#EndoTheStigma – Erin’s Story

As today is the last day of March, I wanted to share Erin Ealey King’s endometriosis journey with you! She is an amazing warrior and it was great to hear her story this month.

Interview with Erin:

I am so happy that you agreed to share your story with me and want to thank you for taking the time to answer my questions.

Megan: How old were you when you first started suffering with endometriosis?

Erin: I started having really painful periods in high school along with frequent bad UTI’s. This started the process of seeing doctors and having tests done.

M: How did you find out about endometriosis?

E: I found out about it through my aunt. She had surgery when I was in high school for severe endometriosis and had a total hysterectomy. She also had some of her colon removed.

M: What are your symptoms?

E: I started having a lot of symptoms with pain that happened all month long. I also have issues with my bowels with shard pains in my lower abdomen and blood in my stools.

M: Can you tell me a little bit about your endometriosis diagnosis journey?

E:

When I started having my above symptoms, I kept seeing various doctors and they didn’t know what was wrong. After a while, my Gynaecologist suggested that it could be Endometriosis.

It took 7 years to be diagnosed with endometriosis. I had a laparoscopy by my first gynaecologists who diagnosed me with endo and did ablation. The gynaecologist said that it would come back and was only a matter of time until it started growing again. I was told that I would need repeat surgeries and would have issues with fertility.

When my symptoms returned and worsened, my Mom did further research. She heard about centre for Endometriosis Care from a co-worker that had surgery for severe Endo many years before and, it drastically improved her quality of life.

So, we submitted my records to CEC for review and Dr. Sinervo said I was a good candidate. He thought he could help my pain/quality of life a lot. So, had a second surgery with him (travelled from Maryland to Atlanta). He said the ablation left so much scar tissue it likely worsened all my Endo pain. So excision was a huge improvement for me and my symptoms.

About 3 years later I started having similar symptoms so I contact him (Dr. Sinervo) again. He suspected adhesions and possibly Adenomyosis. As I wanted to keep my uterus for future kids, we did lysis of adhesions. I had adhesions everywhere he had removed Endo in the precious surgery and they were all adhered to my pelvic sidewall. I also opted for a Presacral Neurectomy to help with pain for Adenomyosis.

M: How has endometriosis impacted your life?

E: It has impacted my life in so many ways for over half my life. It’s hard to describe all they ways because what I have normalised isn’t what a typically healthy woman would experience. I don’t remember what it is like not to have endometriosis.

I will say that the multiple surgeries with CEC were always worth it. I have had no recurrence and usually, only adhesions are removed.

My quality of life is far greater than what it would have been if I was still just doing repeated ablations with a non-excision expert.

M: Have you joined an online endometriosis support group and, if so, do you recommend joining one?

E: I joined Nancy’s Nook many years ago on Facebook for educational reasons. I also joined the Extrapelvicnoturare Facebook group a couple of years ago for support and for education. I highly recommend both groups.

M: As you probably know, it can take 8 years to finally get a diagnosis. What advice would you give to someone who is waiting to be told they have endometriosis?

E: I recommend a support system including one online that advocate for you. Get a second, third, fourth opinion and don’t let the doctors downplay you symptoms. You can always find another doctor and keep going until you find a professional who listens to you.

It helps to educate yourself on the issue so you can go into appointments armed with evidence-based information and can identify hoe knowledgeable they actually seem. Also find out if the specialists operate based on outdated misinformation such as retrograde menstruation. Give your body some grace and listen to it. Don’t overdo it and take care of yourself as best as you can until you can find a doctor who can truly help you.


Thank you to Erin for sharing her endometriosis journey with me on this blog. If you suffer with endometriosis and would like to share your story, DM me on twitter @MeganLauraHarr1.


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