Endometriosis

Recovery.

Such a simple word with such a variety of implications, not a one of them simple.

This month, the Band is focusing upon recovery - from anything. Part of getting through the traumas, the addictions, the mental illnesses is to focus on the light at the end of the proverbial tunnel and focus upon new coping mechanisms, new ways of life, and recovery.

So, The Band, how are YOU recovering? What are you recovering from? How are some ways you cope while recovering?

I've never been an alcoholic, though I drank too much in my 20s. I've never been a drug addict because I'm scared of most drugs. When I hear that someone is in "recovery," those are the things that leap to the forefront of my mind, but for me, recovery is something entirely different.

I am always recovering from the next illness that wants to kick my ass. Some of the illnesses stay with me and probably will forever. Yeah you, Complex Regional Pain Syndrome, and you over there, Factor V Leiden and arthritis. You can't hide from me fibromyalgia and migraines. Some of them scare me to death and, then, are cured by treatment. This means you, Syndrome of Inappropriate Antidiuretic Hormone (SIADH), endometriosis, ischemic colitis and Deep Vein Thrombosis (DVT). Granted, the endometriosis DID cause me to have a hysterectomy after dealing with it's bullshit for over 10 years.

The point I'm getting at is that "recovery" is different for everyone. For example, my CRPS and fibromyalgia are both chronic pain disorders, as are my migraines. I know that I will most likely be plagued by the excruciating pain of these diseases for the rest of my life. It's difficult to come to terms with that sort of diagnosis because these things aren't going to kill me or anything, but I WILL hurt...a lot.

Nursey: "Oh hey, hon! Yeah, there are no cures for these diseases, so we'll just have to make you as comfortable as we can with all of these medications for the rest of your life, okay?"

Umm...no, it's not fucking okay, Nursey Nurse Nurse! How would YOU like it if I told you that you had to look forward to near constant pain for the rest of YOUR life, huh?

Not to mention all of the medications you'll get to take, Nurse Ratchet! They have such awesome side effects too: drowsiness, weakness, dizziness, constipation, diarrhea, vomiting, dry mouth, headache, etc. Those are just the least serious ones! The pills, the pills, the pills...the sheer amount of pills that I ingest daily is just insane. But! If I want to feel better, I gotta take them all. 

So I'm a good little patient and take the pills that I'm supposed to in order to get some semblance of normalcy in my body. Luckily when I had SIADH, I was able to change medicines and limit my liquid intake for a few days and *poof* all better. And when I had a DVT, I stayed in the hospital for a week being pumped full of blood thinners and anti-coagulants either by IV or via an injection in the stomach. Then finally I got better. I was so scared that I was going to die. Thank you for fixing me up, doc. I recovered beautifully.

Sometimes we recover from things like the flu or a cold, and sometimes we fight like hell to recover from things that could kill us: addiction, abuse, eating disorders. And sometimes we seem to always try like hell to recover from the things they tell us we can't recover from. I don't know about you, but I'm going to continue to fight and scratch and claw until, one day, I will have no pain and recover, too.

Prenatal and postnatal complications are not as rare as we'd like to believe, even in the United States. This month, Band Back Together is bringing this to light in our spotlight series.

We invite you to share your stories of any type of complication before or after the birth of your child. Whether it's preeclampsia, a cord trauma or an infection like Group B Strep, we want your stories.

Have you experienced complications during pregnancy or immediately after?

My daughter is a tiny woman, but pregnancy agreed with her. She looked, and felt, wonderful - the hormones seemed to right all the wrongs caused by the mental illnesses she inherited from every single member of her family tree.

She had a difficult labor which could have been greatly improved by the hospital, nurse, and OB/GYN. In the end, she had to have a cesarean section.

After delivery, the hospital told her she'd had both a vaginal and cesarean delivery since the baby had been in the birth canal so long. The poor baby looked horrible after that ordeal; they took her picture a couple days later when her face had recovered from the trauma.

My daughter had lost so much blood that she was grey. On the day of discharge, she had a fever; they gave her acetaminophen and sent her home. She called the doctor's office three times with concerns about bleeding and worsening pain.

They told her it was a normal part of recovery from the c-section.

At the baby's first doctor visit the following week, the pediatrician told her to go to the hospital immediately.

My daughter's uterus had ruptured - not along the incision, which happens sometimes, but vertically. She was full of infection - her uterus was shredded. Because she was so young and had just given birth to her first baby, they repaired the uterus. She was in the hospital for ten days with a team of doctors overseeing her care: a surgeon, an OB/GYN, an infectious disease specialist, and a hospitalist.

She couldn't walk, but she wanted to nurse the baby. Someone had to stay around-the-clock to take care of the baby as the baby wasn't a patient. My daughter had drains on either side of her incision and a PICC line for the high-dose antibiotics. She was discharged with two more weeks of antibiotics.

Her husband left for National Guard training and I stayed with her most of the summer. Months and months of pain, doctors appointments, pain medications, plus taking care of a newborn - it was a difficult time.

She could have sued, but waited too long.

