Bechets

[Mummyof7]

I am still very much at the beginning of my journey. I have suffered from mouth ulsers most of my life with no diagnosis or reason to why. It was when I was pregnant in 2020 that I started suffering with vaginal uslers to be told it was due to my pregnancy, they continued after my son was born to then have them embarrassment of weekly visits to the sexual heath clinic. Every test was negative to be seen by a different doctor to be told it is herpes and sent for more tests, it's was there that I was referred to a consultant at a hospital and diagnosis 4 years after my symptoms started. I struggle every day as my flare ups seem to be longer than the days I am well I take medication but still end up in bed and house bound for atleast 10days due to the pain and vaginal ulcers where I can not get dressed or put clothes on. I have had numerous hospital appointments due to painful flare ups or urine infections where the pain of urinating is unbearable so I hold it for hours. I just want to be a out of pain and a mum to my children.

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Mummyof7

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behcet's diseasecolchicine

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March 19, 2024

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41

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I am still very much at the beginning of my journey. I have suffered from mouth ulsers most of my life with no diagnosis or reason to why. It was when I was pregnant in 2020 that I started suffering with vaginal uslers to be told it was due to my pregnancy, they continued after my son was born to then have them embarrassment of weekly visits to the sexual heath clinic. Every test was negative to be seen by a different doctor to be told it is herpes and sent for more tests, it's was there that I was referred to a consultant at a hospital and diagnosis 4 years after my symptoms started. I struggle every day as my flare ups seem to be longer than the days I am well I take medication but still end up in bed and house bound for atleast 10days due to the pain and vaginal ulcers where I can not get dressed or put clothes on. I have had numerous hospital appointments due to painful flare ups or urine infections where the pain of urinating is unbearable so I hold it for hours. I just want to be a out of pain and a mum to my children. Read more

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[Icefire]

Hi there, I'm sorry you are going through this. I used to get vaginal ulcers and found that if I applied dermovate ointment the minute you feel one coming they come to nothing. It's a steroid cream that GP should be able to prescribe if you don't already have it.

I manage my condition with diet. A Rheumatologist suggested and gave a script for Colcechine but I didn't want to make gut issues worse.

Recent experimentation with continous glucose monitor has been a game changer. I didn't realise my body can't see the difference between potato, rice and cake! Bechets patients are more likely to become diabetic according to a research paper I found. I ate a lot of sugar in my past and now am borderline prediabetic even though I eat a 'healthy non processed diet' and am active.

This last couple of years since my 'post children flare' I have been building up running / movement of any kind. I have recently signed up to Zoe project to try and eat what suits me. I'm in early stages but feel soo much better. It is expensive so if its too much you can also get a lot from listening to their podcasts and buying a cgm independently.

I was gluten and dairy free for two years but have now reversed my thinking on this. My gut is much more settled without the 'high glucose spikes'.

Good luck, hope you are feeling better soon.

[Mummyof7 in reply to Icefire]

Thank you for the reply, I will ask my doctor about the cream as I haven't had that.

[blackismyfavcolor]

Hi, i'm so sorry to read that you are in pain. I take tacrolimus and my ulcers have disappeared. I have had to take cycles of corticosteroids during relapses for short periods. I hope they can find the right treatment for you soon.

[gillianTS]

Hi, After years of continuous UTI's I was put on a low daily maintenance dose of Nitrofurantoin by a Urologist. It is an antibacterial medication used to treat urinary tract infections. I took this for 3 years and then read an article by a Urologist saying to try high dose Cranberry tablets instead. I decided after 3 years of Nitrofuratoin to give it a try, I have not had a UTI since and that's 7 years ago.

For ulcers I would try using a bottle of warm water to squeeze at the time of urinating, helped with the burning. Have tried the sitting on a bucket of water, so immersing your vagina in water while you urinate. Whilst this is effective its not practical in day to day life. Ringing with warm water, to which I had added tea tree oil, giving it a good shake prior to use, worked and I could carry around with me when not at home. Leaving any trace of urine on my area really irritated my ulcers, using this method helped. Finding a none scented cream suitable may help too, but use sparingly, sometimes these creams are hard to wash off and you can end up with a build up which is not good.

It took decades for my Behcets diagnosis and managing vaginal and oral ulcers was awful. I had a similar experience to you with nobody recognising Behcets, I was made to feel dirty and I was embarrassed. Had lots of different creams to try but nothing worked. I eventually started using tea tree oil rinsing on my vaginal, depending on the area of the ulcers I have used it neat but very sparingly. The same goes for oral ulcers too but don't swallow the tea tree rinse.

I was told by a oral and maxillofacial consultant that the biggest problem with ulcers is not treating them the minute you have any sensation. If acted upon quickly they can be reduced and time to heal reduced too. I use vaginal rinsing and mouth gargling for decades, still do if my medication fails to stop / reduce my ulcers. I am much more prone to dabbing a small amount of neat tea tree on ulcers, but still use both. Some people do not advise neat tea tree but I have tolerated this for decades. Depends on the person, plus some people in other areas around the world put tea tree oil in drinks and consume daily. Hygiene is paramount in my opinion, both oral and vaginal for ulcers. The longer they are left untreated the worse they get and the longer they last.

I now have less oral and genital ulcers, I went through a big decline in my 30's but massive increase in my late 40's. Once diagnosed my treatment has changed over the years. But I seem to get to a stage where my body stops accepting medication and further complications happen and I get put on another type. Still use my natural methods too but when things got beyond my control prescribed medication helped, but not everywhere.

My first prescribed medication was colchicine but I had a big toxic reaction to this, it affected my liver enzymes in a big way. Thankfully they reduced back to normal levels within 3 months. Yet colchicine is widely used in Behcets with great success for treating oral ulcers.

Really hope you can find something to help, I really feel for you, it is a awful position to be in and with no help. Take care and if things do not improve get back to your consultant and GP. X

[Ithinky]

Hi. I'm sorry about your condition. I suffered all my life from mouth ulcers. Until i decided at my 40's that i had to do something about it. I had many doctors telling me that mouth ulcers can be triggered by many things and that's it. I made two things that changed my life. I made a journal, in the form of a calendar, and found a really excellent doctor. In my journal i wrote down all the days that i had ulcers in one whole year. And i used a red marker. After one year i showed visually this calendar showing that i had ulcers more than 50% of the time. The calendar was red all over. When my doctor saw the calendar he cared about it. Now i'm taking colchicine every day in the last 10 years. I think that every everyone's case is a bit different and i hope that you find your way too. Be well.