Dismissive dermatologists
Posted , 2 users are following.
I have just had a derm check up, haven't been seen since last July.
The nurse was kindly and encouraging and the dermatologist the same. The angiokeratoma I had been worried about was confirmed as just that, examined with a special light. This was done because it had bled a few months ago. She did explain angiokeratomas to me which was helpful. Other than that though it was a cursory examination (not at all thorough) and I was told I was doing well: skin looked healthy, and to persevere with my regime of washing and moisturising ointments, oestrogen ointment and steroid when needed. No mention of further fusing I have had. I am pleased that they believe I am ok at the moment, but I always expect to learn more and don't. In answer to my question of the inevitability of further deterioration, I was told that doesn't necessarily happen with continued careful management. Does this mean I will live out my life with the symptoms staying as they are now? I doubt it as things have got worse since diagnosis 7 years ago.
I guess I am expecting too much and dermatologists don't know that much about LS or (specifically) vulval skin (as Andrew Goldstein suggests) so who do you turn to? Questions about LS's impact on your life and sex life are just batted off every time.
At the end of my consultation, I was 'patted on the head' like I had handed in a good piece of homework and told (not asked) that they will see me in 6 months time again and then discharge me back to my GP.
That's ok I guess, as they obviously can't help me further, but like so many of us on this forum, I am frustrated that we are just expected to get on with this disease and that there seems to be no real research going forward to help us. I got handed a written sheet with out of date websites to visit which tell me the same things I already know.
I will keep up my careful management but I can now see why my GP told me some years back when I asked her what long term experiences other women with LS have had, she said that was hard to say as they 'stop coming to the surgery'.
0 likes, 4 replies
sarb73328
Edited
I shall be interested to see if I get any comments on this discussion because I no longer think these posts are being seen and read by others - it was far better when we were getting email alerts, which have now been stopped.
does anyone know of another LS forum that is more active?
Guest sarb73328
Posted
Hi Sarb! Eggbiscuit here. This forum messed up my account and so I deleted it and got back on under this name. How are you? I am back to researching and have noticed a definite connection to digestive function. Am afraid to say I am "getting better" but I have had quite a few good days (not today) in the last two months. Been taking probiotics and collagen almost every day...Let us hear how your are.
biscuit
sarb73328 Guest
Posted
hi biscuit
you are the only one I hear from on here. I will pm you to reply to your last message too.
glad to hear you are feeling a bit better and that you have found probiotics and collagen helpful. I would not know how to access collagen in UK. I imagine I would need a prescription from doctor.
I am steady at the moment which is surprising given that I am stressed by being in lockdown. Fingers crossed not flare ups.
keep in touch
Guest sarb73328
Edited
Sarb, You can buy collagen peptides at most grocery stores. Collagen is really amino acids. I have been taking it now for 2-3 months. Not sure whether it is truly helping but it's worth a shot.