The good news was that the baby was fine; she nursed through this whole ordeal. The bad news was that my daughter had one parent with bipolar disorder and the other with borderline personality disorder along with addiction issues. She, herself, had abused drugs in the past. After all she'd been through, my daughter ended up addicted to painkillers, which then led to other drugs.

Her husband was stationed in Egypt for a year. She had an affair and became a heroin addict. Her marriage survived. They are now living with her dad.

For about a year, I would not talk to her because of the affair and her behavior. We've established boundaries and now have contact. I get to spend time with my granddaughter, who is now five years old and seems well-adjusted and happy. I don't see any signs of mental illness or abuse and am so thankful.

Currently my daughter is waiting to find out why she hasn't had a period in a year - she's full of endometriosis and cancer has been mentioned. Again, there is a family history.

Fortunately, all those women had hysterectomies and survived.

While we, at The Band, work tirelessly to bring you expert resource pages, sometimes the best advice is from someone who has been where you're standing. What follows is a mixture between a resource page and a post.

I introduce to you, The Band, a Demo Tape.

Take what you need and leave the rest.

I am one of the lucky ones. I am infertile, but after six failed Artificial Inseminations (AI), from two different doctors, and three surgeries to remove endometriosis and uterine polyps, I finally got pregnant with twins via In Vitro Fertilisation (IVF).

For the most part, I am on the other side of infertility, but there are times when I still get mad at my body for not cooperating. It took three years and almost twenty-thousand dollars to become pregnant. It doesn’t seem fair that most people get to become pregnant for free.  

There are a few things I want to pass along to those who are still trying to conceive but haven’t achieved pregnancy yet: 

(1) Expect to get rude/hurtful comments from people who find out you are going through Assisted Reproductive Treatment (ART).

You'll likely hear that you are being selfish for not adopting, or that it's not natural to get pregnant with a doctor’s help.

My comeback to the first point was always, “Well, I see you have biological children so why didn’t you adopt instead of getting pregnant? Isn’t that equally selfish?” 

This will generally shut them up, or at least get them to leave you alone. If they don’t have children, shrug it off. They don't know what it is like to want your own child.

And while adoption is right for many people, it isn't right for everyone. In my case, I was traumatized by my adopted sister and knew I wouldn't be a good adoptive parent.

People don’t know all the facts about your particular situation, and while it would be nice for them to mind their own business, they won’t. Ignore them if you can and focus on your goal of getting pregnant. 

As far as ART not being natural, if medical technology exists that can help with achieving pregnancy, it would be stupid not to use it. It is no different than any other medical condition for which a treatment exists.

For those people who will tell you that ART “takes God out of the process,” ummm, how so? If you believe in a God, then whether or not the ART is successful is a pretty good indication that God is involved in the process. If you don’t believe in a God, then you can discard this argument as not relevant and keep moving forward.

(2) If you are not seeing results from your doctor, change doctors. 

I know this is not a fun proposition, having to jump through all the hoops again, but if you are not getting results with your current clinic, you might want to consider a different clinic. I recommend checking out the Centers for Disease Control and Prevention's Annual ART Success Rates Reports to see where your provider stands (the CDC mandates that clinics performing ART annually provide data for all procedures performed).

(3) You already know this, it will hurt to see those around you get pregnant easily.

Baby showers will be torture. Pregnancy announcements will be like drive by shootings. You will probably cry every time you pee on one of those evil pee sticks and it comes up negative. The fertility medicines will make things worse. Expect to be more of a basket case than usual. Cry and then move on to the next part of your plan.

(4) Have a plan.

Call your insurance company ahead of time to see what they will cover. Look at your clinic's statistics for pregnancy success via AI (less expensive) and success rates for IVF (more expensive) and tell the doctor which way you want to go. 

When I was trying to get pregnant, protocol dictated three rounds of AI before progressing to IVF, but in some cases, it might be more advantageous to go directly to IVF if that is an option for you.

See if your clinic has a program where you pre-pay for three proceedures, and if you don't achieve pregnancy, a portion of your money is refunded. There are usually restrictions on these programs (age, medical history, etc.) but if you qualify, it can save you money. Approach getting pregnant as methodically as you can. 

(5) Expect to lose all sense of modesty. 

You will not care who sees your nether regions after a few rounds on the ART merry go round. You will feel like your body is not your own and that you are at the mercy of the doctors and lab technicians. It may feel like you are buying a car rather than trying to conceive a baby. That it is a normal feeling. Remember, how you get pregnant is not as important as that you get pregnant. 

(6) You will be annoyed by people who think that IVF is guaranteed to work.

People will refer to your embryos as being “implanted” into your uterus, when in reality, they are just transferred to your uterus. Implantation is not guaranteed.

It may take more than one attempt at IVF to get pregnant. This is also true for AI. Don’t get discouraged if you do not get pregnant on the first try. Put your head down and just keep plugging through the crap, the sadness, and the feelings of anger you have towards your body, until you come out the other side. And know that you will come out the other side. 

You will get through this. You will be a different person when all is said and done, but that is okay.

