To mark Endometriosis Awareness Month, Sharon, one of our volunteers has bravely shared her personal experience of living with this chronic condition. A huge thank you to Sharon for sharing her story, her willingness to share her journey with endometriosis has not only shed light on a complex condition but also offers solace and solidarity to others.

 

Sharon’s Story

As you may be aware March is Endometriosis Awareness Month. When I was asked how I would feel about writing something for the blog, my initial thoughts were “I don’t think so”, “maybe someone else could do it!” However, I lay awake thinking of the what if I did write something, what if I didn’t, what could I possibly write and thought maybe this was a sign that I should write something.

Firstly, this is just part of my very long story with endometriosis and not everyone who has endometriosis will experience the same symptoms or have the same outcome as I did from the surgeries I had.

Like many people who have endometriosis or endo in short you may be totally unaware that you have the condition. I certainly was and this led to me wondering what was wrong with me and why couldn’t I handle the pain that my friends and female family members could when I was having my period. Was I just being pathetic and weak?

After many years of struggling with intense pain I did seek medical help due to severe stomach pain that was no longer being helped by paracetamol and a hot water bottle! I was sent for a scan which did show something, and I was told they wanted to investigate, and this would mean going for laparoscopic surgery. I had the operation and was told I had endo (I had never heard of it before) and was promptly told there is no cure, but symptoms could be managed.

If you are experiencing any of these symptoms –

  • Fatigue/lack of energy
  • Severe period pain
  • Depression/isolation
  • Problems with your sex life/relationships
  • An inability to conceive
  • Difficulty in fulfilling work and social commitments.

Please do go and see your doctor because the sooner endo is diagnosed the easier it is to manage and control.

I left it far too long before I went to my doctor as I just assumed what I was going though was a “normal” part of being a woman. I was not diagnosed until I was in my late twenties and on the scale the doctors used to assess how badly a patient had been affected by endo, I was told I was already at a stage 3/4 with 4 being the worst case (that would explain the excruciating pain!)

I have had a very long battle with this condition, I have had many operations and procedures over many years and suffered complications after having stents removed after a major surgery (they put stents in to help keep the ureters from being blocked during and after surgery). However when my stents were removed my ureters became blocked and I went into renal failure. This is extremely rare and meant I had to have nephrostomy tubes inserted into my back that went into my kidneys to drain them of urine as I couldn’t pass urine due to my ureters being blocked. I had Bert and Ernie yes; I named my nephrostomy tubes as they were part of my life for just over seven months. I never knew bags of urine being collected in sterile bags attached to your legs could be so heavy when full. (great workout though, who needs the gym!!)

While I was at one of my check-up appointments at the Royal Surrey Hospital, I found a leaflet about an endo support group, so I joined, which was life changing for me being with other ladies who were going through what I was and being able to talk openly and honestly with each other. Through the support group I met some of the most amazing and inspirational ladies whom I’m so pleased to call my friends. The work that some of the ladies have gone on to do to help promote this condition is amazing they have done a three peak challenge walking up mountains in their pink pants! to doing TEDx talks and even writing a book about endo!

I decided to write this to get the awareness out about endometriosis so other girls and ladies don’t have to suffer like myself and the millions of ladies who have this condition. I no longer feel ashamed of having this condition and the life changing effects it has had on my body and the struggle it has caused with my mental health.

Please know it’s okay to talk about periods and we shouldn’t fear talking about them -after all it’s a natural part of life for half of the world’s population!

Having this debilitating condition has shown me how strong and resilient a person can be and how amazing the body is at healing itself. I have met some amazing specialists, surgeons, doctors, nurses, and ladies with endo “the endo worriers!” and I will never be able to thank the NHS enough for all they have done for me.

Thank you for taking the time to read all of this and even if it helps just one person from feeling alone and scared then it has been worth it.

If you require any more information regarding help and support for endometriosis, please refer to:  www.endometriosis-uk.org.

Thank you,

Sharon

 

 

 

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