Not a fun past week or so. Well..that's not saying much since most of my days the past couple of months haven't been very fun, due to chronic pain with the endometriosis. But, for about the past two weeks, I've been having excruciating pain on my left side. This is where the mass is growing on my ovary. Back in January, David had to take me to the ER because the pain got so bad I could barely walk and was vomiting. They did a pelvic ultrasound and found the mass was pretty large. So, last Wednesday I literally got no sleep. David was upset about it and called off of work. I finally fell asleep around six in the morning, and he called my specialists office at nine when they open. He told them what is going on, and they wanted me to come in the next day for a procedure. We assumed it would be something to do for the pain. Wrong. So Thursday we get in the room, and the nurse comes in and asks if I've ever had this test before..and I say "No, I'm not even sure what you guys are planning on doing today". She said that when they did the pelvic exam (The one that left me bedridden for three days afterwards..ick) three weeks ago, it showed abnormal cells in my cervix. Oh God. I immediately burst into tears and started hyperventilating. Yeah, I have anxiety and panic disorder on top of everything else.
So, she explained what the Dr would be doing. I saw her open up a plastic bag that had a huge tool in it. More tears. So, I got to spread my legs in those ever so comfortable stirrups (Sorry if it's TMI, but it's REAL, these ones look like they're made for an obese person..my whole leg fits in them and still has a ton of room, they had to stuff sheets in there so it would be semi-comfortable (Ha!), I guess. He had this huge microscope thing with a light, opened me up, and took a "pinch biopsy" of my cervix. Ouch. The sweet nurse stood there rubbing my leg while he was doing it, and my even sweeter husband held my head and ran his fingers through my hair, whispering how much he loves me and how strong I am in my ear. I was trying so hard to get to my happy place (Disneyland) in my head, but the classical music was coming through speakers in the room and was very overpowering. I had tears pouring out of my eyes, it was so uncomfortable and painful. So, after it was done, he explained that it was very minimal and will probably come back as inflammation. But if it's something more, he said they found it early. Of course my mind is racing. CANCER? Yeah, I always think the worst. I won't know the results until later in the week sometimes, and I'm so worried. The last thing I need is yet another set back. They're also going to try and get me in for surgery this week instead of waiting until May 9th, but I'm doubtful that will happen. Something would have to open up this week, as he's on vacation the week after, and my surgery is two weeks from today. Plus I still have to go for my pre-op on Thursday and do all the blood work, so I don't know how they would be able to do the blood work, get the results back and perform the surgery so quickly. I wish they could do it sooner, but I'd rather wait until my blood tests all come back just to be safe.
I'm so ready to not be in pain constantly. I know endometriosis never goes away, but I have a feeling this surgery will give me my life back, at least for a little while anyway. If we're able to get pregnant afterwards, then maybe I'll have years of no pain, since they say pregnancy is the best thing for it. Send baby dust my way! :)
I know I saw this alot, but my husband is amazing. He's my rock. He's there with me through everything, and is never insensitive about what I'm going through. I've read other women post on endometriosis boards about how their husbands are always frustrated with them, how they're insensitive, and I think "Man, I'm lucky". He tells me all the time how he wish he could take the pain away, that he'd rather him have it than me, that he can't wait until I get better. He even has baby fever! He talks about us having a baby all the time. He's so excited. Since December he's been on a diet, and lost close to 30 lbs because he wants to be in good shape, and be healthy for our baby. He's starting renovations on our house so it will be in tip top shape when we have a little one. He's even dragged me into baby stores lately, wanting to look at all the necessities, pricing everything, researching which are the best things to get..it's so adorable!! He's already an amazing dad, and I can't wait for us to raise a child together in our happy, loving home. I am truly blessed.
I have posted a song below, by Rob Thomas, an artist both David and I love. He wrote this song for his wife who not only suffers from endometriosis, but lupus as well. David introduced me to this particular song, as it's written from a husband's perspective about dealing with a wife who is ill. He says the song takes the words right out of his mouth, because it hurts him to see me hurting. I definitely relate to the song as well, the lyrics he wrote about the things his wife say really hit close to home. We heard this song after my appointment and we sat there and held eachother. It as such a great moment. Enjoy the song :)
Monday, April 25, 2011
Thursday, April 14, 2011
Let's be real.
