Seen by two different gyno's now really confused!

Women's health
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After 18 months of miss diagnosis by my GP I saw a lady gyno who disguised me with

Lichen Sclerosus. I had white scarring and complete fusion of minor labia. Was prescribed

Dermovate ointment. Follow up was with a male gyno. He found an ulcer on inner

side of right vaginal opening. He said I needed a biopsy. Although very apprehensive

about the procedure I agreed to have it performed then. I was given an injection of

lidocaine. Gyno did not wait any time for it to feel anaesthetised. Took the biopsy and then put

in one stitch. I then jumped with an awful pain and he asked he where the pain was. I showed him with

my fingers and told me I should not have pain there. This pain happened two more

times, both times in that same place. He said he was trying to cut the thread as close to skin as possible. He was nowhere

near the biopsy cut. Was sent away after being told my GP would have results in 14 to 21 days. That night I took a look and as I thought

he had been pulling fusing apart. He did not even tell me what he was going to do, I was shocked by his unprofessional attitude.

I have been trying for two weeks to get my results as 6 week have passed since biopsy and I managed to get his secretary on phone this morning.

She told me no follow up, signs of inflammation and lichen planus, continue with GP and ointment.

Well no point as my GP has told me she does not know about the illness. BUT can you have lichen sclerosus and lichen planus?

I am totally confused and once again left to get on with it by myself! Has this pulling of fusing been performed on any one on this forum? I am confused by different diagnosis?

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Hi Anne,

im really annoyed reading your post. You've been diagnosed and discharged in one full swoop, disgusting.  That man well he needs his genitals pulling, sorry but we just seem to get no compassion from these so called professionals.  Biopsies of this area are such a horrid thing to go through and I found it so upsetting.  I too had to keep ringing and ringing for results, they said three weeks and it ended up being ten weeks only after I went private to see an expert and he rang me with the results I got PALS involved as well.  You've had a rubbish experience.  I honestly believe communication is key when doing anything to us we should be told every little bit they are doing to us in the appropriate compassionate manner but it doesn't happen.  Sorry just annoyed.  Someone else will help with fusing I haven't had that, also mine came back with inflammation as well and it's like 'computer says no' and leave us with no follow up plan just use the ointment.  Hope you are ok, keep posting. X 

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I'd be looking for another dr or Dermatologist that takes care of LS

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I'm really happy that wasn't my doctor, I would be in jail.  I have a great Gyno.  She saw and knew what it was right away.  After taking a small bio it was confirmed.  She put me on Clob, pea sized twice a day only for two weeks.  Clob thins the skin so when I went off I had to use a different route.  I'm 79, been on etrace vag cream for a couple yers, 2 X's a week.  On this blog a woman and her husband were searcing for a remedy and came up with this:  Small amount , no lumps, either use in a spray bottle of with BORAX,( in the laundry aisle.)  shaken so that it has no lumps left.  and a jar of vasaline type healing lotion after.  I used this after each time I used the bathroom and it began to unfuse.  I now have it completly unfused and no sign of LS.  I also had Lichen planus.  It just went away on its own.  I take a female pro biotic, expensive, yes but that makes me wonder if that had an effect as well.  Good luck girl, but I would have bopped that Dr. right on top of his head.  All they need is a small amount of tissue.  I had bio's for both LS and LP and never had a problem. 

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My heart goes out to you. Sometimes I don't even look anymore. Seems like it is not a big deal. No one knows how we are suffering. I will pray for everyone.

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Hi Sue, I have been pestering this gyno's secretary for a week now. She said she was going to tell him my fears of no follow up and two different diagnosis and get back to me, eventually got hold of her after I had received the letter confirming the results from the post man this morning. She said gyno had confirmed discharge and continue with GP. I asked if he could refer me to a dermotologist. No! You will have to do that through your GP. If I wanted to see someone in an emergency he would be willing to see me! Well, I cannot say what I shouted in anger and tears when I got off the phone. So very, very, angry. If he wanted to see me, I would not be willing to see him. And he is only a locum and the first lady gyno was a locum. It seems they have not got a consultation amongst the team. Well, I will have to wait a month to see GP then 20 weeks for a referral! I still do not know if I have lichen planus and lichen sclerosus both locums different answers. I would not like to be in a critical condition here in the UK. NHS is in an appalling state. I will also need a therapist for anger management! Crushed ice comes to mind but not for me, I will say no more. Thank you for your reply and compassion Sue.

