What possible past history caused LS to start?
Posted , 18 users are following.
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?
3 likes, 39 replies
susan39248 sarb73328
Posted
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
sarb73328 susan39248
Posted
Thank you for sharing your history, Susan - and it isn't off the wall. You've had a tough time since childhood by the sound of it. Certainly thought provoking and our bodies often follow our minds for sure. That is proven by us all agreeing that stress is such a huge trigger for LS. I empathize with your stress over divorce, financial issues and dealing with a mother with mental issues - all things I too have been through. Who knows how deeply these things entrench in our minds and bodies, coming out much later as physical health problems. I had never looked at this the other way round though: having no further responsibility for your mum 'enabled' your body to assert itself. That is interesting. It would be nice to think that that could reverse in time: the lack of responsibility = less stress = remission/relief of symptoms.
hanny32508 sarb73328
Posted
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.
TexinSF hanny32508
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Don't we all. Good questions too. Thanks.
sue162 hanny32508
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sarb73328 hanny32508
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Good questions Hanny. Hadn't thought of poorly functioning adrenal glands. How could we improve them I wonder?
I asked my GP if I should expect my LS to gradually worsen over the coming years as I had read that once over 70 you no longer have periods of remission and her reply was it is hard to say because patients stop coming to be reviewed sometime after that age. I left the surgery thinking is that because they know nothing more can be done for them so they continue to suffer in silence or (more hopefully), LS has stopped causing damage and it's destruction and symptoms remain at a certain stage which they continue to manage with potions?
Any ladies over 70 able to answer that one?
sue162 sarb73328
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hanny32508 sarb73328
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LS simply requires constant maintenance. If it continues the way it is at present, I'll cope just fine with it. Though I do worry when too old to look after self, where my help for this everlasting maintenance-routine will come from. Care facilities provide only standard care and buy medicine in bulk. My 'medicine' is mainly coconut oil, baking soda and borax for this thing. Not to forget that many health care professionals have never heard of Lichen Sclerosis.
Nancy_K_B sarb73328
Posted
very interesting questions, sarb.... I"m 72 but just got diagnosed.. and don't plan on going back to the gyne... she doesn't know about vit D - that's no sin.. but she wasn't listening either.. now that i know for myself the nutritional auotimmune and diet requirements I can look at this myself - and WITH my cardiologist help of all things... doesnt' that strike you as funny, girls? my integrative cardiologist knows more how to help than the ob-gyn.
My guess Sarb, is that those of us over seventy who don't show back up for the stats to record us, have MOVED ON to integrative holistic care .. and fall off the radar of standard western medicine.. at least as it is practiced by CDC data stats.
sarb73328 Nancy_K_B
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Thank goodness we are all on here suggesting and researching for ourselves.
BananaNanaDH hanny32508
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I am also 70, with this LS problem. You stated you use coconut oil, borax & baking soda. Is this used as sitz bath or ointment on the irated area. I am now having a bad time with my LS. the cortisone meds set me on fire, Emuaid has helped with the rawness. I remember my MOM talking about how she itched so bad "down there", but we never discussed it. She died 4 years ago. I think it must be inherited and I will talk to my daughter and granddaughter.
hanny32508 BananaNanaDH
Posted
I use 1/3 cup in a full bath for baking soda. For a sitz bath that ill be perhaps a couple of tablespoons in the water. For the borax bath I use 1/6 cup in a full bath, so I guess that will then be approx. one table spoon in the sitz bath water.
?Your poor mom struggled all alone. Good plan to tell your daughter and granddaughter about LS. And what works to keep it under control. The medical world does not yet have answers and too often don't know anything about LS. All we can do is protect our daughters and granddaughters.
deb09833 sarb73328
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sue162 deb09833
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sue162 deb09833
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sarb73328 deb09833
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