Monday, October 29, 2018

Everyone Needs to Know This about medical devices

This post is not related to our homesteading journey.  It is personal, descriptive, and possibly uncomfortable.  I wrote it a while ago and have been hesitant to post.  However, I think I have a voice to a few, and maybe it might make a difference for someone, even just one.



If you have or are contemplating a medical device implant, please, please inform yourself.  There is a documentary on Netflix that is a must see: The Bleeding Edge.  

My cousin Heather saw The Bleeding Edge almost by accident.  She told me I had to watch it.  I don't even have Netflix.  We made it work and I watched it.  Life changing!  Eye opening.






This is rather personal.

MY Essure STORY -

When I was pregnant with Scott (#4), I knew my next pregnancy would have to be my last.  When Naomi came along, my body was done having babies.

I have never used pain medication during labor and delivery and I was NOT about to have an epidural.  I wanted to breast feed and I didn't want to go under general anesthesia if I could avoid it.  My midwife highly recommended a product called "Essure" - 2 little metal coils inserted into the fallopian tubes to agitate them and form scar tissue and close them off.  It sounded just fine then.  (Note: I would not choose this today, knowing what I now know about body systems, how connective tissue works, and scar build up.)  She recommended a doctor.  "The best."
Dr. Joseph bragged about how proficient he was at this procedure. It seemed very much as if Essure was his "signature product and procedure."  It was fast and easy and no anesthesia.  The perfect solution....... Or so I thought.

The procedure on the woman before me took Dr. Joseph under 15 minutes from entering to exiting the room.  He was SO confident that this was the latest and certainly the greatest.  Then it was my turn.  The first coil went in just fine.  I felt it, but it was quick and in place.
But the other was a different story.  I had no opening in my uterus to my other fallopian tube.  Instead, I had scar tissue (I assume from the endometriosis I had while in college).  It was decided 45 minutes later with the consensus of 3 other doctors, and a couple of extra nurses in the very small procedure room, that Dr Joseph would puncture through the scar tissue at the place he "thought" the opening should be at with an alligator grabby tool and "see."  (No local anesthesia, no sedative, no nothing. - Not that it would have been effective anyway)  I felt everything.  The poking around, the prodding, the actual puncture, the tearing away of the tissue, the coil going in.  Not fun.  It was finally over with and Eric and I were out of there.

I was told that my menstrual cycle could change.  It did.  It got heavier and longer.  I had significantly more cramping and pain associated with menses and my cycle in general, although I had almost none before, from the time of my first pregnancy.  I just accepted that.

I noticed my hair falling out in greater quantities.  My mom's hair thinned quite a bit and I just figured it was going that way for me.

I felt like I couldn't focus.  I was cloudy and forgot a lot, sometimes mid sentence.  Scatterbrained.  I rationalized that it was because I had 5 young children and a busy home.  I had never had ADD or ADHD, but I wondered if I could have developed it.

Then, I started to ITCH.  My skin was even more dry than before.  When I changed my clothes, I would scratch head to toe.  "The scratch down."  Then it would take a while to "adjust" to my new clothing.  As time passed I became itchy all the time, scratching here and there.  I would inexplicably welt up in different areas of my body from time to time, sometimes everywhere.  I would go to the doctor and get a steroid, prednizone, and the rash would clear up in a couple of days.  No one seemed to care to investigate the cause, and I just wanted to stop itching.  I often described my plight like being a lizard or snake that couldn't shed its skin.

I had noticed breast tenderness off and on and more and more frequently - it was different from pregnancy and nursing, but similar.  I had swollen lymph nodes in random places that started happening after Essure.  I had anxiety attacks before Naomi was born, but the severity and frequency had significantly increased after Essure.  I would have anxiety attacks even when I felt totally calm.  Eric would ask me what I was worked up about and often times, I couldn't think of anything.  Bizarre.  Today I meditate daily in a conscience effort to decrease my anxiety and avoid random panic attacks.  But I still get them from time to time.

I was tired..... all the time.  I still am.

At one point, I became so tired that I could barely get up to drive my kiddos to school.  I would sleep, pick up Naomi from kindergarten, get her something to eat and sleep on the couch.  She watched TV mostly.  And she woke me up when it was time to get the others.  Then I would rest and barely get dinner going, if at all.  I went in to see a doctor.  SEVERE vitamin D deficiency.  I was taking mega prescription doses.  It took several weeks before I felt anywhere close to my old self.  I was told that it would be good for me to take a daily vitamin D supplement, and to go outside more.  What?  I lived on a mini farm.  I was outside daily before I became sick.  If I find myself becoming unusually tired, I increase the vitamin D. It's part of my life now, something that I monitor and have to pay attention to.  I have developed other deficiencies I monitor as well - Iron, B12, Zinc.

out cold, all the time


We had been wheat (gluten) and dairy (casein) free, for the most part for years, but I would cheat from time to time.  I found myself having worse and worse reactions when I cheated and it got to the point that I avoided and still avoid eating wheat all together.

