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."

In need of some needling.

I'm traversing new ground. New possibilities. Hopeful outcomes.

I'm getting acupuncture on Friday.

While I have yet to try it out, I've heard that acupuncture is a valid form of pain management therapy for those who may suffer from chronic and/or bouts of acute pain. In my case, I have both (bad) bouts of acute pain from my jaw/upper back muscles and lovely gnawing pain that I have yet to combat in my lower, right abdomen (a place that is the constant source of endometriosis pain and, coincidentally, endometrial growth). Nevertheless, I am very much looking forward to getting "pricked" and "prodded" at a doctor's office! Let's call this a "first" of sorts in this regard.

I'll be getting my acupuncture consult and therapy at Gettysburg Holistic Health Center. As I spoke to the founder Lynn Roby on the phone today to make my appointment, and came to find out that Lynn is a survivor of a rare and deadly phenomena: a brain aneurysm. She has published a book entitled From Darkness to Light: my journey back from a brain filled with blood which I may get to after I finish Joan Halifax's Being With Dying: Cultivating Compassion and Fearlessness in the Presence of Death.

After speaking for almost 10 minutes with Lynn, while I don't know her personally, she revealed that she started the center due to having chronic, constant pain from having had serious brain trauma. As the operation center of the body, I can only imagine the kinds of headaches and body aches that she had to suffer through to get where she is today. She mentioned that yoga, acupuncture therapy, and a diet & lifestyle change truly helped her overcome her chronic pain symptoms. I am hopeful that someday I can say the same.

But for now, I have to admit that I'm kind of bummed that I still suffer from pain. And my attitude towards pain is becoming increasingly...well...depressing? After this last bout of therapy with my TMJD specialist, his recent relinquishing of his services to me in the midst of a terrible "flare-up" of face and head pain, I feel very desperate and lost. Sure, I have meds for endo which may help my head pain go away. Okay. Let me be honest: the ONLY pharmacological therapy that has helped is a combo of valium & percocet. So I admit to sometimes (over-dosing?) on my Tramadol just to keep my head pain in check. And I'll be even more honest: this is NOT good. Not good at all.

So in a moment, this week, of desperation, I decided a few things: 1) to call a TMJD specialist at a teaching hospital (UMD). 2) To start acupuncture therapy. 3) To keep up with Physical Therapy I guess as long as I'm allowed? 4) To keep up my bi-weekly deep tissue massages. 5) To start chiropractic adjustments on my back/upper spine to see if this helps alleviate some of my symptoms.

I know that TMJD and endometriosis could not appear to be more different, as the affect different parts of the body. But really when you think about it: it all comes down to inflammation, irritation and radiating pain. What does this sound like? Endo, hands down. So I'm taking another step towards healing my WHOLE body rather than just parts of it at a time. I am very hopeful that creating a relationship with the Holistic Health Center will lead to further lifestyle changes. Perhaps someone can help me more with anti-inflammatory diet changes? Who knows. But just from talking with Lynn briefly, mentioning that I'm starting to be more involved with local support networks, she was kind enough to offer her facility for a future meeting for the Central PA Endometriosis Support Network. Wow! What a nice offer up front before meeting someone! Thus, I guess it's nice to know there may be a place to host an in-person meeting for those of us who are in the Gettysburg area.

The point of this blog is to announce that I am--FINALLY--listening to Dr. H and looking at holistic healing methods to integrate into my therapy. While some folks adhere to a purely holistic lifestyle and others to a Western practitioner's lifestyle, I would like to allow for both East and West to meet, to work together. I am looking forward to healing my body, to getting back to the old, "in shape," healthy, happy and active Jessica that I knew not so long ago.

One thing that many people don't have to think about is how much having a disease, an affliction, a health problem (whether it be long or short term), really does affect your life and how you live it. You make plans, decline plans, work, don't work, vacation, postpone vacations, based on how you feel each day. It's really a day-to-day battle. (Wow, now that I think of it as a "day-to-day" thing, I feel a little bit more relieved!) While day-to-day means that I have to get through this day, perhaps it means that tomorrow might be better? I always like to be hopeful, and I know that days awaiting surgery are torture-like. At least, for now, I am looking forward to this Friday. I'm looking forward to physical therapy tomorrow and to Friday's combo chiropractor/acupcunture date. I also look forward to seeing how I feel on Saturday and possibly seeing what additional "tips" I can pick up from either physician about dealing with chronic pain. They say your lifestyle depends on how you style your life, how you live it. Well, right now I think I'm only doing the bare minimum to keep living--not to improve it. Perhaps this experience will propel me to seek beyond expections, just like I do in every other aspect of my life. Either way, I'm hopeful. And sometimes hope is all you need.

