Young and...scared?

Thank you so much for all the advice and letting me know your daughters story. It is relieving to hear how good she is doing and that it is possible to get LS under control. I will most definitely talk to my mom about all of this and let her know that I need to see a doctor, you are right...she would hate to know I'm suffering. Since you mentioned your daughter has constipation, do you know if it is related to LS? Because for the past 6 months, I've been experiencing constipation which is pretty rare for me. Thank you so much once again Jo, I appreciate it a lot!!!! xx

Hello Mila, sorry I had written a reply but it was on my phone and obviously didn't save. The first consultant who actually diagnosed LS in my daughter was very sure that she has LS around her anus as well as her vagina, that has caused shrinking of the skin which meas she tears if she has a large stool. Bless her she has 3 anal fissures and one opened up again tonight. LS doesn't always show in both areas though. I hope you have managed to speak to your mum by now, take care, Jo

Hello Jo, don't even worry about it...thank you for taking the time to write back to me!! Oh okay that makes sense, I was just wondering since that is something I had been experiencing. Ugh poor thing, I am so sorry. Your daughter is a trooper for being so young and going through this! I did speak to my mom about it today, and she was just very concerned and upset that I hadn't told her before. She was also concerned since she has never heard of it before, she is making appointment right in the morning. Thank you for everything, take care!! xx

Thank you so much for taking the time to read my post and replying, it means a lot to me as I am so lost and confused! I will definitely take your advice and bring some research on LS with me, after all...I am going to inform my mom on it as well as I'm sure she has no clue what it is. Thank you once again Joodie, I will keep everyone updated! xx

Thank you so much for the advice Ann, I understand where you're coming from and tonight I'm going to inform her about all of this. I will be sure to change my diet to the foods you have mentioned, thank you so much again...its good to know people really care and want to help out!! xx

Wow thank you so much for all of this, I can't even begin to explain to you how helpful yours AND everyone else's responses have been. I, too, have always been itchy down there which is why I thought it was normal to me, but I'm happy I finally looked down there instead of living with it and not knowing what was wrong. I will definitely cut back on any sugar, which like you said..will be extremely hard but it's for a good reason! I'm sure the doctors will prescribe me a cream so I will be sure to let you know which one it is. Yes jeans are very right these days, which is why I sometimes switch to leggings, sweats, or other loose fitting clothes because it makes me itch even more. I will be sure to do that! The good news made me feel a lot better, I'm still young and would love love love to have kids one day and be mom but what I have read scared me a lot. And all of those pictures DEFINITELY did not help, so thank you for reassuring me of all that! Thank you so much Morrell, your post means a lot to me and I can't thank you enough! xx

You are such a sweetheart, Mila. You'll be a good mom. You mentioned constipation above. I was always constipated as a girl. I remember my aunt cautioning me against straining on the toilet. I had a lot of stomach aches. It's often mentioned as a result of our body holding back in anticipation of tearing around the anus. You should eat lots of fibre to try and loosen things up. And drink lots of water. Plus healthy guts make for healthier skin. Hope your talk with your mom goes well.

Thank you so much Morrell, the fact that you have replied once again means a lot to me!!! It's so awesome to have support from people like you! But as for the constipation, do you think it could be linked? I have never been constipated until I found out about this a while ago! Thank you, I will be sure to eat a lot of fiber and drink more water...I need to stop this now before it gets worse! I'm sorry for asking so much, just one more thing...on the forum about the fact sheet, someone mentioned that a low thyroid condition could be associated with all this? It is weird that I saw this, because tomorrow I am actually going to a thyroid doctor as my tpo levels have been quite high, I have lost 20 pounds since November, and I've been losing hair so if it is related to that and I do have a thyroid condition...it would all make sense in a way. As you can tell, I have a lot of problems with me! Lol. Thank you so much once again Morrell, for not only being so sweet with replying and giving advice but also just hearing me out! xx

Wow, one more thing Morrell...sorry for all of this but I'm just finding out more and more! Is it possible that I may have an auto immune disease? My mom actually had Graves Disease and had gotten her thyroid taken out, which on the website that I was researching auto immune diseases on, it said that it is considered an auto immune disease. Please get back to me and let me know what you think, thank you so much!!! xx

Well, Mila, LS is one auto-immune disorder. I also have psoriasis, but it's 100% clear now. Some women have other auto-immune disorders. It's not another thing, it's really sort of a kind of body. And I believe that in this world we live in many, many people have one or another. There's thyroid trouble, intestine trouble, migraine headaches, arthritis, and others. Having LS absolutely does not mean you'll have another one.

