Is this a cruel joke?

Posted , 9 users are following.

Diagnosed at my last gyno visit a few months ago. She told me it was "no big deal" and she had plenty of patients with it. Just recently noticed the "shrinkage." After reading about this disorder, I'm feeling very down and very sorry for myself. Honestly, I've lived a pretty healthy life and this seems like a particularly crappy thing to have to deal with since there are very few people I will even tell about it. I'm sure you guys have been through this phase, but I am at the beginning of this journey and feeling bewildered and sad. Thanks for listening sad

 

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  • Posted

    It does feel like one!! Most aggravating condition. Itching, burning. I have the fusing also. Every time I see the GYN Oncologist, she rips my skin and makes it bleed, it's sore for awhile. Wish you the best with it, seems like you could use some compassion from your medical people.

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    • Posted

      Seriously? She rips the skin apart? That's awful. I can't see that being a good idea. 

      I wrote a post nearly 3 years ago about the success I've had in using borax as a treatment - An Experiment with Borax. Check it out, so many people have tried it and also had a ton of success. 

      There's been another post that I've found very interesting that talks about using aloe and turmeric essential oil. Both of those seems to be really helping people as well. 

      Sorry you've been added to the lot of us dealing with this horrible disease. But there is light at the end of the tunnel, and it may not be a complete eradication of the disease from our bodies, but there can be remission. Check out the two posts I wrote about and come here whenever you're feeling stressed or worried (those two emotions really play well with LS, or not well), the support on this forum is amazing.  

       

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    • Posted

      Hi Ruth,

      Yes, compassion and knowledge are running short in the medical community. I suspect I have autoimmune issues as I have another auto-related illness (not serious, just an annoyance like this). Today someone suggested an awesome PCP and I was able to get an appointment with her. I am feeling hopeful that someone will be able to piece everything together. I wish you comfort and healing with the LS. xox

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  • Posted

    I was diagnosed a few months ago. How old are you? I am way past menopause and knew for three years I had vaginal atrophy but was reluctant to use hormone cream. My gyn said my LS was due to too little estrogen. According to what I have read one in 300 women get it. I'm surprised your doc says she has plenty of patients who have it. Has your doc prescribed hormones and or steroid cream? Everyone here uses a steroid along with various treatments like moisturisers, rinses etc. which you have probably read. It seems to affect people differently. Do you have discomfort?

    Some are on special diets. Like you I live a healthy lifestyle and eat well, but I don't think it matters. Some have what they refer to as flare ups. I haven't experienced that. Just a general drying and shrivelling of skin that I thought was caused by atrophy. What brought me to the gyn was a fleeting BV infection. It's almost under control and the steroid and hormone cream seem to be working. You just have to find the right balance for your body, from what I can tell.

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    • Posted

      HI Beverly,

      I'm 50 and have not been through menopause. Last yearly gyno exam, my dr noticed a whitening of some of the skin on my vulva and did biopsy (ouch) to confirm what she thought, LS. I noticed nothing before that except a loss of sensation. I am going to comb this forum for advice and I also made an appointment with a new PCP who's supposed to be phenomenal -- I have another illness that's considered autoimmune - it's called microscopic colitis and I'm wondering if I have a bigger autoimmune issue. My fear is this continued shrinkage... So far no itching yet. Good luck to you - I hope we all figure out this nightmare. 

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  • Posted

    Yep, hard not to feel down. It's a brutal disease that affects our most feminine parts. I'm blessed to have a very supportive and understanding spouse. I don't know what I'd do without him. But this forum has been an amazing resource as well. 

    As I mentioned in a response below, I wrote a post nearly 3 years ago, An Experiment with Borax which has given me and many amazing results. I've even had some unfusing. Borax is my go-to for a flare-up, but I've actually hadn't a major flare in ages. Keeping stress as a low is essential. 

    Another post about the use of aloe and turmeric essential oil has also peaking my interest. I have tried it, found it burned a little bit, but my mixing may have been off (everyone of us is a little different in how we react to possible treatments). What I read about aloe and LS sounds extremely promising though. 

    Anyway, there are treatments, natural treatments, that have been effective, check them out and keep voicing your feelings, don't bottle it up. Keep your skin moisturized, wear cotton panties, use toilet paper that has minimal chemical treatment (or get a water gun like they use in Asian countries). There's lots of amazing advice out there. 

    You're never ever alone!

     

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    • Posted

      Thank you, AllStar!

      Just knowing I have others in the same boat and for support makes a world of difference. My husband is also supportive but I assume this is basically the end of my sex life. I will check out your posts and I appreciate the help. I already ordered Emu oil on Amazon as read a few things about it. Sounds like people have been resourceful and it will be a matter of trial and error as to what works for each person. xox

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    • Posted

      One more thing...Just saw your borax post. So you mixed borax with water to make a paste and applied it 2x a day? I don't think I have discoloration yet - should I do it preventively? Just did a quick search and read the blog of a woman who ingest borax...so many questions. Thanks again AS - going to buy borox tomorrow!!

