Nothing Changes if Nothing Changes: Extra Horomnes. Extra Fat.

I've gained 25 pounds since December.Which isn't normal for me. In all honesty, I am a yo-yo weight type of person where I can gain/lose 10 lbs pretty easily and if I go over a certain weight, I always can get back down.

Until now.

At first, I knew that weight gain was due to high stress and a bad diet. I ate whatever I wanted and ate probably more than I should have; indeed, it was my fault that I let myself fall back into a poor pattern of eating habits. Stress eating is my love drug. It's what I used to do to get me through the day of nasty pain and feeling like my head was going to burst at the end of the day. [I should mention that my job is quite stressful at times and was especially stressful this past spring.]

However, I realized back in February this year that my weight gain had been significant and also quite rapid--which is not normal for me despite my eat-til-you-feel-better habitudes. At this point, I reached a tipping point on the scale (197 lbs--my all time highest weight) and decided that I better change my ways. And fast.

So I started working out regularly. Getting back on a half-marathon training schedule. Not quite eating 100% healthily, but nonetheless, making much better eating choices. I quickly shed 5 lbs, and I was pumped. YES! It was working! But come April, I noticed that, unfortunatley, I was starting to gain weight during this 4 week process. Again: not normal for me.

Around the 20th of April--during the peak of my busy work schedule--I ended up in the ER with severe abdominal pain. Luckily my ER doc was AMAZING; he listened to me, believed me when I said I thought it was an endometriosis flare-up, treated me with some pain meds, and after diagnostics revealed that my lady parts were okay, sent me home. He was an angel, but I don't think he knows it. Any person with endo knows that getting onto a healthy schedule with exercise and eating is the best decision we can make for ourselves--but is it easy to maintain? HELL NO. Why? Because of the pain. The nausea. The fatigue. It's hard to keep up with something when our bodies fight us on a daily basis. Also I was feeling defeated because my exercise schedule did not go as planned, and I was gaining weight.

Defeated, but not wholly deterred, I decided that I needed to be more drastic with my diet plan. Eat less. Always eat a salad with lunch & dinner. Drink tons of water. Give up take-out.

Again, I lost some lbs quickly, but I slowly came back to the 194 lbs mark. And here I sit today.

So I started doing some research about Mirena and the NuvaRing. I've decided that it's not just my fault, but that the hormones in both birth controls are affecting my body's metabolism and ability to lose weight. Honestly, after tracking my calories to lose 2 lbs a week on "My Fitness Pal" app and getting light but regular exercise, I should have certainly been shedding the pounds. But I haven't been.

In 2 weeks I have a multiphasic blood scan scheduled, as well as a measurement of my HDL & LDL cholesterol and my TSH (thyroid) levels. It is common for women with endometriosis to also have hypothyroidism, and I am worried that with heart disease in my family, that the horomones could pose a threat to my heart health.

Bottom line is this: I can't live the way I'm living anymore. I think about my body's health, and I worry that my heart health is suffering from weight gain. I worry that I may have hypothyroid disease because it also runs in my family. I'll certainly find out where my levels are in a few, short weeks, but I still worry.

The point of being so honest and up-front about the possibilty of weight gain due to increased hormone therapy is because this phenomenon is not just in my head: it's real. And it's here, happening to me. I'm not sure how to handle this phenomenon, as I've always been able to lose weight with a strict diet and healthy exercise schedule. I feel sad, fat and ashamed of my body. While I'm trying to heal on the inside, I feel like I'm suffering on the outside. People look at me differently who haven't seen me in a few months. I watch their eyes scan over my figure and note when they register that I've gained weight. I can't fit into my clothes right now, and that's pretty depressing. We're going to the beach in a week, and I'm not sure what bathing suits I'll wear because I'm not sure if they'll fit!

I'm not revealing all of these sentiments because I want sympathy from others. I want others who read this to know that they're not alone in fighting the endo battle. Additionally, I want to point out that fighting endo means many things; it means fighting pain, lifestyle changes, mental attitude, and sometimes weight gain. I AM DETERMINED to beat this!

