I’ve had enough

Women's health
1

hi

sorry this is gonna probably be a moany post. Here goes.

my architecture has practically all gone clit nearly sealed off. 

I get so much pain and itching and burning I cannot sit comfortably at all,

today (Christmas Eve,eve) don’t think I can even get dressed.

peeing is difficult and if I need to go I cannot hold it in ( result. Urine burns, oh joy!!! ) my skin tears when I poo so that is a complete joy too NOT!!!!! Having a bath causes a major flare up ( I use Epsom salts) I think it’s the water that causes the problem.

I have many other debilitating rare  conditions (as well as LS) with “wonderful” symptoms. Ehlers Danlos syndrome, Dysautonomia, pernicious anaemia, early onset osteoarthritis, osteopenia, chronic pain syndrome/fibromyalgia, chronic asthma, mast cell activation disorder, vitiligo and more. My body seems to have completely turned against itself

The thing is I feel so alone in this, I have had enough.

Are all these things linked??

feeling so long but can’t even cry at the moment (can’t make enough tears anyway!!).

sorry bout the moan but I can’t bring everyone else in my family down with me, but I just needed to say something to somebody.

have a great Christmas everyone. 

Thank you for listening .

X 🙃🙃

2

Please know you are not alone. I think once we have an auto immune it’s like open slather. Sometimes it all becomes too much. I have had a lot of success with cutting out sugar and trying to have a natural or organic diet. I use paw paw ointment regularly. Initially I was using clobetesol for 5 years! I also eliminated stress. My job was literally stress on a plate. I’ve settled down and while I still have issues every now and then but nothing like those initial years.

i wish you well 💕

3

So sorry your completely miserable at the moment. Think we all understand how your feeling. LS on its own is bad enough without all those other conditions too. I've seen a couple of people mention Epsom salts but I've been told about Borax. To many suffers horror I have also tried Vicks. I can only speak for myself and say it helped me. The menthol soothes and yes it burns a little but no worse than the burning itself. Fire with fire and all that. Do hope your mood lifts and know your not on your own. Stoicism is one thing all LS suffers know about. God bless. If not an entirely happy Christmas, a peaceful one. X

4

My goodness you are dealing with such a lot here. I hope you have empathetic doctors. It seems you could do with some counseling help too, but that's not easy to find of course. I too am battling fusion around the clit area and it is so frightening. Are you using steroid cream? Try borax solution to swab with or soak in, it is soothing, as is Emuaid. 

I do hope you find some relief and have a remission from your LS. And can at least switch off a little to enjoy Christmas. Best of luck - Sarb 

5

Might the Epsom salt be drying out your skin? 

Read the thread about bathing with borax. I don't find it helps my itching but you may find release of fusion. 

My three main triggers are sugar, stress, and sweat. I do find oranges and clementines and chocolate especially problematic.  When I went gluten free, my symptom basically disappeared. Unfortunately I didn't stick it out. 

I would recommend emuaid as being very helpful to me. 

It sounds pretty difficult to have all those health complications going on. 

Prayers!  

6

So sorry you have all this.

It does go with auto immune inflammation of the system problem s I am prediabetic.

( also bipolar but I don't think that's particularly connected). Yes architecture has gone , so depressing. Last time I tried normal emu oil( not emuiad) it burned. At moment Im using organic shea butter....greasy, needs to be squished around to get lumps out. I have a Spitz bath put it on when still wet goes on easily ( don't know if this is any help to anyone). Or coconut oil v gentle. Have piles can be v sore. Seems as if Shea butter has at least made a difference with them which is something! Horrible to have all this to be distressed about at Xmas it is a lonely condition! Feel for you having v difficult time at moment. Hugs Maggie

7

I wonder too if Epsom salt s could be drying your skin. Xm

8

Aww bless you, life seems incredibly difficult for some of us older women. I know it's not solely middle-aged/older women, but in the majority I believe. Things definitely seem to go array health-wise after menopause, for me anyway. I had pre-cancer of womb lining, hysterectomy, now LS has cropped up. I've had all the usual menopausal symptoms but the worst has been depression. Like you, I've been devastated by this diagnosis, even felt life wasn't worth going on. But, as difficult as it all is, I've managed to take an holistic approach to it, along with the prescribed meds. Basically, I just wanted to let you know you're not alone, and there's always someone to chat with here. Sending hugs 🤗 x

9

  Hi there,  It sucks when you have a lot of other autoimmune conditions as well..I know all about that. The itching/soreness etc can be brought under control but it takes some work and at this time of the year that is doubly difficult.   My suggestion for the New Year would be to go Gluten free for a month to see if it makes a difference to you.  For some, it is like BINGO!!! If you are going to do it you have to commit to it.  After a month you should know whether it has made a difference to you or not.  If not, then try going dairy free, again, for some people dairy is a HUGE trigger. Finally sugar.  Sugar is probably the worse thing ever for LS.  It contributes to thrush which  in turn gives you a LS flare up.  I happen to believe that in most cases when we have a LS flare up it is because we have an overflow of candida in our body.   What I do to combat that is that I take an over the counter pill called  Fluconazole.  It is an antifungal medication used for fungal infections.  I take one of these every 3 to 4 months.  This ensures that I rarely have a LS flare up.   Of course, I try to limit my sugar intake as well. Hang in there,

and Christmas greetings.

10

Hey,

Im so sorry  you are going through this. It sounds so hard. It's made even more difficult by the fact that it is really an unseen and unspoken illness. I feel like I can't talk to anyone about it and that makes it so much worse. Thank goodness for this forum and all the incredible, strong people on here. 

Keep up the fight. Sending you my thoughts and I hope it gets better for you. 

Xoxo 

11

Hi Terry. I can relate. I too have awful burning and pain. I was told in oct that I have LS because of archicture change. Never had biopsy and think I need one. Clobetasol not helping. Yes it’s very discouraging and I know everyone’s sick of my lamenting!  I go back to urogyno Jan 9. I had a great gyno but unfortunately she retired few years old. My new dr is younger than my daughters. Try to enjoy Xmas  I know it’s very hard when you feel rotten 

12

Terry68562

WOW ----- I KNOW the pain you are going through.   I also have/had pernicious anaemia, early onset osteopenia, exercised induced asthma (just this year at 49), histamine intolerance, and vitiligo.    I've had LS since 1995, I think.  Was treated for every but..... for many years (yeast, bacteria, STDs).....   Finally got the LS diagnosis about 3/4 years ago.   Most docs just want to give a steroid cream and be done with you.   I want to know the ROOT problem and fix it that way.   Not by applying a band-aid.   I feel for all that you are going through.  There are nights where I will scratch and claw myself till I bleed, knowing that I'll have to pee soon and knowing IT WILL BURN!   I've tried every other skin oil you can think of.   Olive Oil does seem to help the most, but when I'm in a flare up...... holy hell, nothing works.  Even diaper rash cream doesn't work (anymore).   I'm also in peri-menopause and since then, the LS has gotten much worse.   

I wouldn't wish LS on my worst enemy!