LS and accidity/alkaline

Oh boy!   I had heard an alkaline diet was the best, so I have been taking a teaspoon of vinegar in water every day for weeks!  Do you think it is bad for LS?   Everything is so confusing.

I'm not at all all knowing.  Just questioning.  I have for a long time been drinking a sip of apple cider vinegar in a glass of water.  No idea whether this had any affect.  I learned it would help cleanse the liver.  Eating an apple seems to do that too.  

I start to think that LS may be the result of some kind of imbalance, rather than connecting it to women's menopauze.  The premarin use gave the biggest problem just recently.  

It is hard to figure out what causes any autoimmune disease.  Makes a person think she is doing something wrong for her own body.  I have not used premarin at all, and generally have a good diet, so I don't know why this disease started.  My menopause was over more than 10 years ago...so I don't know what the heck is wrong!  But please let us all know what improvements you see using the baking soda water, and what your Dr. says at your next visit.  When I finally get to see the specialist, I will give any useful advice or info. I get from her here, on this site. There is a book out called something like the Sugar Cure...supposedly eating no sugar can cure autoimmune diseases....I am going to check it out, just in case there is something to it.

With LS a person becomes too willing to try everything and anything.  I think caution is still required.  

My instant menopause was over twenty years ago.  It could be a gradual accumulation of something.  But that could also be because of our ages.  And therefore our age group (60's and 70') might be hardest hit.  

And of course not one human being is the same and yet we are.  Meaning that some people will never get this illness and others have all the right 'ingredients' to give LS a chance.   

I agree with all y ou say.  I am only trying things that seem to have worked somewhat for others here.  I cut out coffee, etc.  So far I haven't seen anything that seems dangerous on this forum, but the things I have tried have all helped, even to just ease my thoughts a bit.   I have never been one to even take an aspirin, so I won't be swallowing anything other than the tea (i don't like)...  But I am trying the baking soda/water spray, and several other things I have already mentioned here.  I am going to stick to the low/no sugar and see if there is an improvement. I still eat some carbs, so I know I am getting sugar from that source, but I am not eating anything sweet...like chocolate, etc.

I know for sure that cutting down on sugar has helped.

I was told that a suddnen change, loss, in hormone levels , combined with a couple of stressful decades contributed to my acquiring LS. I had a Mirena coil fitted  when a gynae drastically reduced the dosage of my HRT. Within a year I got The Itch and loss of labia! I ha d the coil removed and returned to the original dose, now i am on a smaller dosage. I have been on HRT for 30 years, I had an early menopause when my mother died unexpectedly.

I was told similar things.  But also that no one really knows.  Stress is a factor, since something changes in our system when we're under a lot of stress.  

I think it is also good that we keep asking questions.    

I've ordered the book too patricia...will enjoy exchanging notes with you !!

Hi...I have been away from the computer all day, so am playing catch-up with all the posts....I have gone 28 days without sugar or coffee....I am hoping I can slow down the progression of the closing-up of the whatever it is called...vaginal opening....I seem to be so obsessed with this LS...I just keep being more and more stressed out about what is happening and I think I may be the only one who is so afraid.  Everyone else here seems to be able to function, and I am not.  I have been trying for 2 weeks to get an appt. with a vulvar clinic...in fact, 2 different clinics...whichever one will give me an appt first I will take.  It is maddening too be desperate like I am, and can't get past a receptionist or office manager who says the first appt. will be end of Jan.  I am afraid it will be too late by then.  I am a mess!!  I just hate to be so afraid and so worried...I am afraid I am actually making things worse, yet I cannot, cannot let it go and relax.  But...I am going to continue going almost sugar free (I know there is sugar in carbs, but even then I am going for very low carb vegetables)    Please let me know if you find anything interesting in the book, too.  Thank you for sending  the note  :0)

welcome patricia.

