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What questions to ask my gynecologist.

Posted , 8 users are following.

Navymom
Navymom

Hi everyone.  I am newly diagnosed as of about 2 weeks ago.  I have a follow up appointment, per my request, with my gynecologist on Monday.  I am so confused regarding symptoms and treatment.

The day I was told I have LS, I had mild burning x 1 week.  Dr saw one white patch on the labia.  I was given a prescription for Lotrisone cream to be applied twice a day and make another appointment in one year.

I am looking for some guidance.  What questions should I be asking?  What information should I be expecting?

 

1 like, 12 replies

12 Replies

  • kathleen65757
    kathleen65757 Navymom

    Posted

    That is a bit unfair to send you away with no instructions! Yes, good idea to compose a list of questions written down and place down for discussion. Don’t be fobbed off as it is your right as her patient to be answered fully. 

    I am guessing you have had it confirmed. You need to be sure it is LS.

    Questions I would have asked mine very early on would include the following:

    Is there a cure? Will it change over time? How do I know if the cream is working? When is the best time to use the cream? How much do I use? What can I do to make it less damaging? What else do I need besides the cream? What moisturiser do you recommend and how often should I use it? 

    In other words, keep going until everything is answered to your satisfaction.

    • Navymom
      Navymom kathleen65757

      Posted

      Thanks Kathleen.

      I appreciate for your kind response.

      When I asked if he was sure that it was LS, he said yes.  No biopsy.

      I am so disappointed with this whole situation.  I have been to this doctor for the past 16 years.  He has seen me through many sad events in my life.  I really think he has dropped the ball on this one. 

      I have started making a list of questions,including your suggestions.  

      I always like to have as much info as possible.  I feel I can make better decisions for myself when I am educated about what is going on with my body. 

      So I hope he has given me more than a 10 minute slot for my appointment!

    • sarb73328
      sarb73328 Navymom

      Posted

      Once again a doctor has been uninformative and dismissive. So many of us have experienced the same. Diagnosis of LS is such a shock and affects us deeply emotionally as it attacks an intimate area and I have yet to come across a doctor who shows empathy for this. Kathleen's questions are important and any others you can think of. I have never been advised about moisturizing and that is imperative - I have learned about the best things to use from this forum. Good luck and let us know what responses you get. 

  • kathleen65757
    kathleen65757 Navymom

    Posted

    Ten minutes is not enough for sure! I attend a clinic and I am not rushed. A women’s hospital and the clinic is devoted to this every Monday afternoon. Appointments are booked each time you go. If there are concerns, it is four months, most common is six months and if you are going really well then 12 months.

    It does get better for you but I was diagnosed by a biopsy and a dermatologist many years ago. I now see both a dermatologist and a gynaecologist and they confer. Always women as well which I appreciate. I am sure a good male one would be fine but I attend a women’s one. I am just lucky that the city I am only an hour away from has a special clinic. 

    I wish you well.

  • Guppy007
    Guppy007 Navymom

    Posted

    Hi there, I don't want to sound totally negative regarding doctors and specialists but what many of us have found is that they are often uninformed and sometimes clueless. 

    That being said, LS can easily be visually diagnosed due to the classic white plaques of skin and the very long list of symptoms associated with LS.   A Vulva clinic is the place to go where they are likely to have seen  LS more often.

    Where some of the doctors really fail though is that they don't really have a clue on how to treat it long term or even guide you on the long-term effects you can expect.  For example my gyno never even mentioned fusing!!

    Honestly, you will find everything you need on this forum if you start reading some of the many posts from women that have this skin disease.  

    You have to be your own advocate with LS and learn as much as you can through reading as much as you can, and then you will likely know more than most doctors.

