Lichen sclerosis

anonxc · 2023-01-30T12:45:18+00:00

There's not much threads on this so wanted to create one for a bit of advice, I have had lichen sclerosis for around 7-8 years now but recently I have had the worst flare up of my life, I'm concerned my lichen has progressed and I am only 26 years old. I keep getting severe burning in the opening of my vagina and awful awful stinging and soreness. However I can urinate normally with no pain which is the strangest thing about the sensation, Part of me thinks this could also be vulvodynia as I was diagnosed with this in the past but barely have flares now so forgotten the way it felt for me when diagnosed, I cannot get seen by my gynocologist as he keeps going on leave, my appointments have been pushed back further and further since summer last year! I have a doctors appointment tomorrow but I don't think they'll be able to help me here, I'm so upset that this is happening to me, I just got into a new relationship and we have not had sex yet, he doesn't even know of my conditions, I doubt he would stay if he knew as he has a high sex drive. I did to before all of this so I wouldn't even blame him if he did leave. Does anyone have any tips of how to make sex at least comfortable for me? I want to do it and I don't want this awful horrific condition to stop me, I do have lidocaine which I used this morning but anything that is touching my vulva right now is causing stinging, even just simple water :(

Original poster

anonxc · 30/01/2023 12:55

Reading up on my symptoms now actually this seems to resonate more with vulvodynia. :(

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StupidlyImperfect · 30/01/2023 13:02

Ahh, I went off to find this link as posters had shared loads of really useful info.
I will post it for anyone else that may need to read but there are lots of posters saying to ask for a referral/biopsy so you get a proper diagnosis.

Sorry op,it sounds miserable.
www.mumsnet.com/talk/am_i_being_unreasonable/4710752-itchy-vagina-condition-ruining-sex-life-and-worried-about-my-marriage?reply=122739900

Original poster

anonxc · 30/01/2023 13:06

StupidlyImperfect · 30/01/2023 13:02

Ahh, I went off to find this link as posters had shared loads of really useful info.
I will post it for anyone else that may need to read but there are lots of posters saying to ask for a referral/biopsy so you get a proper diagnosis.

Sorry op,it sounds miserable.
www.mumsnet.com/talk/am_i_being_unreasonable/4710752-itchy-vagina-condition-ruining-sex-life-and-worried-about-my-marriage?reply=122739900

Thank you, I have actually been diagnosed with both and know this is one of the conditions, likely vulvodynia but I'm so upset with it, I wish I had a normal down below area like most do 😩

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Useracceptancetesting · 30/01/2023 13:07

I would consider you may have aerobic vaginitis. It is hard to get diagnosed by the nhs but you can get a private juno swab done. Vulvodynia just means painful vulva, it doesn't tell why it is painful and what treatment you need.

Original poster

anonxc · 30/01/2023 13:23

Useracceptancetesting · 30/01/2023 13:07

I would consider you may have aerobic vaginitis. It is hard to get diagnosed by the nhs but you can get a private juno swab done. Vulvodynia just means painful vulva, it doesn't tell why it is painful and what treatment you need.

I don't have enough money to go private, I just want someone to listen to me and help my symptoms, I can't even walk without being in pain down there😩

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Useracceptancetesting · 30/01/2023 13:36

You could try asking your gp or gynaecologist if they refer you, but my experience is very few clinicians have heard of aerobic vaginitis. I am currently waiting on my juno results having been suffering since May. I understand the dispare I have been bed bound at times and walking was agony. The gp may prescribe amytripline which has helped me a bit with the pain. I am on 50mg. You could try the my vagina website and the Killing bv Facebook group, both have been invaluable to me.

Original poster

anonxc · 30/01/2023 13:40

Useracceptancetesting · 30/01/2023 13:36

You could try asking your gp or gynaecologist if they refer you, but my experience is very few clinicians have heard of aerobic vaginitis. I am currently waiting on my juno results having been suffering since May. I understand the dispare I have been bed bound at times and walking was agony. The gp may prescribe amytripline which has helped me a bit with the pain. I am on 50mg. You could try the my vagina website and the Killing bv Facebook group, both have been invaluable to me.

I'm going to ask for this, I am in so much pain and I do not know what is causing it, did you get stinging with anything touching the area aswell? I am currently just using water and lidocaine gel and both sting so bad I could scream

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Useracceptancetesting · 30/01/2023 13:43

Yes burning and stinging, anything touching it made it worse, but it was still agony even if if I was led down not moving with no underwear on.

