Beyond Chronic Chaos

My Endometriosis Story

When I was eleven years old, I started my period.   I had horrible cramps and would double over in pain from it.  My periods would last 5 to 7 days and I would bleed through super pads and super tampons in an hour.  I thought this was normal.  I never knew anything different.  

My parents took me to the doctors and they put me on birth control at 14 to control the ovarian cysts, periods and cramps.  I don’t remember if it ever help, but I am pretty sure it never really did much except control the cysts.  

There were times that I would crawl across the floor to get the Midol to help relieve some sort of pain.  My mom never believed me it was that bad.  And there were times she would even laugh because she thought I was being so dramatic.  Her periods weren’t that bad so she had no concept of how bad mine were and thought I was exaggerating.  

It seems a lot of people have this same story.  If you have never experienced this then you have no concept of how bad this actually is.  Doctors had no clue what to do and just assumed this is just how my periods were. As the years went on doctors would tell me it isn’t that bad and just to take birth control. I would rather give birth than have these period cramps, that isn’t normal.

So after years of dealing with this pain, having three babies (yes I am one of the lucky ones), we fast forward to me being 29 years old.  At this point I have been dealing with this for 17 years!!!! 

In early 2011, I started having pain round the clock, all month long.  It no longer was with my cycle. I had no insurance so I was going to Planned Parenthood for them to treat me (aside from being hospitalized).  At the time, the doctors told me I had Pelvic Inflammatory Disease (PID).  I was pumped full of antibiotics. The pain lasted for weeks. In March of 2011, I ended up hospitalized for pain and the oral antibiotics weren’t working.  Looking back I am pretty sure I never had PID, maybe I did, but that was a full blown endometriosis flare.  

Finally, when I had my post hospital check up with PP, the nurse practitioner said “Have you ever heard of endometriosis?  I am pretty sure you have it.”  I ran home to look it up, YES THAT’S WHAT THIS IS!!!  Finally, I had some sort of answer for the way I had been feeling all these years.  But guess what?  I had no insurance.  

There was nothing PP could do for me except putting me on continuous birth control so I never had a period, which can help reduce the pain.  I had to wait three more years to finally be able to see a doctor to deal with this.  

The pain was horrific, at this point the pain had increased to the point that I was never out of pain, it no longer came in cycles, it was just constant pain!

In January of 2014, I was lucky enough to finally have health insurance and walk into a gynecologist office that believed my pain.  I explained my symptoms.  I had horrid constant pain, excruciating pain with intercourse, pain standing, sitting or lying down, pain with anything I did, stabbing pain in my pelvis and ovary, down my legs, into my back.  I was never relieved of pain, nothing I did helped.  

She looked at me and said I think you have endometriosis, I want to do surgery.  She explained she would go in and do exploratory surgery and if she found endometriosis she would burn it out.  Ok, do surgery, make this better, do anything you need to!!!  

Little did I know ablation (which is the surgery she did), burning out the endometriosis, was the worst thing we could do, yet the best thing because I would finally have an answer.

After getting the insurance approvals and on the surgery schedule, late March I finally had my surgery.  I was a basket case the night before.  I had been told my whole life this wasn’t real and this was how it was, what if she found nothing?!!!!  What if it all was in my head?!  

Well, that wasn’t true!  I was covered in endometriosis.  She found it on all over my uterus and ovaries and even on my liver and other places. She burned off what she could and closed me up.  She said it was the worst endometriosis she had seen.  

Sweet, I have endometriosis and now I am done with this.  Little did I know that wasn’t the case!  Come to find out endometriosis is like a weed.  If you burn it off, it almost spreads like wildfire and implants “seeds” everywhere in your abdomen.

The pain subsided a little but never went away, sure it went down a little but I was still in pain after the surgery.  I went back into her and she said Lupron is the way to go.  It puts you into menopause and stops the endo from growing, it’s the best bet for endo.  I did it.  

I took the shot in June of that year.  

The hot flashes started, the hair falling out started, and the pain increased.  

Little did I know I would later call this drug the Devil’s drug.  

Being on Lupron was hell.  

I had no support system that had ever dealt with endometriosis and believed what the doctor told me.  I never looked up Lupron.  It is a chemotherapy drug.  If I had known then what I know now, I wouldn’t get within 100 feet of that shot!

So Lupron failed, birth control pills failed, so hysterectomy is all I can do.  Once again no research on my part!!!  What is my problem?!  I have learned my lesson now, I research everything and trust no words coming out of doctor’s mouths!!!!!  

Well the nice part is I finally got hooked up with some endo support groups.  Low and behold there is a doctor here in Oregon who knows more about endo then my normal gynecologist so I switched doctors.  The new doctor agreed that I needed a hysterectomy because she was pretty sure I had adenomyosis also!  We scheduled that surgery for December of 2014.  