I am very concerned about your distress ....i actually think that in this instance you might benefit from walking into A and E (casualty) and explaining your symptoms so you can have an examination there and then. by pot luck you might get an experienced physician who can give you a diagnosis and a conventional prescription...so at least you can get started with a medical regime. ...not that i agree with the chosen medication (but thats irrelevant). you are a candidate for re-assurance and i would just present yourself as a mystery with a pressing need for examination.....you might be wondering if you've burnt yourself with the hot tap of the shower spray for example.

whilst i think the sugar cure is an excellent strategy. i don't think its the no1 allergen. of the three major allergens ...gluten, dairy and sugar...a trial of 2 weeks gluten withdrawal will prob reveal the principle culprit. after the 2 week period you can try to re-introduce gluten foods again...if you really want to eat pizza, pasta or pastry ....ugh...!! or you can try a 6 week period of withdrawal and enjoy the cleasing effect...don't forget to drink loads of filtered water. the latest strategy with water is to add adya...a binding agent which draws out heavy metals and other contaminants ...you can see the bound material in the bottom of your receptacle...you then pass the water through a coffee filter...or just drink the surface water....after 6 weeks try again with glutenised products ....most people do react , and you'll want to abandon them on a permanent basis. if you look into the paleo lifestyle you'll take heart. vegan paleo is also possible or if you're ok with  organic free range eggs a carefully crafted vegetarian  lifestyle is workable. ....am considering going back to this. you set yourself up for success with small  alterations but some here are engineering huge lifestyle changes right off the bat and a fast start can also be very successful and attainable...it all depends on your personality and motivation.

Hi Patricia,

I can so imagine your stress.  It sounds very urgent. Where I was a couple of weeks ago.   

Diet is one thing, but action will soon be needed.

Or try the baking soda.  Have you tried it?  It is completely harmless, using it topically. You have nothing to loose but everthing to gain.  You need to keep an opening to be able to pass urine.  

Sending you some courage.

Hanny.

Hanny...yes, I have used the baking soda spray almost every day for the past week or so.  I do have hopes for it, but it may be too late for me.  It seeems that every day the opening gets shorter and shorter...just a few days ago, there was about 1/2" from the urethra...now it is only 1/4" or even less...in just a few days.  I cannot get an appt. with a specialist who treats LS, and my local gyn. only thinks of surgery...I can have the surgery as soon as she sees my condition, I know that, but I don't want surgery and it seems I will have no choice.  That is why I am so stressed out.  All this has happened so fast.  If I had had a change in the condition even a few weeks ago, I may have been able to get a specialist.  Now I am afraid I have no choice but the surgery.  I have read that surgery is not recommended, as the tissue grows back anyway, but I feel I am truly stuck, with no choice.  I use the clob. on the area that is closing up, but it is not holding back the rapid closure.  I am sick with worry, really sick.

I so wish that all of us could help you to turn the course of LS.  Indeed - surgery is not recommended.  Ask for dilation instead.  I think it is the least brutal form that may help you at this moment in time.  I'm recovering from a dilation procedure and that is working out amazingly well.  The skin is stretched instead of cut. 

Do you also use lots of coconut oil?  It seems to be a good combo with the baking soda. Stings a bit, but has also been very helpful.

Hello to you, Hanny

I am grateful for this life-line, on this forum.  I have learned so much.  I tried using coconut oil on the LS, but because it did sting, I thought I would go back to pure emu oil, which is totally pain-free and sting-free.  Every morning for almost a year, I use coconut oil as: oil pulling.  Sounds so strange, I know.  But anyone who is interested in healthy, natural sorts of things  may like to look it up.  What you do is, first thing in the morning, put a teaspoon or so of coconut oil in your mouth, swish it around for about 20 mins...if you look it up, you will see all the benefits they claim for it.  It is an ancient Indian treatment.  OK, so back to LS....After hours on the phone to three different LS specialists, I actually got an appt for next thursday!  I am amazed, as each one had said there were absolutely no appts available until at least the end of Jan, and probably later.  So, I am very relieved about that.  I will tell on this forum anything at all that I learn.  I am so appreciative of everyone on this forum who is willing to give support or tips to us all.

I am able to almost sort of kinda relax a tiny bit after getting the appt. so soon.  My nerves are still shot, as I saw how rapidly the LS is advancing...but I now have confidence that this dr. knows better what to do and what can be done.

