My story begins all the way back to when I was a baby....this is where the damage began to my body and where endometriosis was encouraged to grow. It started with chronic ear infections as a baby. So began years of medications and ear drum ruptures. I can remember ear pain and ruptures vividly as a child. There were surgeries to put tubes in and take tubes out. There was going too deep in the pool and my ear bleeding from it. There was hearing loss, hearing tests, and learning to read lips. I still read lips. Decongestants went down almost daily. Antibiotics and pain medications went down pretty regularly.
I outgrew the chronic ear infections around age 10ish if I remember correctly. I continued to get them into adulthood until I cut out dairy. Dairy causes mucous in the body. Mucous clogs the ears and infection begins.
At age 11, I also began suffering with what I would later come to know as endometriosis. My cycles weren't like the other girls. I was in agony for weeks at a time. But I wouldn't know why until after my second child was born 15 years later. In junior high I started taking prescription pain killers to manage the endo pain.
At age 12 we were on a family summer trip to Oregon and my knees started aching. Then they swelled up huge and red. I was in so much pain I could barely walk. I remember my dad carrying me from spot to spot. We went to the ER but they said they'd have to run tests and we might as well wait till we got home. I remember being scared that something was happening to me that would make it so that I couldn't walk again. Thankfully that didn't come true.
We got home and mom started taking me to doctor appointments. The pediatrician, the lab for lots of blood tests, a rheumatologist, an orthopedic. The blood tests all came back negative. No lupus, no lymes disease, no arthritis. The orthopedic recommended leg braces and physical therapy. I wore leg braces from that point on through high school. I went to physical therapy through high school which seemed to help some but it didn't go away completely.
My knees have continued to ache off and on my entire adult life. The aching is now in most of my joints and peaks with my endometriosis cycles. I now know that I most likely did contract lymes disease (lymes is now detectible in different ways and may not be the only bacteria they originally thought it was). Lymes bacteria is now known for taking up residence in dental work such as root canals, implants, crowns, and bridges. I had a root canal at age 12. Knowing what I know now about endometriosis being considered an autoimmune disease, I believe that my joint pain was either related to lymes disease or fibromyalgia (a condition I thought for years was just a made up disease by lazy women who wanted attention. Now that I have it myself I realize it's a very real disease!). It's easy to see how between lymes disease, a root canal, and fybramialgia I was experiencing severe joint pain and even swelling. I learned to manage this pain through physical therapy and medications.
After high school I went to college, bright eyed about the future and excited about life. I look back and consider myself a pretty bubbly girl at the time. I met my husband and our friendship grew as we dated.
While away at college my pain started to get worse. I drove myself to the hospital one day and checked myself in as I was buckled over in pain. My doctor, my parents, and my husband (boyfriend at the time) met me there. I was bleeding internally from a ruptured cyst. I never thought twice that this would be related to anything else and once I was well enough I went back to school. I was under the impression that women got cyst on their ovaries that ruptured from time to time...and that it was normal.
Still, I sensed something was much bigger was wrong.
I had been on birth control pills since I was about 13 years old or so and continued on them thinking they were "managing my pain" but they truly were not.
When we started talking about marriage, I warned him of my concerns and fears. We talked about the "what if" of not being able to have children. He was okay with that. We talked about what we would do or not do if that happened.
We married. I stayed on the BC pill.
My pain continued and so I continued to take prescription pain pills.
We decided to try for a baby and surprisingly I got pregnant pretty quickly. I was shocked and happy. Maybe there was nothing wrong after all.
15 months after he was born I was expecting another baby.
"Clearly nothing major was wrong"....is what I thought in my own mind.
When our second baby was about 2 years old the endo (endometriosis) pain began to intensify. and no more babies came.
I started seeing my doctor more and more.
More pain pills.
A friend suggested a word I had never heard before. Endometriosis.
Endomeetwhat?
She gave me a book that mentioned it briefly and as I poured over the few pages in the short chapter I knew it was what I had. The book described me. I wasn't normal. I had a disease.
