22 and terrified of diagnosis

Women's health
1

My backstory:

Two years ago I got a minor tear at the 6 o'clock position from sex. It was a penetrative injury and I remember exactly how it happened. Over the past two years I've seen and reseen the gyno as it keeps opening. The tear is small, like a papercut and while I've asked for surgery, they insist on the estrogen cream. While estrace cream has helped, the tear continues to open. 

For the past 6 months I've also had consistent itching on my vulva (on the labia minora). I was once diagnosed with a yeast infection, and another time a small tear developed where the skin itched. 

Now: 

After having my tear re-open recently, and persistant itching, I went to the gyno again. This time, she noticed some whitening patches of the skin and did a biopsy that will be tested for a range of skin disorders, including Lichens Sclerosus. Note: the tear may be a totally seperate issue, or related, it's unclear.  

After spending all night Googling and examing myself, I am fairly certain it's Lichens Sclerosus and I am terrified. I do have a very small fused area on my labia minora (something that the gyno didn't even mention). And the white patches with surrounding red areas is also very familiar to what I have. The small fused area is also where I developed the tear, and have been using estrace and vaseline on it. 

My sexuallity is so important to me. I'm 22. I'm only beginning to discover the joys of sex and I'm terrified of some of the more serious fusing, atrophy, tearing, etc. that will destroy my vagina. 

I will have a diagnosis my Friday and in the meantime have been perscribed Clob .05%. However, I'm scared to use it especially as I am still healing from the biopsy. I haven't been able to focus at work, sleep, or eat. I'm petrified. 

I need some hope that it's possible to treat this disease and prevent the more horrific side effects if it's caught early. Reading through this forum, I've only found stories of obliterated vaginas, leaving me in tears and scared. 

2

You are too young to have to face this...so sorry for that.  Much will depend on how you decide to treat the disease.  Myself...I am very concerned that birth control and estrogen creams brought this disease on...but at your age if not ready to start a family the pill is the easiest form and most preventative for pregnancy. The estrogen comes from pregnant mare's urine...not a human source...and already estrogen use has been linked to heart disease and cancer in women...so I can't help but be suspicious that this could be an underlying cause for this disease as it's becoming more and more common...and affecting young women more and more. There are young women on these forums that have had families, but comfortable sex is an issue with many. Treatment can help avoid the fusing and atrophy...regardless if you opt for the steroids or the more holistic route. Once you have the disease under control...and it is likely from your description that you are unfortunate in that regard you may want to research a somewhat recent laser treatment that has helped women with LS restore more normal sexual relations. It is called the Mona Lisa Touch.  Some insurances do not cover it yet...but they do have payment plans and it is 3 treatments and is done about once per year from what I understand. There are some women reporting on the treatment on here...so you can look that up to follow on how they are doing.  Here are a few natural tips that several are doing on here now.  It is important to keep clean.  Cetaphil cleanser is very gentle and non-irritating...use it for the private area. Get a small spray bottle...about 8 oz. in size.  Use one of these for cleansing after each bathroom break.  100% witch hazel dilluted with about 15% sterile water or 2 pinches of bicarbonate of soda in 8 oz. of water.  Spray to rinse yourself and pat dry.  Then for moisturizing and for the itch use a dab of 97% or higher pure aloe vera gel.  Really helps.  When you have a split use 20% or higher manuka honey at bedtime. Take a small amount out with a cotton swab and rub it in and wear a pair of cotton panties to bed. You will typically heal from the split in a couple of days.  Manuka honey is known in the medical field as a great healing salve that will work better than some antibiotic ointments...and it's natural.  (and if it doesn't work for you...you can always have it on your morning toast).  Shop around for the honey...it can be expensive, but can be found for a fairly decent price if you search.  Also, the pure witch hazel can be found on amazon if your local health food store does not carry it.  Some also use either emu oil or coconut oil (organic) for moisturizing.  The women on here are very supportive and will try their best to make you feel more comfortable on your journey with this affliction.  It will also help to have an understanding partner. Being so young...the maturity level isn't there for some young men yet ...but there a some gems out there.  So don't lose hope. As this disease gets more recognition...there will be more advances in treatment and more understanding of the cause. And with women being more open about it with each other and those in the medical profession...answers will eventually come about.  Hugs to you.  Rene'e

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Oh...and to be a bit  more clear...the witch hazel you find in the stores is dilluted with alcohol.  You have a split...so that will burn.  So you want to be certain you get the pure form.  Also, research each recommended treatment so that you understand what you are using and it's possible side effects.  You are young...so whatever method you choose is going to be for the long run...so keep yourself well informed.