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  • Posted

    If you can I would change doctors. You need someone who understands. I’ve been told to “go home and don’t worry about it, it’s my fault, it’s because I wasn’t having enough sex”, it goes on and on. I asked if I was going to die from it and started to cry because she said yes. Then she literally threw the box of tissues at me. Another one just said I can’t help you anymore. At least she was honest. About this time I got really angry and disillusioned with medical profession who were happily taking my money but incompetent. I took control back, researched, found a great gyno. Quit my stressful job, changed up my diet and started my own care regime. Every morning and every night. It really made a big difference once I got my outlook in the right direction. Yes it is a s****y deal we have been dealt but I am managing to keep it under control and that is a huge positive.

    Good luck 😘

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    • Posted

      deb, A doctor told you you would die of it? Are you serious? I think I'd report that one for medical malpractice! Don't know what country you are in or what sorts of doctors you were seeing, but I didn't experience anything like that, fortunately.

      Three years ago I saw a new gyn because the previous one retired. She told me after a painful exam that I had atrophy and needed to use hormones. Explained as my sister took HRT and was at that time in stage 4 breast cancer I wanted to avoid using it. She then warned me I could have all sorts of problems and they could lead to cancer. I was shocked, went home, immediately got on the computer but could find no cancer connection. I sent the doc a letter requesting specific literature or website where I could find this info. She called me, denied the cancer comment and said it was up to me what I chose to do. As I was having no discomfort I did nothing until a recent visit to another gyn for a prescription for an infection and got the recent diagnosis of LS. Back to the internet and read that untreated LS can lead to cancer, but otherwise it seems to be manageable. I also have heard and read for years that sex is a good preventative for AV, but we can't all conjure up suitable partners as an antidote.

      I'm curious as to how you went about finding your current doctor.

      Have you posted your regime on this site? There are so many women and so many different discussions I have a problem remembering who is who and what works for whom, though I am keeping a notebook now in an attempt to have an easy reference source. 

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    • Posted

      Deb - OMG - that is atrocious. She should have her license revoked! my gyn is actually a lovely woman but she tends to downplay things; I'm sure she didn't want to scare me. That said, I would like to find someone who understands LS better - how did you find your great gyn? 

      Your words ring so true to me! Between this and depression (my whole adult life) and a digestive disorder that's autoimmune linked, I am thinking about quitting my stressful job but can't afford it right now. But I just ordered an autoimmune diet book and also booked an appointment with a great new PCP (supposed to be great anyway) who I hope can piece it all together. Either way, it's time for some lifestyle changes. XO

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    • Posted

      Your in the path with looking at changing your food up for sure. I tried to eliminate sugar and just use stevia. I am not a total saint I still drink wine. I was on clobetasol for 5 years. To be honest my dermatologist was the shining light through this whole process. I absolutely refuse to let them touch me unless they understand that if they split my skin I suffer for another week every time I go to the bathroom. I now use paw paw ointment in the morning after a shower and at night I cut open a vitamen e capsule and massage it in. If things feel not right I will spritz with salt/water and or salt/borax. Should I get the odd tear I use a baby cream (I have mentioned all this previously but don’t want to say the name in case this gets blocked) just message me if you need a brand.  

      Whatever you can do to eliminate stress levels will help. I only jump on this site occasionally now as it upsets me sometimes. I understand that there are a lot of feelings and mixed emotions, what works for some and doesn’t for others but sometimes some of us ladies forget we are all trying to help each other here. 

      Good luck with your new PCP 😘

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  • Posted

    Got told exactly the same way   nearly a year ago , me too being healthy too , was totally distraught 😭  still have moments wen I’m down and teary . When you get your  routine sorted and it’s not flaring you seem to forget about it and get on with your life  , hope you  feel a bit better about it soon . X

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    • Posted

      HI Dawn,

      yes, even during the day at work, I forget about it. But when I read or think about it, I can go down a very dark path. Sooooo happy to find this group. xo

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  • Posted

    I just logged on to this forum as have a diagnosis of lichen sclerosus et atrophicus - I have no idea how to treat this, just grateful not anything more sinister.  Just trying to find out what works for people.
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    • Posted

      Paula, how could you have been diagnosed yet not told how to treat it? What country are you in, what kind of doctor did you see and what is your age? I am 70 and was diagnosed 3 months ago. I knew I had vaginal atrophy, but did not use hormone cream as I thought it was possible to just age without resorting to them.

      The LS diagnosis has changed things. The gyn says mine was caused by too little estrogen. I am now using estradiol cream and a medium strength steroid. Is it possible your doc gave you no prescriptions? If so, make an appointment ASAP with a gyn or a dermatologist familiar with LS.

