I've Had Endometriosis For Almost 40 Years!

Did I grab your attention?

Let me tell you first of all, if I have any dude readers, you may want to put on your "ick" alert and move on.

Those of you that also have endometriosis, painful and extremely heavy periods, and hormonal migraines, stay tuned.  I promise I have possible hope for you at the end of my story.

Let's start at the beginning.  I was born...ha ha!  Okay not that far back, but almost.  I was pretty young when I started my period.  I was 11.  I was a FAT kid, put on weight watchers at age 9, and have struggled with my weight and body image since!  But that's a different story.  The reason I bring up being a fat kid is that I was told that was why I started my period so young. ???  This was back in 1980 so medicine has come a long way since then.

So there I was, 11 years old, with severe cramps, heavy bleeding through my clothes, and headaches to kill someone in Elementary School (back then, 6th grade was still in Elementary School).  My mother was a nurse, so therefore seemed unsympathetic to us kids and gone a lot because she worked nights and usually about 60 hours a week.  So I figured this out on my own the best I could with the help of my older sister.

I remember being at my grandma's house, in Florida, one summer and being so sick because of my period.  I must have been about 13 years old at the time.  We were raised to not talk about "lady things" and also to not complain, so I just tried to suffer in silence.  Well that was until I started puking my guts up.  She was like, "Do you have your menses?"  What in the world is that, I thought?   It sort of sounded like the word menstruation that was taught to us in sex ed (in 6th grade), so I said weakly, "yes.".  She put me to bed with a heating pad.  Oh wow, that felt a little better.  I never was without a heating pad after that.  When I got up from a rest and felt a little better, she gave me a little glass of wine for my cramps.  Now we're talking.

When I got home from Florida, I told my mom what had happened and how much better I felt.  She seemed unimpressed, but I was a kid.  Who knows what she was really thinking.  I'm guessing she was thinking that she needed a month at her mom's too.

Fast forward to my sophomore year of high school.  My period symptoms just got worse and worse if you can possibly imagine.  On day 2 of my period, I'd get faint in 5th period Spanish II.  My teacher approached me at the door and asked if I had really bad periods.  I started crying.  "YES!  I get so sick, they are awful!".  This was the first time I talked to anyone, except my sister and grandma, about my period.  I felt shame because we weren't supposed to talk about those things and I also felt relieved because Mrs. Ball seemed to understand!  I loved that woman.  My grade in Spanish improved greatly after that.  As did my attendance by the end of the day once a month.  She must have called my mom because not long after the 3rd time this happened, I found my self at my mom's gynecologist.

So here I was, 16 years old,  diagnosed with endometriosis, put on the pill for treatment, and scheduled for a laser laparoscopy, the first week of summer vacation, to burn off the scar tissue.  This was in 1986.  Back then, I took the pill every day and didn't have my period for a few years.  This was to simulate pregnancy and give the uterus a break I guess.  It was nice for a while.  I didn't mind that treatment at all.

Fast forward just a few more years and newly moved to Florida but due to my condition, needing a specialist gynecologist to continue my treatment (birth control pills mind you).  This new doctor was the best, but in my opinion he was horrible.  Hardly spoke English, so I had difficulty understanding him (I was just a kid) and he told me I was no spring chicken and if I wanted kids, I better hurry up.  (I was 19!)  Well this along with some other issues, I felt basically pressured to take the first one interested in me and do I did.  I found myself 23 years old, newly married, unhappy and wanting a baby.  Guess what?  It's hard to get pregnant with endometriosis.  I found another doctor though.  A woman who at least knew how cramps felt.  She performed my 2nd laser laparoscopy and a year later, I was miraculously pregnant!  (That marriage quickly dissolved not soon after, seeing as how I mainly got married because I was "no spring chicken" but I still got my miracle baby and oh! how I love that girl, well young woman).

Fast forward 30 more years.  I was 48, still taking the pill as treatment for endometriosis as for some reason my doctor won't give me a hysterectomy.  The pill isn't the best treatment.  It helps, don't get me wrong, but I still experience severe cramps that radiate down my legs, bad back pain, pressure on my bladder and bowels, and migraines.  I still felt weird about drinking alcohol for medicinal needs until like 8 years ago (have a teenager).  Now I don't care.  Judge away, but if you had my cramps, you'd see aleve doesn't cut it and a glass of wine does!

So what does this have to do with hope for you if you have a problems with your periods?  Here's what happened.  If you've been reading my blog, you'll know that I got really sick in late January.  Best they can figure is that I got the B strain flu and I'm currently still in recovery.  But while I was in the height of being sick, I had a lot of time to myself.  I went searching for a new online business and came across a product that I wanted to get for my husband to try for an arthritic back, hip, and restless legs.  He had great relief almost immediately and he started sleeping (which means, I started getting sleep!).  I got so excited, I became an affiliate.  I wanted others to find this relief.  I wanted to be the best affiliate possible and part of that is believing in your product and the only way to do that is to have your own testimony.

