What is a "flare up" for you?

Hi Biscuit -

Yea, sometimes I question everything and think they are way off and I do not have LS. I just don't understand a lot of it and felt wrote off after she told me that might be what it is. She said she can't be certain bc I have no visible signs, so hopefully the biopsy provides some clarity. I'm so beyond frustrated with the "care" I've gotten over the last two years. I just can't understand how nothing helps! Is the clob supposed to relieve the itching? That's my only symptom and what I've been trying to treat for 2 years. If they are still thinking this is LS, I am going to ask for that medication when I go in. I'm not sure why I don't keep getting the first line of treatment when they throw out some new diagnosis.

Thank you so much - you all have been a better resource than my idiot doctors.

I so know about idiot doctors. My current one is No 6. Different diagnoses from different docs does not help the condition or one's state of mind. I do know that trial and error for each person is a necessity. What works for me or you may be different. Years ago, before the late 90s, the FDA did not include women in clinical trials for drugs being tested before coming to market. It was Donna Shalala in the CLinton Admin who finally convinced the drug co to put more women into clinical trials. Pregnancy and the risks thereunto were the main reason women were left out. Most of the people on whom drugs were tested were white, male, 30 yrs old and 150lbs. That standard applies to almost nobody. Trouble was, women took most of the drugs. So here was a process of drug approval where we were not even in the room. Furthermore, the FDA itself does NOT test the drugs but rather only reviews the drug company's reports of THEIR own tests. Huge conflict of interest but that's the way it's done here. So, if something does not work the way it is supposed to, that could be why. So if you're 2 years into this and have no visible signs and feel that you're getting the run around from your dr. I would hang on through the biopsy and then when I got the results I'd say so what are you gonna do about it? If no aggressive treatment plan is offered (and even if it is) I would begin my own treatment plan with suggestions here or found through additional searching. You are going to be your own best advocate. Two years is a heck of a long time to go on. What has been done in these past months? Only the mometasone?

Hi!

I believe I shared my story with you on a different thread so this might sound a little familiar, but here it is 😃

I'm 32 right now, but in Aug 2017 I had unprotected sex with a new partner after breaking up with my boyfriend. I got BV (which I had previously and it went away with Flagyl easily) - This time, I took the meds for that which then gave me a yeast infection - also normal due to the antibiotics. Then I kinda had a cycle of BV/Yeast for a month or two. Then basically I stopped testing for both BUT the symptoms remained. From there, my doctors gave me a variety of antibiotics (probably took around 7-8 different ones in ONE YEAR) - nothing seemed to help for any long periods of time. I've been to my GP many times, 2 gynos, one gyno specialist, a dermatologist, a GI doctor (was trying to think outside the box), and allergist. Everyone says my vagina/vulva looks "perfect" and yet I still have pretty constant itch. I've tried most creams on the block too, and nothing provides long term relief. So, then in April I went to the gyno specialist I mentioned above, and she suggested it might be LS because we've "ruled everything else out". She said I have no visible signs, but that my itching follows the pattern of LS. She gave me the momestone and basically told me to use it as needed - nothing still seemed to help and I am just confused on even when to use it and what it helps with. So, I reached out and asked if I can have the biopsy done in Aug during our follow up. I had to stop using the momestone a month ahead of my biopsy so I'm using aquaphor, which kinda seems to help very short term. Funny thing is, I was in Croatia for 2 weeks and my symptoms were little to none. Then came back with a vengence when I got home. I adjusted a lot about a year ago, meaning moving to cotton only underwear, no thongs, no soap, things to eliminate allergies, but maybe it is something in my home.

Hence my insane confusion - I'm having the biopsy done on Aug 7 😦

I'm going to my "Secondary" Gyno tomorrow (she's out of the UCLA network in which all those other doctors can communicate). I'm going to tell her of this "new" LS diagnosis and see what she thinks.

VERY Interesting. You went to Croatia and had no problems. Come back here and bam.... What does your instinct tell you? Water? You know flouridated water can cause a lot of things.

yea, I'm going to get us a new water filter this week and try that out. Someone else recommended a different brand than Brita that is supposed to be better for "us". I'm now noticing a BV smell as well, so I'm glad im seeing someone tomorrow to get a look when the itching is flared up and this smell is here.

my gut tells me this is somehow still a BV/yeast cycle, but i guess if all my tests keep coming back negative I have to rule that out?

The circumstances lf my case are so confusing because BV and yeast is what started this all. Seems strange that LS would develop at the same time and confuse everything. I'll update after mt appointment tomorrow!

hannah, re water filters I think it might be worthwhile to buy shower filters for bathing as well. Many of us have water with a lot of chlorine in it. I go to another state in winter and the water fairly reeks of it.

Can you share which type of drinking water filter was recommended to you? I am currently using britta and don't think it's very effective.

Thanks,

B.

