong is exhausting, but it WILL pass. Be kind to yourself too.

Strength and courage

Bridge

 

Hi Linda, Some women use the steroid cream to eliminate the white plaques of skin that are classic LS.  Once they manage that they don't use the steroid cream again except in emergencies, like a reoccurrence of the white plaques or pain in the clitoris. 

The jury is out on whether long-term maintenance use of the steroid cream is a good or bad thing...its a personal choice, some women once they are on top of their symptoms will use it once a week, and others like myself don't use it at all, and I'm doing great. 

Once you are without any symptoms whatsoever, which will happen, you should be able to take walks, swim, that kind of thing without problems.  Biking, horse riding, might be tricky, but everyone is different. 

I wear jeans occasionally with no problem, but I favorour leggings like bridge of sighs, its really not that terrible once you know what you are doing.  Watch your diet, take out sugar, see if that is your main problem, if not try going gluten free for a month, if that's not it, try going dairy free. 

You will discover over time what works for you and it doesn't happen overnight but it will all work out in the end.  

Remember you will likely go into remission for months or even years, that happens a lot as well.

The fatigue you describe could be the shock of the diagnosis because  I personally never felt any fatigue, unless you have somethig else going on.

Amen to all you have mentioned...no I have not seen the experiment with Borax... Honestly I am Exhausted and dragging🤪. Not sure what activities to not do anymore. I do plan on selling my bike, I think that is a no brained...  Doyou have to wear dresses every day or can you wear regular pants sometimes?

I may have other stuff, headed to the next doctor tomorrow...have lost 7 lbs due to this mess. I am thinking to much Clob...the gut is acting up again, another culprit. I don’t care for glee ten or desserts...I do like some dairy... like everyone here we must fight the battle to win the war!!! Thanks Guppy...