New and scared

Women's health
1

Hi, I was diagnosed with Lichen Schlerosis a few months ago after suffering a year of pain and unbearable itching. Before finally getting to see a gynaecologist, I was given lots of different creams for thrush. I've had to take several courses of antibiotics for various infections (bladder, tooth etc.) so I did test positive for thrush a few times. At other time, the results came back negative leaving me very emotional and frustrated. So when I saw the gynaecologist, he described the skin as "melting." 

He said it was very early onset Lichen Schlerosus and was seemed very triumphant in finding the diagnosis. I was initially relieved. He told me to stop having baths, never use soap or let any products (shampoo etc.) drip down my body in the shower. He said to wash my hair over the bath rather than in it, and wash under my arms with soap over a sink. He said if the symptoms don't clear up, go the my doctor and ask for Lotriderm which is a steroid cream. 

I was still uncomfortable weeks after, so I did get the cream. For a while, following his advice, I did feel an improvement. However, I've now had another bladder infection so another course of antibiotics. The infection has cleared up, my doctor did another urine tests after the antibiotics to be sure, but I still have itching. 

I feel very scared and lonely, with a condition no one can see but me. I don't know if I'm allowed to go swimming - which I love - or ever have a bath (even just plain water) again. I also do not know if the itching is a the start of a bladder infection, thrush or the lichen schlerosus as it tends to move places. 

My husband wants a baby soon, I'm 28 and feeling the pressure of missing the chance to have one. But the thought of intercourse is frightening, not only because of the pain but because of the possibility of another bladder infection which I seem to be prone to getting, which starts the cycle of infection - antibiotics - thrush off again. 

I'm also feeling distressed at what I've read online. Neither the gynaecologist or any of the doctors I've seen have mentioned fusing. I don't seem to have this yet, but the thought of it alone is absolutely awful. I am scared of what is lying ahead of me. The doctors I see are not very sympathetic either. 

The gynaecologist also said he won't need to see me again, but I feel that if this condition is only one that can be managed and not cured, surely a yearly visit would be appropriate to make sure it hasn't got any worse? 

Other than the Lotriderm and copious amounts of thrush treatment I use whenever I seem to get really bad, I use plain natural yoghurt sometimes to help with the itching. I don't know how to avoid the bladder infections either, as no matter what I try to avoid they seem to happen anyway and I'm increasingly miserable and paranoid. I feel like I spend all my time thinking about these conditions, and feeling isolated and embarrassed and completely defeated. 

Can anyone recommend what I can do to try and get some sort of control back over my life? 

 

2

Hello SomebodyHelp,  I truly feel for you and you have come to the right place.  This site is chock full of information to help with your symptoms, but none of it is a cure all, they only manage the situation and not everything that has been suggested will work for everyone.  We are ALL experimenting and sharing what we have learned and how it has affected us.  

Your concerns are very real.  The most important thing is to try to stay calm because stress is a big factor.  I have not mastered that yet.  

There is no cure and none of the doctors know what causes this or what to prescribe beyond steroid ointment which in itself causes issues but does offer temporary relief.  Please go through some of the conversations on diet and vitamins.  Our guru is Nancy KB who has done a heck of a lot of research and advocates a change of diet (no sugar, no wheat) and vitamins, specific ones.  We all believe this is an autoimmune disease.  Some doctors will not agree with this.  Mine did not believe that.

The important thing to get under control is the itching.  I don't know how to stop the fusing.  It seems to happen overnight and especially at night. Like with anyone who has a serious or annoying illness, we have to learn to live with it and incorporate it into our lives and hopefully have patient and understanding husbands or boyfriends or partners. 

Read through the discussions for some things you can do.  Most of them are homeopathic.

Keep in touch, we are all here for you.  I have found this site very comforting that I am not alone and I am shocked at how many women have this.  BTW, it is not catching.   Hugs to you.

 

3

Oh god you poor thing !  It’s a visious circle

Antibiotics cause thrush and then you get it and take more 

Honestly I’d see if you can see a Urologist about the urine infections first as a priorIty, can you ask tonne referees by your GP? 