Confessions

Today I wrote a long email to Dr. H. and confessed.

Today I confessed how bad my pain was before surgery. And also that the medication that he prescribed me for three weeks was taken. In three weeks. Because it was bad.
Really bad.
Today I confess that I'm worried the pain won't go away.
Today I confess that I don't know what else to do at this point.
Today I confess that I am trying to be strong, but it's hard.
Really hard.

I lost 16 lbs since June. Not because I was trying. But because of the nausea before surgery. And now, after surgery, I don't eat much because of the pain. Because I'm scared that any extra pressure in my bowels will just make me feel sick.
And I feel like a chronic complainer. I feel inadequate when I tell my husband "I can't do (fill in the blank) because I don't feel good."

And then when he asks me "why don't you feel good?" I just want to scream at him.
I confess: I do scream back: "WHY DO YOU THINK I DON'T FEEL GOOD?!!!"
So now the protocol is when I say "I don't feel good," he must respond with a mechanical: "Is it Pamela Beard?" I will reply with a sound, "Yes." Conversation: over.

Today I confess that I'm worried about my body becoming addicted or immune to pain management tactics. Like drugs. Meditation. Breathing. Heating pads. Stress eating.

Today I confess that I strive to lead by example. And I'm not worried about the example I'm leading for my students--it's more for myself. When is it okay to get up and leave work? When is it okay to call off sick? When is it okay to "suck it up?" When is it okay to take pain meds when the world is telling you that you'll become a drug addict?

I confess: I wish men had uteruses.
I don't know what difference it would make. But, like all things, isn't it easier to understand someone when you have the tiniest idea what they're going through?
I confess: I wish all people held virtues of compassion. But the truth is, they don't.

So Dear Dr. H,
I'm an over-achiever who thought this (third) laparoscopic surgery would be a piece-of-cake.
I confess: it is not.
Help?


 

Post-Op: Ain't nobody got time fo' that!

A letter to my Lady Parts: Part II

We did it, Pam. We got through surgery. We found out that, within a year's time, our endometriosis goblins had grown back. And like a super hero, Dr. H and his handy little robot removed the nasty growth around our right ovary, fallopian tube and some crap growing in our posterior cul-de-sac near our poop chute. The success of surgery? Aces.

But do you feel okay? Because--let me be honest--I feel like shit. It's been taking a long time to heal, too. I shuffle, scoot and hobble around my house like an old lady. In fact, I've been day-dreaming about a walker. At least a bedazzled walker. All white rhinestones, of course.
Is this bad?

I have sharp pains in my right side, still. It's been hard to keep normal working hours (which is unbelievably frustrating), and so I've been at the mercy of my body. At the mercy of you, come to think of it. (Dammit, Pam!) I mean--it's not like it's your fault or anything, so please know that I ain't mad atcha. But if you're curious, when I need to go #1 or #2, I feel the wretched pressure of pain and cramping that would better off suit someone whom I disliked. Unlike most people, I would wish this pain on my worst enemy--because it goes away eventually, at least. I don't want to the world to think I'm a horrible person or anything, but now that I'm thinking about ways of torture...

Back to the point: We had Stage II endometriosis this time. Not as bad as last year, but think about it--that was ONE YEAR AGO! A whole lotta crap grew back in record time, and I think we did everything we could have done to prevent it. Like the Mirena IUD. By the way, I've been meaning to ask you: How do you feel about this? I mean, I think you're having cramps because of Ms. Mirena, but I haven't had the time to ask. If you think about it, let me know. I've been bringing my heating pad to work lately just in case. In fact, it feels rather nice as I write this right now, doesn't it?

Secondly, I met with Martha yesterday--our Physician's Assistant who is balls in my opinion. (Oh yes, sorry Pam, I'm using masculine terms of endearment, but "balls" means "tits" and "tits" also means "awesome." So Martha, in other words, is awesome.) She explained that Dr. H did a lot of work on our right side--like, a LOT of pipe cleaning. She showed me the pictures of our ovaries and fallopian tubes on the right. Of course, I didn't know what the hell we were looking at, but being the nerd that I am, I insisted on seeing visual evidence of the growth that was making us so sick we've lost almost 12-15 lbs in the last 2 months. Lemme tell ya--it was gross. Our right ovary was literally stuck to some other muscle wall--they call that an "adhesion." And there was a white, bumpy layer of gunk surrounding everything. Like I said, though, Dr. H licked it out of there. (No, not literally licked! C'mon, Pamela. Head out of the gutter, please. This is a serious conversation.) Either way, after removing all of the crap on our right side, it turns out the left side was virtually clean from any signs of endo. High-Five! (Or is it "High Uterus?") I don't know how you do things down there--it's not like you have hands or anything, but if you had an appendage to slap, would that be an ovary?