     

  • dani8979
    dani8979 Navymom

    Posted

    LS is a skin illness....an autoimmune one. I have hypothyroidism for some time now and have been at high risk in getting diabetes....I got it and LS came with it. Sadly, can not be cured, it can be kept at bay successfully with cortisone cream. After you finish the treatment you must keep the genital area moist at all times, ask your GP or the dermatologist and not the gynecologist to recommend you some creams or ointments you can wash with and moisturize. I use aqueous cream to wash twice a day and hydromol ointment to keep the area moist. Wash regularly with bicarbonate of soda, local baths...to prevent cuts, tears, irritations to the skin.

    Cut well your sugar intake, watch your stress levels, take vitamin D....check your thyroid and glucose levels.

    Good Luck 

    • Navymom
      Navymom dani8979

      Posted

      Thanks to all for great tips and advise.  I also have hypothyroid and diabetes Type II.  My A1c is 5.9. My sugar is well controlled. I also take Vitamin D everyday.  I see mt PCP every 6 months and have labs to check everything possible.  I also have a low B12 for which I take a monthly injection.  Oh and while I'm at it,  might as well share that I'm a breast cancer survivor, too.  Stage II with positive nodes.  Had bilateral mastectomy, node dissection and chemo. Almost 9 years ago. 

      So to say the least, I am p****d that my body continues to betray me .I also have high blood pressure, high cholesterol and osteopenia. Menieres in my right ear.  Yikes! enough already.

      So now I will need to ad LS to my list of ailments.  

      And I am only 58 years old.

      I have my list of questions ready for my appointment tomorrow afternoon.  I am bringing my husband with me.  Always good to have another set of ears.  

      Again, Thank you for posting and sharing your knowledge and support.

       

    • dani8979
      dani8979 Navymom

      Posted

      You are a fighter.....cancer is hard to go through, well done. Look after yourself best you can, a low cholesterol is crucial....try your upmost to get it down, change your diet. LS responds well when your sugar levels are down, thyroid too. Try to eliminate as many chemicals and processed food as you can from your diet. A plant based diet works best.....A low carbohydrate diet for life....Get it even lower your A1c.

      Watch your dairy intake....cheese, milk, yogurt, avoiding lactose like any other sugar. Eat organic yogurt with active cultures and mainly goat cheese or yogurt as they are lower in lactose than cow's milk. Need to watch the fat...boil, grill, steam and rarely fry your food, and when you do it use only mono-saturated oils like, extra virgin olive oil cold pressed, rapeseed oil.

      LS is tough emotionally and physically....get into a routine, as you need to manage it daily. It will flare up from time to time....

      Keep in touch and let me know how are you doing with everything.

    • Navymom
      Navymom dani8979

      Posted

      My Appointment went well today.  My doctor took his time and answered all of my questions.  He also apologized for being rushed at my last visit.  And he also "owned"  his error of not having a closer follow up for me.  So, I will use the Lotrisone cream twice a day for the next 7 days(feels Clob is too strong for me) and then stop.  and see him again in 2 weeks.

      So here is a summary of his answeres

      There is no cure, my case is mild and he believes that we will be able to manage it very well. My vulva anatomy is what would be expected in a post menopausal women of my age (some shrinking of labia minora tissue) Research is unsure if it is hereditary, and he is not a believer that food, medications or stress is necessarily a trigger. He recommends using olive oil/coconut oil for moisture.  Stay away from soaps.  Toilet paper is a no no. Sex is a good thing, use lots of lube and don't rush. (my husband loved hearing this)

      He printed about 30 pages of info for me.

      So over all, I'm feeling a bit better regarding my situation.

      And I would like to thank everyone on this site for their knowledge and support.

       

    • dani8979
      dani8979 Navymom

      Posted

      Glad you are feeling better.....wash your knickers separately in very mild detergent, for sensitive skin, no fragrance. No tight pants, leggings or trousers.....only cotton.

      Diet is important because of your other health problems too....

      Take care

  • dani8979
    dani8979 Navymom

    Posted

    Hello again,

    When you feel like and have time look up a Nancy K B who wrote about Nutritional support for autoimmune diseases - updated for several skin disorders. Talks at length about the connection between LS, diabetes, under active thyroid and so on....

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