Here's part of my testimony:  I started taking the product in April in hopes of it boosting my immune system and helping with the uncomfortable swollen glands and fatigue that I've been experiencing since late January.  I've slowly been improving (as I was told it could take up to a year to recover), but I discovered some interesting side effects from taking this product.  I'm sleeping better too (not just because hubby is sleeping), I'm really calm, I haven't had issues with riding in the car or being on a boat, I haven't had a severe debilitating pain in my head in a few months!  (check out these stories here and here to understand my pain journey), and (drum roll here) I stopped having  unpleasant side effects associated with my period!   I'm 49 years old now and looking into endometrial ablation or some other form of birth control besides the pill, but in the meantime, I am thoroughly liking this not having period related discomfort.

If you are interested in learning more, please drop me an email and let me know you read my blog post on endometriosis.

I decided to share my story as it doesn't seem to be so taboo to talk about these things anymore.  I see that several bloggers now share in detail along with fashion tips for the endometriosis sufferer.  I thought I'd offer something a little different... HOPE!

I Still Have a Migraine but It's Okay!

My post I Have a Migraine and It's NOT Okay is from May of 2016 and gives a bit of history of my struggle with migraines.  The bottom line on that... 2016 ended with a neurologist confirming that the migraines were untreatable but wanted me to try Botox injections in my neck.  Alas, my insurance won't cover the cost of Botox for migraine (even though it's no way cosmetic) so I didn't pursue due to the cost.

I just continued to suffer but also continued to stay grateful and non complaining as much as possible.  Additionally, I continued to eat low carb and no sugar.  I confirmed that foods are not my triggers other than Splenda (which I don't consume other than that accidental diet lemonade from CFA).  I also continued to pursue the supplement journey.

In December of 2016, my pursuit for better overall wellness, found me starting my own business as a health and wellness distributor.  While trying to learn my business (still failing and learning to this day) and experimenting with the products I found something!  I found 2 products that have changed mine and my husband's lives!  No joke.

With use of these plant based products, over time, hubby found that he doesn't have the stomach issues he was struggling with and I found that I'm resting at night better and my pain and the nausea associated with the migraines has lessened.  The pain has became less frequent and periodically will now respond a bit to OTC pain reliever. Major game changer especially with having a long commute to a full time job while trying to build a home based business.

I AM NOT making a medical claim.  I AM saying that I've turned a corner.  Praise God!
I still have migraines.  This last one seems to want to stay a while, BUT this is the first one that I've had in almost a year that has stayed around (on and off) this long.  That's a pretty big milestone.

In my pursuit to be a better me and a better business owner, I have continued to pray and ride the personal development train.  I still listen to great podcasts in the form of sermons, network marketing training, and leadership.  What a difference they make!  Part of our stress and inability to cope is mainly in our thought patterns and our verbal complaining.  Filling my mind with positivity and taking actions toward growth helps me cope.  I have a long enough commute that I should be fully grown in about another year.  ha ha... just kidding.  I think we should all remain in a constant state of growth and development.  Those around me that don't will soon be left behind.  Just sayin'.

Have you ever heard, "Complain and Remain.  Praise and be Raised" ( Joyce Meyer from her book, "Me and My Big Mouth")?  It's true.  Yes, I still have chronic migraines.  No, I'm not going to shut my life off and not enjoy it nor can I call in sick multiple days a month.  Life is moving rapidly and I have major FOMO! (fear of missing out).  I also want to continue to grow as a person and be an encouragement to those around me.  I can't do that if I whine all of the time or if I'm "stuck".

How did I get on this ramble?  I wanted to write about the current struggle with this migraine and how I've had some migraine blues that have been hard to shake, especially today.  I thought writing about it would be therapeutic.  Well, I was right.  While I was typing this, I drank my superfoods, and I don't feel so defeated anymore.  I also don't really feel like complaining.  I feel like shouting to God how wonderful He is and how He's already healed me.   How thankful I am for an understanding and sensitive husband.  How grateful I am that these supplements have made me feel so much better and how much I've grown as a person and more towards a purpose this past year.

I still have a long way to go, but progress is progress!

I Have a Migraine and It Is NOT Okay

Death feels like my only hope.  The thoughts of cutting my temples open make me wonder if that would offer relief.

So there we were, coming down the 2nd mountain, in dense fog, rain, and in 1st gear going about 10 miles an hour.  We still had about 30 miles to go until we got down the mountain and close to home.  It had already been about 5 hours of pure hell for a trip home that should only have taken 4 hours.  I contemplated opening the door to roll out and down the mountain side.  I was in so much pain that I couldn’t stand it.  For the 3rd time, I was crying, having trouble breathing, nauseous, and shocked by the intense shakes I had.  My husband found one of the few places to pull over and stopped the car movement for me.  