For starters, I have a plan:

1) Changing some meds:
I talked to my doctor about different pain medications, and we're trying a new NSAID medication called Mobic. It's supposed to help with inflammation and flare-up pain. You see, taking stuff like Tramadol can sometimes make me feel fuzzy or tired, so I hope that taking Mobic will relieve that pain without the side-effects of dizziness or fatigue. Additionally, I addressed possible neuropathic pain, and I've started Neurontin to see if that helps as well. After 1 month of taking both meds, I'll touch base with my doctor to see how I'm doing, and we hope that this provides regular pain relief so that I can maintain a more regular, pain-free schedule.

2) Changing diet strategies:
I downloaded a detox plan yesterday from Skinny Ms. (no, it's not one of those water with lemon plans--you actually EAT with this program), and a 30-day workout schedule that is comprehensive. On the Skinny Ms. website, there is a wealth of yummy foods that are healthy, full of fiber and "clean." I've noted that Skinny Ms. discusses "clean eating," which I think will help boost my body back to where it needs to be. I'm starting a 3 day (yep, just 3 days!) detox plan so that I can boost my metabolism, perhaps shed a pound or two, and start to feel a little more confident about putting on my work-out clothes.

3) Changing exercise strategies:
I always think that with working out, it's "go hard or go home." So either you go running or you do nothing at all. Which is bullshit. I need to remember that simply being active is better than sitting on my couch! In the past, I've been very successful with regular calisthenic training and cardiovasulcar training. In other words, interval training really works for me, paired with either walking, running, dancing, swimming--something that gets the heart pumping for at least 20-30 minutes. With this workout program from Skinny Ms. that I found, I think I'll find a nice balance so that I'm not pushing myself beyond my limits, and I'm able to keep up with the exercise schedule.

4) Changing my attitude:Gaining weight after a long, cold winter can be, well, depressing. There's no better word for it! But it's not the end of the world. I always think that if someone were to call me fat, I would retort: "Well, fat people can lose the weight; people who are assholes are usually just plain old assholes." When I look at myself in the mirror, I know that I'm not FAT, I'm just fluffier in more places than usual. My normal weight (170 lbs) is actually quite healthy for me even though my BMI chart says that I'm still "obese" at 170. I'm muscular and have a high bone density. I can wear size 8/10 clothes when I weight 170, so whatever. At that point, it's not about what you weigh, but how you feel. And I need to remember that I CAN DO IT. I can feel good about myself again.

---
My hope is that if you are suffering from hormonal weight gain, you can remind yourself that there is a light at the end of the tunnel. There are options out there for you. And I had to remind myself that "nothing changes if nothing changes." If I don't change my diet, my work-out schedule and my attitude, then I won't lose the weight. It's plain and simple.
Best of luck to all of my EndoSisters and EndoWarriors out there who are fighting the good fight! Remember always that YOU ARE NOT ALONE.

With lots of love,
JLK

Things I sometimes forget but shouldn't.

Endo is the liverwurst. (AKA: THE WORST)

I've been suffering from on-and-off pelvic pain in my lower abdomen for about 3+ years now. It sucks, but it's something I've learned to deal with. I hate saying that I "deal with" my endo pain, but honestly it's a place I needed to get to in order to negotiate my day-to-day life. I needed to find a middle place where I could, when necessary, reside and still have fun, make plans, go to work and live my life!

But there are some things that I forget, so instead of keeping my not-so-secret pain "remedies" to myself, I've decided that I'll share.

1) Poop. You have to poop.

Not having regular bowel movements puts extra strain on your lady parts. When you have endo and are still having your menses (some women have the Mirena--like me--to help stop menses and thus, stop continuous endo growth), your lady parts are inflamed. It's simple:
Endo + Menstruation = Ultra Inflammation = Pain
Endo(iflammation) + Full Bowels = More Pain due to increased pressure on inflamed parts of the body, like your uterus and ovaries.

