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Survivingendometriosis

I’m a woman. It doesn’t define who I am, but it shapes my experiences. This is the story of my suffering. This is the story of my journey to overcome my incurable illness. This is a story of hope.

You are not alone. My aim is to make your plight heard. My aspiration is to spread awareness as my experience has shown me that there is a lot of prejudice and ignorance associated with the disease that makes its victims feel abandoned, misunderstood, confused and on occasions mistreated.

Please follow my blog and share the posts to spread awareness. Your comments are critical so please be vocal. You can also share your experiences with me via the following channels:

Blog: https://survivingendometriosis.com/

Email: survivingendo@yahoo.co.uk

Twitter: @surviving_endo

Facebook: https://www.facebook.com/survivingendometriosis

About me

I was initially diagnosed with Endometriosis on 26th May 2006. The diagnosis was incidental and neither me nor the doctor who diagnosed me took it any further.

I thought that my experiences were shared by every other woman. I thought all other women were braver than me for enduring their monthly pain in silence and getting on with their lives so easily. Now I know that that I’m not like other women. Now I know that I’m not well. I have endometriosis. Welcome to my world.

In the past, I was (mis)-diagnosed with Polycystic Ovaries Syndrome, low progesterone levels and plainly ‘painful periods’.

In June 2014, I was finally and firmly diagnosed with Stage II / III Endometriosis with two seven and three centimetre cysts on my ovaries. The disease was discovered accidentally by a doctor in sports medicine, following a mystery pelvic and lower back complaint which I thought to be a sports injury. By this time, I’d been in chronic pain for seven months and the quality of my life was seriously affected.

So far, I’ve had three laparoscopies, first one to remove the two Endometrial Ovarian Cysts (21st August 2014) and the second one to remove any remaining endometrial tissue  (20th November 2014). Both procedures were thought to be successful. The endometrial tissue removed during the second operation from the right ovary was thought to be shallow and small adhesions were also removed from the left ovary.

During the months between the first two operations, I suffered from severe chronic pain, extreme endo-fatigue and despair depression.

The third laparoscopy, on 04 October 2016, was to free my ovaries, which were tethered to the back of my uterus and abdominal wall with endometrial tissue, as well as to drain a number of small cysts.

In my blog, I seek to describe my experiences, how my incurable disease affected how I interact with the world and how the world interacts with me.

 

 

 

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7 Comments »

  1. Hi, I also have endo and have very recently started writing my own blog- it’s very cathartic isn’t it? I’ve been amazed by all of the positive comments and feedback I’ve received- the power of the internet eh?! I will continue to follow your blog and follow on Twitter. I hope you don’t mind that I quoted you on my blogs today and included the link for people to follow. Like you, I also want to raise awareness of this condition. Please let me know what you think of my blog and feel free to follow me! 🙂 @angel_pie84

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  2. As a stage IV endometriosis survivor and having a full hysterectomy, with the exception of a partial ovary spared so I would not go in to full menopausal at the age of 39, I am still in excessive pain and blood tests show that at 41, I am in full menopause. Many people suffering endometriosis do not realize that they can have adenmyosis which is where the inner lining of the uterus (the endometrium) breaks through the muscle wall of the uterus and causes extreme pain and bleeding. It was only after two IVF failures on two absolutely perfect embryos that I needed the surgery anyway for 3 endometriomas on my left ovary and 2 on my right ovary. At that time, I had suspicions of adenomysis so told them to take my uterus. There is no other way to biopsy the uterus unless it is removed from the body because it is such a blood filled organ, they would be unable to control the bleeding with just a biopsy. I suffered in pain from the age of 10 to 39. The Lupron injections made me suicidal-I highly recommend you speak in depth with your doctor before using them. I will soon be undergoing yet another surgical procedure to completely remove my right ovary and see where else the endometriosis has grown since two years ago. Please, I ask this for all of you out there that think “I’m going to this doctor and they’ll take care of it!” I beg you, please do you research on doctors and before they put you on any treatment plan, please research it and check it out. I’ve learned the hard way that some doctors are NOT doing what’s best for you!!! Thank you for allowing me to share my story on your blog. If anyone has personal questions for me, I am a Cerified Surgical Tech, currently going to school for nursing: ikkelly214@yahoo.com

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