Next doctor appointment I suggested it to my doctor (since she never suggested it to me) and she said that "why yes, it does sound like you might have that."
I left her office frustrated that I had to suggest TO HER what might be wrong with me and with more prescriptions in my hand for pain pills I went home.
The pain continued to get worse and worse. I was now in pain every. single. day. I also had been spotting nearly every day for the past several years.
I kept going to see my doctor.
She kept giving me stronger and more varieties of....you guessed it, pain pills.
She talked about sending me to a pain management doctor because I was reaching the max amount she was legally allowed to prescribe as an ob/gyn.
She never once mentioned that all of these pain pills were most likely destroying my liver even more and damaging the lining of my stomach. Not once. I was clueless that I was slowly destroying my organs!
She said there is no cure for endometriosis but that it would go away when I reached menopause. (I found out later that this is not true.)
She gave me my options:
-go on birth control pills again (despite popular belief among doctors, I believe that birth control pills are partly to blame for getting me into this mess and I was convinced from the small amount of research I had done that raising my estrogen was only going to make things worse not better!)
-laparoscopy (to officially diagnose me and to scrape out my insides of any endo)
-have a hysterectomy (which come to find out later is not a solution at all! it just comes back uterus or no uterus)
-drug induced menopause (clears it up temporarily but you can only do this for 6 months at a time and it would cause osteoporosis not to mention crazy menopause symptoms)
Not the greatest options considering we were still hoping for more children.
Laparoscopy seemed like the best first step. Endometriosis does not show up on ultrasounds, does not present any signs through a blood test, and is not detectable through exams. The only way to confirm the suspicion of endo is to cut you open and look inside of you.
I went into surgery. They found endometriosis all over. When they opened me up, they could see that I was bleeding internally. It was worse than the doctor was anticipating.
This surgery revealed that my ovaries were embedded in my uterus. What happens with endo is that your body doesn't know what to do with the endometriosis so it begins trying to cover it with scar tissue. The scar tissue works like webbing and binds your internal parts together....causing, you guessed it, more pain.
She dug my ovaries out of my uterus. She scraped out the insides of my fallopian tubes in hopes that it would allow another pregnancy.
I came out of surgery.
She came in to brief me and explained that my uterus was also fused to my bowel. That was serious. Too serious for her to touch during the laparoscopic surgery. I was horrified at what this disease was doing to my body but I knew no way to stop it.
I started researching. I could find almost nothing about this disease other than several articles stating that very little was known about it and that there is no cure or any real treatment for it. The very few natural suggestions I came across at the time didn't seem to make much of a difference at all. I felt I was at the mercy of my doctor.
The pain intensified.
I never became pregnant again.
My doctor told me that my first two pregnancies were nothing short of miraculous because people with my stage of endo don't have babies.
I realized that my intuition years ago about infertility was right. My fears were coming true now but I was thankful that God had blessed us with two miracle babies despite my disease. Yet, at this point I started grieving the big family we wanted to have.
And yet again, post surgery, my pain continued on and continued to intensify.
There were days when the prescription pain pills couldn't touch the pain. I would be in so much pain I would throw up. I would lay on the bed or on the floor writhing in agony. I was starting to spend 2-3 weeks of every month in bed or on the sofa. My quality of life was slipping away from me. I was missing out on enjoying the two sweet children I did have already.
When I would work through the worst of the pain it would leave me exhausted and beat up. I would usually pass out asleep from pure exhaustion. Fighting the pain left me defeated and weak.
I called my doctor in a I-can't-possibly-go-on-another-day moment and she talked me into trying birth control pills again.
I took two weeks worth of bc pills and then had the worst pain in my entire endometriosis life. My husband and my parents were all out of town so I called my sister because I couldn't take care of my kids and I was shaking uncontrollably from the pain, crawling on the floor to get to the toilet because the pain was causing vomiting and I kept passing out.
I called my doctor back and said that I was ready for the hysterectomy. I knew no other option at the time that wouldn't harm my body worse and I couldn't go through another cycle of pain without having morphine. I had also thought that a hysterectomy would cure endometriosis...which I found out later that it does not.