I had noticed I became extra itchy, like scratch as hard as possible, creating raw welts, almost ripping off my skin, itchy.  Like any good scientist, I paid attention and treated it like an experiment.  I suspected a connection with chocolate.  I stopped eating it.  The severe itching had declined.  10 days later, we were out for my birthday and near the See's candy store.  I ate one truffle.  The next few days were painfully itchy.  Just to be absolutely sure, I tried some dark chocolate.  Yep, extremely itchy!  OK, no more chocolate. I never had a problem with chocolate before .  A new allergy.


I put my rather expensive, extra sensitive, sunscreen on my face at the beginning of a new summer and my face turned into a bumpy grapefruit: red, welted and burning hot.  OK allergic to sunscreen now too.



I had some moles removed on my face.  The dermatologist used a form of Benadryl because he believed me when I said that local anesthesia has not worked well for me.  I had an allergic reaction.  My face was dramatically distorted.  I looked like a version of Quasimoto's face.  I had not be allergic to Benadryl before.

Thursday, right after the procedure.

Friday

Saturday

Sunday


I began seeing a different dermatologist.  I was diagnosed with 4 different skin issues.  The blisters indicated a nickel allergy.  Then I remembered the Essure.  It turns out that Essure is nickel, the number one metal that causes allergy!  Huh?  I thought I was told it was titanium.  We tried to treat the symptoms rather than cut out my body parts for a while.  Unfortunately, nothing seemed to help and it was too much for me to handle.  Little water blister looking things popping up all over the place, incessant itching with no relief (different than dyshidrotic eczema , I have that too.)

During this time, Eric saw a facebook post about Essure side effects.  He showed me.  We read it together.
YES!
Oh NO!
What?
I had almost every side effect listed in the post!
I began making connections that many of the things I was experiencing could very likely be attributed to Essure.
I called the lawyer to file a claim in their class action lawsuit.  I got past the initial screening.  But I declined to sign the contract because I was getting it out, problem solved.  Right?

I saw a doctor to get a hysterectomy.  I had one consultation appointment with the doctor and I scheduled the surgery that day.  It would be a headache to try to submit an Essure claim to get covered by my insurance, so the doctor used my other symptoms to qualify me.  Heavy, long, very clotty menses, uterine fibroids, pelvic pain.  No blood work, no tests, no pre-operation appointment.

My recovery took a lot longer than I or the doctor had anticipated.  I literally slept for 9 days straight and the progress after that was rather slow.  My body changed.  Things were just different, and not for the better.  I thought once the coils were out, my problems would diminish.  I thought I was going a little crazy.   I rationalized that maybe my health might not be related to the Essure.  But that didn't sit right with me either.  All the changes began in 2010, the year I got the coils.

I developed a rash a couple of months after my hysterectomy, similar the ones I had been having over the previous years since Essure.  I was prescribed the usual prednisone and it went away.  I had also noticed that my rash breakouts were becoming progressively frequent and severe.


Then I got "THE RASH."  Full body, head to toe, limbs.  I went from fine to horrible full blown rash in a matter of hours.  I looked like a bumpy red grapefruit.  I was swollen, so much so that I could barely walk.  It was painful!  My skin burned and itched, and was excruciatingly painful when I scratched.  I went in to the dermatologist and got the steroid.  Nothing happened.  It didn't phase my rash in the least.  I was wrapping up in cold towels per the doctor's recommendation, and that didn't seem to help much either.
My life stopped.  I could focus on nothing else.  I was miserable.
My step mom even came to take care of me and my family.  Eric took my place at our weekly home school group, sacrificing his vacation time.  I went into the dermatology office daily.  My step mom had to be my chauffeur because I could not drive with some of the drugs I was on.  When I went in, all 4 doctors in the office would stop what they were doing and come in to see me.  I was on 11 different medications.  Nothing seemed to be helping.  I had 2 biopsies taken and nothing came of that either.  The pathologists couldn't even determine if it was an internal reaction or an external reaction.  I was warned of the possibility of a nervous breakdown several times. I was told to stop dying my hair, to wear only cotton after washing it in powdered milk to take the chemical preservatives (formaldehyde) out of it.  I was told to get a detergent for sensitive skin, that Borax in my home made detergent was probably too harsh.  No dryer sheets, but I had stopped that on my own years before, because it had bothered me so much.  My homemade bar soap was approved.  The goal was to reduce my chemical exposure as much as possible.  I still do all of the these things with the hope that it actually helps.  They even mentioned the possibility of an random/unknown autoimmune issue and autoimmune blockers.
Autoimmune blockers!?  Then if I get a cold and end up in the hospital or dead?  I'm not sure I'm ready for that trade, even now.









cold wet towel wrap


I know that doctors treat symptoms, but, I just wanted to STOP ITCHING.  It didn't help.  After 2 1/2 weeks, I used up the prescriptions and was done with some drugs and started weaning myself off of the medications.  One of the topicals made me feel like I was literally on fire.  I would lay in bed whimpering till I cried myself to sleep.  I came to understand the Bible story of Job on a personal level during that time.  Job and I will talk when I graduate from mortality!   I itched so badly that I could not focus on anyone or anything else.  I itched from morning till night, with no relief.  I was awakened from my sleep to the itching several times in any given night.  It was so bad, that I prayed fervently to not wake up.

