WHat I learned at the women’s health clinic today
Posted , 9 users are following.
Hi everyone,
Most of this information will not be new to you but it may help someone.
I visited the women’s health centre in Ottawa, Canada on a riverside drive (Dr E Campbell) and found him to be extremely helpful and informative, where my other doctor was lacking. Here are the takeaways from what’s i learned or brushed up on:
1. Lichen sclerosis can’t be cured but it can be managed. We don’t know too much about it yet.
2. Clobetesal usually works for most people to manage the symptoms quite effectively. Use it in the amount you need to keep your symptoms under control. (For example once per day twice a week if everything feels fine and normal, more often if experiencing a flare up). Apparently it comes in other forms. I’ve only used the cream. He seemed to think the cream is best.
3. Lichen sclerosis only affects the exterior, so if you are experiencing pain during sex internally, that is caused by something else and you should have it examined. I found out my uterus is at a different angle than most people’s. Likewise my bladder issues are separate from the lichen sclerosis. So if it hurts on the exterior or at the opening, that probably your lichen. Internally, it is something else.
4. Lichen sclerosis, if well managed, shouldn’t affect pregnancy or child birth. A c section is a good option if there are vaginal concerns at the time of birth. But really he told me I do not need to worry about this.
5. I knew the clobetesal was helping reduce my cuts/fissures/cracking but I did not know if it was also working to prevent the fusing/shrinking of labia, clitoris, etc. It is.
6. Even though it frustrates me to be told “do what works for you” because I just want to be told the right thing to do, bc we don’t know everything about this disease, DO do what works for you.
7. He seemed to think eating habits were unrelated and he did not advise me about soap or underwear or any of the stuff discussed on this forum. If that works for you, great, but I did not get confirmation that it’s a known or recommended help.
8. I learned that you have to take your health into your own hands. If your doctor was unsatisfactory, find someone else. I demanded to see a specialist. I jumped through hoops to get there. I get the impression the visit was sort of unnecessary I. The sense that I am physically fine. But mentally, getting this information from a trusted professional who TOOK THE TIME to patiently walk me through it was a godsend, even if I already knew most of it from reading online. Don’t settle. Find someone who will do the same for you. Get the person’s card so you can call back if you need to. And don’t be afraid to see a man. In my experience he was more helpful than my female doctor. Arrogance, ignorance and impatience knows no sex/gender and neither do helpfulness, kindness and knowledge.
I hope this helps.
Xoxoxo
9 likes, 11 replies
Mojuan elle2424
Posted
I think the problem is that we all have LS at various stages, information shared is so important to each of us.
This forum helps so many but it is also so important to follow ‘what works for you’ but it takes so many trials and tribulations before we get there.
I am pleased to be included in this Forum and wish each and everyone comfort and positivity.
Thank you to you all x
Blueplum elle2424
Posted
Hi Elle, thank you so much for sharing your experience. It’s all a learning curb, no one doctor is fully aware of how to treat/deal with his horrible disease.
Please could you clarify what he said about fusing, labia minora disappearing ?
As this is the case for me, use to be shy & reluctant now i don’t give a stuff if it’s male or female examining me, as I have 100% hope that they may tell me something that could resolve this horrible disease.
elle2424 Blueplum
Posted
So I asked “if the clobetesal is managing my fissures/cuts, is it also managing the fusing of body parts? Or even if I’m not experiencing flare ups do I still have to worry about fusing?”
He said no. He said the clob is helping to prevent cuts/fissures and the fusing. I am lucky that I haven’t experienced notable fusing since I started using the clob.
Reading this forum I know I am lucky that clob works for me(now) as clearly it doesn’t work for everyone and there don’t seem to be many great alternatives
I asked him if I needed to inspect myself regularly, use dilators etc and he said no. But I still will. Keeping track of our own health is vital. And the clob May be effective right now but it may not be forever so getting complacent is not a good idea.
Guppy007 elle2424
Posted
elle, 'I asked him if I needed to inspect myself regularly, use dilators etc and he said no' sorry but this guy knows nothing about LS and you no doubt paid a fortune to see him..he is giving out terrible advice.
nanc0595 elle2424
Posted
claire12259 elle2424
Posted
I’ve always found there is a distinct and direct reaction to foods that I eat/don’t eat. Many fund the same
X
elle2424 claire12259
Posted
Guppy007 elle2424
Posted
Hi elle, whilst I am happy that you felt you had a good appointment with your doctor almost all of the points that he mentioned I cant with. I have gone down your list.
2... Many of us dont use the steroid cream twice weekly, its super strong and we use it only when flaring, which is what some other doctors advise...and so depending on who you see will determine whether you use it regularly or just for flare-ups.
3....'Lichen only affect the exterior' This is wrong as intercourse is painful for many women with Lichen Sclerous
4.....'Lichen sclerosis, if well managed, shouldn’t affect pregnancy or child birth'...thats not true either, many women find that their Vjays do reduce in size, they shrink and the opening becomes much smaller which for some will make childbirth more difficult.
5....'I knew the clobetesal was helping reduce my cuts/fissures/cracking but I did not know if it was also working to prevent the fusing/shrinking of labia, clitoris,'...the jury's still out on that one
7...'He seemed to think eating habits were unrelated and he did not advise me about soap or underwear or any of the stuff discussed on this forum'. in fact, diet plays a HUGE role.
I haven't mentioned all of this to offend you but it is important for new people reading this to know whats what.
As I said, if you like him that's great, it sounds like he wanted to help, but remember many of the doctors dont really have all the answers...although they would like you to think so.
linda87994 elle2424
Posted
Hi Elle, some good points there. Clob doesn't work for everyone. I personally can't use it as I had a huge reaction to it and it didn't work. I have been eating the same things before and after Lichen Sclerosis, so for me what he says is true about diet. The pain during intercourse is due to vaginal dryness which is greatly reduced with Replens, a vaginal moisturiser, which is available from Doctors. It also helps enormously drinking 12 glasses of water a day if you can as it dilutes your urine and helps with stinging and repeated UTI's. And lastly use what ever works for you. Moisturise, moisturise as much as you can. I can only use 99.9% Organic Aloe Vera Gel as everything else I tried seems to burn and irritate. You will get lots of good tips on the forum, just use what works for you, were all different x
j02359 elle2424
Posted
Hi there, so pleased you have found the right doctor. It makes a great difference. My doctor isn't that convinced by diet changes either, although she does say that beer/lager (yeast) and too much sugar create problems. But more significantly she agrees with your doctor about not completely stopping the Clob - she says that the itch is quite an advanced symptom of a flare up and that to keep LS at bay Clob is required, although some younger women go into full remission. I think it's all about finding someone you trust. Every best wish.
Nancy_K_B elle2424
Posted
Elle - I'm so glad you found a Doctor who must have had a caring, winning personality to make you feel so comfortable. As other have mentioned here already, some of the advice doesn't jibe with our EXPERIENCES. The diet not affecting anything is not true for me.
I don't know if you asked about nutrition by any chance, did you? I'd love to hear. My apologies I can't remember details form everyone, but I know you haven't been on here very long so I'm not sure you've seen my article on what i found about about autoimmune nutritional protocol that takes off from Vitamin D deficiencies. Have you? did you by any chance ask him about vitamin D status?
If he lumped nutrition in with diet then probably he doesn't know about the almost at this point massive research into vitamin D deficenies world wide that affect autoimmune diseases, like LS ( which I found was only proven in 2012. (it took me 3 months to totally make the list that is aiding me).
I"ll be interested to here more. Thank you.