I feel so frightened of this too. My fusing has started but at the moment very very little discomfort but I’m waiting for it which is mentally draining 

I’d also try bathing in Epsom salt as it does help soothe 

Good luck xx

4

I am so sorry you are dealing with this in your prime.....LS is controlled...that's the goal really. Everyone is different and you need to figure what works for you. I am a year into this and 71. Here are some ideas....wear ONLY cotton panties and if you find you need to, change them a few times a day. Some of us wear no panties at home, just a cotton dress of some sort. Airing our problem area really helps!

Flare ups are awful, but can be tamed! I use a squirt bottle filled with water to cleanse after EVERY time I pee....then use coconut oil, or emuaid or even crisco to lubricate the labia and clitoris.....with a lubricant, the skin can't stick and fuse together.

Usually, a steroid is perscribed and used 2x aday for awhile, then 2x a week to ward off flare ups....... steriods thin the skin, so use only when necessary. The steroid of choice is Clobetisol. A less invasive help is Cortizone 10 ointment. Seeing your Gyn 2x a year at first is crucial. I also see a dermatologist who specializes in female problems.

Go on line and Google LS Specialists, both Gyn and Dermatologists specializing in LS or womans problems.

We, as a group are here to help! Dont get discouraged; the keyvis to getvit controlled!

5

HI there Somebody who must have a real name - grin.

You have found the best english speaking website on the planet for LS. I"m 72 and was only diagnosed about 8 months ago, but must have had it for some years unawares. 

Smiles - oh, so YES! we can get you out of pain and definitely able to have a wonderful baby.

SO, my dear online friends are too kind... but yep, I did follow my nose through google land for about 3 months solid to find a course of action that made me feel confident.   I"ll post the link below to the pages, It's full of verification that LS is an autoimmune disorder and very full of scientifically verified nutritional deficiencies that appear to go along with autoimmune (as identified by Md's and ND's). So please do read up on the whole 17 pages. 

BUT, before gong rushing out to by supplements, be sure to read the links and info at the very beginning about Toxins and cleanses.

My gut feeling with all your recurring UTI's is that you have a long standing case of candida overgrowth and/or parasites etc etc.  There is no point in taking nutritional supplements until your digestion can use them - right now the fungus, parasites etc are stealing what you eat for nutrition.  Plus we've discovered that something called Leaky Gut is probably also stealing your nutrition.  OH! well that can be helped with MAGNESIUM  so start that one.  MIlk Thistle will aid with the parasites.. but you might want to consider getting the Dr. Hulda Clark Protocol that comes in three SEPARATE stages  - you need to get at this . 

For starters so that we can help you the best we can, let us know what your diet is right now, or what it had been the lat 5 years ( your young we know, college etc there are all age groups here - and genders some your age.)

Somebody here will give you the run down on the diet issues.

Also tell us about your family's health - mom, dad, siblings, grandparents - do they have any autoimmune disorders? 

I worked most on the nutritional rebuilding front.  Jot down the family issues as you read the section here: 

https://patient.info/forums/discuss/pathway-into-and-out-of-autoimmune-diseases--661033

to quickly manage the pain use whatever you have olive oil, coconut oil, I've come to love aloe vera gel; also early on the worst was helped with using baby diaper rash ointment that has zinc oxide in it.   Others will pipe up with their favorites too.

Keep hopeful many blessings and we want to see a photo of you baby in a couple years or less. smiles.   

6

Hi SomebodyHelp, Welcome to the group. 

I am just going to talk about your UTI infections for now.  It is thought possible that there is a link between Lichen Sclerosus and UTIs because like yourself I went through much the same.  It was a constant vicious cycle and in the space of a year, I had to take antibiotics four times.  The brand I use is AZO which contain 25,000mg cranberry fruit alternative, but there are others just as good. 

This worked for me and has continued to work for me and so I am ecstatic about it.

I would think that most pharmacies will have something similar, and so I would get them ASAP, if not you can get them from Amazon.