      As I understand it you want to get it under control with the steroid cream.

      The sooner you do this the better you will feel. Ask for literature. I was given a copy of an article written by a specialist. And keep checking out sites such as these. But be aware that some women have worse cases than others. I have minimal discomfort and am hoping the use of the creams will get it under control. Sounds like you may be at the same stage. 

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    • Posted

      HI Bev - my gyn gave me a steroid cream Rx. But i'm not having any itching - should I use it anyway? I used it for 2 weeks and stopped. Should I be using it continuously, even if I have no itching? 

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    • Posted

      MS, what directions did your doctor give you re using the steroid? The purpose of the steroid is to bring the skin back to a more normal condition.  When you got the prescription filled were there no instructions on use? If not, you need to call the doctor and find out just how you should be using it as steroids are potent. In my doc's words they help damaged skin, but can damage healthy skin, so they must be used with care.

      Do you have a follow up exam scheduled? If not, I would see a doctor who is more conscientious as you shouldn't be on your own making decisions about medications. It's fine to share info with other people who have LS, but keep your doc in the loop as to what you are trying. 

       

      I did not have any outer itching. Went to the gyn because I had an intermittent itch internally that I assumed was BV. I was pretty shocked to learn she found no symptoms of infection, but diagnosed me with LS. That was in May. In my case she said the LS was caused by too little estrogen so I have no choice now but to use estrogen cream for the original atrophy. Added to that is the steroid for the LS. I am now 4 months into the treatment and have had to alter how often I use each as to how I am reacting to them. I have been back to the gyn once so she could check progress. Says things are coming along nicely.

      I continued to experience the internal itch so asked for flagyl as in years past I had good luck with it. After one pill I could feel the itch subside, but after finishing them it eventually came back. Doc says my PH is affected by fluctuations in estrogen (hence the BV symptoms) so I am now using the hormone cream nightly (had been using twice a week). I use a little yeast cream along with the hormone cream.

      Initially I was using the steroid every night then had a reaction. Stopped that for a while, but am now using it twice a week per doc's instruction. I am in touch with the doctor re any changes. I do not feel qualified to make these decisions. I tell her what's happening and she gives instructions accordingly. 

      From what I read on this site everyone reacts differently to the LS itself and to the meds. Keep a log of what you are trying and the effects so you don't have to try to remember. It's always safest to keep your doc in the loop. Leave word with the nurse and the nurse can get back to you with the doc's response if it's too difficult to track down the doc.

      I did try an essential oil combination that was mentioned here, but 1st discussed it with the doc. She thought it would be too strong, but I was very curious so tried it. She was correct as it burned and I stopped even trying to use the smallest amount possible after a week.

      Good luck. I seem to be doing OK so far and am sure you will also, but you really do need a doc who is knowledgeable and will work with you.

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    • Posted

      ms. forgot to mention I use coconut oil both internally (chilled to make it solid) and externally for lubrication. Have been doing that for about two years. Doc is also very pro coconut oil. Says you can't be harmed by it. 

      If I notice BV symptoms returning I rinse with warm water with a bit of salt in it. Works well. Some women use baking soda, but I found that drying. After rinsing I use a bit of the coconut oil.

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    • Posted

      Thanks Bev. Yes, these are all questions for a doctor, yet over the years I find that patients are more informed about these conditions than doctors. Mine said to use the steroid cream for 2 weeks, then stop, which I did. I don't have itching now - just want to prevent further deterioration. Thanks again for your help smile

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    • Posted

      If you hv a steroid cream you should hv been advised how to use it. My Dr had me use it 2x a day for 2 weeks and then stop. I had no it hi g or pain, but it is necessary on the white spots. We hv to rub it for 90 seconds so it penetrates the dermis and attacks the t- cells which are attacking our own bodies. 

      I believe it is due to a weak link in our immune system and until we track down what the weak link is. I hv changed my diet, take supplements and moisturize when needed, but am now in remission after 3 months. 

      There is alot of very useful information here, but it can get overwhelming. What works for one may not work for others. 

      Good luck to you and hang in there! 

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    • Posted

      Thanks Karen! Yes, I agree that you have to get to the underlying cause and I know I have another autoimmune digestive disease, which my gastro also brushed off as no big deal and he also said that DIET HAS NO IMPACT ON IT. Are you kidding me?? Some of these doctors are very old school and I'm replacing them with more enlightened doctors, one by one. Changing my diet based on autoimmune/anti-inflammatory protocol right now, and I also decided I'm buying all natural soaps, etc. The fewer chemicals, the better. But it is very overwhelming - it's going to take some time to sift through all the information and draw my own conclusions and work with a doctor. The problem with this disease, since it's degenerative and disfiguring, is that it feels like I'm under the gun to do something RIGHT NOW. XO - butterfly

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