For the last seven years I have suffered with this condition. And when I say suffer, I mean suffered.
So I shall start with the facts
Vulvodynia is a chronic pain syndrome that effects the vulva area and occurs without identifiable cause, or visible pathology.
Pain is the most notable symptom and can be as in my case, burning, stinging and irritation. It can be made worse by sitting, bike riding and sexual activity.
A wide variety of possible causes and treatments are being looked at.
Many sufferers like myself see several doctors before a correct diagnosis is made. Many gynaecologist and family doctors are not familiar with this conditions. Many because of the absence of symptoms means that before being diagnosed, are told its "in their heads".
Like many who have a pain disorder, those afflicted many often be impacted by the frustration of finding a diagnosis. The cause unknown and treatment success varies. Therefore, many become depressed with a low quality of life.
The constant burning is there almost daily. It influences what I wear and what I do. I struggle some days to remain cheerful.
It is a totally isolating condition. Not one that you can freely speak about , so the sense of being alone is at times hard.
Although my husband tells me he understands he really can't. He has stopped being interested and tend to change the subject if I try to talk to him. I am not saying he is bad, he just fails to understand how sad and depressed it makes me, and its not my fault.
You feel trapped and held back from the life. I've decided to share this with you today as I wanted to speak out. So many women are locked into this condition, thinking they are alone.
I am in the UK and I have been lucky to find an excellent doctor. Professor Wendy Reid at the Royal Free Hospital in London. She a wonderful doctor and so reassuring and kind. Its not been easy to see her, it took seven years on the National Health Service.
I still see no cure and some days are better than others. I will do my best to keep upbeat but I have to be honest volvodynia is a very difficult condition to live with.
So please do not suffer alone, there are many others like us and together we can gain support.
Let us learn more about volvodynia and maybe just maybe a cure.
In the UK there is more information at
www.vulvalpainsociety.org
Thank you for sharing this. I had never heard of the condition. As someone who also suffers from chronic pain, I can understand the isolation and depression that comes along with it. I think our husbands try their best to understand, but it can get draining to not be able to help us when they want a cure as desperately as we do. I don't know if that perspective helps or not, but my husband explained that to me one day when I was just so down I really didn't know how to handle myself and he sort of "checked out." I'm glad you are spreading word about this condition so others don't feel quite so alone or won't be scared to seek treatment if they are having similar symptoms. I do actually have similar symptoms myself, but only during "that time of month" and only if I'm standing for a long period of time. I've experienced that since the delivery of my first child and always attributed it to the episiotomy I had.
ReplyDeleteThank you so much for your comments Karen. I'm glad you are now aware of the condition. Mine started one day out of the blue and never went away. I hope your pain is manageable and I will remain as cheerful as I can x
DeleteI'm so very sorry to hear of this chronic pain and discomfort for you. I do hope and pray that can find some relief. I'm new here. Happy to be your newest follower.
ReplyDeleteThank you I get by because inside I'm a happy person
ReplyDeleteI am very grateful for this post. It does make women aware of the symptoms and have a chance to maybe connect it to this syndrome. I hope you have more better day than difficult ones.
ReplyDeleteI found you on the Happy Go Lucky Hop and following you.
Thank you jillian I hope that others will read this post and know they are not alone
ReplyDeleteSo so sorry to hear of your pain and discomfort. I have never heard of this condition. I agree with Jillian, I love reading blogs where people are open and I feel there are women that will really benefit from you putting the info out there. Blessings to you! Following you back from the Mingle Blog Hop.
ReplyDeleteThank you racHel it was hard to share this personal but very distressing condition. I hope that talking about helps others
ReplyDeleteReally sorry to hear this, I have never heard of this either and it's great for people like you to share personal things. My mum has ME and finds it really hard to talk to others as nobody understands. It's such a shame when you feel like You can't talk about something to friends or family. All my love and I really hope things look up for you
ReplyDeleteThank you for your comments Emma. My daughter has ME so I know what that's like also. We just have to be strong
DeleteThank you for this. I also have had the condition for seven years. It was brought on by years of untreated recurrent vaginal thrush. I also have felt very isolated. It's good to know there's someone else out there.
ReplyDeleteHi Imogen I fully understand what you are going through. I agree it is a isolating condition . Yes we are out there and if you need to chat please come find me. We are not alone x
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