Hi Beverly -

Zerowater is what was recommended - she said Britta's were pretty much awful and that's what i have now 😕

I was thinking more about it yesterday, and this all started 2 months after moving into my current apartment, so maybe water is something I should try to change.

I also just got back from a gyno appointment with my "secondary" doctor and she straight up said "you do not have LS" (contrary to what the "Specialist" threw out as an option). I'm feeling a bit relieved right now, but not 100% convinced as many on here expressed itching symptoms with no visible signs. She said there wouldn't even be an area to biopsy.

I have two more appointments in the coming weeks for other opinions and my follow up with the specialist who initially brought this up.

Britta filters are reported to leave in a lot of solids compared to Zero Water or Berkey. Berkey is one of two gold standard water filtration systems, but pricey. Am trying to think where I found the report but it listed actual dissolved solids of all the various filters. Maybe Consumer Reports.

I got the ZeroWater filter last night - it's kinda fun that it comes with a little science experiment to test your tap water, then we tested our Britta, then the ZeroWater and it works! Tastes much cleaner now too, my roommates and I were pretty excited about it! IDK if it will have any affect, but it's better for us overall!

Great! It always helps to start with better water. Our bodies are 3/4ths water, so they say. Mine is probably at least half beer. (kidding). How are you doing today?

Hi!

Psychically I'm feeling really good today, no itching - which is great... BUT the mental affect is almost even worse now that my secondary Gyno said i do NOT have LS. Last night I totally spiraled and couldn't sleep, almost obsessively looking at my anatomy. (actually 100% obsessively, I think i got up from bed 6 times to go look again) I would convince myself it was normal, go lay down and my brain would spin and be like no, it didn't look like that, then I'd go look again, and just kept doing that over and over 😦

I really hadn't touched myself/masturbated in a long time bc I've just felt gross and not had a sex drive, so last night I kept convincing myself my clitoral hood felt and looked different, but I think I'm just freaking myself out. I literally saw a doctor Wed who said she saw no signs. I'm going to another gyno on Tuesday who supposedly has advanced knowledge with LS, so I'm curious what he thinks! Never seen him before, but a friend recommend I go see him. I'm now seeing 4 different gynos which is way overboard, but with the possible LS diagnosis I wanted as many eyes on it as possible!

Additional question for anyone who has the major itching symptom - does it only occur in a specific area when it "flares up"? For me, it shifts quickly... first it will be my clit area, then 10 min later will be just on the left close to my vaginal opening, then 10 min later its on the top right.. its just weird! If LS itching is only associated with one area and it being patchy white, then I'm leaning towards this not being LS.

Sounds like a nerve is misfiring Don't feel bad about 4 gynos. I've been to 6 and still have no definitive answers. Am convinced they only want people they can cure quickly with a costly procedure or keep them coming back for more appts and meds. When the diagnostics get tough, they go away. That's why this forum has been so helpful. We can all compare. Let us know what next doc says re the LS/no LS.

best wishes, biscuit

You say you went to Croatia and were a lot better - then came back and it hit. Do you live in the US?Maybe it's a gluten sensitivity or allergy...?? I've heard lots of people with gluten sensitivity/allergies/celiac disease - seem to be FINE when they eat gluten in Europe... but not when they come back home to the states. My husband has Celiac and when we went on a trip to Italy/Spain/Croatia (before he was diagnosed with celiac) - he was fine eating gluten there.... but as soon as we got back home - he was sick sick sick.

Just thought I'd throw it out there.

hi buiscuit, Im starting to think it might be a nerve issue too. they have recommended amitriptyline which helps with nerve pain. Gonna ask for a script to try that.

I added photos below on the main thread of this post if anyone can provide their opinion

you all have been life savers the last few months

HI Debbz. that is very interesting and could be the case! I really need to do better at fixing my diet as i know its not helping and is most likely contributing to my symptoms. I've struggled with an eating disorder most of my life, so its been the hardest part for me to "test" and adjust lifestyle-wise while trying to decrease my symptoms. I've nevwr been identified as gulten or dairy intolerant officially, but i definitelty know neither makes me feel great. I've inquired with a nutrionist recently and am going to work on that next after i get through these two gyno appointments the next two weeks

That's a very interesting theory!

Wheat in Croatia is not likely to be genetically modified as it is in the US. Wondering if a genetically modified organism is responsible? Try eliminating ALL GMO products: soy, wheat (unless it's clear there's no GMO) and corn. See what h appens.

That's exactly what I was thinking... it could be the genetically modified wheat here in the US that is making people sick. It's just so weird to me - that soooo many people are getting Auto-immune diseases here in the US, but you don't hear much about it happening in Europe. Hmmmmm......

But who has actual figures from either place? Would like to know them.

Am guessing many have LS and don't even know it. I thought it was the AV I knew I had and was very surprised, to say the least, when diagnosed.