Biopsy said Non-specific inflammation

Hi Chrissy thanks for your reply.  I have seen 3 Gynecologists.  The first that did do the biopsy was the one to tell me his diagnosis was Vulvodynia. I wasn't happy as I felt there was something wrong so kept pushing my GP.   Then I saw 2 female Gynecologists one said it looked like possible LS and the next said it I her report that my labia and clitoral hood was resorbed consistant with old LS. When the biopsy came back non-specific I was told to stop the steriod.  Now I wonder if I should use again.  I have never been sure where to put it.  I don't have any white patches but I do have a small slightly white patch in m perineum are and a slight paper like cut.  My left hand side of what's left of labia is also sore and stingy. I am also using Ovestin internally about twice a week but don't put it on the outside.  Becuase when all this started I had a terrible burning problem I am really worried to out anything down there incase that comes back again.  I did also have BV when this all started which I have never had before.  This is such a great forum thank you for any advice.  I feel like I am going mad trying to figure how what it is I have

Hi Alison thank you so much.  Yes it is very frustrating and my partner thinks I have  seen too many different specialists.  Been to 3 Gynos and 2 Dermaologists.  My first dermalogist referred my to a female colleague as he was honest and she she was more experienced in women's issues.  He thought it was LS ... but she thought no sign off it, however I had used the steroid at this stage and things were settling down.  The first Gyno who took the biopsy told me I had  Vulvodynia and just dismissed me basically told me to suck it up and it would get better but he did to know when.  So I asked to change Gynecologists and saw one out of my region at the time as the wait in my region was months.  She said it looked like LS had been present and she would be keen to see what the new Dermatologist thought (they shared rooms).  Saw her the next day and she said no sign of LS to keep taking Amitripyline for Vuvlodynia.  So then back to another local femal Gyno who I really felt more confident in and  she said on presentation and lost of architecture she was on the LS fence! 

Good luck with your Vulva specialist and I would appreciate knowing how you get on. 

Hi thank you this was helpful.  Gosh I am sorry you have had to wait so long for an appointment.  I consider myself lucky that we don't have such big waiting lists where I live (NZ).  I did  have to travel out of my region for the second opinion.  I agree you may be right  I have now read a lot about how starting the steriod cream can dampen down the LS so it's not detected at biopsy.  Good luck with your appointment. 

Next time Ill spell check before sending...

Hi nice to here from fellow NZ follower.  I am new to this site but have found lots of useful information.  I am using Ovestin internally and that has helped "plump things up" so to speak.  I have also read a lot about Estradiol and wasn't sure if it was similar to Ovestin?  When this all started I also think I had had a chemical reaction to either antibiotics from first ever UTI or maybe my body wash so anything I put in that region just burned like crazy - trying to fix this problem was what brought the LS to my attention apart from this I had not had any symptons and was oblivious  to my missing bits!!  Are you using Clob?  Are you South or North Island .

 

Im Wlgtn. Yeah I got the Dermol from the speciallist. Was told to use it everyday for six weeks and then wean myself off. I did use it on/off, butnot a bi fan of using steroids.

I got some Hope's relief cram which seem to calm things down. Having said that I dont have any symptoms other than a ltille white patching and shrinking bits. But that's plenty!

In the past I did have a lot of paper cuts/tearing, Thought it was due to mountian biking, excersising a lot, doctor said to rub some olive oiil on it..

Whats Ovestin?

sorry to ask again? Ovestin internally? You mean inside the vagina or in a tablet form? :

Hi you sound so similar to me. I have one paper cut like piece in the perineum area which I struggle to heal, tried manuka honey last night after reading on site.  I am not a fan of steroid either but will use as I don't want LS to progress to other problems.  Ovestin is HRT but not the type that is absorbed into blood stream it is used in vagina and you can use a cream or pessaries.  I like the cream as it doesn't run out.  I was reluctant to take it but after doing my homework I balanced the risk, (there are some as with any medication), to the benefits and was pleased I have as it has helped.  This was recommended as I have thin vaginal walls and very slight prolapse so this has just plumped things up.  Not recommended if you have cancer history. You start with every night for 2 weeks then go down to a maintenance dose and most people us once or twice weekly, or whatever they are comfortable with.  I am not far from you at top of South Island! 

Hi yes internally that's correct.  You either use an applicator and put it inside that way or you can use the pessaries which you just push up (they are a small bullet shape).  This is a form of HRT which is oestrogen and good if you require it in that area.  It helps with dryness and I have noticed has plumped me up a bit.  It's not for everyone but if you google feedback you will read the the women using it have benefited. Once you build it up you go to a maintainence level and they suggest every few months you try without it to see if you will need it.   Again we are all different.  It's not really for LS directly but allot of women with LS also discover the lack of oestrogen at the same time like me and it can be beneficial for some.  It's so hard to know what's causing what down there! 

Sorry to ask this, when you say plumped up. Do you mean your labia out inside your vagina?

Funny asking these intimate questions to complete strangers, eh?.

I don't have any "inside"issues, as far as I know, so can probably use the cream instead of the capsules.

God, I hate this. I've always lived a healthy life with lots of good food, exercise and iof course some stress. We all have stress, that's part of life. But to be a patient with this s... just makes me angry. Thanks for letting me let out some steam. 😊

Hi I understand exactly I have been the same always looked after my health, don't smoke, social drinker, exercised etc.  I had my first ever UTI in November them boom all this problem.  At first I thought the issues were from the 3 lots of antibiotics I had taken but 3 miserable months including a Xmas and New Year of burning, stinging and basically not being able to sit with my legs closed I discovered I had LS - my specialist thinks I have had it for years but until this UTI had no symptoms!  It's not an area that you check yourself unless there's an issue, so I was shocked. I finally gave in and used the steriod as directed for several weeks and things settled down but I have never been the same since and worry that I might never be again.  This site does give you some hope when you hear what some of these ladies have been through.  I am nearly 56 and probably many years post menopause so the Ovestin was a new thing for me as well.  It doesn't restore the lost labia but it did make the outer area feel a bit plumper and therefore a little less friction with walking etc.  Both the cream and pessaries go internally but you will read on this site late some women do spread a tiny  amount of cream on the outside of the vluva area as well, and they feel that helps.  If you don't have any internal issues then you probably don't need the Ovestin.  It was recommended to me because when I had an exam if showed thinning of the vaginal wall and also very slight prolapse (none of which I had any symptons for, although I did feel the prolapse some days).  Yes it is strange sharing intimate details with complete strangers but you have to talk to someone and who better than someone going through similar experience.  It's a big learning curb and like you say incredibly frustrating. How did you find put you had LS? Do you have any symptons other than the lost bits?  What I have  found that it is such a sensitive area that once you start putting things down there you can create other issues. I am still not exactly sure where to apply this steroid cream and if I am putting it on correctly. No problem with the venting it's good for us to share and know we are not alone.