Feeling Hopeless

Thanks Dunkin girl !  I just found out about LS  2 weeks ago so this is all new to me. I also wondered how the dr made such a quick diagnosis without a biopsy. The thought of having one is terrifying but at least I’d know for sure. Was it very painful? Be honest!  I have endometrial biopsies and they were no picnic!  I’ve been trying to find a vulvar specialist - not easy.  a dermatologist that specializes in vulvar conditions would be very helpful as well.  On top of having vaginal burning, this is not fun. The old expression comes to mind  - the golden years are now rusty years!

Ladies. have any one of you tried Borax? it's called 20 mule team borax in the laundry isle.

A lot of us are using it maybe twice a day. In a spray bottle, easy to spray on the are. Used it for about

2 years or so, now haven't used it for a week & still ok. It will come back, I know. But no steroid, used clod at first. Then stopped it in favor of borax, glad I did. Google An Experiment with Borax.

Helen  Health Canada issued a statement last year that  Borax is not safe to use.  If it works for you and you had no reaction to it then you’re okay with it 

Hi Arlee,

i cant tell you if the biopsy was painful as it was during surgery for prolapsed bladder so I was out under anesthesia but I did have biopsy several years before for what turned out to be polyps on vulva and the doc that did that was not very gentle. I know the thought of biopsy is scary but it is the only true way to be sure it is LS. I do not have any burning very often but if I do I use a little desitin cream and that helps. I am lucky as I do not have the terrible itching and burning that a lot of the ladies do. I am thankful that I found the doc that I did. I agree with the rusty years! Good luck and let us know how you make out.

Hello Helen

I'm in Canada too and am seeing a gyno for a biopsy tomorrow. I was diagnosed with LS in July. Feeling pretty nervous about getting the biopsy. I use coconut oil and just recently have started emu oil for lubrication and Elocom 0.1% ointment once a week. It sounds like you have a good gyno. Where is there a vulval clinic? I have not heard of one in my area. I'm not symptom free but there has been some improvement with the treatments since July. I have not tried the borax yet. 

Hi fellow Canadian. I’m curious - if you were diagnosed in July why are you having biopsy tomorrow?  A vulvar clinic sounds great. Unfortunately I don’t know of any in my city. Unfortunately I don’t have enough confidence in my urogyno. I see her next week - one last chance. If not I will look for a dermotologist who specializes in vulvar conditions. I may even go to Toronto  have to get to the bottom of this and move forward. 

I don’t find the clob working that well. I don’t have any white patches  doctor didn’t explain anything. And I was taken aback and didn’t ask. I will next week!

She was interested in getting me to go for a trial for PCP it’s something to do with drawing your blood and reinjecting it into the vagina. Supposed to help LS.  I didn’t go 

Hi. Did you have your biopsy?  Was it painful?  Hope all went well. 

Hi

I just go to a gynecologist, she did a biopsy, just feel a little pinch, no big deal. have stopped borax ,just using coconut oil for a few weeks now. Things so far are ok. But borax really helped. Also Ketogenic diet I think has something to do with helping. No wheat, grains, things like breads, other baking, so no flour except coconut & almond flours. Important, no SUGAR , sweets of any kind. Use stevia. Lots of info on Keto diet websites. For me, I think it's really helping to stop all simple carbs. Good luck, hang in there.

Interesting to see what you say about Borax. I was a bit concerned about using it but went ahead last week and bought some. I have mixed 1/8 tsp of Borax with a cup of water and have started to use it as a spray. I have experienced a bit of a "dryness" so I think I used a bit too much. I will also start to use some in my bath water and have seen somewhere that it should be a tablespoon in a shallow bath.

I used a steroid cream often over the past 30 years and my gynie didn't tell me not to use it so often which has resulted in my skin being very thin. A year ago I stopped using it and as a result I have started to fuse. I am back using it again but just once a week. For the past couple of months I have used a mixture of 4 tablespoons of Organic Castor oil, 2 DROPs of Lavender Essence Oil and 1 DROP of Lemon Grass Oil. I made sure that I didn't exceed the drops and I use a small dropper. This has been life changing for me as I no longer have that dreadful itch. I have a lesion that hasn't been healing and a couple of weeks ago my gynie told me to use some estrogen cream and it seems to be getting better. I am going to see the gynie today and if that is the case then I won't have to have an operation next week to cut the lesion out. I have never had a biopsy because all the gynies I have seen over the years, and a dermatologist, said there is no doubt that I have LS. Also about two months ago my urethra was looking purple and now it is a normal colour and I am putting this down to the castor oil mixture. I have also bought some Australian Dream Cream on Rosie's advice but haven't had the need to use it yet as my castor oil mixture is working for me. If the ladies on this forum can find something that is right for them, and there are a lot of options to try, then this condition is manageable.