Does anyone else out there find it completely annoying at how fake people are these days? I see it everywhere from in front of my face, to facebook, to blogging. It just makes me sick. I believe we should all be comfortable in our own skin. We shouldn't be afraid to admit our faults, to be honest about the things in our lives that yeah, kind of suck, but if you're willing to admit that they suck and work on fixing it, why be ashamed? I see so many people who sit on FB or on Blogs and write about how awesome and amazing their lives are going, when I know that isn't the case. To me, I think, what's the point of blogging? I see blogging as kind of like a diary..it helps me vent, it helps me write out the things I sometimes can't say in real life. If I were to sit here and blog about how everything in my life was going amazing, my health was great, blah blah blah, the people that truly know me, would say bullshit. Don't hide the things in your life that are trials. That's what makes you who you are, overcoming those makes you stronger. Faking it just leads you to believe the lies you're telling which in turn, makes you crazy :) And nobody likes a crazy person. So you wanna know why my life isn't perfect? Well, I'll tell you. I'll follow it with what is perfect in my life, just so you know, not everything in my life is hard right now :)
*I have endometriosis. It's debilitating. I'm in pain every single day. I've also recently been told that I more than likely have developed fibromyalgia which could be why my pain has gotten so bad. This sucks. I hate it. But..it makes me stronger.
*I am battling infertility, due to the endometriosis. Do you know what it's like to want something so bad, and not something materialistic. Something that you can feel from the depths of your soul, a longing so bad that at times you literally feel like an empty person. I was born to be a mom. I don't know why this has to be a struggle for me. I don't understand why God has denied me from it for the time being anyway. He knows my heart. He knows how much I ache to be a mother. I know it will happen eventually. I may come off conceited here, but I will be the best mother I know. Because I want it more. I've had to work for it. That child will be my life, it will be a bond different than most mother/child bonds.
*I am currently unable to work. I don't like this. I loved working. I didn't necessarily enjoy my job at the bank, but I loved that it was MINE. I got to go everyday, do my job, earn money, get out of the house and interact with people. I think I've been good at every job that I've had, because I put my all into it and I genuinely like working with the public, so interacting with people on a daily basis was fun to me. Our town is such a small community I liked getting to know everyone by a first name. Due to the endometriosis and the symptoms I struggle with, I've been put on disability. So I am still bringing in money. It isn't as much as I made, but it's some. So sometimes I have guilt that I don't bring as much money to our household as I used to. I also miss the daily interaction with people.
*I suffer from anxiety & panic disorder. I believe this developed two years ago when I got severely ill from Mono. It almost completely shut down my immune system because I went untreated with it for over two months. I honestly thought I was dying, because that's what I felt like. Death. I can't even explain it. I wouldn't wish it on my worst enemy. But I had it in my head I was going to die. So I started getting panic attacks anytime I would have a little pain or twinge. Even though I'm pretty much recovered from mono (my immune system still isn't great), the anxiety didn't go away. Anxiety & Panic attacks are the worst feeling in the world to me.
*I'm not afraid to share, that I see a therapist once every two weeks. It helps me to deal with the anxiety, the stress of the endometriosis and infertility, and also alot of unresolved issues from my childhood concerning my biological father (even that is hard to call him. I prefer sperm donor).
So, kinda shitty, right? Yeah, it is. But I'm dealing with all of it. I've accepted it, and through therapy, I believe I'm getting a better grip on it all.
So, what's great in my life? Well, alot of things!
*David James Van Ingen. Without sounding like a total cheese ball here..he's amazing. He treats me like a princess, which I don't always deserve. I don't think there's a better man out there (Ok, he's in a tie with my dad). He's at my side through all of this. Have you ever had to have your husband give you a sponge bath because you're too weak to stand for that long? Comfort you while you're crying because you've stained yet another set of nice sheets, and then change them for you? Or without giving TMI here..change your pads for you because you can't get out of bed because the bleeding is so bad you're seeing stars? Bring you Disney movies and desserts in bed because he knows that they make you feel better? I don't know why he was single before he met me, but I thank God everyday he was, and that he chose me to spend the rest of his life with. I don't think another man would be able to not only put up with how miserable I can get at certain times because of this disease, but do the things he does for me. Yes, my marriage has it's faults, everyone does, but our good outweighs our bad by about a million pounds and it's only getting better from here. I look forward to the day that this disease doesn't take the toll on me that it does now, and we can get back to doing the things we did before. I can't wait to give him a child, and raise it in our amazingly loving home.
