What possible past history caused LS to start?

Women's health
1

I am wondering how many of us have a clue as to why we got LS in the first place. The medical profession don't know what causes it, but could we help find it? 

When I was 60, I had a smear test showing slight abnormality (ironically it would have been my last routine one) and HPV presence. Gynae advised a 'loop' procedure to cut away the affected part of my cervix. I was also told at the time that my cervix had atrophied and was quite closed. About 2 weeks after this procedure I started to itch, was examined again but nothing untoward was found. 4 years later with constant itching/irritation I finally got a diagnosis of LS but only after fusing had occurred. During that 4 years I had a hysteroscopy which was clear and also another smear which showed no HPV. All through this time I was dealing with unwell parents and 2 years ago was particularly stressful for me as I was caring for my mother. 

Also, in my teens and early 20s I had recurring thrush and one bout of vaginal warts.

I now think the invasion of the loop surgery and then following examinations triggered LS which may well have been lying in wait anyway. And possibly more of a trigger than surgery,  the stress in 2016 which I believe caused my fusing to increase.

HPV doesn't appear to be part of the cause of LS and as I understand it, lives in most of us and normally our immune system deals with it. If your immune system is at a weak point it can affect you and cause VIN or VAIN.

If LS is an auto-immune disease and you have had a diagnosis of HPV in the past, might this mean that your immune system went  into overdrive to counter the HPV and then continued to attack that area of your body? My point being if you have a diagnosis of HPV, perhaps doctors should be looking at ways of improving your immune system at that point.

Any thoughts ladies? I am interested to hear what others think 'caused' their LS to start if you have any idea at all? 

2

I have also wondered why we have this. This is a great forum to bounce around ideas. I do not have the same history as you though. I did have bouts of eczema on my hands after I had my 1 child. Though I attribute that to washing diapers and Dawn dish soap which strips all oils out of your skin. I think we all should through out ideas as maybe there is one common denominator? I grew up by the ocean and went swimming almost every day in it, only to find out in my 50's that it was a super fun site. I wonder about that sometimes. Though my twin 5 yr old granddaughters have never swam there and they have LS too. They had eczema too when they were babies. Anybody else have any ideas? Thanks for starting this conversation!!

3

I started getting "chronic yeast" at 24 every single month for YEARS. I never had white patches. Maybe skin irritation for so long caused mine. I never have been diagnosed with hpv or any std. One long time boyfriend did cheat on me with a girl that had cervical cancer, but I have never tested positive for amything. My recurrent "yeast" began about 2.5 years after we split.

I really feel failed by the medical community. I saw at least three doctors about recurrent yeast but after I got the same diagnosis at all three I gave up and just started using Monistat every month. It's like they made me believe some people were just prone to yeast and it wasn't that big of a deal and so I quit paying all that money to go to them when I could just pay $15 for some Monistat.

Now I'm 37 with destruction of labia minora and very small clitoral hood. My parts do not seem to fuse in any way they disappear!

I have no known family history of this. Had 3 sexual relationships my entire life. 1 cheater guy, 1 uncircumsised guy, and my husband. Not sure what caused mine. I think chronic inflammation. Maybe it was NEVER yeast.

4

Thanks for your reply. Interesting about the ocean, but what is a super fun site? Also I imagine that eczema would be linked, but no medic has suggested that. My GP did suggest it could be eczema when I first went for diagnosis though. 

5

Thanks for replying. I am sure recurring yeast infection is a fore runner to LS, but as you say maybe that wasn't what you had.  It isn't caused by sexual contact though - you cannot 'catch' it, as I understand it from all I have read. I'm with you feeling like you've been failed, it doesn't help your confidence when you think doctors just dismiss these ailments. I think they need to be a little more empathetic.

6

ah do you mean there were a lot of people swimming where you swam, therefore lots of possible bacterias?

7

All this ls problems started after I was diagnosed with my thyroid disease at age 24.  I’m 27 now.  The doctors keep arguing with me that the two are not related.  Well I know my body.  I’ve been doing a lot of research and more people who have been diagnosed with the thyroid disease have more of a chance of getting ls.  I asked my doctor how I got it and she says bad luck.  

8

Does monistat work for other vaginal infections?  I’ve had repeating yeast infections as well as vaginal vagnisium infection and idk if it’s related to ls.  It must be because I’ve never had these issues before.  

9

I’m with you regarding stress.  My mam died of cancer and dementia and I suffered empty nest at the same time.  The stress of being Mams carer and being with her when she took her last breath has changed me forever.  I then suffered with LS and Raynauds, never had these before but like you had periods of itching and thrush ov r the years.  I asked is there a HPV link and when I was getting a biopsy done I asked was the outside skin ie vulva getting biopsied for HPV they said no.   So maybe there is a link but the drs don’t seem to know.  I worry about VIN too, all we can do is keep an eye on things carefully.  Interestingly, I have suffered with excema all my life.