Jan

I hope by now you have had your results from the biopsy.  After almost 5 years of living with LS, I am convinced that you just have to use the Clobetasol prescribed to start to conquer this awful affliction. Year of medical research have dictated this prescription.  Aside that that you need to keep the afflicted area lubricated and that is where coconut oil, emu oil, etc play their part, and baking soda and borax aid by soothing the itch and burning.  Many people are afraid to follow the Clobetasol routine as they fear it will thin the skin, dry, etc.  But I really have faith in what the med people have found to be true:  i.e. the clobetasol is the only thing that actually keeps the LS under control.  Once your symptoms subside you may find you can use it less or not at all and then you an just focus on non prescriptions and alternative medications.

 

Arlee I had to wait 4 months for the gyno appointment. The July diagnosis was made by an NP. Last week the gyno did a visual exam and said after 4 months of treatment I looked very healthy and she didn't want to put me through a biopsy. Relief! but she gave me zero information on LS. I've learned more just by researching myself and through this forum. The gyno prescribed a lower dose compounded hydrocortisone cream and basically said to come back if I have a flareup. The two lesions I have are still present. Using the new prescription cream daily has caused more irritation so I'm going to try every other day for now. I wished I would have asked more questions. My anal area is always sore. I find the sitz bath very helpful. 

Hi Helen

The gyno decided not to do a biopsy and said I looked very healthy "down there". She also didn't want me to continue using the strong steroid and prescribed a weaker hydrocortisone cream daily for a month then every other day for a month. This has caused some new irritation. I agree with you on the steroid use. It really helped to stabilize the symptoms as I was a mess in July and couldn't wear pants etc.  I haven't changed my diet and there have been other suggestions on this forum about eliminating sugar. That would be a tough one for me but I think I may have to try it.

Good advice Helen but would you say to use the clob only once or twice a week at the most?

The lesion I have had for nearly a year has cleared up after using estrogen cream for 3 weeks. I was going to have it cut out but luckily it healed!!!

Jan

I was finally diagnosed 4 months ago, but had the itching, burning, cracked tissue with bleeding, severe pain, irritation around anus for probably 5 years.  It got bad after age 65.  I had surgical menopause at 40 when I had a hyster/BSO, so I've been on Estrogen of some variety since then.  I just thought it was changes of aging.  I finally went to the gynie when I couldn't take the pain any longer.   Sex got really painful after 66, but we both thought it was just changes of aging.   It took the doc about 15 seconds to diagnose LS, because of all the fusing.  The key word for this disorder is "manageable".   It is manageable.  The Clob just keeps inflammation down, to prevent further fusing.   Personally, I have found Australian Dream cream really helps the inflammation, and also soothes.  The irritation around my anus has completely cleared up.  What a relief!  I felt like a kid with diaper rash.   I still use a tiny bit of Clob one a week, but I follow with the Australian Dream.  I think the AD helps the Clob to absorb better.   I wear one of those thin urinary incontinence pads because I spread the Australian Dream on generously, twice a day.   For me, this works.   Everyone finds their own remedies.  You can find so many remedy suggestions here on this blog.  I wish you the very best.  Rosie  

Hi Rosie

If my Organic Castor Oil mixture stops working for me then I have the Australian Dream Cream ready and waiting!! I too started to use the incontinence pads but found that they don't stick to your underwear properly and curl up a bit and irritate an already irritated area! So my underwear is getting a bit stained from the creams and oils but that's just too bad. As long as I know my underwear is clean that's all that matters. I sometimes change my underwear twice or three times a day. I am using a Borax spray every time I go to the loo now (if I am not out and about) and it makes me feel cleaner. Unfortunately sex just didn't happen for me anymore once I turned 57 (10 years ago) as my skin was so thin that I just used to tear and it was too painful. I should be surprised that I am still married!

Take care

Jan

Hello. I did not realize I had this until it showed up on my skin and was biopsies. Now it is in my vaginal anal area and it is quite uncomfortable.  The gynecologist did order the Clob eststol and I used it and it seemed to be fine. I stopped using it and the burning came back. I was reading about the borax and wondered. I am also curious about estrogen cream. Any thoughts? Thank you 

Hi Nancy

i was in agony by the time I got a valid diagnosis by gyne.  I was then told to apply the Clobetasol daily until the extreme itch and soreness subsided- that was for two weeks.  After that and ever since (has been 3 years now) I am to apply it twice a week -so I do it every 4th day.  If  experience a flare up, I am to go to 3 times per week.  For the rest of my successful routine, I rinse daily with water and either a pinch of baking soda or Borax.  Then moisturize perineal area With coconut milk.  Works for me.  I have not changed my diet but I eat very little sugary things and I love veggies, milk and meat, coffee and wine on weekends! Wishing you success.

 

Also forgot to say that estrogen cream is not for me.  Made me feel very weird and may have caused the facial numbness that I experienced briefly after applying it twice.