You should also know that there was a mass of growth in the posterior cul-de-sac. I think they also call it the "Pouch of Douglas" or something. So much for a pouch. If I had a pouch in my abdomen, I'd at least want Tory Burch to design it. Or Marc Jacobs. It would be sparkly and fun--possibly purple or cobalt blue. Yes, a cobalt blue P of D with crystal embellishment. Tasteful embellishment. Not like "My Big Fat Gypsy Wedding" or anything. In the meantime,
the lessons that we should share with our Endo Sisters in pain are:
Eat a soft diet with little meat while you heal.
Drink tea--without caffeine--preferably fresh herbs in hot water (a combination of: mint, rosemary, lavendar, oregano, basil, thyme) Some of these fresh herbs have anti-inflammatory powers. Also it helps you stay hydrated.
Make yourself a "nest." In other words, make a comfy place where you can lie down with your torso lifted up slightly and a pillow under your legs to help the gas flow towards your bum. As in: help yourself fart. You will feel MUCH better!
Gas-X RULEZZZZ.
Take Colace.
Drink plenty of fluids--not sugary shit, but water, tea, whatever. Fruit juice is okay in moderation to get some calories while you heal. A gingerale is nice every now and then, but I am wary to drink carbonated beverages while dealing with internal gas problems.
The "gas pain" is probably the worst part. Something I wouldn't wish on my worst enemy, in fact.
Get a neck/shoulder massage--preferably someone who can come to your house and massage your neck muscles while you lie, face up, somewhere dark, warm and cozy. Hopefully they won't try to get fresh.
Have people "on call" to take care of you. Trust me: you will need them.
Be open and honest with yourself. And your boss. No explanation needed, I hope. You are NOT Superwoman. Although I know you try...
Call your doctor. If anything seems awry. If you're spotting--bright red, heavily, whatever. If you have unusual pain. If, like me, you find yourself with a knock-down drag-out cold in the middle of healing. Your doctor's office will advise you what to do both homeopathically and if you can take additional medication.
It gets better. It's cliche. But it's also quite true.

So that's our story: We weren't crazy after all! Again. Be wary for now, my friend, but heal fast and let me know if I'm doing too much around here. I'm trying to take it easy, but as it turns out, there's only so much Lifetime Movie Network I can watch and the latest fantasy-romance novel I picked up has sucked me deep into a fictional portrayal of 18th century Scotland. I think you would like it, but it's already made me cry. More than once. And with our weakened, healing abdominal muscles, all I can say is: Ain't nobody got time fo' that!

What we do have time for is knowing that we have time to wait for babies. The baby factory has vacancy, but is currently not open for business. As long as you're okay with that, so am I. Be in touch, Pam.

Love,
Your Endo Sister

Dear Pamela Beard: A letter to my lady parts

Just to avoid any confusion, "Pamela Beard" is my nickname for my uterus. I mean, guys name their man parts, right? Anyways...

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Dear Pamela,

Hey girl. How are you? Just from how you've been acting around me lately, I'm gonna go ahead and imagine that you'll tell me things are "fine." But when you say "fine," I know that you mean things are not fine. I know you're not doing so well right now. It's okay to be honest. In fact, it's why I'm writing you.

Pam, I'm scared. I'm scared for you. I'm scared for us. I'm afraid that because we've both been sick lately, we'll find ourselves in a most precarious position. And by "precarious" I mean infertile. YES, I KNOW we've talked about this before, and you tell me not to worry! You tell me: "You can achieve your professional dreams and wait to have babies. You don't have to hinge your femininity upon your ability to procreate. If your fallopian tubes are too scarred in three years, you can always look at adoption. The world doesn't have to end here." But Pam, I'm worried. I'm worried that, while I obviously have dreams to become Dr. Knouse someday, I'm going to look back upon my life and ask "what if?" What if I wouldn't have waited to have babies? What if I wouldn't have had that abortion in college? What if I just said Fuck it and decided to take my Nuva Ring out tomorrow? Am I allowed to dream of having both titles of "Dr." and "Mom?" Or must I choose only one option.