On top of everything that I was struggling with, everyone seemed to have an explanation or a suggestion of what to do.  I did listen, and I tried to be kind and accepting.  I even tried the things that I had not done before.  But nothing worked.
As I was weaning myself off the medications, I also turned to an energy healer.  That was the beginning of recovery. I changed 2 things at once, so I am not certain about which helped.  I suspect both contributed.

After "the rash," I continued to struggle with the incessant generalized itching of before, paying attention and trying to make connections to avoid reacting,
I don't want anyone to touch me because I ITCH.  I am distracting and even annoying to be around because I am constantly scratching.  I always have blisters somewhere and crusty skin and other unsightly skin issues.  I thought that the blisters would go away.  My dermatologist said to give it 3 months.  Well, it's been a lot longer than that, over 18 months.

"The rash" came back a little over a year after the first one.
I did not feel compelled to see a doctor this time.  They did nothing to help the first time.  And many many people had their suspicions and suggestions.  Stress, exhaustion, emotional issues - usually not related to the physical.  But alas..... the welted, red, hot, itching and burning persisted despite anything I tried.

My cousin Heather suggested crypotherapy.
Cryo what?
Cryptherapy - you step into a chamber, with your head sticking out, and liquid nitrogen pumps through, becoming a gas, and you literally freeze for up to 3 minutes, dropping your skin temperature 30-40 degrees.  This does several things for the body, mostly triggering you immune response and drawing blood into the core organs, and newly oxygenated blood to the extremities, improving circulation.  "They" say it's good for just about everything:
Pain relief and muscle healing. ...
Weight Loss. ...
Reduced inflammation. ...
Preventing dementia. ...
Preventing and treating cancer. ...
Reducing anxiety and depression. ...
Improving symptoms of eczema. ...
Treating Migraine Headaches. ...
Improving symptoms of Arthritis. ...

I hoped it could just cool off the heat of the rash.  It did much more!
I went to my first appointment less than a week after the rash manifested and the next day it was noticeably improved.  I went 4 days in a row the following week and the rash was almost completely healed.
While the rash was just as severe as the time before, I had experienced it so I knew what to expect.  Rather than writhing in private, I put on my happy face and carried on with life as usual since we were traveling and visiting.
"Big girl pants ON!"
While it was terrible, the rash manifested for only 3 weeks rather than 2-3 months.  I am so grateful.

However, my treatments also stimulated my body to detoxify.  I developed more blisters than I have ever had at one time.  I traded one itch and misery for another.
But it's the healing process and despite being miserably itchy, that's good right? 

day 1

day 2

worse

day of cryo



day after

during the 4 days of cryo, but nickel blisters appearing


It was not just my arm, but I wanted to document and my arm was easiest.





A couple of weeks after the cryotherapy, I developed fungal infection and bacterial infection with sores that would not heal and oozed yellow.  It was hard to believe it was ME.  Yuck. Dyshidrotic Eczema gone awry. AND I still had all the nickel blisters that surfaced.








Heather later texted me about a video she watched.  I talked to her a few days after she texted and she said I HAD to watch it.  Something in her voice told me that it was really important.  
"THE BLEEDING EDGE"
I watched it.

WHAT?
There are tens of thousands of women who suffer from the adverse effects of Essure,
 even AFTER REMOVAL.  
I really thought that I would get better if the coils were out.  I was sorely mistaken.  The documentary informed me that I was likely going to be living with my side effects for the rest of my life.
A life sentence?  I've been trying to figure this out for 8 years, diligent in trying to get the right help, and there's nothing I can really do about it.
I am angry.
I trusted my doctors in 2010.
I trusted my dermatologists.
I trusted that removal would make me better.
I learned that removal often leaves "irretrievable fragments."  
I trusted that doctors knew better than me.  
I realized that I was suffering severe, life altering side effects, not just the dumb luck of bad health.
The damage done remains and the issues persist.
I'm not going crazy!  There is a cause and it is very real - 2 little coils placed in my body several years ago.