The emotions of the ups and downs of this year was horrible.  Between the pain, failing treatments and now having a hysterectomy presented to me, it was horrible.  Sure I was done having kids but for someone to take that option away from me, I wasn’t ready for it!  But I went through with the surgery.

The doctor scheduled the surgery for 2 hours, I had just had the endo cleaned out, there shouldn’t be too much so it was basically a little clean-up and a hysterectomy.  

Boy were we wrong!!!  I was in surgery for four hours.  I was totally covered in endometriosis.  

I had it on my bladder, which got reconstructed, my ovary was attached to my colon, my left ovary was totally encased in endo, it was on my diaphragm, ligaments, tendons, nerves, cul de sac, to name a few.  It was everywhere.  Those were the big areas.  She excised (cut out) what she could but some areas were so delicate that she had to ablate them.  Dammit, ablation again.  I was diagnosed with Stage IV endometriosis, adenomyosis and fibroids in and on my uterus.

Recovery was hell.  It was the longest recovery ever.  I kept reminding myself I had basically three surgeries all in one, bladder reconstruction, hysterectomy and excision of endo.  After three months of recovery I realized that I was healed and this pain wasn’t going away.  

I told the doctor I am pretty sure my body hates me and that I was still in pain.  She told me I would be lucky if my pain ever went below a three on the pain scale in my life.  Woah that is not what I was expecting.  

I went into that surgery with the expectation that this was going to be it.  Excision is the way to go.  It is the best chance of relief of endometriosis.  We took out the uterus which was so much pain from the adeno and the fibroids. I should be fine now, at the very least it should have bought me a few pain free years.  

The emotions that happened for months after that were a roller coaster.  I thank God every day for my kids and husband because if it weren’t for them I wouldn’t be here writing this.  

The depression and desperation were deep.  I went through all the steps of grieving.  I was grieving the loss of a life that I thought I would have.  The loss of the idea of the mom I wanted to be.  The loss of the idea of the wife I wanted to be and of course the person I wanted to be.

During the 2 years after that surgery I had been to countless number of doctors, I experienced numbness and tingling in my extremities, uterus pain, pain with sex, pain with bowels and urinating, pain sneezing, hot flashes, crazy all over the place emotions, so much more!!!!  I have been diagnosed with fibromyalgia, probably thanks to Lupron.  I have been to more doctor appointments than I ever have in my life.  I have seen more specialists than I care to admit.  

I had to quit even working from home, I couldn’t handle that.  I cancel plans and stay at home a lot.  If you know me, you know that isn’t me, I like to be anywhere but home, I like to go go go.  I can’t!  I have had to accept snuggling my kids is better than taking them places.  

I have learned to decide that today’s activities are worth doing and scheduling in time to recover or decide today’s activities aren’t worth the recovery and cancel it.  

I have learned to live by the spoon theory. (If you haven’t read it, it is worth it!)  

I have learned that I am teaching my kids to be sympathetic, self-sufficient, compassionate, empathetic, flexible, and patient.  Most kids will never get these lessons, heck most adults don’t understand these things, but my kids are professional at it!

In 2018, I found Pearl Women’s Health.  Finally I had a doctor with experience.  Dr Rosenfield had a top excision surgeon as his partner.  They did such a complete surgery on me I finally had relief of pain for over 6 months.  Once again they went in and I was covered in endometriosis.  This is such an aggressive disease.  It is exhausting. 

At least this time I didn’t lose another organ!

But alas, the pain came back.

In 2019, the pain came back with a big cyst.  It was time to do another SURGERY.  Yep you counted it right, surgery number 4 in 5 years for endometriosis.  More endometriosis was found.  More endometriosis was hidden.  Another organ LOST

Finally I have gotten relief.  

Finally, there is hope to living some what pain free.  It isn’t perfect.  But my days aren’t spent curled up with a heating pad.  I can handle this.  

  
The journey will always continue and will be full of ups and downs.  It will be emotional and painful.  It will be full of questions and hopefully some answers.  

I am sure there will be more surgeries.  There will be future pain.  This isn’t it.  But it is the best we can do daily.

Until we can get a cure for this we will have to raise awareness and hope that doctors become more empathetic about our pain.  We are not drug seekers, exaggerators or crazy in our head.  

This is real.  This is our daily life.  It is our daily life.  There are people out there that understand.   Find a support group of people to surround yourself with.  

Other people that are going through this is invaluable, their knowledge and experience is something you can’t find with your best friend.
Yes a supportive family and friends are great but there is nothing like some that says I know what you are feeling.

Endometriosis has robbed me of the life I thought I would have.  But I refuse to let it rob my daughters of lives, if heaven forbid they end up with this horrid disease also.  This is why we need awareness and research.  This disease affects more women than breast cancer does, 10% of women are affected by this disease.  Someone said if you know 10 women you know endometriosis.  You know endometriosis!

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