Endometriosis story


  These stories can help other women so they do not feel so alone when trying to cope with effects of this disease.





I was blessed despite endometriosis

by Anonymous

Charlotte, Me and Poppy

Charlotte, Me and Poppy

This was the line that was given to me after I awoke from my lap surgery 'Have you had your kids?' It wasn't until my own research did I understand the significance of this statement. Upon reflection I know now they were questioning to find out how to approach telling me I'd never have another.

After suffering 18 months of hideous pain, that at times had me not eating for up to 7 days and lying screaming on the floor after eating just a teaspoon of food, I finally found a specialist who suggested I should schedule for a laparoscopy.

However that was the 'last' resort of a whole bunch of tests that found out I was perfectly normal. I can assure you I've felt normal before, and this wasn't normal! Anyhow arising from my deep sleep it was confirmed I had stage 4 endometriosis and I would likely need a full hysterectomy and bowel reconstruction.

Another 4 years later and whilst I am a little closer to a resolution after being dropped off a waiting list, and found another hospital can't do the surgery - I have finally found a hospital who can help.

My first test with them was a pelvic ultrasound last week which I heard again the familiar 'I'm perfectly fine'. All will be revealed I suspect in my next lap in a week's time.

Regardless of what it shows, I cannot deny I did have endometriosis for the 5 years of my life, and likely more. How I managed to fall pregant first time with both kids, without any knowledge or previous pain or symptoms I have no idea.

Sometimes I even question did endometriosis really exist. However I suffered the pain and I saw the lap images with my name on them. I did/do have endo.

I am eternally grateful in any case for my two gorgeous kids, and completely empathise with those who are unable. And whatever situation you are in I want to say don't give up hope. Heck... my stage 4 endometriosis may have miraculously disappeared again.

Now that's hope!! And that would be a miracle. Miracles do happen and my kids are living proof!



COMMENT


Name: Kat

Title: Further to the Story


I thought I'd update a week 'ish' later. I have been through my laparoscopy surgery 2 days ago. Turns out it was currently stage 2 endometriosis and they managed to remove all of the surface endometriosis which is fantastic.

It didn't involve my bowels which is great. But further to this they think most of my pain is a result of adenomyosis - so have a new diagnosis to contemplate now. They'll monitor my pain - usually treatment is hormone replacement but I struggle with variations of pills as I'm Factor V Leiden positive and have had reactions to progesterone based pills and not willing to try these.

So if it continues I may need a hysterectomy. Recovering well, up on my feet and back at work (at home) today and hopefully pretty well back to normal tomorrow.

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