I feel like Naomi has only known a sickly mother.  When she shares memories, she often talks of her helping me when I was sick at some time or another.  She had to take care of me for a time.  She is usually the first one to help me when I need a helper.   None of my other children talk about that stuff. I wasn't like that before. 

Despite appearing "fine" to others,
 I am NOT FINE.
I am grateful I have a very high tolerance for pain and discomfort so that I can "push through" each day that comes.  But I am growing weary in the battle for my health.
I have cut out inflammatory foods - no wheat (gluten), no dairy, no refined sugar, no nightshades.  Nothing I do seems to be helping.
I feel betrayed.
I am beside myself at how much disregard companies and executives have for the safety of the medical device implants that go into the bodies of so many people, even after problems and concerns have been brought to their attention.
I am surviving day by day, but failing to find much joy.  It is extremely difficult to focus on others when your body uses all it's focus internally.
Surviving is not thriving!
I "don't seem sick" to others, so it's hard for anyone to have sympathy or be helpful to me.  I get it.  But that's hard too.


I again contacted the firm I talked to previously and I am moving forward, joining the class action suit. I do not take suing lightly.  But I must take a stand.
The medical device industry is huge.  Single companies sell billions of dollars worth of goods and get sued or fined for a few million. A slap on the wrist.

This is NOT in my head.  This isn't stress, anxiety, ADD, or emotionally caused.  This is REAL.  I have examined just about everything and made the connection to Essure.  I have read several posts of facebook of a couple of Essure groups - I fit right in!  Everything points to Essure.


Things I suffer and suffered, that I did not before Essure:
ITCHY, BURNING, life altering, rashes.
Blisters
Generalized daily itching
Disrupted sleep due to itching
Anemia
Vitamin D deficiency
other vitamin deficiencies
Ringing in my ears
Swollen lymph nodes
Allergy to chocolate, sunscreen, Benadryl, possibly Zyrtec, ??
No more perfume for me, or my children.
Heavy menses
Long menses
Huge clots
Abdominal cramping, post hysterectomy too
Hair loss
Brain fog
ADD type scatterbrainedness
Extreme fatigue
Nose bleeds
Frequent visits to doctors.
Relatively frequent Steroid use.
Weight gain without being able to lose it (the things that worked in the past no longer work)


Issues that existed but became significantly worse after Essure:
Losing weight
Breast tenderness
Panic attacks
Life altering increased sensitivity to just about everything.



I have removed so much from my life that sometimes I just don't realize it.  I had a taste of reality not long ago...










5 comments:

  1. Thank you so much for sharing your story! Dave has a cousin who is dealing with similar issues after a copper IUD perforated her uterus and floated around in her abdomen for many years before doctors found it and removed it. She is still dealing with the after effects of the IUD as well as copper poisoning.

    I am especially grateful for these stories when my midwives start pushing for IUDs or even hormonal birth control.

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    1. More fuel for your fire....

      I tried the pill and depo when I was much younger. It was NOT a good experience. My body did not react well to hormonal birth control.

      I tried an IUD once, after learning that hormones were not for me. I got pregnant and the removal "possibly" resulted in a 2nd trimester miscarriage of a baby boy. It was heartbreaking.

      There are tens of thousands of women adversely affected by Essure. The class action law suit claim was abruptly closed 10.31.18 with about a 10 day notice. However, an official statement made 7.20.18 said that Bayer would stop distributing Essure in the USA 12.31.18. (So Essure could be available well into 2019)
      It's still on the market! And the lawsuit is closed?

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  3. I had my essure in 2012 and have similar issues although not as severe as yours. I developed dermographic rashes called skin writing that would produce welts anywhere I scratched that would burn. I also was diagnosed with Rheumatoid arthritis shortly after 2012...all of my problems started AFTER the essure. I still have it because of the difficulty in removing it and it won't be covered 100% by insurance and I have read from many that their symptons did not improve and often got worse. I am also allegeric to Nickel but was NOT told essure had nickel because I would have NEVER agreed to have it implanted. Initially I was not able to join the class action lawsuit because I did not have it removed but they have been accepting people that still have it because I am suffering just like everyone else. All of this could have been avoided if the drug maker (bayer) had been more upfront with the side affects instead of pushing this easy form of sterilization on unsuspecting women. I have suffered with my medical issues EVERY SINGLE DAY for the last 6 years and did not think essure was to blame at first and blamed all kinds of things but now I know it is and I have not been able to convince multiple Drs my various symptons are related so that adds to the frustration, many Drs don't even know what essure is.

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    1. Well, in this instance, I can say I COMPLETELY understand where you are at. I didn't know dermographic rashes were a thing. I have that too. (sigh) I am there with you. It took over 18 months to 100% convince my dermatologist. But they had no answers. And we recently moved to a different state. I have been to 2 doctors so far,and I am back into the "crazy lady" condescending arrogance of doctors that don't know any better. I truly wish you well.

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