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Adenomyosis Advice On-line Support Page

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One Year On

Posted on August 15, 2012 at 3:27 PM Comments comments (56)
One Year On
 
 
So much can happen in the space of a year that often one easily forgets what has gone before. I for one never realised how much the surgery would alter the way I viewed life. It is one thing to get over the effects of the operation, but another to actually regain stamina and get the cardio-vascular system working well again and get back to your happy self!
 
For many women, any gynaecological surgery is painful and uncomfortable, but I think the thing that I found hardest to do was to rest and recover. Of course there are many things that go through your mind whilst having to rest.  Yes there were tears and frustration, and it was challenging to say the least on so many fronts.  I found it an ideal time to look back and consider how much life had changed before surgery and most importantly I had time to plan, think ahead and consider a new way forward. 
 
I have discovered over the year that some people prefer not to know about health issues and many people think adenomyosis particularly will happen to someone else and not them. I have spoken to and emailed hundreds of women who, like me, have had to face up to the reality that when your body is hurting, something IS actually wrong.
 
I have been approached by hundreds of organisations all over the world who are actively supporting the association's work. There have been over 100,000 visitors to the website who are searching for adenomyosis via search engines looking for 'adenomyosis', 'pain relief for adenomyosis' and struggling with'adenomyosis and miscarriage'. Whilst the feedback about the website has been positive, I have also had one or two emails that have clearly indicated that some government bodies and organisations simply do not seem to care about women's health generally and do not feel the need to improve the standards of diagnosis in the detection of the condition. I expected this, so it came as no shock to me. In fact it made me even more determined to try and influence others to take the matter more seriously.
 
I felt that to get noticed, the organisation needed to gather more data, so in response to this I decided to go one step further and asked women suffering from the condition and those who were now treated to participate in a global study to see if there was a link between everyone, some common cause (nature or nurture) and whether anything else had had an impact on their condition. So many women came forward and many responded selflessly. The results are of course yet to be published in 2013 and will no doubt interest many who work in the field of gynaecology and beyond. The support from the association members has restored my faith in humankind again, that there are others out there who understand and like me want answers for themselves, their families and future generations.
 
Of course the survey was only one way of reaching out to others. I have over the last year received some fantastic feedback from women from all corners of the globe, some of whom cannot openly talk about women'sissues health and other problems as society still does not afford that freedom where they are located in their part of the world. This in itself is a hurdle that it has been great to (in a small way) overcome a barrier which had not previously occured to me.  I have heard from young girls battling with this condition whose lives have been turned completely upside down, women of all ages who want to go on and have a family despite their pain and distress and from their partners and other family members who have been searching for more information about adenomyosis.
 
I can only say that without the skills of my surgeon MrPakarian, goodness knows where I would be now.  I owe my health to him and his colleagues who took very good care of me at the point I needed their help most. It is down to clinicians with skills and teams like Mr Pakarian all over the world to diagnose and treat this cruel and debilitating condition. With the advance in treatments such as OSADA by Dr Osada and Dr Silber in the USA, women can look forward to a more healthy,  controlled and comfortable life, and it is for the medical profession all over the world to look to these leading clinicians to get the training that they need to detect, treat and help more women overcome adenomyosis.
 
Moving forward, here's to another year of supporting others and spreading the awareness yet further.
 
Wishing you all very good health and happiness.
 
Danielle x
 

Ask the experts

Posted on September 28, 2011 at 11:04 AM Comments comments (226)
Please feel free to ask any questions here, and  hopefully these will  be noted, responded to and looked into by clinicians who may visit the page as part of any research into the condition. Thank you. 

Welcome

Posted on August 22, 2011 at 5:16 PM Comments comments (150)
Welcome to the Adenomyosis Advice On-line Support page. 
Please feel free to ask any questions.
Kind regards, Danielle x

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