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LoriAnn

Vaginal Dryness May Be Lichen Sclerosis

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I went to see my new rheumatologist last week and I feel like I am starting all over again. I gave him my records from the old rheumatologist which stated his diagnosis of systemic scleroderma. The new rheumatologist says that he thinks that it might be limited instead. My old rheumatologist thought that I had systemic because of the anitibodies my body was creating and my full skin involvement. I hate the way they look at you in the beginning. It's like you are making this all up in your head. I went there with a whole list of the symptoms I have had since this all started a year or so ago. He then proceeds to tell me that some of these symptoms have nothing to do with the scleroderma. I have read from the sclero forms that others with sclero suffer these symptoms also. I live in South Dakota and we do not have a support group here and I know only one other person with Sclero. She recommended this doctor to me when my rheumatologist quit practicing. I am so frustrated with this diagnosis process. I would like to believe that I have limited but I am concerned that I may be wasting precious time if he is wrong.

 

The day after I saw my rheumatologist I went to see a gyno for a pap. I have been suffering from severe vaginal dryness and irritation. I thought it was from Sjogerns. My gyno thinks I have Lichen Sclerosis. He did a biopsy (ouch!!!) I will get the results next Tuesday. He is 99% sure it is Lichen's but can't give me medication until he gets positive biopsy. In reading medical information Lichen's can be connected to Morphea sclero. I have not called my rheumatologist back to let him know this, as I want to wait until I get the test results back.

 

I am more confused and frustated than ever. What do I have Systemic, Limited or Morphea????

 

Does anyone out there have Lichen's and if so what type of sclero do you have?

 

Should I see another new rheumatologist for a 3rd opinion? (There are only 2 more in town.)

 

Should I go to a bigger city?

 

I am sorry I am rambling but I am so FRUSTRATED!!!!

 

THANKS FOR LISTENING

 

Lori Ann


Lori Ann

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Hi LoriAnn,

I'm sorry this is so confusing and frustrating for you. Unfortunately that is rather typical with scleroderma, particularly because most doctors and even rheumatologists often know very little about it.

"Limited" is still systemic sclerosis (scleroderma). It is only "limited" in the sense that the skin involvement is confined to either the hands and/or face. Otherwise, it can affect any part of the body or internal organs.

"Localized" refers to morphea or linear scleroderma, which usually affect only the skin, but may occasionally have some other involvement as well, though that type seems to have a normal expected life span.

So, if your rheumatologist was saying Limited, he was probably referring to systemic sclerosis and just making a distinction based on the location of skin thickening or tightening that you have now. (But, even doctors sometimes get these similar terms confused.)

Lichen Sclerosus does occur most often with morphea scleroderma. But there are distinct differences in skin involvement in Limited Systemic versus Localized Morphea and Linear...distinct enough that you could almost figure it out yourself.

Read about the Types of Scleroderma, and maybe that will provide you with some clue about what direction to take.

Also print out our free PDF brochure, What in the World is Scleroderma? and look at the symptom checklist for systemic. Perhaps even bring it to your next rheumatologist appointment, if the shoe seems to fit.


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi LoriAnn,

 

Shelley gave you such thorough and great information that I don't have anything to add other than my heart goes out to you during this frustrating and difficult diagnosis stage! Know that we can really relate to what you are going through, vent to us as much as you want!


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Loriann,

I know it seems overwhelming with all of the different diagnosis and sometimes a lack of one at all, but over time you will find a doctor that will recognize what you have and treat you appropriatly. Sometime I think that the key to this is to stick with a good rheumatologist over a period of time so that he/she can see the changes.

 

If you havnt seen a doctor yet that is confident in treating Scleroderma than by all means keep looking...even if you have to travel some.

 

You are very brave to have a biopsy done, but that is a great way to really pin point the reason for such dryness.

 

thanks for the update...please let us know how you are doing.

 

Hugs &


*WestCoast*

 

********

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Loriann,

If possible, travel to see a sclero expert and get a definite diagnosis. Have them send their report to both your gyno and your rheumatologist. The sclero doctor will give you a treatment plan for your local rheumatologist to implement. You can get a list of the closest sclero centers off the website. Good luck with everything. Gidget

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