I just spent 15 mins typing a reply, but it went to moderator.  I don't know why for sure, as I didn't advertise any product or web site.  I hope it is approved, because I don't have the energy to relate it all again right now!

Patricia Can you get a private appointment?

By phoning the secretary you may find you can spped up the process.  Phone the place the clinic is held ask to speak to the  consultant's secretary, check on the cost  and when you could be seen- your GP will be able to make the referral. This only gets the ball rolling - normally you can revert back to  the normal clinic   if you wish. It may make. - in  you feel as if there is something you can take control of

What has your gynae said about the surgury needed - it may be they are thinking in terms of dilation anyway. Try not to freak out - and relax. What does your nearst and dearest say?

Go and get a hug

Take care Sue

Weird isn't it.  Hope you stay with us and perhaps in smaller replies you will be able to get your thoughts to us anyway.

Hang in there girl.

Hanny.

yes hang in there patricia x

Hi Patricia maybe you could try going to your local sexual health clinic as a walk in, my vulva dermatologists works in the sexual health clinic. Just a thought.

This is very good advice for you patricia from kellie the inspired...don't hesitate to insist. It does sound as if you have suceeded tho ? with this earlier appointment. But is it early enough?  As in Hanny's case the issue had been developing as an emergency...GP's don't have the facilities to respond ..which is why we have A and E . If you cannot micturate then an emergency response is appropriate. The sexual health clinic is not only walk in but has gynaes, PID and genito-urinary specialists on duty by rotation. In the event...worst scenario ...that your urethra sealed over ...then an emergency catherisation could be performed on the spot. This is a simple proceedure which takes literally two minutes once all is set up and in place. A fine rubber tube is passed into the bladder via the urethra and urine is released into a catheter bag which can be subsequently emptied. I did loads of these and got rather good at it (!!) even if I do say so myself !! Obstruction of urine is caused by various factors and it seems from hanny's experience that LS can be one of these. So if you wanted to opt for the dilation the cather would allow time for the specialist to become available. Its possible to have a once only catheter without a bag, OR a DIY technique which you can be shown by medical staff OR you can teach yourself...and is explained in an ad on this site using a sort of she-wee with an attachment to be inserted into the urethra, or you can leave a bag strapped to your thigh following an in-situ catheterisation... until all is in place for your proceedure ....A nurse or medic performing a cathaterisation with a bag would be my preference were I in that position since repeat insertions and the intro of infection is reduced...and the whole thing is fairly discreet and temporary til the dilation takes place; also reducing the necessity for surgery because the continuity of the urethra to the exterior is maintained in an open and accessible condition. For these reasons I would not delay about using the walk-in facilities.

Is it perhaps the case that we're talking about closure of the introitus? The sensitive vaginal opening? If so the remedy would, also, be a dilation ...again if you act to protect the integrity of whatever aperture you have left.  Self dilation using incrementally sized dilators is the remedy and you could start this now.

Hope this helps. Have gone into detail because if we understand our options I really do believe it helps...plus you have already relaxed

1/ because you feel the power of our support

2/ you know you will be seen in due course

I still agree with kellie about the need for an examination and that the best place is one were all the facilities exist. They can tell you then whether you're ok to wait for the appointment or whether there would be any small intervention that, with your consent, they could undertake at the time or shortly thereafter within a day or two.

thank you so much for this advice.  There is no such clinic in my area at all.  I asked the nurse what if the opening totally closed and she said to go to the emergency room.. they will use a needle to deaden then slit with a knife!  does not sound nice at all.  The nurse also said I should insert finger or fingers if poss...several times a day...and massage to try to keep area open till I get to the dr. on Thursday.

I never dreamed something like this could happen.

If I can only hold out until Thurs, I should be all right.  The nurse even mentioned surgery on Thurs, or soon after...I am not even sure anyone here in the US knows about the dilation treatment.  Seems I have no choice.  If they don't know about the other proceedure, they won't know how to do it.

I wanted to add to my earlier note.  Yes, the entire vaginal opening has closed...now the skin in heading further and I am afraid the opening to urinate will close before Thurs.  i wish I could have the sort of care you are talking about if I have to go to the ER....I also wish I had a set of dilation devices...but I have not.  This happened very fast.

