1. Community
  2. Women's health
  3. Lichen Sclerosus

LS and Osteoperosis

Posted , 11 users are following.

Bridge_of_Sighs
Bridge_of_Sighs

I've been diagnosed with Ls for a few years now, but I've just recently had a letter from the Hospital, after a bone density scan, telling me I have a high risk of fracture. I'm gutted. I have none of the usual causal factors, I eat a good, mostly organic, diet with plenty of fruit and green leafy veg and dairy, I exercise (I've always had big dogs and walk miles), I never wear sun cream and get plenty of sun, I've lived in hot countries in the past too, I've never smoked, am a light drinker, haven't been on any medication and there's no history of it in my family. Nor am I overweight. I'm 54 and had an early menopause at 46, but that's surely not enough years for my bones to get brittle?

Does anyone else have LS and osteoporosis? are they linked somehow? How do you mange the advice to limit dairy and also get enough calcium? The received wisdom is that taking supplements reduces the body's ability to take it from food.

I've got a doctor's appointment in three weeks, the earliest I could get. Not hopeful about getting more than standard advice though. My brilliant, LS understanding GP has left the practice and I don't know where she's gone.

0 likes, 29 replies

29 Replies

Prev
  • Papaya2018
    Papaya2018 Bridge_of_Sighs

    Posted

    Hi everyone, I saw this discussion and thought that with your experience with LS/osteoporosis/doctors you might be able to help. I’m young, in my twenties. Four years ago I broke my hip in really weird circumstances - no fall, I was running and it broke clean through and took 3 years and 2 surgeries to heal. I had a million investigations at the time and the doctors couldn’t find anything to cause it, although a DEXA scan showed I had osteoporosis of the spine (but not the femur). After the final surgery worked, I was discharged from all the specialists because they couldn’t find anything. This week I went to a sexual health clinic because I thought I had thrush/some infection, and instead have been diagnosed with reasonably advanced LS that seems to have come on quite suddenly (I had a coil fitted last summer and a smear two years ago and definitely didn’t have it then). I find it very strange that I’ve had two conditions that are usually associated with post-menopausal women, but am still young, healthy weight, with regular periods. The doctor intends to just treat the symptoms of LS with steroid cream, but I don’t know if I should ask for further investigations into whether there’s some common cause. Does anyone have any suggestion for what direction I should ask for? It just seems so strange. (Ps sorry for hijacking the thread but I saw all these lovely women who have lots of experience of LS and osteoporosis and thought you might have some good advice!). 
    • kathleen65757
      kathleen65757 Papaya2018

      Posted

      Oh Papaya I think you need to find a very good specialist as you are very young to be dealing with osteoporosis. 

      You can control the LS but also need a good specialist for this too. Mine are gynaecologists and skin specialists at a special clinic at a women’s hospital.

      I also think you need to find the cause of your osteoporosis not merely treating it. So a very good specialist is important.

      You are very young so hope you can get expert help for both conditions.

    • brigitte_27336
      brigitte_27336 Papaya2018

      Posted

      Papaya, your at the right place , here everyone shares info and tips to try to get threw all of this because we all are left on our own. You’ll get great women with experience to help you out here xx
    • ann67814
      ann67814 Papaya2018

      Posted

      Hi Papaya, If you are in th UK the National Osteoporosis Society will give you lots of advice there is a helpline too so you can have a chat with a specialist nurse. You are very young to find yourself with both these long term conditions. Perhaps a check on your hormone levels in case your levels are low which could be linked to both problems. Certainly your GP should be concerned that you have Osteoporosis at such a young age. Good luck

    • Guppy007
      Guppy007 Papaya2018

      Posted

      Hi Papaya, LS is an autoimmune disease and often when one has one autoimmune disease they have a propensity to others..that's all I can tell you as I have no experience with osteoporosis and I have no idea if there is a connection at all...there might be. 

      If you take the time to go to the top of the page and click on Lichen Sclerosus you will see many older threads and it will help you to read some of them.