 

7

My girlfriend gets frequent bladder infections. I was always told when you urinate lean forward touch does. This makes your bladder completely empty. A lot of warm showers and I use olive oil. When I have flare ups . hydrocortisone cream. Stay in touch we're here for you. God bless

8

welcome Somebody... Much to share and several people have starte town the UTI road which is where i worte about also but the patient.info Autobot keeps holding my comments; maybe it'll come through tomorrow. That took an hour of caring about you, so sorry,  but for now I'll try a short version again, do read my report that took be 3 months to search out. 

There are many nutritional supplements that have proven helpful in autoimmune disorders starting with Vitamin D3. BUt as Guppy says, the UTI's really have to be taken care of first. Read my article here, and take special note of the first things to do about fungus and parasites etc.

Blessings, 

https://patient.info/forums/discuss/pathway-into-and-out-of-autoimmune-diseases--661033

9

Hi Nancy, Your link above did not work.

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Hi - You need to see a dermatologist OR a gynecologist who specializes in LS.  I had to go to 3 different doctors before someone diagnosed me.  I was treated for a yeast infection for a year before the derm. figured out what it was.  When having a flair up, the Clob. ointment helps, but not a ton!  Good luck.  This crap is miserable and no cure in sight.

 

11

Oops again???

https://patient.info/forums/discuss/pathway-into-and-out-of-autoimmune-diseases--661033

12

Hi Nancy, that linked worked.  Thank you.  Going to read it again as I only got bits and pieces going through this site.  My primary care doc's office called yesterday to tell me I may have a thyroid issue and will address it with me next week.  Can't wait to find out what that would be.  My Vitamin D and B-12 levels came back normal.  Hope all is going well for you. ❤️

13

My apologies if I repeat myself. But I beg of you all to become your own best advocate for your own health - with the help of the medical professionals. 

Susan, we can't just take our doctors word that our blood tests are "normal". The reference ranges for "normal" may not be adequate for any one person or condition.   In fact some researchers have discovered that Vitamin D, for instance, must be above 70-80 ng/dl to effect healing in many diseases. BUT the charts are written for anything above 20 or 30 being "normal". If you have LS, or any other autoimmune disorder, you can't live by the old inadequate reference ranges.  You might choose to call your docs office back up and ASK for the actual number.  The nurses will be happy to do so.  You'll see the info in my report and then when you are ready you can share this knowledge with your doctor.  

Did you know that over 30% of LS patients also have hypothyroid imbalance? 

14

Thanks Nancy.  So if there is a hypothryroid imbalance and medication is prescribed, I wonder if that necessarily mean there will be some relief from the progression of LS?

15

wellll.... I don't think I've read anything about that from a medical articles standpoint, but since you asked, I had just been doing some dowsing (so you take this as you will). and the answer was yes. But I haven't asked any qualifying questions so that doesn't say how much etc. 

Have a great weekend.  OH! they are both autoimmune disorders and they both respond to Vitamin D3.. so that surely means there is help but the chicken versus egg scenarion makes it uncler wich comes first etc. GRIN we don't care as long as we FEEL better right?! 

16

I could live with LS if parts weren't disappearing.  I just don't get it.  

17

Dear Nancy and other posters,

Thank you for your responses. I had read that Lichen Schlerosus is an auto-immune disease which did not surprise me as several close family members have auto-immune diseases - though no one has suffered with this that I know of. My Mum has Vitiligo and Coeliac disease - I have been tested several times for coeliac disease which has always come back negative. My uncle (Mum's side) has a disease where extra bones grow and have to be removed surgically (not sure of the name of it.) My Grandad (Mum's side) had Multiple Schlerorus from a young age (he died young after a car accident) and my Aunt (Mum's side) had Schizophrenia which I've heard is linked to these other diseases genetically. 

I have had a quick look at the links you've posted and need to study them in more detail. I have been trying to improve my diet lately - I cut out sugary drinks and brought 0% sugar sweeteners instead without realising the problem this would cause. I believe this may have contributed to my latest urine infection as I have since read that artificial sweeteners an be an irritant of the bladder. As well as the bladder infection, I'd had a constant dull ache in my lower abdomen which I thought was a muscle ache but which has since improved - though not completely - since stopping the sweeteners. 