I am trying to do the finger to stretch thing...but it seems a long way til Thursday!  I am grateful to get in so soon, yes, but it is not soon enough..I will report here anything that may be helpful to others with this situation.   Thank you so much for helping.  I am more than a bit distracted, and am not saying as much as I usually do on this forum!!

Happy to read that you are feeling more in control.  Thursday is not that far away.  And surely if this doctor knows what to do - gives peace of mind.  Also - when at the appointment remember to talk about "dilation procedure"

 

You do not need special dilation devices for dilating such small openings.  A small candle covered with a condom will do the trick.  

wow!   candle and condom, Huh???   I know where to get one, but not the other     :0)

well you're going to be busy...hunting around in your stores for progressively wider dildo-like objects !!

good morning...here it is morning anyway....guess what?  I talked to my dtr yesterday (she is totally an adult, 30 yrs. has been married twice, OK?) and asked her to shop for such an item for me today!  She couldn't believe it and neither can I.  But desperate times call for desperate measures.  It's not even as if she and had were very open about any such matters before, but I told her my situation and after we both laughed and got over our shock, she said since she was heading to the big city today, she would go to one of those tacky stores in the mall, and find what I want.  sigh.  who would  have thought??

i know! groan ...its amazing whats out there.

how are you now?

do you have a 'chink' as it were... to begin a dilation? how small do these things go? there's prob even a medical grading.

hey...nice that you're bonding with your daughter tho....this must be a benefit of LS...looking on the bright side !!

Yes, who knew???  Who else talks to a dtr. about such things?  Not anyone I know.  In fact, she is on her way over to my house right now to deliver the little sucker.  Er, stretcher.   I am following the advice here to use baking soda in a spray bottle after every bathroom visit, and I use emu oil all day long...I never have anything on my hands when I apply, no lotion...nothing but clean.  Every time I wake up through the night, I put oil on and do the manual stretching for about 3 mins maybe.  I think I actually see a tiny sliver of improvement!   Yes, I have not closed over up to the actual urethra opening, I still lhave some room, but the opening I have is tight and was closing up soooo fast.  I am glad if I can just halt it until I see the dr. on Thursday.

I even told my husband a few mins ago what my dtr. got at the mall.  He said.."I would have gotten it for you.  Wouldn't embarass me at all. "

sheesh.

All that cloak and dagger stuff for nothing.

You can see that my husband and I don't have a very open and tell all relationship.  So it wasn't easy for me to fess up.  But I already feel sort of nasty doing the manual thing, so what the heck, right?

If I have even a little bit more improvement through the week, I will tell everyone here as it is very encouraging to hear of someone else's success with this disease.  I am also going to ask the dr. to give me genuine clobetasol...and not the generic Taro.  I had no idea it was the generic I was given and I will see if the "real" thing works better.  I am still on every other day...although I did put clob. on 2 times for a couple of days when I saw how rapidly the area was closing up.  What a hateful disease this is.

Your post made me smile- Well done for talking to your daughter AND your husband! 

Taro clobetasol :- Ointment

Each gram contains clobetasol 17-propionate 0.5 mg (0.05%). Nonmedicinal ingredients: propylene glycol, sorbitan sesquioleate, and white petrolatum.Same  as the ointment I use - so it IS the real maccoy - just the manufacturors name up front, the manufacturer in the UK is Dermovate

I have told my sons about the condition- as men can gt it too - I dont go into graphic detail tho - told them to look it up on the web.

Now yu can send your husband to get different sizes if necessary.... and ones with a motor - that may stimulate the circulation and increase the effectiveness of the steroid...perhaps - you could ask the question next week!