4

Thank you so uch Rene'e. 

I'm actually not on birth control, I only use condoms. And the first split in the spot where I now have some fusing occured before I began a strict regimine of estrogren. 

While I'm hoping for the best (a negative diagnosis) I'm preparing for the worst. All your sugggestions for how to sooth the skin are helpful and I will research them. For now, my condition, whatever it is, seems very minor but I know it can get worse so I want to prepare now. 

I'm hopeful about the Mona Lisa Touch treatment you mentioned, it's good to know science and treatment is advancing and there are options for care. 

Does the pain from sex happen because of tearing of the white patches, or the shrinking of the vaginal opening, or both? 

5

The pain is a combination of things...as you mentioned. There can be some reversal of damage caused by this disease if it is caught and treated early. The atrophy is not reversible...but some of the other damage...like what some call buried treasure when the clitoris disappears or begins to disappear can often be reversed.  So just take good care of yourself...keep an eye on things and if one thing is working well for you...then try another...as not all treatments work for all women. So there is a bit of trial and error involved.

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I meant if one thing is NOT working for you...then try another until you find the combination that keeps you most comfortable and hopefully keeps the disease at bay.

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Hi Jess

I used to get a tiny tear after sex and think no more about it.  I now suspect this was an early symptom of LS (I too used to describe it as like a paper cut).  I am guessing you have LS but, hopefully, you have caught it early and it should respond very well to clob which you should use asap.  LS is with you for life but you will learn to manage it.  So very sorry it should happen to someone as young as you but, hopefully, with early treatment, it won't progress.  Good luck.

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Jess

You are so young for this. I am in y 60's and I had never heard of anything like it. One of those things that never come to the public because all such a taboo subject. I too am terrified but much older than you. All on this site will reassure you and help all the way. The support is incredible. My thoughts are always with you and wish you good health and heres to a cure very soon. Take care and try not to worry too much. That is the advise I have been given by all these lovely people. Keep us all informed of your path and good luck .

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Although it's wretched to have this so young, the other side of that is that it can be controlled and by catching it early you have every chance of avoiding all the worst aspects.  When you are calmer watch the presentation by Dr Goldstein on this site and read all the positive stuff.  Be determined that you'll manage it so well that none of the horror story stuff will happen.  Take care sweetheart.

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Sorry to hear this is happening to you Jess. My girlfriend who does not have LS was constantly tearing as well. She had an op which fixed it up and has never had a problem since.  The only good thing about your diagnosis is that at least you will know what you are dealing with and start early with putting into place procedures to lessen your discomfit.  My dermatologist put me onto Sudacrem (same thing you would use on babies) which works a treat when I'm stinging. I have started alternating salt spray and then bi carb when that runs out. It seems to be working okay.

let us know how you get on x

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Hi Jess! You really must go to the facebook group for the best info. The Facebook group (totally a closed and confidential group) is a WEALTH if knowledge and support. There are pinned documents, videos and all the latest research and over a thousand people like you who post continually throughout the day. Good luck. It is called Lichen Sclerosus - LS Support Group. It's okay over here but pretty hit or miss for replies to questions. 

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Jess, Sorry that you have had to join us.  It does sound like Lichen Sclerosus, and so  it's probably wise to abstain from sex for a while until you are completely healed. If you read Dr Goldsteins Webinar posted in the new users section at the top of the page, that should be helpful, and try to read some of the back posts too, as there is a lot of information on this site. 

Some of the symptoms of LS are unpleasant (to say the least) but it's worth remembering that you may not necessarily have all of them, everyone that posts on this site has different symptoms, however, one of  the symptoms that many tend to have is fusing, and that in my book is the worse, the more serious, and therefore you need to keep a careful eye on your Vjay, regularly using a magnified mirror to watch for any changes.   I really believe that a strict routine of spraying after using the bathroom, patting dry, and lubricating stops any fusion from occurring, this is what I have found to be true, as I had fusing last year, before I knew any better, and now after carefully maintaining this  routine my Vjay looks good, and so I hope that gives you some hope!!   It's extremely important that you do  your own research, become informed, and through your own research you will know to ask the right questions when you do speak with your specialist.  Many doctors are clueless,  and even some specialists don't appear to do any research on Lichen Sclerosus, and  research is essential to the evolution of best practice in patient care, and so who you see is very important, a Vulva clinic is often the best place to try.