*My family. My parents are amazing. I miss them so much it hurts. They've never once been inconsiderate towards me while dealing with this disease. They understand that I'm dealing with alot and I just don't feel good. They help me anyway they can, and have never acted like my disease wasn't that big of a deal, which I know girls who have it and have been told that by their families. They've been there for me every step of the way and I know they always will be. I also am lucky to still have all of my grandparents. I adore them, and wish I was able to spend more time with them as they get older, I worry about certain things. I'm so thankful that they show me love in all kinds of ways, not everyone can say that & I'm lucky to be able to.
*Finances. We are in no way rich, or even upper class. But somehow, even with me only receiving disability, we have managed to almost pay off all of our debt, excluding medical bills. Going into our marriage we had alot of credit card debt, yes, mainly from me. Most of it from the wedding and honeymoon. We're about 4 months away from having that all paid off. I think the days of overdrawing bank accounts are long gone..and actually have been for awhile. That hasn't happened in almost two years. I do have quite a few medical bills that I have on payment plans right now, and those probably will take awhile to pay off, but we'll do it. Just like we've done everything else. We're no longer in the financial hole we once were. So, hopefully after surgery, and if I get the results I need from it, we can start planning more trips to visit family.
*My stepdaughter. Things haven't always been great between the two of us. Mostly because of me. I was always afraid of stepping on toes, I never wanted to try and be her mom, because let's face it, I'm not. I was afraid of maybe saying the wrong thing and then having to hear "Well you're not my mom", and then not knowing how to respond. There's other issues I won't go into on here.I love hanging out with her, talking and laughing. It's so much fun. I know that this also is something my husband enjoys because he wants nothing more than for her to grow up in a stable, loving environment.
*Friends. Specifically, my bff Marcy. She's always there for me no matter what. To vent to, to cry with, to laugh with..everything. I'm so thankful that I met her. She's maybe the only good thing that came out of working at the bank :) It's scary how much alike we are...even down to our massive obsession of everything Disney. She's struggled with health issues in the past also, and she just gets me. It's hard to find friends like her, and I'm so lucky to call her my friend. I can't wait until our trip to Disneyland together in October, I do feel sorry for our poor hubbys though! They might get left in the dust :)
So, there you have it. The good, the bad, and the ugly. I don't fake it up on here..it's my blog, my life isn't all sunshine and rainbows, and I'm not an author of fairy tales..I'm the author of my life.
*I have endometriosis. It's debilitating. I'm in pain every single day. I've also recently been told that I more than likely have developed fibromyalgia which could be why my pain has gotten so bad. This sucks. I hate it. But..it makes me stronger.
*I am battling infertility, due to the endometriosis. Do you know what it's like to want something so bad, and not something materialistic. Something that you can feel from the depths of your soul, a longing so bad that at times you literally feel like an empty person. I was born to be a mom. I don't know why this has to be a struggle for me. I don't understand why God has denied me from it for the time being anyway. He knows my heart. He knows how much I ache to be a mother. I know it will happen eventually. I may come off conceited here, but I will be the best mother I know. Because I want it more. I've had to work for it. That child will be my life, it will be a bond different than most mother/child bonds.
*I am currently unable to work. I don't like this. I loved working. I didn't necessarily enjoy my job at the bank, but I loved that it was MINE. I got to go everyday, do my job, earn money, get out of the house and interact with people. I think I've been good at every job that I've had, because I put my all into it and I genuinely like working with the public, so interacting with people on a daily basis was fun to me. Our town is such a small community I liked getting to know everyone by a first name. Due to the endometriosis and the symptoms I struggle with, I've been put on disability. So I am still bringing in money. It isn't as much as I made, but it's some. So sometimes I have guilt that I don't bring as much money to our household as I used to. I also miss the daily interaction with people.