After a few minutes, I said we could go again.  My husband shared his gift of story-telling and tried to distract me by fun stories from his youth all the way down the mountain.  Believe it or not, he had about 45 minutes worth of stories and a few of them, I had not heard before.  

We finally arrived home at about 3:30 am and we crawled into bed.  My husband rubbed my head and played with my hair in an effort to relax me so I could sleep.  He was exhausted himself yet took the time to care for me.  

This was the climax of a migraine that I woke up with on Saturday morning.  We were scheduled to head out of town, only about 4 hours away, to help with a move for a few hours and we needed to head back home the same day in order to retrieve Baby dog from boarding.   It ended up being a longer day than planned because I woke up in intense pain and asked if we could leave about an hour later.  My husband agreed as he was exhausted from the week anyway and could use the extra hour of sleep.  When we got up an hour later, the pain was still present, but manageable.  But I knew it was going to be a rough day for me.  I hoped I’d suffer in silence and make it through.  

I could go on with more drama, but this is just one instance of 10+ on the pain scale migraine that I often have.  As a matter of fact, according to migraine buddy (a fabulous app for migraine tracking) I have a migraine 71% of my life at about a 6 on the pain scale.  Most of the migraines are on weekdays and start at work or on the road to/from work.  Most of my triggers are stress, weather, and hormone fluctuations.  I usually have a migraine for an average of 50 hours.  Last month, my longest stretch migraine free was 4 days in a row.  

This is my life.

My husband suffers from chronic pain in the form of an arthritic back.  His pain is very real, and validated by doctors and peers.  Chronic pain sufferers also deal with extreme fatigue, depression, and sleep problems among other issues.  The pain is chronic because it’s consistent over a long period of time, yet chronic pain sufferers also experience periods of heightened pain.

Migraine sufferers endure years of pain on and off.  Mostly on.  Their pain is very real but not always validated by doctors and peers.  They suffer with extreme fatigue, depression, and sleep problems among other issues.  Additionally, they can suffer vision disturbances, super sensitivity to light and sounds, extreme nausea, trouble with speech, pain radiating to the neck and shoulders, and many other problems that interfere with work, family, friends… LIFE!

In my experience, I’ve had several MRI’s to conclude that I don’t have a brain tumor.  I’ve been on preventative treatment that didn’t really work but caused kidney stones.  Additional preventative medication that I am on now is not working, even to help with the high blood pressure.  I cannot take triptans because of the high blood pressure I now have and I hate the chest pains and trouble breathing that I experience when I take them.  Opioids do assist with heightened pain periods but doctors are unwilling to prescribe them to help me.  I no longer go to the emergency room when I have emergency room worthy migraines, such as the one described above.  They will keep you in the room for hours before they offer any relief because you are judged as a drug addict and they just need to be sure you are not.  Evidently that is what doctors think of me too since they won’t assist me with any pain relief.  But considering the last prescription was 6 pills with no refills and that was 2 years ago, I don’t think I have a drug problem.  The last prescription was a synthetic opioid and it actually caused more intense pain than what I had initially.  After giving that drug 3 tries, I threw them out.  

My next steps are to ask my gyn for the 3rd time for a hysterectomy.  As most of my migraines are during pre-menstrual times, I believe coming off of birth control and removing unnecessary parts will assist in the migraine journey.   I’ve adjusted my diet, routine, and supplements and feel like I’ve tried at least half of what I can think of to change.  We’ve been making an effort to be more active (very hard to do when you hurt).  Going gluten free felt worse than the pain, however; our diet is primarily as anti-inflammatory as possible.  I’m looking into a keto plan as I believe that might also assist with my husband’s restless legs.  I’m looking into the cost of acupuncture.  We’ve just purchased an anti-gravity chair.  Another friend mentioned botox.  I sure wish I had access to unlimited funds!  

So here I am.  Drifting through my life in constant pain, trying not to complain or mention that I have a “headache” today.  I’ve been lying to everyone about how I feel and It is not okay.

Fellow migraine sufferers, you are not alone.  I think each of our journeys are different, yet there can be unity in suffering.  Researching new ways for relief, sharing our findings, and encouraging others in the same situation. Even praying for each other.  You aren’t the only ones that get to hear kind suggestions for relief, like “just take 6 advil with a cup of coffee.” Or “it’s probably just your sinuses” or “have you tried…”.  Although meant well, depending on how you are feeling at that moment, these comments can really hurt your feelings and make your situation feel minimized.  

So here’s to understanding that each migraine sufferer’s pain and situations are unique and no one can truly understand how we feel.  But my hope is that we can still find ways to enjoy our lives as much as possible and love on those that truly try to understand us.  

I’m praying for you!