 Remember It is alarming at first, but once you are aware of how to manage this condition it will become much easier.  One of the biggest and fastest triggers is sugar, it is best to avoid it, many women report that one relapse  can bring on some really unpleasant symptoms very very quickly.   But for some women it is not enough, and  they often find that going Gluten free helps, or even in some cases, Dairy free.

Try not to worry to much as stress can make thing worse.

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Jess, I was 22 when I started tearing there. I was 61 when LS was finally recognized by a gynecologist. My main advice is don't have painful sex and just grin and bear it. That will be your best way of preventing the scarring that becomes disfigurement. Use your prescription, but look around here and try some of the extra things we do. Most of us agree LS is made worse by stress – freaking out about this diagnosis is classic. Stop looking at horror photos online. Those are mostly badly neglected cases.

I had lots of great sex and two kids in my thirties with natural childbirth. You're very lucky to have had a diagnosis this early.

I think yeast and LS have a viciously cyclic relationship. I keep a tube of leftover 7-day Canesten cream (never use the faster stuff, it burns too much) and if I even suspect the yeast is beginning I use a bit of the cream topically and inside. A pharmacist once told me that yeast is like dandelions. The cream lops the tops off, but the roots are still there. He said three things together get it going: friction (sex), sugar and stress. For this reason I keep my sugar consumption very low.

Many of us have been using organic food grade coconut oil to moisturize and act as a barrier to urine. A few women developed a sensitivity to it after using it for a long time. This warns us to mix things up a bit. I bought a bottle of jojoba oil at the health food store and use an eyedropper to put a bit on my finger and rub it in. I followed someone's advice on here and also bought (very expensive) 100% frankincense essential oil and I put three drops on half a dropper bottle of jojoba. There's no telling which of the things we do are what's working, but my perineum (6 o'clock) is in the best shape in ages.

Stick around. It's hard to find people in our lives who want to hear the gory details about our undercarriages.

14

Thank you, 

I'm starting to feel a little less scared and stressed reading through all this. I've also joined a group on Facebook that provides lots of good advice and makes me hopeful. 

15

I joined and feel a bit better! There's a lot of great info and advice in terms of medication. More hopeful today smile 

16

Thank you! I haven't had pain during sex yet (with exception of the tear re-opening) and will monitor any pain I have from here on out. 

 

17

I have been perscribed Clob without a definitive diagnosis. 

I think I have a couple white patches, but they're very minor. I'm worried of using the Clob on "healthy" skin. Any advice? 

My phramasist called me to make sure I'm careful with the cream, which scares me a bit but I know it's a common perscription for LS. 

Also, I have a very large purple patch from after my biopsy where they sprayed some solution whiched burned my skin just before injecting me with a local anesthetic. I'm assuming the dark purple is from the procedure? 

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You should get the dark patch checked out with your GP/dermatologist/gynae or whoever is your preference.  Do not assume things with this condition.  Only treat active areas of your ls.  You may benefit from listening to Dr. Goldstein's webinair, (link to this found in second pinned post of this site entitled 'New to Ls start here'.

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You'll find Dr. Goldstein says clobetasol ointment is preferable to cream. Som women here react to the extra ingredients in the white cream. I read some info that said LS patients tend to use too little clob, so most of us err on the side of under-treating. Use it on the affected areas and once you're graduated down to twice a week and things are settled, still use it on the same areas.

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My vulva specialist has a step down regimen for LS.  He starts with Clob but it is so strong and can tend to weaken/thin the skin so after some weeks he switches to Triamcinolon ointment 0.1%. After about 4-6 months on this you go on maintenance of a 2% hydrocortisone cream.  I don't know if we're supposed to give out actual doc's names, but he was at Mayo's in AZ and is now in private practice in the Phoenix metro area.  Known as a national expert in all things vulva and is helping me with chronic (sp?) irritation "down there" as well as LS. Most ob/gyns only know about Clob for LS.  More need to research this disease to help their desperate patients.  Good luck to you and all of us.