Trying to raise awareness

That is great! I just had a doctor tell me I could have it worse. 😣 I think we all need to be more aware that many docs are very insensitive to our problem. The more awareness that this exists the more that other women who have no support system will hopefully find groups like this. I am in the US but somehow found you guys. I am SO thankful for all of you. Also my biopsy came back negative for cancer so thank you (all of you who gave me your sweet wishes) for your support! I am the person whose twin 5 yr old granddaughters have it also. Thank you!!

Brilliant. Well done and I hope they print it. I will look out for it. I really think there should be more awareness of LS and more research. As one who has suffered a casual attitude from doctors I am wanting the medical profession to appreciate the impact it has on us. 

I agree!!

Let us know B o S when it is published 🎉🙏🏻

In meantime if you need any info from the LS Army I am sure there are many, I for one who will step up to the mark and be counted 

Well done indeed 🥇😘

Good job, Bridge of Sighs. Would you mind sharing the link to your letter once it is published? I am in Canada but I would love to read it. I also have entertained the thought of putting something out there in the public domain. Still thinking about it for the moment... : ) My doctor has not been very accessible and, based on all the testimonials I've read here, did not provide me with the best advice to stop the LS from progressing so quickly. Luckily, I learned a few things from the ladies on this site and find their combined knowledge and experience with LS a much greater help than my gyno has been. I think we really do need to advocate for improvements to the system and better treatment for (mainly) post-menopausal women.

Metta

 

Here's a multiple answer to all the comments below...

I don't know if or when they will print it, I've never written to a paper before, but if I see it, or know about it I will make sure that the link goes up here. Could other Guardian readers also keep an eye out too please, our local shop sometimes sells out before we get there. They haven't responded to tell me they've got it.

Sedg, the one thing an otherwise useless consultant told me, was to think of LS like diabetes. It won't go away but it can be managed so that you have a routine and otherwise forget that it's there most of the time. That really helped me to reframe how I think about it. And Borax is just great. It's revolutionised my life.

I've posted this on other threads, but yesterday I had a check up by the new, brilliant doctor I've found. She's a GP but her speciality is skin. She was thrilled with my progress. She says that she sees LS so often that she now thinks that nearly every post-menopausal woman will get it to some degree at some point in their lives. She is really angry at the ignorance and the fact that most doctors think it's rare. I gave her the link to the 'Experiment with Borax' thread and she said if/when she gets LS she'll definitely use it herself. She says that medicine often follows natural remedies, and she'll put other patients in touch with me (I offered) as the worst thing is the loneliness and isolation. Obviously being banned in the UK she has to be careful what she says.

galen, I am so sorry to hear about your granddaughters. That's so hard, to have it so young. I've heard that as hormones start to develop, it can go away. I hope that's the case for them.

Awareness; I've posted this before, and elsewhere recently, but a couple of years ago I went on an awareness crusade. Thinking that pharmacists were the first port of call for itching or painful sex, I marched into any pharmacy with a female pharmacist and told them about LS. I was shocked at how many didn't know about it. The younger ones were the most open and a couple said they'd go away and research it. The older women tended to pretend they knew all about it and obviously didn't. If anyone is up to it, I reckon there's work to do there. I might start another crusade. This time I'll have a printed sheet to give out with links to sites and general advice on symptoms, which I can leave behind. I contacted the Pharmacists supervisory body and offered to do a CPD talk, but they weren't interested, I didn't even get a polite 'No thank you.'

This site is a life saver. Thank you to all you lovely women who write here. We'd all be so alone without each other.

All the comments above I meant. When you're writing, they're below you on the page. Sorry for any confusion...