*I suffer from anxiety & panic disorder. I believe this developed two years ago when I got severely ill from Mono. It almost completely shut down my immune system because I went untreated with it for over two months. I honestly thought I was dying, because that's what I felt like. Death. I can't even explain it. I wouldn't wish it on my worst enemy. But I had it in my head I was going to die. So I started getting panic attacks anytime I would have a little pain or twinge. Even though I'm pretty much recovered from mono (my immune system still isn't great), the anxiety didn't go away. Anxiety & Panic attacks are the worst feeling in the world to me.
*I'm not afraid to share, that I see a therapist once every two weeks. It helps me to deal with the anxiety, the stress of the endometriosis and infertility, and also alot of unresolved issues from my childhood concerning my biological father (even that is hard to call him. I prefer sperm donor).
So, kinda shitty, right? Yeah, it is. But I'm dealing with all of it. I've accepted it, and through therapy, I believe I'm getting a better grip on it all.
So, what's great in my life? Well, alot of things!
*David James Van Ingen. Without sounding like a total cheese ball here..he's amazing. He treats me like a princess, which I don't always deserve. I don't think there's a better man out there (Ok, he's in a tie with my dad). He's at my side through all of this. Have you ever had to have your husband give you a sponge bath because you're too weak to stand for that long? Comfort you while you're crying because you've stained yet another set of nice sheets, and then change them for you? Or without giving TMI here..change your pads for you because you can't get out of bed because the bleeding is so bad you're seeing stars? Bring you Disney movies and desserts in bed because he knows that they make you feel better? I don't know why he was single before he met me, but I thank God everyday he was, and that he chose me to spend the rest of his life with. I don't think another man would be able to not only put up with how miserable I can get at certain times because of this disease, but do the things he does for me. Yes, my marriage has it's faults, everyone does, but our good outweighs our bad by about a million pounds and it's only getting better from here. I look forward to the day that this disease doesn't take the toll on me that it does now, and we can get back to doing the things we did before. I can't wait to give him a child, and raise it in our amazingly loving home.
*My family. My parents are amazing. I miss them so much it hurts. They've never once been inconsiderate towards me while dealing with this disease. They understand that I'm dealing with alot and I just don't feel good. They help me anyway they can, and have never acted like my disease wasn't that big of a deal, which I know girls who have it and have been told that by their families. They've been there for me every step of the way and I know they always will be. I also am lucky to still have all of my grandparents. I adore them, and wish I was able to spend more time with them as they get older, I worry about certain things. I'm so thankful that they show me love in all kinds of ways, not everyone can say that & I'm lucky to be able to.
*Finances. We are in no way rich, or even upper class. But somehow, even with me only receiving disability, we have managed to almost pay off all of our debt, excluding medical bills. Going into our marriage we had alot of credit card debt, yes, mainly from me. Most of it from the wedding and honeymoon. We're about 4 months away from having that all paid off. I think the days of overdrawing bank accounts are long gone..and actually have been for awhile. That hasn't happened in almost two years. I do have quite a few medical bills that I have on payment plans right now, and those probably will take awhile to pay off, but we'll do it. Just like we've done everything else. We're no longer in the financial hole we once were. So, hopefully after surgery, and if I get the results I need from it, we can start planning more trips to visit family.
*My stepdaughter. Things haven't always been great between the two of us. Mostly because of me. I was always afraid of stepping on toes, I never wanted to try and be her mom, because let's face it, I'm not. I was afraid of maybe saying the wrong thing and then having to hear "Well you're not my mom", and then not knowing how to respond. There's other issues I won't go into on here.I love hanging out with her, talking and laughing. It's so much fun. I know that this also is something my husband enjoys because he wants nothing more than for her to grow up in a stable, loving environment.
*Friends. Specifically, my bff Marcy. She's always there for me no matter what. To vent to, to cry with, to laugh with..everything. I'm so thankful that I met her. She's maybe the only good thing that came out of working at the bank :) It's scary how much alike we are...even down to our massive obsession of everything Disney. She's struggled with health issues in the past also, and she just gets me. It's hard to find friends like her, and I'm so lucky to call her my friend. I can't wait until our trip to Disneyland together in October, I do feel sorry for our poor hubbys though! They might get left in the dust :)
So, there you have it. The good, the bad, and the ugly. I don't fake it up on here..it's my blog, my life isn't all sunshine and rainbows, and I'm not an author of fairy tales..I'm the author of my life.