My mother had irritable bowel, probably even as a girl, then rheumatoid arthritis at age 40. I have neither. She's a nervous person who had a very difficult childhood which she buried emotionally. I sort of wonder how many emotional/hormonal toxins were passed on to me as a baby. It is relatively unusual to have it from babyhood through adulthood as I have.

Stress is our worst enemy. I try to remember that stress doesn't come from outside, it's our own anxiety in response to external events which are neutral from their side. The best work you can do is getting to know your mind and observing the early stages that come before an upset. My mother tends to have an outburst and then say 'I can't help it!' I disagree.

Mila, there's no study that links any of these things in a cause-and-effect sense. My gynae told me LS is 'realted to' psoriasis, in other words they often occur in the same person. It will certainly be good to get your thyroid straightened out. You don't want to mess with that. I had a mentally ill sister and I've read that she may have neglected her meds which made her super anxious. I suspect she was a drug addict, so her troubles were complex. She had no thyroid from the time she was about twenty.

I think that when my psoriasis was badly flared up from stress the LS also flared up. Whether one caused the other or not, I don't know. These days the LS seems more likely to flare a bit, while the psoriasis seems to be seriously in remission. I hope.

Thank you so much for informing will all of that Morrell, I am now much more informed about LS then I was before. I speaked to my mom about all of this today, and as expected...she was very upset, concerned, and nervous about it all. She was upset I hadn't told her right away, and concerned and nervous as she has never heard of this before. I informed her on the basics, and showed her what was going on down there. She is making an appointment first thing tomorrow morning, so hopefully I will get this all settled soon. I read that estrogen cream can make the fusing go away in early stages? Do you know if that is true? Thank you so much for following my story and helping me through this, it means a lot! xx

I'm so glad you told your mom. We hate being left out of these things. I feel for her.

You'll be talking to the specialist about what creams to use. I'm past menopause and never took estrogen replacement. I was prescribed estrogen cream last year (it was inserted vaginally with a plastic applicator) but I didn't like the side effects. It was too late for my fusing anyway. I expect you'll be treated very well because you're young. We had another young woman on here who had various doctors.

I just re-read your original post and I'm sure you've caught it at a good time. Your white patches are in the same place I had two rows of painful splitting last year. Since I've been on the Clobetasol (Dermovate in UK) that hasn't happened again. Our skin seems to react to touching itself. A few women get white patches under their breasts. This is why it's so important not to seal ourselves into tight, synthetic clothing.

While you're waiting to see the doctor you can stop washing down there with soap and start using some kind of oily cream – even Vaseline is better than nothing. A lout of British women on here use Hydromol. I think it's available without prescription.

Stay in touch Mila. We're all thinking of you.

 

Yes I'm very glad I told my mom as well, it was as if a huge weight had been lifted off my shoulders! I went to the thyroid doctor today, turns out I have Hashimoto’s thyroiditis which is in fact...an auto immune disease so it makes sense as to why I would have LS. My mom also brought up LS to the thyroid doctor, just in case she knew about it which she did, just not much. My mom made a gyno appointment for me which is on Wednesday as there are no appointments that will be available any sooner. What if my doctor is not too educated on LS and doesn't know what to give me? Are there any creams you prefer? Should I ask about the estrogen one to prevent and cure the little fusing that I have now? Thank you for telling me all of this, I have noticed that tight clothing has been making it itch a lot more which is not pleasant. Does any cream stop the itching? I will be sure to do that! Thank you so much for the time you have put into writing to me, I appreciate it so much Morrell!!!! xx

Mila, if you got an appointment with a gyno that fast, it's most likely you'll be in excellent hands. I was given Clobetasol Propionate cream .05%. (In UK it's called Dermovate and it seems there are several other names. Whatever it's called, it's the most potent corticosteroid cream. Totally the standard treatment for LS. I've seen it mentioned everywhere). You use a tiny bit fairly often for the first while then gradually taper off to twice a week, which is a permanent maintenance dose. It's not to be used 'as needed' – it's absorbed through the skin, so it's a steady low dose. I do use it an extra day if I'm torn or it's very sore and red around my anus. I wondered most of this year whether I was using too little, but it turned out I was just right. A 50g. tube lasted me one whole year. They say you'll need between 30 and 60 g. a year and this was my first year so I used it more often in the first few months.