Don’t be afraid to tell people what you are going through. Although there will be those who are insensitive, you will be surprised at how many people suffer, or have suffered, with infertility. It is a very common condition. You are not alone. A lot of us have gone through it, are going through it, or have a relative who is going through it. Do not feel ashamed that you need help getting pregnant. Be gentle with yourself and know that you are one of many.

I wish you all success.

So many of us struggle with infertility,
yet we do so in the shadows. The unspoken struggles of eerily white negative pregnancy tests. The heartbreak of another month gone; our
wombs longing for children.Something so natural, something so normal, something we cannot do. It divides us from the rest of the world.This
month, The Band, we're inviting all of you who have struggled with infertility and miscarriage to bring your stories to the light.It's time to shine the spotlight on infertility and destroy the shadows we live in.

Last month I told my story of infertility.

I spoke of my struggle with endometriosis and a failing marriage. At the end, I wrote about how I had more or less made peace with my infertility.

What I didn't talk about was the dark side of my inability to conceive. I didn't tell you that, while I have made peace with my infertility, there are times when I haven't.

As a 40 year-old woman who was unable to have children in the traditional way, there are days when logic and emotion reconcile, and there are days when what I know intellectually is light years away from what I feel in my heart.

On those days, I go to "The Ugly Place."

My mind, body, heart, and soul sink to depths that I didn't realize existed until I had to have a hysterectomy in 2011.

It's a black hole of sadness and despair that is hard to climb out of.

I will never know the feeling of a tiny infant kicking in my womb.

I will never feel the pains of labor and delivery.

There will be no baby shower or decorating a nursery.

I will never know how it feels to love a child I carried and delivered.

I won't choose small socks or onesies for my son or daughter.

I will never wake at 3AM to the cries of an infant who is hungry.

No diaper changes or baby bottles. No strollers or car seats. No feety pajamas or binkies.

It's over.

On the days when I'm in The Ugly Place, I cry until my eyes are red and irritated.

Sometimes I scream because I'm so fucking angry at my body for not doing what it is supposed to do.

I don't like to talk about it, but I know that I should.

The Ugly Place is frightening.

Today I am baring my soul in hopes that someone reading my story is moved by my words and knows they are not alone in their Ugly Place.

I am writing about the dark side of my experience with infertility so that someone else who is (unfortunately) having their own struggle may be comforted and may feel understood.

No one prepares you for this kind of thing.

Young girls (and boys) don't sit down with their mothers and/or fathers and have "the talk" about what to do if they are unable to conceive.

We all simply discussed how to avoid getting pregnant when we were teenagers. No one was ever concerned about not getting pregnant - it was just taken for granted that one day it would happen.

It's hard to see pregnant women sometimes.

They are so beautiful with their full bellies and radiant skin.

They have what I want and will never have, and it is difficult not to break down when I see them.

I often see women around town with several children in tow, and I always wonder if they have any idea at all how lucky they are.

Many times I see women with children that they so obviously don't care about or want, and it makes my heart ache for the little boy or girl I will never have.

Then, I end up at The Ugly Place again asking questions like, "Why them? Why does that woman have children and I don't?"

I hear about children who are abused at home, and I don't understand why they were able to become parents, but I wasn't. It doesn't seem fair.

I would be a great mother, but no one will ever know just how good.

So while I have a pretty good handle on things most of the time, The Ugly Place is sneaky and sometimes takes over.

I didn't think it was fair to anyone reading my story that I only tell the part about how I've made peace with infertility.

If I'm going to share my story, then I need to share it all because otherwise I'm not helping anyone, including myself.

An Invisible Illness is a chronic, debilitating illness that you cannot easily see. Those with an invisible illness often struggle to explain their plight to others. They wind up feeling judged, misunderstood and alone. This month, we at Band Back Together are choosing to spotlight the silent, invisible illnesses. Why? Because we're tired of living in the dark.

Let's Band Back Together for Invisible Illnesses.

I really don't mean to be this way.

I know it's a drag for you, dealing with me.

I always seem to be complaining. My head hurts. My back hurts. I'm tired.

I just don't feel like doing anything.

My excuse is just that - an excuse. Right?

Endometriosis is a menstrual thing. 

Periods and their symptoms only last a few days a month - a week at most. 

And how bad can it really be? A little headache, some moodiness, a cramp or two.

I complain almost all of the time.

Take an aspirin, drink herbal tea, exercise, go on the pill, or have a baby.

I've done all of that. I've also tried massage therapy, diet modification, supplements, and surgery. 

Most men don't know what menstruation is all about, so they're cautiously sympathetic (most of the time). 

Women are the worst and treat me like a big whiner.

When I go into detail about my symptoms, men turn green.

Women usually assume I'm exaggerating.

I'm not exaggerating.

I'm no fan of pain pills, and I hate spending the day on the couch.

Nothing I've tried has helped.

Now that my insurance company won't cover treatment, I can't try anything else.

So I apologize.

I really am trying to suffer in silence and to participate in life even when I don't feel well.

But please understand that I feel like crap half of the time.