So, if you have been diagnosed with endo, make sure you are drinking PLENTY of water, eating fiber, and pooping regularly. Here are a few of my poop tricks:

*Senna Tea: Not for the weak of heart. A natural laxative, senna tea or oil stimulates the bowels. Since I have IBS, this stuff can be a little too "potent" for me to stand, but it does the job if you prefer to use herbal products.
*Miralax: My personal preference. Instead of traditional stimulants like Ducolax (also the liverwurst), Miralax draws moisture into your bowels so that you poop pretty naturally. Remember to drink lots of water with it, and if you're on pain medication, it's a good solution to help keep you regular.

*Colon Cleanse: For those of us who can't get the job done with typical OTC remedies, I've heard from patients at my physician's office that Colon Cleanse can be a "life changer." You can purchase it on Amazon.com. I've never tried it, but others who have tried all else and failed swear by it.

2) Pee. Don't hold it in like you're trying not to say the f-bomb in your grandma's presence on Thanksgiving. (I've never been there....ever...)

You know when you're busy and forget to pee? Or you're sitting on a conference call so you hold it in and later on, you lose the urge to pee? Yeah. I've done that before. And later on, when I finally have to go, I REALLY have to go. And it huuuuuurts. Not only does it hurt for your bladder to be extra full and, like a full bowel, it puts unnecessary pressure on your inflamed lady parts. Thus, you have abdominal pain that you might have avoided if you took a regular trip to the toilet when nature calls. Just remember: in this case, yellow means go, not slow down.

3) Stay away from the following common "trigger" foods like:

*Alcohol. It's poison. Delicious and theraputic. Sometimes magically solves all of the world's problems except for the problems in your uterus. But essentially it's poison.

*Fatty cheeses. Like brie, bleu cheese, other high-fat cheeses. Which are my favorite. [sad face]

*Fried foods. Need I say more?

*Lots of caffeine. I HEART tea in the morning. Also coffee. Lattes. Espresso. Dear God, caffeine is amazeballs. But just make sure you aren't over-doing it. Like drinking a pot of coffee or having more than 3 "cups" of tea/day. Followers of the Endo Diet stray from caffeine because it can be a natural inflammatory.

*PAY ATTENTION TO WHAT YOU EAT AND IF IT HURTS AFTERWARDS.

No all "trigger foods" are the same for everyone. In fact, some folks swear by coffee with cinnamon to help. The message is to make sure you pay attention to whether or not you feel especially crappy after a night where you only had 2 beers with a healthy dinner. I've always had nerve issues after a night out on the town where my nerves would be extra sensitive and my forearms would "fall asleep" randomly. Since endo pain can be caused by "neuroangiogenesis" (when new nerve cells form with new endometriosis/blood cells), having more nerve pain after drinking beer was a definite "trigger" for me.

4) Stay hydrated. Drink water. Lots. Also remember to pee.

5) Try melon or berries. Cantaloupe is my "go-to." For whatever reason, it really helps alleviate some pain if I'm having a bad day. Berries and melons are natural anti-inflammatory foods.

6) When in pain, find ways to distract yourself.

For me, I get my fat pants on, a comfy tee, lie down on my couch with a tall glass of ice water or gingerale, get that heating pad going, and lose myself in bad Lifetime Movie Network movies like "The Surrogacy Trap" or "Lying to Win." Sometimes I call a friend. Other times I don't. Other times, my husband (God love him) will rub my feet or scratch my back. It helps me forget that I'm in pain. Forgetting isn't curing your pain, but it sure beats going to the ER.

7) Download a period app like "MyCalendar."

I don't care if you've had a hyster or not. I soundly believe that our bodies operate cyclically. Sometimes, I can almost pin-point with my app when I'll most likely have a migraine, have bad endo pain, or feel really tired. I don't get my period anymore due to being on not one, but TWO lovely hormones, but my pain is still quite cyclical. My pain is the (liver)worst right before I have to change my NuvaRing. And if I forget to get my new NuvaRing, I'm late on putting it in or whatever, DAMN does my uterus hurt. Pamela Beard (my uterus' name) get pissed off and lets me know about it.
Bottom line: don't think that because you're not menstruating that you will be asymptomatic. (I hope you ARE w/o symptoms!) But I'm saying this because often times women will have issues, call their doctors, and aren't sure how to advocate for themselves. For me, since I keep track of data on my phone, I can answer my physician's questions or point to possible links between my hormone therapy either working or not working. It's good to have that kind of information in YOUR hands. Because it's YOUR body.