The thing that seems to vary with gynos is whether they insist on a biopsy before making a diagnosis. I had such obvious scarring and atrophy and the torn white patch, that there was no doubt about LS. So, you might be given an appointment for a biopsy at a colposcopy clinic (and then wait for the results). There's a tool that takes sort of a deep, narrow (3 mm) core sample on which they do special tests for LS. One woman on here had a bit of trouble with the little wound healing. Manuka honey worked on it. (Bee pollen in that kind of Australian honey had natural antibiotic qualities.) And warm salt bathing of the area.

Yes it pinches and it's sore afterwards, but this is just once and you might not have to have it.

Very interesting (but of course, not wonderful news) to hear you have Hashimoto's. A lot of the women on here have said they have it. Really excellent to be diagnosed so young, so they can stabilise you now. Maybe it will help the LS, we just don't know.

I'll be anxious to hear what the doctor says.

I have a lady here who makes natural herbal creams. She sold me a huge jar (as salves go, huge) of plantain ointment. I think it's basically olive oil with plantain weed steeped in it. I don't know what thickens it. If you have a funky health food store near you they might have products like my 'Herb Lady's'. Then there's one of her students who makes a beautiful cream with beeswax from her own bees, grapeseed oil, and herbs.

Many woment here say they use organic coconut oil, which is stiff and white like shortening. They'll have that in any health food section. That might be the simplest thing to start with. You could get that today. It will be expensive as cooking fats go, but very cheap by cosmetic standards.

Failing that, at the regular drug store ask the pharmacist what oily cream you can use for moisturising LS (tell them you haven't got your prescription yet, so this is on top of steroid cream, not instead of it). They know about LS, possibly more than many GPs. I would just check that it doesn't have lanolin in it. I'm allergic to lanolin.

My key advice is don't scratch! Even if you have to wear mittens to bed. Scratching triggers a downward spiral.

Mila, I'm so happy to be sharing this with you. It's so brilliant that you managed to figure out your problem and find us here. Talk soon.

I forgot to answer your estrogen question. I just don't know about that. You're going to have a path here... what birth control to use, the pill is also hormones, how that might affect LS, we don't know.

I'll tell you one thing I would be forceful about if I had a daughter. You want any man who makes love to you to be very kind and patient, which are the best qualities anyway. He has to understand that if your LS is flared up, he'll have to let you heal because sex is essentially friction and bodily fluids which irritate LS when it's flared up.

Thank you Morrell, I'm nervous for the appointment but at least I'm not going in there with no knowledge of what I have or LS. That whole paragraph on creams was such a HUGE help, thank you for all that! I was really just lost on all that and was hoping to find one that I could recommend to the doctor just in case she has no clue about LS or how to treat it. I like to be on top of things if you haven't noticed! I really hope that the gyno could just tell right away what I have, I mean there's already a bit of fusing...I just wouldn't want to go through a biopsy down there!! I could only imagine how bad that will hurt. If I end up do getting a biopsy, I will most definitely cure it in that way. As for hashimotos, I am happy they have somewhat found out what is wrong with me but I still need to get more tests for celiac disease and some other thyroid levels such as t4 or something like so she didn't really prescribe be any medicine just yet. Yesterday it seemed as if I was just itching more than usual which was not pleasant. You've talked about how stress does not help LS at all, so I was thinking maybe I'm just stressed about this whole situation. Although I really don't know anywhere where I can buy natural herbal creams, I'm sure I could find a place near me because all of those sound great and seem as if they would help. Not too long ago my mom was just telling me how coconut oil is useful for a long of things and I think we may possibly have a jar, if not..I will be on my way to get some later! I will definitely look into that, thank you Morrell! (: ugh yes, I haven't itched in while but yesterday I just kind of did as I couldn't handle it. I'm hoping it won't be as bad today! Okay, will the gyno recommend me getting on birth control? Will that help with the LS at all? Sorry, I'm just really worried that the gyno won't know much about LS and I want to know as much I can just in case. Thank you so much, I've been so worried about that. Last night I was on the verge of tears as I was just overthinking about all of this so much and how I don't know where I will be with LS 10 years from now when I want to settle down and start a family. I guess I've just been very stressed and emotional lately on all of this, it doesn't help that I am starting my period in a couple of days. Thank you so much once again Morrell, I cannot thank you enough for all the support and advice you have given me throughout these last couple of days...I needed it!!!!! xx

Mila, I almost guarantee your gyno will know all about LS. It's general practitioners who seem not to recognize it. The worry will definitely be stressing you out and making the LS worse. (Maybe good to have the symptoms obvious so you don't need a biopsy!)

