Genital Ointment: Hi everyone. I have been using... - Behçet's UK

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Genital Ointment

CecilyParsley profile image
18 Replies

Hi everyone. I have been using Instillagel syringes for years for my genital sores but recently I had to have a smear and my GP could not manage to do it as I was swollen and painful. I went to the Sexual Health Clinic and the doctor there was just lovely. She said the Instillagel was not ideal as it was a liquid and I needed something to protect the sores. She prescribed Lidocaine ointment. When I went to the chemist they said she had written it wrong ( Lidocine). I then asked my surgery to prescribe it, initially they refused and I have spent the past month going backwards and forwards to the surgery chemist and sexual health clinic. Today the chemist said they cannot get it and the GP says there are no alternatives. Could you please recommend what works for you? I have been having this ulceration since 1992 and recently my flares are even more painful both in my mouth and on my vulva. Surely it cannot be this difficult to get some relief?? Any advice would be very gratefully received

18 Replies
emilyb93 profile image
emilyb93

hey I use lidocaine for pain relief, difflam mouth wash on a cotton wool pad and synlar ointment (not gel) which is good for reducing size of the ulcers. Difflam you can get over the counter as it’s a mouth wash, if the pharmacist asks what it’s for just say ulcers. Just to note lidocaine can weaken the skin and desensitise Hope you feel better soon xx

CecilyParsley profile image
CecilyParsley in reply to emilyb93

Thank you so much Emily . I am so frustrated that no one seems to want to help me. The GP is saying there is no alternative to Lidocaine so I should ring around chemists to see if they have it. It seems ridiculous to me. I use a three in one mouth wash prescribed by my Rheumatologist - soluble prednisalone and antibiotics with Nystatin mixed with warm water for the mouth ulcers. Normally they only last a few days but this last lot has taken ten days to clear and left little holes which are only now clearing up. My diagnosis has changed repeatedly in the past 13 years. Initially it was Lupus, then Bechets and Fibromyalgia, then Lupus again, then UCTD, then probably Lupus, probably Bechets and Fibromyalgia, then Fibromyalgia and “ hysteria” ( a low point), then UCTD and definitely not Fibromyalgia.Now my new Rheumatologist has not seen me in person for three years he just prescribed Hydroxychloroquine and Colchicine over the phone. I feel as if I am fighting as much with the medical profession as I am with my body. Twice GP’s have diagnosed me with herpes and taken biopsies which came back negative. Sorry for venting I just feel alone with this and it is so damned painful xx

emilyb93 profile image
emilyb93 in reply to CecilyParsley

so sorry, it can be so difficult to get the right thing. I asked my pharmacist to order the lidocaine and the sylnar ointment which they did as they didn’t usually stock it- perhaps they will be able to do this?

I hope you can get the support and relief you deserve xxx

CecilyParsley profile image
CecilyParsley in reply to emilyb93

Thank you so much Emily. I still haven’t got it, it is so frustrating xx

Psalm116 profile image
Psalm116

For my genital ulcers, my Dr. prescribes Triamcinolone Acetonide Oitment 0.1%. It works well for me. I've never had mouth ulcers and I hope I never do. I'm so sorry to read about the run around that Dr.'s have given you, and not understanding or taking seriously this disease. I'm surprised your Rheumatologist doesn't see you more regularly especially when you have flare-up's. I can imagine your frustrations, not to mention pain.

Take care of yourself and hope you are feeling better soon.

CecilyParsley profile image
CecilyParsley in reply to Psalm116

Thank you so much. I am feeling fed up today. I have been with my current GP practice for 31 years and just received a letter from The Health Board stating that I am being transferred to another surgery. I do not get great treatment now and the thought of starting from scratch with a new doctor is unnerving. Xx

gillianTS profile image
gillianTS

I wonder if you can get your prescription through an online pharmacy service who handle NHS prescription, my mother has such a service the GP sent her prescription to this organisation and she gets her medications delivered to her door.

