New and scared
Posted , 9 users are following.
Hi, I was diagnosed with Lichen Schlerosis a few months ago after suffering a year of pain and unbearable itching. Before finally getting to see a gynaecologist, I was given lots of different creams for thrush. I've had to take several courses of antibiotics for various infections (bladder, tooth etc.) so I did test positive for thrush a few times. At other time, the results came back negative leaving me very emotional and frustrated. So when I saw the gynaecologist, he described the skin as "melting."
He said it was very early onset Lichen Schlerosus and was seemed very triumphant in finding the diagnosis. I was initially relieved. He told me to stop having baths, never use soap or let any products (shampoo etc.) drip down my body in the shower. He said to wash my hair over the bath rather than in it, and wash under my arms with soap over a sink. He said if the symptoms don't clear up, go the my doctor and ask for Lotriderm which is a steroid cream.
I was still uncomfortable weeks after, so I did get the cream. For a while, following his advice, I did feel an improvement. However, I've now had another bladder infection so another course of antibiotics. The infection has cleared up, my doctor did another urine tests after the antibiotics to be sure, but I still have itching.
I feel very scared and lonely, with a condition no one can see but me. I don't know if I'm allowed to go swimming - which I love - or ever have a bath (even just plain water) again. I also do not know if the itching is a the start of a bladder infection, thrush or the lichen schlerosus as it tends to move places.
My husband wants a baby soon, I'm 28 and feeling the pressure of missing the chance to have one. But the thought of intercourse is frightening, not only because of the pain but because of the possibility of another bladder infection which I seem to be prone to getting, which starts the cycle of infection - antibiotics - thrush off again.
I'm also feeling distressed at what I've read online. Neither the gynaecologist or any of the doctors I've seen have mentioned fusing. I don't seem to have this yet, but the thought of it alone is absolutely awful. I am scared of what is lying ahead of me. The doctors I see are not very sympathetic either.
The gynaecologist also said he won't need to see me again, but I feel that if this condition is only one that can be managed and not cured, surely a yearly visit would be appropriate to make sure it hasn't got any worse?
Other than the Lotriderm and copious amounts of thrush treatment I use whenever I seem to get really bad, I use plain natural yoghurt sometimes to help with the itching. I don't know how to avoid the bladder infections either, as no matter what I try to avoid they seem to happen anyway and I'm increasingly miserable and paranoid. I feel like I spend all my time thinking about these conditions, and feeling isolated and embarrassed and completely defeated.
Can anyone recommend what I can do to try and get some sort of control back over my life?
0 likes, 26 replies
patricia22944 SomebodyHelp
Posted
beverly52803 SomebodyHelp
Posted
This may seem off topic but it concerns me when I read what people from the UK say about seeing appropriate doctors. I am no fan of the US system of healthcare (we barely have one other than pay and pay some more), but I do get to see a gynecologist if I want to. No referrals needed. I have seen them since I was first prescribed birth control pills in my youth. Have never seen a GP for gyn issues as I would never expect them to be that knowledgeable. I think statistics show that people in countries with national healthcare are generally healthier, but having to wait so long to see a specialist just doesn't sound right to me.
One recent visit to a gyn (hadn't seen one for 3 years) and I was diagnosed with LS. Turns out she is also a menopause specialist. Can't imagine having to see a gauntlet of 8 doctors as that can only add to stress. In my case because I am 70 (already diagnosed with AV) the gyn told me the LS was due to too little estrogen. I had hoped to avoid hormones due to cancer in the family, but can no longer avoid using estrogen.
I am hoping to get through Nancy's info, but it is information overload for me. I already get so many emails from the AV discussions it feels as though I am on the computer too much of the day, though I am very grateful for this site. But I do get overwhelmed with too much scientific info. Am I alone in this? (We in the US are also going through political hell which keeps me reading even more.)
BTW I have eaten a fairly healthy diet for most of my adult life so I'm not sure about the nutritional component.
Have tried to go easy on the wheat and carbs, but I always fail. And gluten free products can be nutritionally wanting.