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Yes I may have to move to another surgery now after today's results. It is so hard when you are trying to cope with the symptoms and slow treatment, then you have 'professionals' that do not care a damn, just get them off their books!

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Hi Pat, thanks for your reply. I cannot understand these pompous people that you try to have trust in and they just strike the discharge button. I do not need this stress. It is bad enough coping with the ritual you have to perform to keep yourself comfortable if you are lucky. Only one good answer is I do not have cancerous cells. That is wonderful to know. Bye bye locum gyno. I hate to think how many other patients have been treated in this way. Thank you Pat.

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Hi Diana, I understand how you feel. This last week I have not had the motivation to even bother to look or do my cleanse and oil after each wee. I have just 'hibernated' and hope it has all gone away. But after today's events, I must kick my butt and get my next moves in motion. Thank you for this forum, we learn from each other. The support is our only hope of helping our 'friends' with their fears and our bad painful days.

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Hi Anne,

dont nut feel bad about being angry it's because you are trying to search for answers to a condition that you are worried about as same as me you keep searching as no one particularly is doing their job properly.  Yes NHS is nothing like years ago, they're overrun and so I believe they want to cut down on referrals and extra tests if they can as there are so many more people needing the services now well that's what I think.  My GP had got a letter from the man who did my biopsy recommending vagifem and help with my anxiety I said to the GP I had anxiety on a day when I waited three hours past my appointment time and hadn't to remind them twice I was there, felt very vunerable and not comfortable during the biopsy with the stirrups and the whole procedure so much I needed gas and air and I have recently lost my man AND I will not explain my life to someone who has no idea what I've been through, she said ok.  Sorry just to make you feel you aren't alone and I understand you going round in circles trying to get answers.  I think they discharge us for GP follow up but a lot of GPS don't know about LS.  I think the wait for appointment is so long,  is it possible to pay a one off fee for a specialist in vulva issue nearby, I know you shouldn't have to but sometimes it just beats the system a bit.  X

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I wish you could edit it corrected Mam to Man I lost my lovely Mam.

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Yeah I understand Diana, I look less now once a week it was getting silly how much I looked. 

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Hi Sue, my thinking is the same as yours with cut backs. My diabetic nurse (I have type 2 diabetes) wanted me to come off me medication. I refused. She also informed I would only have a yearly check from now on. I immediately knew, less money spent on meds and less patients to give time to overload back up of patients. I find it very frightening, it becomes so unpredictable. It is not loneliness but the lack of professional help makes you feel out of control with your condition. Which 'door' do you knock on? I know there is a shortage of consultants, I heard that dermotologists are at the top of the list for the lowest professionals in the south west of the UK. I am sorry you had such an uncomfortable time during your biopsies. It is difficult on your own and I agree with you, you should not have to explain your life to anyone. I am certainly going to search for a vulva specialist, but only for a one off appointment. I suppose the only way ahead is to accept we have a condition that cannot be cured and to share our troubles and success with other who suffer as we do. It appears from this forum we are a team that have empathy and kindness with each other. Also I find a bit of comedy in our posts helps us with our anxiety and can brighten our days and nights. I really enjoy how open we can be without having to include our personal friends, relatives and acquaintances without feeling embarrassed. Forward and onward we 'march' with smiles, laughter and confidence. We can hope, lol.Bye for now Sue, look after yourself. Anne.

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I love hearing from all of you everyday. It does help. I worry my daughter my granddaughter will get this. We need more answers. Keep in touch God bless you all. Diana

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DIana,

a kind ins lady on here gave me the reference to look up British Society For The Study of Vulval Disease and it has a list of the Council members.  I looked up my area and one was two mile away at The Spire, I didn't want to pay but paid a one off fee for seeing him.  I got about three quarters of an hour with him.  Then he referred me back into NHS to see someone, who like you looked and discharged me anyway but I did get more time and asked the questions I wanted.  I've just been thinking of you that's all x 

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I wish there was a way we with LS could meet up and have open discussion of this subject. I'm from Monroe area Located in north Louisiana. Is anyone close to my location?

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I am in Maryland.