My diet isn't brilliant because I do eat processed foods. I eat a lot of home cooked meals for dinner and salads for lunch. I was exercising more recently until the latest infection as I'm scared that the sweat/ stress of exercise is a trigger for bladder infections. I shower with plain water a lot at the moment, and I don't wear underwear to bed. I have tried finding 100% cotton knickers in shops - it's hard as everything seems to come with synthetic lace trimming. Perhaps I should look online?

Have you read anywhere that baths should be stopped completely for those who suffer Lichen Schlerosus and frequent bladder infections? The gynaecologist told me this was the main cause of my discomfort - he said that there are glands by the urethra that lose all protection as soon as we sit in water. I haven't taken any salt baths to calm the itch because he said to not take baths at all. 

Aside from the pain and itchiness, I also feel self-conscious now that I cannot use soap on this area of my body. Plain water does not get rid of sweat alone. This is another reason that I'm am nervous about intercourse with my husband as now I don't feel clean even after showering.

I suffer from bad acne - which I imagine is linked because it is to do with inflammation. I get painful rashes of spots on my back, chest, neck and face. I have not found a successful treatment for this all my adult life. I avoid milk, cheese and yoghurts as I read that dairy is linked to acne - since starting this a year or so ago there has been some improvement but not much. Therefore, I cannot take yoghurts as a probiotic because I end up with more painful skin. 

When I mentioned always having trouble with my skin, my gynaecologist told me I am just delicate - I hated hearing this and it hasn't helped at all. I feel like I am becoming more sensitive to everything - cosmetics, food, clothes - I just feel surrounded by triggers with no way of knowing what to avoid first. 

I have tried natural deodorants in the past and found they didn't work at all. I would be interested in finding one that does work but I also need to think about costs of switching to a better lifestyle - natural cosmetics, healthier food, 100% cotton clothing - it all adds up quickly. 

Also, I live in the UK and getting referred to a gynaecologist was hard enough once - I've had to go through about 8 intimate inspections by different doctors just to get to that point and then he said I don't need to go back - just stop having baths and use the Lotriderm if necessary. My confidence is at an all time low and I feel depressed all of the time. I have been prescribed anti-depressants in the past but I have not taken them through fear of becoming dependant on them. I also haven't had enough urine infection to be referred to a urologist yet - which is another barrier to getting answers.  

 

18

Hi, SH do you remember the part about taking cranberry capsules, I know all this info is overwhelming.  but It really does work and I would buy those immediately. 

What you will find is that many doctors really dont know enough about LS and so you have to go with what works for you.  I disagree with him about baths, and I would continue to have them.  I also use a perfume free soap on my Vjay.  I think as long as you are not lathering it on it is okay to use a tiny bit.  I know we are told not to use anything down there...but I think that's rubbish as well. 

What I am saying basically is that you need to read as much as you can on the subject of LS and do what works for you.

19

I must say that i have upped my Vitamin D, I would rather get my levels higher just to be on the safe side.  I think because I was low on Vitamin D it is why I initially got Lupus.

20

Somebody H ... I definitely agree with Guppy. I think most of the women here do too about baths. they help soften the skin and prepare the skin for the clob or aloe etc. 

SomebodyH I just wrote to Ninni, a 22 year old in Sweden about how the autoimmune supplement protocol is almost exactly the same as for a natural way to address depression as well - no fear of side effects.  I had looked up the cofactors of Vitamin D3 to be sure. So do look that up and feel better soon.

As an american I am in shock that non- gynecologists would have subjected you to 8 EIGHT private parts exams... what the H?  so sorry.

OH, and you should not have to worry about loving with your husband.  Guppies suggestion of unscented soap has worked well for me as well. I also have patted my parts down with a cotton ball dipped in  1/2  and 1/2 hydrogen peroxide and water.  You might try that.  Another thing that I also use is Vitamin E liquid, 14,000 IU and up, from the health food store, the one I have has a gentle subtle fragrance fomr some essential oil. it smeels lovely and is not too strong and has never bother me - in fact it's wonderful. 

OH! oh, and I checked to be sure... guess what? VITAMIN D is also found to aid in the healing of acne! 

so put the terms, Nutrition deficiency acne, into your browser and see there a page ortwo of many many articles on it...  hope this helps.