Nancy_K_B beverly52803
Posted
Awwwww Beverly - haha - isn't it more important to read nutrition to the point of overload for your own health INSTEAD of permitting the media to slash you to pieces with the minute by minute political "hell" we are living through here right now? Don't read it; don't listen to it - unless you are a congressperson you can't do a dang thing about the situation from here. oh, well yes, we CAN use prayer and do it daily and visualise for the best and highest outcome for all. smiles.
beverly52803 Nancy_K_B
Posted
I'm more into voting and advocating that others vote and protest than I am into prayer. I also think it's important to bear witness to all that is happening politically. This is our country and I feel that ignoring its debasement is at our peril. I am in MA and have faith in our reps, but without a majority in DC the hideousness will only continue.
My health is obviously important, but I don't think it's one or the other. I'm only 2 months into the LS experience and from what I read here I find everyone's symptoms and treatments to be varied, to say the least. Do you see a gyn or specialist of any kind or are you treating yourself according to what your research has turned up?
Nancy_K_B beverly52803
Posted
HI Beverly... this full moon had me lying awake in bed for 3 hours so I just got back up ha!
Oh, indeed I absolutely do have a wonderful integrative physician who is also a cardiologist. I found him 4 years ago because I couldn't believe the intentional nutritional ignorance of the standard cardiologists. I went looking for a second opinion (hehe I never knew I had a wonky heart with an electrical short until the wellness visit for starting Medicare - then all of a sudden they were talking about 5 year life expectancy if I didn't take statins! my eye!).
I searched online high and low and found a man in the Netherlands who fixed his low ejection fraction (output of the heart) with the help of his research oriented physician. Together they had read over 700 medical documents from around the world (some of them from our own National Institutes of Health) and developed a nutritional protocol that got that otherwise strong ocean sailing man back in sailing the North Sea form. Yep, I thought i'd follow his wonderful lead that he so graciously created a free website IN English for anyone to follow.
So that is how i knew I wanted an equally committed cardiologist who would be willing to work with me. Since NONE of the 33 cardiologists at Asheville Cardiology Associates were integrative oriented, and I even had one shove my papers from the Dutch doctor back in my face, I felt very very grateful when I found out that Dr. Bailey only one town over, Hendersonville nc Had actually stepped down from being Head of Cardiology at the much smaller Adventist Park Ridge Hospital systems to start a new Integrative Medicine department. WHY? because he realized that the way cardiology was being practiced wasn't solving things.
ha... and oh yeah. later when this LS came up 8 months ago, he referred me to one of their gynecologists. SO, yeah I got one - if I ever was crazy enough to go back. JUST like so many other women here I discovered that the woman could care less, saw me for all of 6 minutes or so and walked out of the room having signed off on a script for clob.
OH, I love that intuitive man Dr. Bailey.. haha guess what? when i saw him several days later, and I was standing in the exam room unsmiling when he came in, he immediately said, "Yeah, yeah I know, you don't EVER have to go back, we just needed the diagnosis on record."
I'd worked with him for 2.5 years by then and we were able to laugh and joke. OH? those Netherland papers for Heart Failure? He had politely received them out of my hand, and sat on the edge of his chair and remarkably quickly, went through the whole page of Nutritional Supplements line item by line, and checked off yes what he said I needed, and what he didn't think i needed. That fast, that capable.
So come to this LS and he said take MORE Vitamin D3 and more magnesium (they are well known heart meds for those in the know).. I don't remember what else, but he knew I'd go delve deeper and we both knew that steroids are not the answer.
I brought him the same 17 pages I've shared with you all 3 months later and He THANKED me. we looked them over together and I asked for a blood test or two that isn't on the regular CBC panel. Now that's a physician of the Hippocrates type.
Guppy007 Nancy_K_B
Posted
If you get the right specialist it is the difference between night and day.
beverly52803 Guppy007
Posted
In my case I have an HMO and have to choose within the network. Quite limited, but at least my new gyn is a menopause specialist. I will mention the LS to my GP at my yearly physical, but I can only assume he will think I'm in good hands with the gyn. He is not apt to know more. I do want to find out about the possibility of a vulva specialist. Never heard of that before reading these posts.
Guppy007 beverly52803
Posted
Hi, I think all of us would use a vulva specialist if they were widely available. Unfortunately, that is not the case and so one can only hope that you are seen by one of the 'good doctors'.