Am I being an asshole by thinking I have the right to choose to gamble with my fertility? I know women who are struggling with becoming pregnant. I know amazing couples who want nothing more than to be parents, but still have challenges conceiving both with and without medical intervention. When issues like this arise, I think to myself: Am I wasting away my precious fertile years? Am I an asshole?

Pam, we're getting surgery soon. Perhaps within the next 2 weeks so that we can recover before our students come back for the fall semester. We're getting surgery--only 1 inscision this time!--and Dr. H says he'll check on the status of your health, our ovaries, and fallopian tubes. I was sure to express my concerns to Dr. H about fertility since you, me and the hubby will be thinking about this in the next two years, possibly three. I say "my concerns" because I know you're a lady of leisure; you've told me before that you don't mind not having a job and that baby-making is my decision, not yours. I appreciate your laid-back approach to this situation. It keeps me balanced, I think.
I should also tell you that we're getting the Mirena IUD, so be prepared to have a roommate for a while. I know you prefer to live alone, and have managed to successfully reside as neighbors to my Nuva Ring for the last year and a half. The Mirena will prevent pregnancy for up to three years, so you'll be living together for a while. But hey, "Mirena" seems like a nice name. I hope you gals can become great friends!
I have to mention this--just so you're aware--that if Dr. H looks up inside of us and thinks that we look like a "mess," then he'll let us know that we should think about family planning sooner than later. Your "lady of leisure" days will be numbered. I just thought I'd give you a heads-up about that--you know--because we're besties.

Oh, Pamela. I'm scared. What if it is a mess in there? Or what if nothing is wrong? Then what? Am I crazy? Is the ridiculous pain, nausea, bloating, fatigue and discomfort all just in my head? I hate that I have to ask these questions, but I do. After all the shit I went through last year, I still question myself constantly. I know this isn't healthy, but what else can I do? I had doctor after doctor tell me that I had "nerve entrapment," or a "bad back," or "Irritable Bowel Syndrome." That "we'll treat you for endometriosis," but at the end of the day no one really knew what was wrong with me. Then we met Dr. H. I know this might sound silly, but I don't want to let him down; I want to get better, but I also want him to find endometriosis in this surgery. I don't want him, the best doctor I've ever come to know, to think I'm crazy, too.

By the way, I hope that (between you and me) this next surgery works. I'm so incredibly tired of being in pain. I'm tired of looking at my "Leave Balance" at work and fretting that I don't have enough time to take-off to have surgery. I hate that I might miss out on this up-coming conference because, well, what if my surgery falls upon the date of the conference? Sure, I can probably get a refund. I can re-book my flight. I can look for other professional development opportunities out there. In the big picture, it's not that big of a deal. But if I want to be honest, I'm sick of being scared to make plans. Again. This was the life I lead last year--it's not supposed to happen again. This year.

Pamela, if you don't know this already, I should tell you that endometriosis never truly goes away. There is no cure. Research suggests that pregnancy may have a greater chance of lessening growth, and only in some cases, it may not return after a woman is pregnant. But not all endometrial cells are created equally. Like cancer, endometriosis cells can regenerate "mildly, moderately or aggressively." Thus, even if we did get pregnant, there are no guarantees that this will stop our pain. We might have to get a hysterectomy some day. Possibly in our 30s if we do have babies within the next 5 years. (I know you don't want to think about it! It would mean we'd be breaking up for good--for life. Don't worry; it's not a decision that I'll make lightly, and I'll be sure to consult with you first.) It's not something to dwell on, but it's something to think about. I mean, the more I talk about this to women, the more I find that so many women have had a hysterectomy or some form of laparoscopic excision/surgery. It's nuts! On the surface, I feel so alone, but once you begin to dig a little deeper--once you begin to peel away the shame of having "lady part problems"--I find that I'm not so alone. There are many women out there in our situation. We have to remember that. Always.

I know you may not be able to write back right away, but if you can, please tell me that I'm not crazy. Please tell me that I'm not an asshole. Please tell me that I need to relax and wait until our surgery is complete so we know our next step. Please tell me that I am lucky to have support systems--husband, family and friends--who support me and want me to recover, to be "okay." Please tell me that sometimes the greatest thing we can do as humans is to "let go" to the feeling that we have to maintain control over everything in our lives. Please tell me to let go. To have hope. To understand the meaning of grace. And in the meantime, to get some damn sleep.

Thanks for listening, Pamela.

Your friend,
Jessica