I'm not at all suggesting you should go on birth control for LS. Birth control pills are a big deal and unless you're in some sort of heavy romance situation, at sixteen I would hope you wouldn't need them. If the gyno thinks estrogen would help the LS, you can have cream that works locally.

Celiac, too? Sheesh. Well, the diet for celiac might be good for LS. One of my best friends wasn't diagnosed with celiac disease till late in life and now that she's doing a great job with cooking for it, she's very healthy.

DON'T SCRATCH!!

Do you have any hobbies or relaxing things you enjoy? I've always been artsy-crafty, so that has been the calming tool most of my life.

Rather than looking forward with dread, try to appreciate that you're getting this in hand unusually early. Even I, who let it go untreated for 61 years have had a normal life with babies and husbands and hot sex. You're very lucky, within the context of an unlucky disease.

The older we get the more people we know and the more we see that everyone has something. I had a rich boss who had the world by the tail. She congratulated herself constantly. And then she married a second man who insisted she have a fourth child (at 40) so he could be a father. Turned out his family has neurofibromatosis, a potentially horribly disfiguring and deadly disease. That's my fairy tale for the day.

I missed the punch line. Her daughter has the gene.

Sorry I'm replying rather late, I spent yesterday and today at my best friends house! Thank god, I don't want to go to a gyno who knows nothing about LS and has to treat me for it! And although I have been stressing and it's making it worse, maybe you're right...I don't want a biopsy so I need clear symptoms that it is LS! (; okay I understand now, sorry! Good though, I won't be on birth control for a while so there's no need to worry about that! Right?!? I mean at this point I'm kind of questioning what isn't wrong with me! You're right though, I've read posts from not only you but from others on different forums on how eating healthy can make a huge improvement in LS so whether I do have celiac disease or not...I should change my eating habits as it is not as good as it should be. Ugh scratching is so hard not to do...especially lately, but I'm trying very hard not to! I wish I was artistic!!!!!! but I am actually very into all things music and singing, so music always puts in me in a much better mood and place. You're right, thank you so much for helping me out and think better about the whole situation. I'm still young and I'm luckily getting this dealt with so early. You're my inspiration Morrell! ((: you are also very right on that! It seems as if the people who think they are so high and mighty get it the worst. So all and all...we all have our problems! 

Mila, I'm happy to hear you have someone close to spend time with.

I've been a little skeptical about the importance of diet in LS until now. For this year since my diagnosis and since having such sudden atrophy I had to give up sex, I wasn't willing to make any changes to my diet, which is already super-healthy. But now I'm looking back at the previous two years with my new husband (new by old lady standards) I see things that probably triggered a bad flare. I let pleasing him dictate some of what we ate – snacks. The worst things were ice cream, chocolate and chips. In a year or two I ate more of that stuff with him than I'd eaten in the previous twenty years. I just cringe when I think we were eating large chunks of cheap 'French' chocolate almost every night for months last year. Two summers ago it was two bowls of ice cream a day.

We stopped all that about four months ago when his doctor told him to lose the 25 pounds he'd put on quickly. My LS has been getting better. But each time I make an exception and eat two butter tarts or an ice cream cone, I get blowtorch the next day. So my next move has been to remove the two tablespoons of sugar a day I've had in my coffee. I'm trying maple syrup. No more ice cream cones when I'm out, no more big desserts in restaurants, no more butter tarts.

My white patch has almost completely gone pink. The red ring around my anus has faded and isn't sore. I haven't had an open tear in a while.

Mila, I'm not saying for sure you have the same food triggers I do, but I am saying you must keep food in mind as something you have control over. I know it's hard at your age. I used to get huge cysts on my head and boils in my groin as a teen as well as the itching. I ate so much chocolate – I've never been overweight, so I wasn't thinking about calories. But I believe I was already a bit atrophied by age 19 when I first had sex.