10

I believe it will a stress/hormonal related. I have a child with special needs who had a particularly bad seizure one night which landed us in the hospital while my husband was away. It was immediately following this event that I started itching -1.5yrs later being diagnosed with LS. 

11

Hormone changes at menopause is a common one, also other autoimmune disorders. There was a thread like this when I first joined and I'm trying to remember the outcome. It's much more common than people think, but no one talks about it. Maybe your best mate has it but isn't saying anything... would you? My doctor is a skin specialist and thinks that most women will have this to some degree at some point in their lives. Just think how many there must be who are undiagnosed? Going to doctors who don't know or care? Lots of us have had some pretty grim doctor experiences. Sorry rushing to go out, so thoughts not coherent...

12

Hi there, over on the thyroid UK forum on Healthunlocked, they somehow set up questionnaires now and again to get info back about various things. Not sure how this is done or whether this site can host that kind of thing. 

So, I am going to be completely frank about some issues that others might find crazy because I know you can't come and beat me up :-) I did read somewhere, a while back, that it was common for sexual abuse to have been an issue and possibly, I think, this could also apply as an adult, being in a relationship where you were not considered during sexual relations? Don't know quite how to put that :-). In terms of where in our bodies auto-immune issues arise, it could be a link? 

There is a big school of thought which believes the issues that arise in our bodies are no accident. Various books are available about this, 'The healing power of Illness' is one example "symptoms are expressions of psychological conflicts, and can only be healed when the patient is aware of what is behind the problem" and of course there is all the 'create your own reality' paradigm. 

I was abused as a child and hence chose a fairly 'safe' man to marry however even I wanted more sex than he was giving! So, many years of an unhappy, sexless marriage followed by lots of activity, several partners and picking up an STD, Herpes I believe, which was successfully treated.  Also had another STD 25 yrs prior. You could say that I had a lot of focus on my sex life due to life events/situations. 

Approx 2-3 yrs after Herpes I began getting itching. I had not been in a relationship for approx 2 yrs at that point and it was around this time that I finally stopped having periods and was truly post-menapause. I am aware that I was then thinking that I wasn't interested in a new relationship and if you believe what the book  'The healing power of illness' states, I have created a situation where I cannot have sex ! It is a challenging, deep concept  but worth considering. Search Google for more info.

There is another school of thought, as mentioned by you sarb73328, that virus's hibernate in our bodies and given a weakened host, will grab the opportunity to wreak havoc where ever they've been hanging out. This fits with the normal medical model as in chickenpox/shingles. It seems logical that other virus's do the same thing.  See Medical Medium for a radical education in this.

 

Other possible factors that affect me, auto-immune thyroiditis, tends to run in the family, predominantly females.

Other factors that may have been an influence- long term severe stress due to divorce/financial difficulties and long-term, inadequate thyroid treatment. Adrenal function was tested during this time and I had very elevated cortisol. Also, latterly, I was dealing with my mothers terminal illness which affected her mental capacity and made an already difficult relationship/situation, toxic to my mental and physical health.   

Around the time of my mothers death, last year, I first started getting other 'gynae' symptoms which took me to the dr and I got the LS diagnosis. You could say that having no further responsibility for my mum enabled my body to assert itself, so I could get the help I needed. 

Thought provoking and not too off the wall I hope. X

13

What causes LS?  For a while my theory was - we live in a very toxic world.  How do you fight that?  

​Any age can get this disease.  It is also hereditary.  Is it an accumulation of our toxic environment and that through the generations?  

​Or are we simply lacking an important ingredient/vitamin/mineral?  Supplements do seem to make a difference.  

​Healthy eating, cutting out added sugar, strict dieting makes a difference as well. ​That translates to healthy lifestyle.  

​Not to forget the stress factor.  Many of us have experienced a flair up when living through a stressful period.  Stress affects your immune system.  

​Or do all of us have adrenal glands that do not work as they should?  Hence a weak response to stress of any kind.  

I only seem to have questions.  

14

I see the menopause clinic and the dr there who keeps a check on me six monthly said the atrophy is a lot down to lack of hormones being post meno which I agree with as well as being stressed.  She said the minora is normally rich in oestrogen, so you are correct Bridge of Sighs x

15

Your comments are always great!

16

Don't we all. Good questions too. Thanks.

17

Can you please tell me what VIN and VAIN stands for?

18

Vulva Intraepithelial Neoplasia I think I spelt it correct. 

19

Vain is Vaginal, I’ve been told it’s very rare though. 

20

As Sue says, VIN and Vain are pre-cancerous conditions: Vin in vulva, VAIN in vagina.