 

hey wow that's great !  .....hubby on board....yeh...let him help you. He may even surprise you with some imagination!! Why not leave this thread open for him to read, with your consent, all he has to do is a bit of very gentle wiggling with a tiny probe to assist you. Oh hello hubby!! We're all rooting for you and your wife xxxxxxxxxxxxxxxxxx

It sounds like things are looking up Patricia.  There is indeed a difference between Clobs.  Forgot to mention that the other day.  (so sorry) And getting a good relationship with your doctor as well. So nice of her to go shopping for you.    

think that was her daughter hanny !! I read it as doctor initially too... but regretably they wouldn't go that far!!

anyway patricia ...what news....? we are all hanging on this saga and awaiting more inklings of your progress. its great what we can do thro colllective suggestions and a personal sense of control...so well done you.

also, if it helps, just think that your body is only trying to heal itself...thinking there is a gaping hole to be repaired...so the manipulating you are doing is great and if accompanied by soothing talk to your body....i'm thinking set up your bedroom like a kind of healing sanctuary with gentle mood music...have a hand mirror and a spot light to hand so you can see how things are going...but if he's up for it invite hubby to perform   'the operation'   ie: helping with the very gentle almost imperceptible  dilation.

hanny really knows what she's talking about as she has been through this.

how are you now?

hello to you...yes, I meant my daughter, but didn't take the time to spell it out, so my dtr. may have read as dr.   Thing is, I even hate to look at my bottom...I feel it has betrayed me and is off doing it's own thing while I am begging it to come back home and just be content to be what it was!  I would never let my husband see what it has become!  Anyway, as I said here in one of my very first letters, which may be long gone into forum space....I have been celibate for many years.  My husband and I do not even sleep in the same room (his idea...all of it)........he has not had an affair, he just isn't interested in sex.  He is a workaholic.  He is very good to me in all other ways that require no intimacy, he will do anything else for me.  So, I think I have an odd arrangement here, we are more like brother and sister and have been for a very long time.  So, I wouldn't ask my brother for any help in this area.

I do like your thoughts of being nicer to myself in my own mind and thoughts.  I am sure you are right, that my body is maybe trying to heal itself...I like that.  Now it doesn't feel as if my own body hates me and is trying to destroy my life!!

I even feel as if I have made a slight change in the rim of the tissue that is closing in.  I am using the spray baking soda every time I go to the loo, I mostly use emu oil, but am adding coconut oil more often again,  since it has more healing properties than emu oil.  I am still trying to dilate on my own, and yes, with the Bright Neon Pink device my daughter got for me at the mall!  I will keep trying to push the tissue back  as often as possible between now and Thursday when I see the specialist for the first time.  And I will tell all after the visit.  It is lovely to be so annonymous here as I could never say most of these things to anyone else.  I am grateful for this forum more than I can say.  It has helped me through a lot of scary (terrifying) moments.

I wish I could talk to my mother, since she has this condition, too, but she died several years ago and I wish she hadn't.  I don't think hers ever got to this point, but I don't know.  My mother was born in the 1920s and I guess this sort of condition was strictly hush hush.  She died of rectal cancer, but she had radiation all over the entire bottom area, so I still don't know if LS had anything to do with that.  so sad.

Anyway, my mother and I never had any discussions about really intimate things.  That's why I have tried to be so much more open (mostly) with my own daughters.  Even then, I am still a prude.  Well, I am not a prude, but my daughters would never have known that,  they probably still wonder how on earth they were born.  

I am doing my best to keep my mind off the upcoming dr. visit and what may be in my future.  But I am resigned.

I will be reading every letter on this forum from now until Thurs. when we leave for the 2 1/2 hr drive to the doctor....

 

well its tues today so just another couple of days to keep up the brilliant progress you are making. But you know it may turn out that you are the best remedial therapist in this situ ...why not show what you've been doing and ask that they continue your progress under a local anaesthetic?  Maybe take a photo now ...so you can see the improvement you create.  I am so glad you are being good to yourself and enjoying some relaxation....great plan!!