I can easily look back over the decades with my clear memory and see times of LS flares coinciding with times of stress and stress eating – chips, chocolate and ice cream.

Music! That's the best thing of all! I always wished I could sing – it's such a direct way of making art. Fabulous.

So, don't get bummed out. As I quickly discovered when my traditional Chinese doctor (12 years ago, for one year) made me cut sugar, cutting sugar instantly stops the cycle of craving. So I'm not feeling at all deprived. I actually feel all-around good.

Now, let's assume you have the best LS gyno in the US. It's 95% true. Why be miserable for three days for that 5%?

Looking forward to hearing about the appointment.

And DON'T SCRATCH.

Thank you Morrell, these past two days I have also been spending a lot of time with family doing fun trips to beaches and stuff! It has definitely helped with getting my kind off of all of this. Wow that is amazing, it's great that you have found sound that not only helped him out...but you as well! I am very happy to hear you have found somewhat how to keep your LS tamed and from preventing it to flare up. I wonder if the food I eat makes a difference in my LS as well as I don't eat as healthy as I should. I understand, eating good is definitely not easy as teen! Just like you, I have never been overweight so I eat anything I want just because I know nothing will happen...which isn't good. I can definitely see stress having a huge impact on LS, it has on me...well so it seems lately! Thank you Morrell, music indeed is the very best! Very true Morrell, thank you for that! I haven't been worrying as much which is good but thinking that in 9 hours I will be at the gyno and getting a biopsy...or hopefully just simply getting diagnosed...is making me very nervous and scared. I'm scared for what she has to say and I'm scared of how I'm going to handle it, I know I'm going to cry as it is a touchy subject for me. Not looking forward to this at all, please wish me luck!!!!!! xx

Mila, you can cry. If the doctor makes a diagnosis, she will have lots of compassion, I'm pretty sure.

I found out Monday night that one of my best friends (age 64) has it, too. She's had it twenty years and no diagnosis from five doctors.

I'm so sure your life will be good. Looking forward to an update after. Glad you had fun at the beach.

Hugs.

Hello Morrell, so I don't know what to think about today's appointment. The gyno said it didn't look like LS and supposedly a bit came off when she touched it with a q-tip? I don't know, she said it looks as if it's irritated from shaving but I rarely shave where I have it so she gave my hyrdocortisone cream to use for a month and it that doesn't get any better than to come back. My mom was very relieved, and I sort of was too...I just still have that feeling that she was wrong which is dumb to think as she is a professional but it just doesn't look right to me. It doesn't explain the itching I've had forever. I am not trying to say I want to have LS, I don't trust me...but I just am not 100% sure what to think at this point. I guess I'm just going to have to take it day by day and see where I am in a month. Thank you so much for being so supportive and helping me along this roller coaster Morrell, it means a lot!!!! xx

Sorry I'm writing again, but I've been looking more into it and I don't know how shaving can leave white, raw patches down there. I wish there was a way to show you and ask what you think, I just don't understand. When irritated by shaving, don't you usually get bumps...not white patches in both sides of your labia? I wish I could have spoken up more or even thought of these questions when I was in the gyno. I'm stressing myself out way to much over this, just please let me know what you think about all of this. Thank you Morrell!

Hmmm, well, using the cream for a month and then going back – that's just the doctor making sure it isn't a short-term condition. I was never diagnosed with psoriasis – they called it eczema and contact dermatitis and did allergy tests. In my forties when I was finally diagnosed it was because I mentioned it running in my family. This was proof. Psoriasis is very hard to treat and there's no cure, so they don't want to give you that kind of news prematurely.

The only thing this has to do with your case is my point that doctors like to be really sure. She doesn't want to say something that will scare you unnecessarily, or have a second doctor say she was wrong.

I've only shaved once in my life and it was horribly itchy. I really am baffled by this new trend. It's not unreasonable for the doctor to want to eliminate that as a possible cause.

I looked at pictures and knew I had LS ten years before I was diagnosed.

Use the cream as directed. It's pretty weak, but it may work.

Watch you sugar intake. Two butter tarts one day and it's Itch City the next for me.

And DON"T SCRATCH! Enjoy some more nice summer days. Work on your diet, find your moisturizing routine, get out of your wet bathing suit right away, don't wear tight jeans. You have lots of control over this.