Sometimes it's nice to hear about what other women experience with endo, since the symptoms can be so widely varied, and also to see how you can indeed reverse the disease.
I battled with hormonal imbalances my whole life ... like, I didn't get my period until I was 21 when I moved to Kaua`i. I saw many doctors over the years who didn't know what to do besides prescribe birth control (a running theme in my life, now an ongoing joke) to get my period to "jump start". Nothing worked until I left my life of stress for the slower pace of rural living.
The irony was that I only have my period for a year before I started getting really bad PMS. From the day of ovulation, which was never consistent, my boobs would grow from A's to C's and be so so painful, I went from perfect skin to inflamed acne all over my chin, and bloating that was preggo in scope. I can't even believe how many pregnancy tests I bought convinced I must be pregnant, only to get my period a few days later. Of course the doctor solution: birth control! (insert annoyed laugh here). I declined at the time because I a) react terribly to hormonal birth control and b) didn't see how inserting foreign hormones into my body would solve the problem.
But I never had pain, so I didn't think much if it. Not like the pain I experienced from sex one night when I was 24. It was so obliterating I thought my uterus had exploded, and I could barely move for 45 minutes. My roommate and I of course get on google the next day and look at everything it could be, whirling around and around endometriosis but ruling it out because my "periods" weren't painful. We decided on cancer, so I went to the doctor to tell him.
Hearing everyone else's stories of diagnosis, I realize I was really lucky. After first being misdiagnosed with chlamydia - embarrassing - my second doctor (a woman) immediately thought I had endo. She must have seen it before, and sent me for an ultrasound which showed what she suspected, free-flowing blood in my abdominal cavity. I was told my solutions were slim, I could go on birth control (omg again?!), then if that didn't get either get a depo shot, surgery, lupron, or a hysterectomy.
I finally agreed on the birth control, sigh. Oh, and a boat-load of ibuprofen. Bad idea.
After I went on birth control some of the intense pain diminished since I was no longer ovulating, which caused me the greatest discomfort. What developed though was a series of other symptoms that started eating away at my health
- Terrible Stomach Acid: From all the ibuprofen (sometimes up to 800mg/day) I developed terrible stomach acid, so bad sometimes I could barely eat. To remedy this my doctor gave me the antacid Prilosec. If you know about digestions you understand how taking a lot of antacids prohibit the uptake of nutrients and stops proper digestion from happening.
- Terrible "Churning" Feeling when I got my heart rate up: this was my most peculiar symptom. I was a very active person, and what developed was this feeling like my uterus or stomach or something was going to, oh I don't know, maybe just plain fall-out-of-my-body when I got my heart rate up. Whether it was surfing, running, whatever, I couldn't do it. Made me feel like a prisoner in my own body
- Terrible pain during sex: not all the time, but as the symptoms progressed this one did too. Luckily my boyfriend was extremely supportive and caring, but it still definitely takes a toll on your relationship when you're can't be intimate.
- Pain all the time: this was why I didn't think I had endo at first. The pain was never really at my period, but it ended up being there nearly all the time. I could almost always feel it in my couldesac area, which made me squeamish and scared that an any moment it was going to explode on me. This was when I realized I was in a chronic pain condition and was continuously reacting to the stress.
The New Norm: life shouldn't be like this
When I was diagnosed (or assumed, before I had a laparoscopy) and was told the only solutions were medical intervention, I hit rock bottom for a bit there. To be amazingly fit, active, and healthy one second, then on the couch for days on end a few months later, is really depressing. It was my boyfriend that eventually told me to start looking holistically, that there's got to be something out there.
And there was. I discovered the Endometriosis Diet and started by cutting out gluten. THIS WAS NOT EASY, although it really is now, but I get why it seems so hard. I was able to really master it thanks to my roommate who was celiac, and she helped be see items with hidden gluten (like those darn "corn" pizza crusts I loved so much) and I learned a gluten free pace of life. That helped me tremendously, and as a side affect I lost about 10 pounds of what I see now as inflammation weight. It just melted off over the course of 6 or so months, and I did feel a lot better.
But as much as it helped, it wasn't my solution. It was definitely a piece of it (one I still abide by today), but it was only a part of the whole package. As the pain progressed, I was popping ibuprofen like candy, and I decided to finally get surgery a year and half after my diagnosis. What type of surgery? Laporoscopic with cauterization. Would I recommend it? NO! Recovery was terrible (I had literally been burned inside) and the pain came back within 10 months. 10 MONTHS!
As the pain came back I cut out other things: soy, my beloved dairy, alcohol. I couldn't cut out coffee because I was so exhausted all the time it's the only thing that kept me upright. I had lost a lot of weight and couldn't keep it on, my skin looked pale, and my hair and nails were too brittle to grow. I got chronic sinus infections from surfing after it rained (no one else did), and my shoulders were so tight from all the stress I kept throwing out my neck. I was really sick at this point, sicker than I realized since the decline had happened so slowly over the years. Somehow it had become my new norm.
Reclaiming my Life
There's nothing like being sick and tired of being sick and tired to motivate you. I was sick of doctors continually prescribing me meds to cure the sympoms of my meds, sick of not being vibrant at 28, sick of being so darn sickly. I literally thew out my birth control (I hated that stuff), stopped taking ibuprofen, and had an internal renaissance where I vowed to figure this out once and for all.
I had heard of the candida diet years before and scoffed: who the heck would sanely cut out sugar, dairy, caffeine, gluten, soy, fruit, and grains of any sort?? Well, sick people do. People at the end of their rope who need to find hope. So did it.
Simultaneously I finally forked over money to go to a naturopath, who ran numerous tests on me that showed I had leaky gut and was mal-absorbing, which was why I was also nutrient deficient. This opened up new solution-oriented doors for me as I began to see a way out. There were things wrong with my body that I could actually fix through diet and lifestyle! That alone was more hope than I had over the previous 5 years.
But this is why the leaky gut diet alone won't heal your endo, because if you don't follow up with a nutrient dense diet your deprived body still doen't get what it needs to properly function. So, as I was turning around, the endo pain was still there! Omg I could kill it. This was around the time my boyfriend (now finance) and I were looking towards the future and the babies it might include, so I decided to get another surgery. But a better one. With a laser. He wasn't the type of endo specialist that I now know about who takes 9 hours to excise, but this surgery was definitely better than the last. I'll say it now, it really pays to be an informed patient and know what you need from a surgeon.
So now I had a clean slate and had healed my leaky gut and candida, which is why a year later I was so confused as to why I was suffering from chronic, relentless fatigue and the endo was beginning to flare up again.