8) Make peace with your uterus.

Having a chronic illness means there is no cure. It means you aren't fully in control. Neither is your doctor. You wish you were. You wish you could make everything better on your own. But you can't. Like the "Spoon Theory," everyday can sometimes mean that you have to make decisions that will effect today, possibly tomorrow. And the next day. For example, coming to terms with my pain means that I wish to have a social life again. If I start to have bad pain symptoms, I evaluate the situation: I could go to dinner with girlfriends or go home. No one would be angry or upset with me. But I ask myself: What would YOU like to do? If you are okay with fighting over that current wave of pain and meeting your girlfriends to see if you can make it through dinner, go for it! I've decided to come to terms with Pamela--by taking back some of my power. Which means that some days, I'll feel great and go for a run. Others I'll walk. Others I'll lie around on my couch. ALL OF THOSE CHOICES ARE OKAY. Your life will never be the same as it was before you were diagnosed. And it's okay. Make peace. Shalom.

Shalom, EndoSisters. Shalom and ahavah. [Peace and love]

 

Yes, I had ass surgery.

Sweet baby Jesus, I can't believe I'm saying it out loud.

But yeah. I just had ass surgery a few weeks ago from, what I believe, is due to chronic, long time effects of endometriosis. Including constipation, mostly. And possibly having abdominal pain that made it difficult to have a bowel movement without straining so hard.

Why am I telling you this? Because it's important. It's important that I confess what's going on with my body so that YOU DON'T FEEL ALONE in your own journey, struggles, frustrations. We are endosisters in this, together.

So about this surgery: it was a sphincterotomy and a banding of hemorrhoids that had been causing me a lot of discomfort over the last 2 years or so. Yes: I said 2 years. You see, because I've been so focused on having/dealing with endometriosis, I had neglected other parts of my body. For example, I have TMJ disorder, too. My right jaw joint is completely dislocated and does not "recapture." The other side is degenerative as well--which leads to chronic neck, head and jaw pain. But either way, getting back to the subject, sometimes being so focused on one health condition helps you either forget or, unfortunately, neglect other issues that you're also dealing with. And here's something I find helpful to mention:

Endometriosis can influence other parts of your body. (Yes, I've said it before: 'it's all connected.') But besides that point, endometriosis can correlate to other inflammatory diseases and conditions. According to "The Pains of Endometriosis" published by Berkley, Rapkin & Papka in The Science Journal:  In some women, pain can be exacerbated by the co-occurrence of other severe chronic pain conditions such as irritable bowel syndrome, interstitial cystitis, repetitive kidney stones, vulvodynia, temporomandibular syndrome, migraine, and fibromyalgia."

In my case, I believe that years of irregular and difficult bowel movements/problems have contributed signficantly to having a severe anal fissure and hemorrhoids. In fact, in my post-op session with my GI specialist, he made it clear that "that fissure was NOT going to go away on its own." Which makes me wonder: in what other ways our our bodies being affected that we're not even aware of. And further more, why am I so comfortable talking about my uterus, ovaries and fallopian tubes, but talking about my butthole is so seemingly "off-limits." Many of us diagnosed with endometriosis end-up either having bowel adhesisions, deep penetrating endometrial tissue in our bowels and growth in the pouch of Douglas or posterior cul de sac. Which means that our reproductive system is affecting, directly, the efficacy of our gastrointestinal tract.

I confess that I had surgery on my behind because, on one hand, I feel like an old lady. I've had 3 major surgeries in the last year. My PCP even remarked, at one point, "Jessica, your medical history looks like that of an old lady." SERIOUSLY? Okay, how about this: Fuck you. Yep. I said it.

But to keep it real, please don't neglect your other bodily functions because endo "might" get in the way. I almost ended up canceling surgery because my abdominal pain had returned and I was worried (and still am) that I may end up with another laparoscopy within the next year. I'm worried that I might force myself to make decisions about my reproductive organs that I don't want to have to make sooner than later--like either have kids NOW or think about the fact that I may become infertile within the next few years while I wait, quietly, with a Mirena implant and NuvaRing regimen.