I hated my decision. I didn't talk to anyone about it. I felt my hands were tied and I was devastated.
A week before my surgery my doctor explained that the hysterectomy would not cure my endometriosis. I was confused. Up to this point I thought it would. I'll never forget that moment in that exam room when she explained to me that my ovaries are what produce the hormones that feed the endometriosis and that I was too young to have both my ovaries taken out. She said that she couldn't give me enough synthetic hormones to make me feel like a normal person. BUT she also explained that even the synthetic hormones would feed the endometriosis.
What? I was even more devastated. You mean this won't cure it? I cried right there in the exam room. Apparently the only reason to have a hysterectomy was to lessen my pain levels.
My doctor explained that because my uterus was fused to my bowel (happens to 1 percentile of women with endo) that my surgery would be high risk and that I would have to recover on the heart patient floor for two days.
I wrote a letter to each of my children in case..... in case I didn't make it through the surgery or recovery.
My surgery did not go well. I opted to be put out instead of an epidural (to avoid the risk of being paralyzed) against my doctor's advice and because of doing so I was in terrible pain coming out of surgery. So much so that all I could muster out was one weak word with all my might trying to get help from the nurse.... h.....e......l......p..... with tears streaming down my face. I felt like a meat grinder had been taken to my abdomen. I was on fire. I was convinced I was dying. Again, a trembling h.....e......l.......p......the nurse came over and said "honey, we've given you everything we can, sorry." I closed my eyes to die because I thought I surely was.
Come to find out later, my husband was quite concerned in the waiting room because my surgery took twice as long as expected (4 hours instead of 2) and I lost so much blood that they came close to giving me a transfusion. My two days recovering on the heart patient floor turned into four agonizing days of pain in that hospital bed. The morphine made me hallucinate and the nurse put trash bag sized bags of ice on my belly. I was frozen and still in pain.
Still, I lived.
I went home and began a long and frustrating nine month recovery.
Each month, that displaced uterine lining fills with blood and releases it, just like a uterus does every month. Internal bleeding. Cramping, pain, pain, pain.
It was becoming chronic again and I didn't even have a uterus anymore.
I was also dealing with terrible allergies that I had my whole life. I started doing allergy treatment shots only to find out the hard way that I'm (again) in the 1 percentile of people who are allergic to the SHOTS! So I gave up on that and just kept taking allergy meds even though they weren't helping much. I later learned that allergies are connected to your liver health, digestion, and your immune system health. All things that were connected to endometiosis and or taking pain pills.
About this time I started hearing of friends that also had endometriosis. Women who have this don't talk about it. I call it the silent disease. You can't tell a woman has it and she usually suffers in the privacy of her own home, not going out when her pain is above what she can manage.
I learned that one friend had a hysterectomy and both ovaries taken with it. She was younger than I. She now suffers from terrible crippling migraines because of hormone imbalance.
Another friend much older than me and into menopause was still suffering terribly. Her endo had grown through the vaginal wall so she was having a "period" again every month even though she'd already had a hysterectomy. Soon this started happening to me.
Friend after friend with endo.....some dealing with other things at the same time like thyroid cancer, celiac disease, PCOS, IBS, and more. (I learned later that all of these are connected to liver health and immune system health as well as endo.)
How could they manage endo let alone other health issues. I hurt for these women. I grieved for myself as I was clearly becoming an endometriosis casualty as well.
Still, I pressed on with my pain pills in hand. Not sure what I would do next to manage my pain.
Years were going by and I was noticing that my pain was fluctuating with my stress levels. Bummer. So stress was making it worse too. I felt like I couldn't win.
Then we moved to Washington. The wet side of Washington. There is a dry side and a wet side.
I knew before coming to Washington that I was allergic to mold. I became ill. On top of that what I did not take into account at this time was that I had just gone through some very difficult life situations that caused a lot of grief, fear, worry, anxiety, bitterness, and frustration. I know now just how much our emotional well being can effect our internal health.
