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
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.
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
Hi, Can you tell me if u use any of the osteoporosis drugs? I have been avoiding them, but my doctors are not happy.
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.
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.
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?
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
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