Finally, I want to tell you today that my butt is doing better. So far. It's nothing like endo pain, but still: no one wants to feel like you're pooping razor blades. Nope. No one wants to know about that. But the point is this: don't feel embarrassed or ashamed to talk to your PCP or specialist about what's going on "down there." Because our "down there" is all connected. And I truly believe that until you can start to balance your WHOLE body health, focusing on one problem will not allow for another to go away. Was I nervous to have someone voluntarily cut an incision into my sphincter? Hell yeah! Was it worth it? Hell yeah!

I hope that--for many of you--your journey is either on a good, healthy path or you feel confident that your road to recovery is bright and full of opportunity. For others, we take 5 steps forward and 3 backwards. That's kind of how I feel right now. Yes, I'm considered a medical "success," but it worries me that I may have other (side-effects) of endo that I'm not ready to deal with yet. But fear only gets you so far--and by "so far," I mean no where.

Bottom line: don't ignore your bottom. Don't feel embarrassed to talk about it. Don't feel ashamed to have issues down there. And if you do, find A SPECIALIST who will listen, treat you with the utmost form of care and concern, and understand that you are an Endo Warrior, not just a(n old) lady with butt problems.

Cheers to you and your lady parts!

Pain, Pain, Go Away

I've tried hard. But not hard enough?

After my August 2013 surgery, I did start to feel the benefits of the excision process which eliminated growth around my right ovary, including an abdominal adhesion that planted my ovary against my abdominal wall and some uterine adhesions. Around October, I had some breakthrough bleeding which threw me for a loop. I was worried--like, "Am I falling apart?!" kind of worried. Mostly because I envisioned my Mirena breaking through my uterine wall like Uma Thurman furiously punching her way through a casket in Kill Bill: Vol. 2. Otherwise, I just hoped that the hormone therapy of both the Mirena and NuvaRing would eliminate my menses and, thus, help supress the abnormal endometrial growth.

Around December, I found myself suffering from occasional bouts of pelvic pain. Stabbing, sometimes throbbing, minimal bouts of severe pain. It all went away. And then came back. And went away again. I was in a cycle of increasing severe pain, and didn't want to have to go back to my steady Tramadol regimen. But I caved--I gave in. I emailed Dr. H about my issues and we went back with Tramadol for breakthrough pain.

But what happens if the "breakthrough pain" becomes, well, "all the time pain?" It's happened to me before for months at a time. The thought of unrelenting, throbbing, chronic, sickening, debilitating pain revisiting my lady parts for months and months was enough to scare me into a strict gluten free diet. NOTE: Enough to SCARE me. But not enough to motivate me.

I am a self-proclaimed stress eater. I love food. I gain weight somewhat easily. I am not the healthiest of persons. I am not obese, but I could lose about 20 lbs and feel great. Either way, here we are. Not quite a year after my last laparoscopy, and I'm already sitting here with the deep, throbbing, somewhat burning pain in my lower right side. And what am I doing about it? Because I am familiar with both pain and triggers of pain, I have decided to take 2 Aleve per day; start drinking more water; use a heating pad; eat gluten-free and start exercising. So I am doing something, but I'm worried that with my cyclical pattern of (bad?) behavior, I will ultimately keep letting myself down--keep letting my body down. Does this make me a terrible person? No. Does this make me a negligent human being? Possibly. Should I take better care of myself? Yes. But is there a definitive cure for endometriosis? No.

So the question: Is this my fault? Is the pain my fault? Is it in my head? (<--Hate this question, but don't act like you've never said it to yourself before.) Is this an endo flare-up? Is it a cyst?

I don't know. I don't know the answers to my questions, and until I see Dr. H next week, it's driving me CRAZY. The pain is driving me CRAZY. So perhaps the blog title "You're Not Crazy" should be altered to suggest that "you're not crazy--it's the pain that's driving you to think you're crazy." In the meantime, I just say to my body, pleading for relief: "Pain. Pain. GO AWAY."

And don't come another day. Just get lost.

 

"...we can do it your way, but DON'T GET CRAZY."