Hugs needed (and a bit of encouragement wouldn't go astray either LOL!

I seem to be taking one step forward and two backwards here.

I'm hoping I made the right decision in weaning off HRT so my Immunologist can help get to the bottom of this. So far I haven't had any great repercussions as far as mood swings/hot flashes/night sweats go so maybe I've already done the hard yards there in the last two years. I hope so Sleep is another matter though, but it's improving.
I have a return of PAIN, pretty substantial pain that is. I'm not sure if it's to do with the weird immune stuff, my ovaries trying to work or adhesions around ovary. I also have thrush in my bowel again The pain is low down in the right groin (that's the leg that has been gammy), it's extending around my back and up to my ribcage I sometimes wonder if his is some kind of vascular thing. I was out in the sun on the weekend again for a short while. I broke out in a short-lived rash again which was pretty bad. It's gone now, but I still have the mouth ulcer, the lovely livedo reticularis (lace-pattern) on my legs is really bad, Raynauds, pins and needles and hip pain, the tremors, etc. etc. I feel (probably from the pain), I guess.
We are supposed to go away for a week next week and I was going to make an appt. with my Immunologist for when I get back (after I've been in the sun off and on for a week). My friend thinks I'm mad and that I will end up killing myself if I spend a week in the sun, but I want to get this sorted. But....... not to my own detriment. On the other hand wanted to wait another couple of months before I make the trip to see him, so he can test hormones/thyroid etc cos no-ones done it for about a year.
I figured it would be best to have been off estrogen for a while before doing testing though. I know I hang onto that stuff and it builds up in my system, so I wanted an accurate reading.
It's hard to think through the pain issues.

Lily if I understand your post correctly you have gone off your estrogen?? Why is this? And yes I think quite likely your pain is from your ovaries trying to do their thing now that the hrt is gone!

I don't want to scare ya Lil, but I have to tell you that my immunologist told me that I should never go off estrogen if I ever wanted to take it again as people who have a hard time tolerating it to begin with will likely not be able to take it again after stopping.........having said that, it doesn't mean it will happen to you...sorry I'm supposed to be reassuring you here!

sending the biggest 's I can hun!! Hang in there you're right, between us all we will help each other through this!!

Thanks Gidge, yes I have been weaning off it for the last 3 months, had to do it gradually. Same thing when I started on it - gradually increased dosage.
The reason is that it is a steroid and even though I may want to resume it later it's really skewing the picture. I asked my immuno if it could boost my immune system enough that it could hide the real problem in my blood tests. He said yes, it has the capacity to do that. I am concerned about it, but I need to get to the bottom of this. No-one really knows what happened to my ovaries, no one really gave me a firm diagnosis of menopause, we just knew estrogen helped a lot. But then when the other symptoms started surfacing, the lupus stuff, the MS stuff, the vitamin D deficiency, the possible thyroid connection no-one could work out just what was going on. Yes it's uncharted territory for me and I don't know what will happen. But I do know that my life on it wasn't great either, there was another hidden problem. after 2 years I'm ready to find that other problem and deal with it. at least if we know what it is , we can do something about it.
I still have ovaries so at least I can have the tests done again to see where they are, if they are OK then we know that my problems lie far deeper than that. It's a little scary, but it beats fumbling around in the dark looking for

true enough Lil, and I didn't meant to be discouraging, but was surprised when I found this out and meant to mention it to you ages ago.....hopefully this will clear things up for ya and you can move on from there......you know I'm here night or day for ya!! 's & 's

Just hugs

Let me know what happens...and take care of yourself.

{{{{{{{Lily}}}}}}}}
No answers here either my friend. But I have plenty of s

You are in my daily ers Lily. There just has to be some answers for you out there, and I hope that you find them fast. You've been on this road for far too long.

And I'm sorry to hear that things are going so rough for you. I think your plan sounds like an interesting one...we need to be our own super slueth's (sp?) and this may really help you solve some mystery.

You are always in my heart, hopes and prayers sweet Lily...and I'm sending you some huge 'S Please do let us know what happens....

's for all of you angels. You make me realise just how I've kept going for two years like this, I can't do it without you.
The groin pain is a fraction duller this am, but my leg is another matter. I'm going to ring and make the appt. for the Friday I come back if I can. It won't hurt to touch base again with him, besides he wanted the summary of family history <some summary, including a FULL personal history...... it's 6 pages long> But it will give him some to work with and being the super slueth he seems to be it should help. I have DS's underactive parathyroid to throw in and wait till he hears about my sister/mother's sagas in more detail. I'm thinking he thought the vitamin D would solve a lot of my problems, especially the ichytosis (skin disease), well it hasn't and everything else is escalating. I am now waterproof when I get out of the shower, so can I count that as a positive thing? I look like I have lace stockings on of the red/blue variety (charming). It's not easy being weird
I'm weakening and at the risk of causing more tummy/bowel problems I'm gonna hit some pretty hefty pain killers today. A gal's gotta live as best she can between doc's visits.
Thank you my friends.

{{Lily}},
Are your Drs still testing you for Lupus? You seem to have many of the symptoms?!? Wish I had some info that could help....
Your in my thoughts and prayers as always, I hope your visit goes well Please be careful spending all that time in the sun..

Lily, you go for it, I believe we have to make ourselves comfortable at any cost and if that means painkillers....so be it....take it easy dear sister and here are some more 's 's 's