       

    • Bridge_of_Sighs
      Bridge_of_Sighs Papaya2018

      Posted

      Hi Papaya, I'm so sorry that you're dealing with this, and wish I could offer more advice, but I'm just at the beginning of the osteoporosis journey myself. So let's start with LS, where I've got a bit more experience.

      Firstly, you'll see lots of things posted here that people are trying. One thing that you'll notice is that everyone is different and responds to things differently. So, try everything that gets suggested, and you'll soon figure out what works for you. I started with the steroid cream as recommended, I think it halted the progress of the LS. Then I found this fab forum and haven't looked back. I don't use the steroid any more, haven't for years, and I'm stable and even having a tiny bit of reversing happening. Have a look at the thread 'An Experiment with Borax,' that's been revolutionary for many women on here - including me. Others use Bicarbonate of Soda instead (that didn't suit me). I spray a weak solution on after every toilet visit, to neutralise the acid which aggravates my LS, then I cover my undercarriage with olive or avocado oil containing a few drops of essential oils (a rotating selection of Frankinscense, Palma Rosa, Calendula matricaria or Turmeric) No more than 10 drops in total, and I rotate the products I use because the LS gets used to it. Each time I finish a pot or a bottle I go to a different product, then back to the first one. Others use coconut oil (I can't), or Emu oil.

      Stop washing with soap, I use Epaderm instead, which you can buy over the counter. It's a standard eczema product. Get the vaseline-like one in a tub, the ointment, it's quite soothing when you're itching too.  I carry a small tub in my bag for when I'm out and then use it to 'wash with.' Before I forget, if you do use the steroid, make sure you get the ointment, not the cream. It stays on better and apparently there's something in the cream that can irritate some people.

      Keeping oil or cream on below, always, stops the skin sticking, and we all hope it reduces the fusing a bit, or at least slows it down. Avoid perfumed products. There's been some threads on here about sanitary towels, I can't help there I'm afraid, but make sure I buy the most natural ones possible for my daughter. I remember getting sores at every period, which must have been the start of my LS.

      I've had to reinvent my wardrobe. I've gone from jeans, to skirts and leggings. That big chunky seam made me sore. Cotton underwear and go without if you can.

      Regarding the Osteoporosis, Kathleen is right. You do need a specialist. After my DEXA scan showed it up, I had a baseline blood test, and then some more tests, to check if there was any underlying cause. That's critical, otherwise you might only be dealing with half the problem. I didn't, only an early menopause which made me vulnerable.

      There's a lot written about bone health and milk and that it's not as good for you as has always been said - treat this with caution. I've looked at the medical studies on PubMed, which is a well respected site. They are quite contradictory. Some say good, some say bad. There's an overall review on there too, taking all the studies and trying to balance out the contradictory information. You want to make sure that there has been a large cohort, a control group, and that it's not just 9 people saying they felt better. Also, if the study has been referenced by other researches it's usually an indication that the studies have been done thoroughly. So from a cohort of about 170,000, it appears that yogurt and cheese are good for calcium levels, liquid milk is inconclusive, but probably good up to 200ml a day, not so good over that, and cream has a negative effect. No other dairy product were mentioned.

      There's a site called Osteopena3 which I found sensible, it's presenting you with information, she's an academic, but directing you to a variety of approaches rather than declaring a miracle cure.

      But first rule out any other possible cause, and get yourself to a specialist.

      I'm not on here regularly over summer, but wishing you lots of luck and hope you get some relief and the treatment you need.

      All the best

      Bridge

    • kathleen65757
      kathleen65757 cynthia40883

      Posted

      What are your tscores Cynthia? Up to -2.5 is only osteopenia and around that is borderline. Above -3 starts to get a bit more serious and worse than -4 is serious. I think a lot depends also on whether you have broken any bones. Sometimes bones are strong although not as dense as we would like. Read and research until you are happy with your decision. 

      I have resisted the drugs so far but am addressing with vitamin K2which puts the calcium onto the bones and out of the arteries. I have 180 mcg and am in Australia. Check your vitamin D3 levels and also look at magnesium as some people who have been deficient in magnesium have been found to  have osteoporosis. Diet is important as well to gain as much goodness from your food to help your bones as you possibly can. Exercise is needed which has to be weight bearing so walking or dancing etc is very good.