Hubby may have some sort of erectile issue that he doesn't want to talk about...so that suits you. But he might open up if you take a risk now and ask for his help. There is then no spotlight on him...he can help you unconditionally ...and you never know ...he might talk about what's happening with him in due course. Why not give him the chance to support you in a brotherly way?  I have a male best friend, also like a brother, I could ask him for that sort of help as its medical. He loves squeezing spots and so on. You never know how hubby may react but lets face it he has been there before!!!!!!!!!!  ok you insist you don't feel you could ask him....but lets imagine that if you could get the 'script' right he might say 'yes...he'd like to help' . He already clearly indicated he get a dilator for you. Be fair to him...maybe give him a chance....don't imprison him in the limits to your imagination...as long as you can shoulder a 'no'  and be a big person ...its surely worth the risk?? Do you think you could create the space whereby you ask for his help ...but let him say 'no' without you being too devastated?  That is what a big person does. Which is to say they aren't over sensitive about themselves and have others to turn to (in this instance you have us...!!) to talk about any feeling of rejection in order to get over it. You can explain in terms of it being an emergency and that you feel he could really help til you get to see the med staff...don't forget...re med staff... to insist on a dilation, as hanny points out. Your written consent should be sought so you can make your wishes known very clearly....for the avoidance of doubt. Am also thinking you could ask if staff have no experience of this please would they speak to doc tors elsewhere in the country who do? But that also you just want them to undertake a progression of what you have started. That way not only will you know what to expect but you'll be more in control and as it were the director of treatment.

So a script....have a little practice...try out for size what you might possibly say to hubby if you were to say (which is not to say that you necessarily will...!!  ...so no pressure on you this is just a little experiment and i'm asking you to indulge me by being so kind as to try it !!)  what would you say ...if you were to say it...which you might not necessarily...!! if you were to ask hubby for his help? Just run it past us. A short request. How would it sound? Can you write it out on here? as you say no-one will know.

maybe imagine if you were giving birth...no-one else could get to you... he could help to deliver you. He could do it!! And he'd be so proud. Maybe we emasculate our men with all these intervening services? Give him credit now...go on try asking him in a practice script on here. I may be up for a big push back from you but i'm coming forward with a strong wish to help you and to see husband and wife united xxxxxxxxxx

wow!!  You must be a motivational speaker in your "other" life!!   I will think about all you wrote.  In a way, I am as un-intimate as he is.  Once it was sure that this is the way he wants us to function, I finally (after years of trying to change his mind)....gave in, accepted it, and just went on as room mates.

He does have ED...has had for a long time, it started when he was what I thought was young...late 40's....so he just wasn't interested in starting anything that he thought he could not finish.  I wanted him to go to a Dr., and he was  tested for testosterone, etc., got a few samples of viagra...maybe tried taking it once, but just isn't interested in that part of life.  He never even initiates hand holding for hugging...it is very odd.

He had an abusive childhood, so I know that has something to do with his refusal of intimacy or closeness.

He isn't embarassed to buy anything....he has bought even tampax type things for me in the past.  That is not a problem for him.  But to be actually close to me or even partly intimate, it will not happen.

You mention childbirth...in fact, I had my last two children here, in my house.  I didn't have a midwife or anyone else, just my husband with me. He was very supportive and yes, he caught the baby each time.  (I had had a dr. all through pregnancy, and my dr. said if I ran into any trouble he would help)..so it's not as if I neglected all the pregnancy check-ups, etc.  I did all that.  But the dr. knew I was going to have a home birth, both times.  That was child #3 and #4.   So my husband was OK with that, but that was a long time ago, and it is since then that he has pulled away totally.  So, sad to say, for me, it would almost be like asking some guy on the street if he would kindly help me do this sort of thing to my bottom! 

But I will read and re-read your words and I will consider just what would happen.

 

GOOD LUCK  for tomo patricia....thinking of you xx

Have you been prescribed a cream (clob) or an ointment.  This may seem a small point, but I found the cream completely useless and my new consultant agrees that a cream on any area which sweats (armpits, groin, under breasts) will not penetrate.  You need to go back and get the ointment and take a warm (not hot) bath dry yourself (don't rub, even use a hairdryer) and then apply the ointment (clob or Dermovate) rubbing it in for a good minute and a half.  Twice a day for a while.  However, above all you have to calm down about it and just do this - stop inspecting it, measuring things and worrying about it.  Why should it dominate your life?  It only makes things worse.  I know it's easy to say, but I have been through this and the more I am forced to think about it the worse it gets - whatever takes your mind off it - do more of that!

Sorry to seem dogmatic and I hope this helps.