29 year endometriosis survivor

by Debbe
(Florida)

I am going to be 42 years old this year & I've been battling severe endometriosis for 29 years. Actually it's all that I know.

When I was younger, I allowed myself to be the "guinea pig", but after all of their medications, procedures & 5 surgeries by the age of 23 I stopped.

After 2 years, I agreed to a complete hysterectomy (no children). The only good that came from that is that I was no longer bleeding to death (would soak tampon & pad in 10 minutes if I was standing up & 30 minutes if I was laying down with my feet elevated), & no more bursting cysts (blew out one of my fallopian tubes & needed emergency surgery for that one).

In 2 years time I needed another laser surgery & emergency surgery to remove my gall bladder. Directly after that, my blood work showed first stage liver failure. I abandoned all doctors at this point.

My symptoms grew more & more until I thought what the heck do I have to lose? I started seeing an acupuncturist & was with him for 5 years. He truly helped me & if I had the money, then I would still be with him.

He said he couldn't cure me, but could reduce my symptoms & my pain levels. He did everything he promised me. Since seeing him, my endometriosis has spread to my bladder. The so-called level 4 stage for endometriosis is a joke to me. I had reached that level at 17 years old.

I have all 4 types: red, white, chocolate & microscopic. I'm in constant pain, but I hide 90% of it (used to be 98% so I guess I'm slipping). Every once in a blue moon I look up the endometriosis sites just to see what is out there. As far as my opinion, nothing has changed & this disease will take my life.

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Jun 01, 2019
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Update
by: Debbe

Wanted to thank you for responding & your kind words. I don’t know your situation, but feel free to leave it if you desire.

Since my post 4 years ago, I did make it back to my acupuncturist until he retired last year. I tried another one, but the results were not the same. My debilitating symptoms are slowly coming back so I’m filing for disability at 46!

I’m grateful that I am a very positive & strong person because chronic illnesses are exhausting & messes with your head a lot. I also have an amazing support system that I’m so grateful for everyday.

I’m not seeing anyone now, but I’m taking a different route: nutrition. I’ve had IBS since I was 17 & the last 2 years I was battling chronic diarrhea & finally that has stopped! I’m drinking organic superfoods & it’s helping my digestive issues.

I hope this helps someone & everyone who is suffering please hang in there.

Jun 01, 2019
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So sorry
by: Anonymous

I am so sorry you have had to go through all of this. This disease takes everything from us and no-one really understands. I hope you find some relief soon.
Take care

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