I became very ill with the flu our second winter there and pretty much never recovered all the way. I thought it was the mold. Mostly it was my immune system finally crashing but I later learned that mold was now attacking my blood stream. I had a rare form of mold poisoning.
I had double ear infections during that time, one eardrum ruptured and a series of sinus infections over the span of nine long months. My ears hurt all the time, popped and crackled all the time, and sometimes had a burning pulsating pain that would bring me to tears. I went to an ENT (yet again) and they recommended doing a nasal rinse daily. That's it.
Nasal rinsing wasn't going to solve my problems but I did it anyway. I did not improve at all. The nasal rinsing helped me cope with some of the sinus symptoms but it sure wasn't curing anything.
I decided that I was done with medical doctors.
I found a ND (naturopathic doctor) and started going to see him. He quickly decided that my problem was food allergies. He put me on a food allergy restricted diet and started doing acupuncture. I continued to feel worse. I was weak, on the sofa most days unable to think straight and the sinus and ear pain and trouble continued with zero improvement and now I was also hungry on top of it. When he had me reintroduce the allergy foods, I had a reaction to every single one of them. That meant I couldn't add any of those back into my diet.
They were:
wheat
gluten
corn
tomatoes
shell fish
peanuts
nuts
dairy
citrus
soy
and I'm probably missing a few here.
I saw this ND for 6 months. and I continued to feel worse and worse. The sinus infections were terrible and he prescribed me more antibiotics (more damage to the liver and gut). None of his homeopathic remedies were working. It got so bad that once again, I couldn't take care of my kids or myself. My husband drove me out to my parent's house two states away so they could take care of me and the kids. I stayed in bed for a week there.
While I was there, my sister recommended her ND that was treating her for mold allergies and was having great success. So I schlepped my sick self off to see him. And so began another 6 months of treatments.
This new ND felt that my issue was candida. After taking a candida test that the result ranges are as follows:
0-60 candida might be a problem
61-120 candida is for sure a problem
121-180 candida is a severe problem
I scored 400.
I later learned that a compromised digestive system is the perfect breading ground for candida (bad gut bacteria). Antibiotics kill off the good and bad bacteria but if you don't reintroduce good bacteria in your gut the bad bacteria flourishes. Not only that but strands of live candida burrow holes in your intestines (further creating leaky gut). Most endo women have candida issues which cause all kinds of problems.
I began a candida detox program and diet.
I had good days and bad days.
Towards the end of the 6 months I felt pretty good and like I was getting better.
And then......
I got sick with a little head cold. No big deal right?
My feet started swelling and broke out in a rash. They were itching terribly. Then what seemed like hives or yeast blisters, started erupting on my feet. My kidneys were aching terribly in my back. I couldn't sleep at night at all. I sat in the bathtub longing for some relief only to break out in a rash every time I took a bath. The itching was so intense. I tried not to scratch but had to at times. My feet were bleeding from the scratching.
I tried every remedy in the book, soaking them in everything I could think of. My new ND was stumped. He didn't know what to tell me. After a week of this, I called my parents and they figured that my kidneys were overloaded with the detox and with being sick. I started taking activated charcoal to help pull the toxins out of my system and my feet started to improve.
I later figured out that this ND had detoxed me too fast and my already compromised kidneys couldn't handle the detox. Swelling in the feet (or just about any feet issues) is related to kidney trouble.
I thought I was past the worst of it. The next few weeks I felt great and started up on the detox program again.
That brings us up to January 2013.
I started having some stomach pain.
Called my ND and he was stumped yet again.
Called mom again and between the two of us figured out that it must be a stomach ulcer.
Called ND and suggested the stomach ulcer. He said "eat chicken soup".
Okay. what on earth?
Began doing research online.
Ulcers are caused by two things:
- a bacteria called H. Pylori
- pain pills (ibuprofens and aspirins)
My mom walked me through what to do to naturally to heal a stomach ulcer. She mailed me some herbs from their ND.