      Research for a while to give yourself time to understand and learn about your bones which will make you feel more in charge.

      All the best, Kathleen.

    • ann67814
      ann67814 cynthia40883

      Posted

      Hi Cynthia, yes I took the bisphosphonates for several years then changed to Denosumab twice yearly injections. My T score has Improved considerably but I still have Osteoporosis in my spine so I am still having the injections.

      I was until I was 60 when I suffered a spinal featherweight I would not wish on anyone.

      I personally would advise a accepting treatment. Good luck.

    • dani2169
      dani2169 cynthia40883

      Posted

      I had one Reclast infusion since my T Score was bellow -4.5 . Did improve a bit in this past year and I am about to get a second round . No doctor can explain why i am loosing bone mass . Now i got this LS . I am suspecting its all related

  • kathleen65757
    kathleen65757 Bridge_of_Sighs

    Posted

    I don’t limit dairy, why would I? No one has ever said anything about dairy to me for either condition. In fact, it is super important to have dairy unless you are unlucky enough to have an intolerance. What was said to you about dairy?

    I have LS and my understanding is that LS is auto immune but osteoporosis is connected to things like not being able to have hormone replacement due to two sisters with breast cancer and, more recently, a niece as well. Maybe if I had realised how important hormones were to the bones I may have risked taking HRT.

    I am lucky enough to have a hospital clinic that specialises in LS run by female specialists both gynaecologists and skin specialists and I have attended for nearly 14 years.

    Try to find something like that if you possibly can.

    Do you have your tscores to tell you how bad your osteoporosis is? Also, where are you as different countries have services to help and it is just a matter of finding them.

    I take vitamin K2 to aim the calcium onto the bones and have yoghurt with that as it needs the fat for best absorption.

    I don’t take the osteoporosis drugs but others choose to but I have refused them to date. I am at least halting it to an extent but I may have no choice eventually depending how bad my tscores get or if I can continue to improve my tscores. Time will tell!

     

  • dani2169
    dani2169 Bridge_of_Sighs

    Posted

    Hi, i am in the same situation as you. my level of osteoporosis is very high and i am 53 , Just got in my menopause a year ago and just got a diagnostic of LS.

    No doctor can explain why my bones are so so bad.

    I saw you posted here more than 2 years ago, Did you find out if the osteoporosis is related to LS?

    • Bridge_of_Sighs
      Bridge_of_Sighs dani2169

      Edited

      Hi Dani

      Gosh I haven't been to this site for so long, sorry not to pick this up earlier. I never found out if there was a relationship between the two, there probably isn't - apart from age and hormones. I decided to stay off the meds until my next scan to see if I could at least stay stable with diet and exercise. That was when i thought my scan was in three years, I rang the doctor to book it and found out that I'm down for a 5 year scan, which feels too long to experiment with, but it's only another two years now so I'll have to stick it out otherwise I'll never know if diet is working (and hope I'm not causing myself damage).

      A friend has just been diagnosed and we are having lots of chats, which is making me reassess my choices. She is going for the meds. I probably will after the next scan, if there's no improvement. A fracture is too risky to gamble with.

      You are very young to have Osteoporosis, and very early in your menopause for it to be a factor. Please understand that I am no expert on this, but maybe ask your doctor for a full range of tests to rule out any other underlying cause. That is what mine did , and it was reassuring to know there wasn't anything else causing it. Obviously you need to know if there is.

      Lots of good luck to you. I'm off to check the Osteoporosis forums now, though when I looked at them before there were some very cranky people advocating strange things and miracle cures so I didn't go back. I may just have chosen a bad time though. Time to give them another chance. There's also The Royal Osteoporosis society https://theros.org.uk/ if you are in the UK who give advice on the phone.

      By for now. I'll try to check in a bit ore regularly if I can.

      Bridge

Back to top
Prev

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.