Original poster

anonxc · 30/01/2023 13:48

Useracceptancetesting · 30/01/2023 13:43

Yes burning and stinging, anything touching it made it worse, but it was still agony even if if I was led down not moving with no underwear on.

That's exactly it to a T😩😩😩 how do you manage your pain any other ways? Are you able to still have sex normally?

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Useracceptancetesting · 30/01/2023 14:17

I took fluomizin wihich improved symptoms about 50% but I already knew I had aerobic vaginitis with enteroccous from a previous private vaginal swab. I haven't had sex since March last year based on the pain I get just walking even now they is no way I can contemplate sex. Luckily my DH is very understanding and doesn't want to cause me pain.

Original poster

anonxc · 30/01/2023 14:23

Useracceptancetesting · 30/01/2023 14:17

I took fluomizin wihich improved symptoms about 50% but I already knew I had aerobic vaginitis with enteroccous from a previous private vaginal swab. I haven't had sex since March last year based on the pain I get just walking even now they is no way I can contemplate sex. Luckily my DH is very understanding and doesn't want to cause me pain.

Ok, is that like a BV tablet then? Oh my goodness, I was hoping of some miracle story there :(

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Useracceptancetesting · 30/01/2023 14:30

It is used for bv but can also be used for av. I found out about it from the my vagina website and some people in the Killing bv support group had good results with their av symptoms. Av can be caused by a number of bacteria so I expect it depends what bacteria is causing your symptoms.

Original poster

anonxc · 30/01/2023 15:09

Useracceptancetesting · 30/01/2023 14:30

It is used for bv but can also be used for av. I found out about it from the my vagina website and some people in the Killing bv support group had good results with their av symptoms. Av can be caused by a number of bacteria so I expect it depends what bacteria is causing your symptoms.

Did you also get noticeable redness? Almost like a rash patch of rash on the vulva? Just looked now and it looks red raw so sore :(

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Scooby5kids · 31/01/2023 19:10

I have lichen Sclerosis, it's honestly awful 😞 I found a really good facebook uk support group for it on Facebook that I've found amazing. Are you using the ClobaDerm ointment?

Original poster

anonxc · 31/01/2023 20:40

Scooby5kids · 31/01/2023 19:10

I have lichen Sclerosis, it's honestly awful 😞 I found a really good facebook uk support group for it on Facebook that I've found amazing. Are you using the ClobaDerm ointment?

I'm also in the support groups :) & I can't use them, I react to them badly:( I use betnavate ointment, not using any right now though due to this, I did actually go back to the doctors today and they took a look and said it looks infected again... I said I was worried about the C word due to my LS and they said my vulva is not presenting anything abnormal no lumps or bumps minus pinkish skin it does look ok according to my GP but they said they need to do a high Vaginal swab to send to the lab to see what is causing this, GP said I'm extremely swollen and sore and when she put swab in I literally screamed. She said it is definitely a bad infection this isn't your lichen sclerosis doing this - she said she will send the swab off and has issued me codeine for the severe pain and another course of anti biotics

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Original poster

anonxc · 31/01/2023 21:11

Been on so many different anti biotics in the past month now for this, first metradinazole from a doctor who couldn't be bothered to see me in person, then the lovely out of hours lady who told me I had an infection which did initially go, now doctor who says infection is back and go try and different one, I hope I don't get resistant :/

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Scooby5kids · 06/02/2023 08:12

anonxc · 31/01/2023 21:11

Been on so many different anti biotics in the past month now for this, first metradinazole from a doctor who couldn't be bothered to see me in person, then the lovely out of hours lady who told me I had an infection which did initially go, now doctor who says infection is back and go try and different one, I hope I don't get resistant :/

Yes it's a difficult disease because most GP's aren't very knowledgeable about it. By the sounds of it a lot of the gynaecologists and dermatologists aren't either. So far the only treatment the NHS can offer is just the steroid treatment and if you can't use that then it's difficult. I would maybe do some research and see if you can find a specialist in LS and ask to be referred by right to choose, I don't know if that could be an option 😢

Original poster

anonxc · 06/02/2023 16:08

I don't think this is lichen sclerosis related because of the swelling and soreness, I've now noticed it's a pattern - whenever I have sex it swells up so bad and it won't go unless I take anti biotics it will continue to get worse, I can't even find anything online this relates to but I had sex two days ago and once again it is swollen as hell and painful, took anti biotics again and again it's going down slowly....

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