Then my kidneys started up again. I called my ND about my kidneys and he basically said "I don't know what's wrong with you so you better just go to the ER." He didn't feel comfortable treating me any longer.
I had been dumped by my ND. Discouraged does not even come close to describing how devastated I was once again. Where could I turn? I felt I had exhausted MDs and NDs.
But since I was taking the herbs from my parent's ND and they were providing some relief I figured that I might as well see if their ND could figure out what was wrong with me and give me direction on taking their pills since I was already taking them without their guidance.
Yet I had a bigger problem on my hands at the moment.
My old enemy, endometriosis.
What was I going to do when pain hit and I couldn't take an ibuprofen because of this new stomach ulcer?
I was scared to death of facing that pain.
Even though many years ago I had found nothing about treating endo naturally, I started searching the internet in hopes of finding at least some natural pain remedies.
I found more than I hoped for at www.cureendometriosis.com. A blog by a girl named Melissa suffering with the same disease, only she's had 9 surgeries! She started the blog 2 years previous to me stumbling upon it. And in those 2 years she had healed her endo to the point of just one day of pain a month.
I actually cried tears of joy as I read through all the information she has posted. For one thing I wasn't alone! Her private facebook page has a huge following of women suffering just like me. I was also so overwhelmed with hope of healing. She had so much info on there and I was starting to connect all the dots about my health and endo. All my new symptoms are connected with endo. Who knew?!
The dots were suddenly all starting to connect. Antibiotics and medications from the time I was an infant had begun to damage my liver. Next was my immune system and my thyroid. It was a downward spiral. Next up was stomach damage from all the pain pills hence the stomach ulcers. Once my liver (and also gall bladder) was compromised, dairy, allergies, candida, hormones and the rest of it all started to make my life miserable. It's all connected. It all makes sense and now I can finally do something about it.
Having endometriosis has taught me so much. about the human body, about health, about the way we eat, about herbs, about the balance of the body, about other environmental diseases and about pain and suffering. For those reasons I can actually be thankful for what endo has taught me.
I started the natural pain remedies immediately and the endo diet and that first month my pain levels went from a 10 to a about a 6. I haven't touched a pain pill since that first week in Jan. 2013. I've managed the endo pain on my own and completely naturally! My pain levels continue to go down the more I strive to heal my liver, gall bladder, stomach, intestines, thyroid, immune system (lymph nodes). Some other symptoms I've had are more of the emotional nature (anxiety, depression, mood swings, pms) and I'm healing those too by going to counseling.
My new ND ran tons of tests on me and quickly identified areas of compromise. Several of these are typical to endo women: liver, gall bladder, stomach, pancreas, kidneys, bladder, small intestine, thyroid, lymph nodes, adrenals, low potassium, fibromyalgia, food allergies, low minerals, high PH, low electrolytes, low blood sugar, high ureas, anxiety, and bacteria in my blood. Craziest of all, this newest ND discovered that I had contracted salmonella which was also destroying my digestive system. This new ND was different than the rest. Not trained only here in US naturopathy (which is mostly homeopathic), this group was trained in European naturopathy as well! So thankful for them! So thankful to be living in a state that still has NDs with broad education unlike many states who only approve of US naturopathy schools for their licensing.
Endometriosis is a sign (or a signal if you will) that there is much more wrong inside of you than just some hormones going wrong. Endo is a sign that something major in your overall health is declining. Without endo I wouldn't have known that my whole body and my internal organs needed healing. Now I'm on the path to healing emotionally and physically. For that reason, I've learned to be thankful for endometriosis and how it was the signal I needed to find true healing.
It's now 2016. I've gone a whole year without any endo pain. Off and on I do deal with some flare ups but overall I'm having victory healing this monster called endometriosis....and my whole body for that matter.
UPDATE: It's now 2023 and I still deal with endo pain from time to time but I know that it's triggered by the fluctuation of hormones now that I'm going through menopause. This is common but I continue to manage my pain naturally as much as possible and work hard to keep my hormones balanced with bioidentical hormone therapy through my nurse practictioner.
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