I can see some pharmacist sell lidocaine cream, not ideal but might be helpful in the short term until you can get things sortex out. Boots can also order in prescription products for you.

I dreaded changing GPs but it ended up I had a better experience than my previous long term practice, I think mainly because I was much more aware of the condition and previously I stumbled around with varying diagnosis.

I use natural remedies mostly for my ulcers, the creams and gels have sadly made my skin thin and fragile.

Hope all goes well with locating the cream and with your new surgery.

CecilyParsley profile image
CecilyParsley in reply to gillianTS

Thank you Gillian, finally I have found Boots have it and my surgery has said they will fax the prescription to them. It really is shocking that you get pushed from pillar to post to get help. I can cope with pain everywhere else but as I am incontinent the genital sores are just debilitating.xx

gillianTS profile image
gillianTS in reply to CecilyParsley

Great, pleased you have managed to get this sorted out xxx

CecilyParsley profile image
CecilyParsley in reply to gillianTS

Thank you, me too it has only taken six weeks 😩 but hopefully it will ease my next flare xx

JollyHS profile image
JollyHS

Hello, sorry to hear you are suffering so much. I was wondering have you asked your GP for a referral to one of the Behcet’s centres of Excellence? I have had to change Dr recently and I too found it almost easier as I know my body better now, I’m able to be more specific when I talk to My new GP. Best of luck.

CecilyParsley profile image
CecilyParsley in reply to JollyHS

Hi sadly as I live in Wales I am no longer able to be referred out of Wales unless the need cannot be met in country and from experience they argue that our Rheumatologists are experts when clearly they are not. When I had the Lupus diagnosis and had it removed the Rheumatologist I was then seeing sent me down the low grade lymphoma diagnosis. I was told I had four years to live. I would not accept that and in 2012 I was referred to the Lupus Centre in London who confirmed Lupus. My Rheumatologist was so angry that I had “ gone behind his back” he made a complaint to St Thomas’s Hospital , my diagnosis was reduced to UCTD and I was discharged. I was so angry I refused to see doctors and of course I got very sick. I am so tired of fighting to be heard/ seen/ taken seriously. Not a pity party just my reality. I avoid doctors and try and cope alone now xx

JollyHS profile image
JollyHS in reply to CecilyParsley

I'm so sorry, that's not a nice situation to be in. I hope your new GP is better and can help. x

CecilyParsley profile image
CecilyParsley in reply to JollyHS

Thank you so much. Whatever is wrong with me I am so unwell most days but the mouth, genital and nasal sores, joint pain, rashes, headaches, fatigue have all been widely documented and yet every Consultant I see changes my diagnosis. I had an eight day nosebleed that a GP said was “ anxiety”. Thankfully I had an asthma clinic at the hospital and I was bleeding so badly the nurse was horrified. I was sent to ENT and after seven hours and three cauterisations he said this is vascular have you got Bechets? Still my Rheumatologist failed to respond to his letter until my Respiratory Consultant wrote and told him how horrified the nurse was. He rang me and put me on Colchicine over the phone. I requested to be seen and he said he would see me in clinic only to get his registrar to call me three months later. My GP has written twice to ask him to see me as has my Urologist who said you are being failed by the service. She is right. I am not usually so miserable but I haven’t slept more than a few hours in days with leg pain xx

JollyHS profile image
JollyHS in reply to CecilyParsley

I'm so sorry. My BD is mild in comparison but when it's at it's worst I know how horrible it can be. Keeping my fingers crossed that you get the help you need soon. x

CecilyParsley profile image
CecilyParsley in reply to JollyHS

Thank you so much for listening to my moans. Have a lovely weekend xx

JollyHS profile image
JollyHS in reply to CecilyParsley

You too. Hope you can relax a bit and feel better. x

CecilyParsley profile image
CecilyParsley in reply to JollyHS

Thank you 🤞🏻 Xx

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