Saturday, April 9, 2011
Endometriosis: When People Don't Understand
I'm lucky enough to have a husband and certain family members and friends who are so very supportive of me, and have taken the time to educate themselves about this disease, and they understand why I feel the way I do most of the time. To them, I will be forever grateful for their patience & understanding. I know there are those out there who have no idea what the disease is. Or they have heard of it but don't think it's that big of a deal. Or that it only effects me when I'm on my period. I thought of them when I saw this article :)
When others don’t understand
by Ellen T Johnson
Soon after being diagnosed with endometriosis, I learned that having a strange, difficult-to-pronounce, invisible disease is a real disadvantage. Explaining the disorder took a degree of bodily candour I didn’t yet possess. It would require at least some discussion of female anatomy, menstrual cy...cles, and pelvic pain. These were uncomfortable topics for me. I can only imagine how mysterious it would seem to friends and family!
My first few hesitant attempts to describe my new infirmity were met with blank stares, a few polite questions, and the oft asked, “When will you get better?” Although I’m sure friends and family cared about my health, they were too shocked, too puzzled, too squeamish, or perhaps too overwhelmed by my news to give me what I desperately wanted and needed – specifically, a hug, a kiss, and the phrase I never tire of hearing: “I’m sorry this is happening to you.”
If you’re warmly supported by the people in your life who’ve taken the time to learn about endometriosis and its effects on you, your body, and your relationships, you are indeed lucky. Some of us don’t have that luxury. Essential support and understanding is sometimes lacking in our close relationships. Not only do people not want to talk about “it,” they may actually shun the topic – or worse, shun us. Granted, our psyche might not be too wounded when co-workers, fellow students, or neighbours don’t comprehend the significance of what we’re dealing with (unless that lack of understanding affects our education or career, but that’s a topic for another discussion). However, it matters a great deal when our family, close friends, and loved ones don’t understand. Fortunately, there are some things we can do to help them – and ourselves.
Others’ perception of illness
In general, people view illness as a self-limiting event. A person gets sick, they get treatment, they get better. They mistakenly believe that if they don’t get better, it must mean they have a fatal disease. Most people don’t know there’s something between a minor annoyance and a life-threatening illness. They aren’t aware of chronic pain, persistent disease processes, or invisible illnesses. It’s difficult for most people to comprehend because it’s outside their realm of knowledge and experience. But there are ways to help our friends and family understand what we routinely go through as we repeatedly deal with endometriosis.
Helping our parents understand
When I first told my mother the gynaecologist suspected I had endometriosis, she didn’t believe me. In fact, she doubted such a condition existed. She actually thought the doctor was making it up. She was convinced only when I sent her a page copied from a medical textbook. Then she began to blame herself, thinking she’d caused it.
Parents respond to the news that their daughter has endometriosis in a variety of ways. They may be sceptical, angry, sad, guilty, confused, or shocked. Like my mother, they may be in denial. Their emotions are understandable; they don’t want their daughter to have a disease or be in pain! It hurts their hearts to see their daughter curled up in a foetal position with a heating pad on her tummy month after month. They’re hoping and praying it will go away. Maybe the doctors are wrong. Maybe the medication will help. Maybe time will take care of it. Or maybe, maybe, if we pretend it isn’t happening, it will go away.
When I was an endometriosis support group leader, the mother of one of our members came up to me after a meeting and said, “I feel so helpless! What can I say to my daughter that I haven’t already said?” My suggestion was to hug her, tell her you love her and that you’re sorry this is happening to her. Frustrated, she replied, “I’ve already said that!” I suggested that her daughter would never get tired of hearing it. She looked at me with great surprise. She didn’t realise the importance of her continuing emotional support.
That’s one way we can help our parents and ourselves – by telling them what we need. Don’t expect them to automatically know because they’d won’t. When I was having difficulty conceiving, I felt that my mother was being very critical of the decisions my husband and I were making. Unable to deal with her directly, I wrote a letter outlining how I felt and what I needed from her. Soon after, we talked on the phone. During the conversation, I learned that she didn’t disagree with our decisions at all! What I thought was criticism was actually fear. She was scared for us and desperately wanted us to be happy. From then on, she was only too glad to give me the support I needed. I felt as though a huge burden had been lifted from my shoulders. Never underestimate the importance of open and honest communication.
Once your parents understand what you need, you may want to consider enlightening them about the disease itself. For most of us, this isn’t an easy or natural process. It helps to have professionally prepared materials and a great deal of patience. More about the educational process later.
Helping spouses and significant others understand
It’s a well known fact that men like to fix things. When the women in their lives have a medical complaint, they feel it’s their duty to fix it – or at least offer a suggestion or two about how it should be fixed. After years of indoctrination, cajoling, and gentle encouragement, my husband still has a tendency to offer a quick fix when all I need is his understanding. Just last week, I told him I was hurting; his first response was, “Did you take something for it?” Nurture isn’t his nature, but most of the time, he can be coaxed into it. And that’s good enough for me.
How do we teach the men in our lives to be good nurturers? First, we need to tell them what we need (besides fixing). Something like, “I appreciate your suggestion, but what I really need right now is for you to put your arms around me and hold me.” I’ve found that if I give my husband something to do, he doesn’t feel as helpless. You can put your significant other to work by asking for a shoulder massage, showing him where to place his hand on your stomach to ease the pain, or requesting that he call out for dinner.
The trick in any close relationship is to keep talking, even when you don’t feel like it. My husband gives me a hard time when I don’t tell him what’s going on. He feels left out when I keep it all inside. I think a lot of us do that because endometriosis wears us out. We get so sick and tired of it, we’re absolutely certain those around us are also sick and tired of it. As a result, we sometimes put up a protective wall and stop communicating. Our loved ones don’t know why we’ve withdrawn. All they know is that, for whatever reason, we’ve cut them out of our lives. In our house, my self-imposed isolation has often resulted in a defensive and angry spouse. I might be the one who’s not feeling well physically, but I’ve wounded him emotionally. These days, when I need to withdraw from the world for a while, I tell him first. He takes it upon himself to screen my calls.
Like parents, spouses and significant others don’t want to see you in pain. They sometimes go to extreme lengths to avoid seeing you suffer. One friend’s husband dealt with it by denying the existence of endometriosis – hoping that if he didn’t learn about it, read about it, or talk about it, it wouldn’t be real. Her solution was to bring him to the endometriosis support group meetings. He soon learned that endometriosis was very, very real. Soon after, he began accompanying her to doctor’s appointments. Eventually, he became more empathetic and understanding.
Gentle, well-timed “education” can also help spouses and significant others understand the life-changing disease you’re dealing with. More about the educational process in a moment.
Helping friends understand
Seven years ago, my mother had a stroke. Up until then, she was a vibrant, active, dynamic woman on the go. She and her many friends went on shopping excursions and had lunch together at least once a week. After her stroke, at the time she needed them the most, her long-time friends became strangers. Naturally, she was hurt by their sudden departure from her life. It seemed so unfair – to endure a life-altering medical condition and lose her friends all at the same time.
When medical problems cause dramatic changes in our lives, our friendships often go through dramatic transitions as well. Friends might withdraw, seem unsympathetic, or deny what’s happening to you. Some might try to put a “happy face” on the situation by trying to cheer you up or repeatedly telling you “it could be worse” or encouraging you to “look on the bright side.” While some friends may be overly protective, others might avoid you altogether. It’s confusing and frustrating. But it helps to understand that the things your friends say and do may not reflect their true feelings. Inside, they might be worried, scared, and upset by the changes they see in you. But often, they won’t tell you how they really feel.
Real friendship is worth preserving. Talk openly to your friends about what’s going on and how you’re feeling. Explain the ways in which your life is different now. Tell them what you are and aren’t able to do.
Maybe you can’t go shopping for six hours, but you can go for an hour on your good days. True friends usually have the capacity for understanding. If they truly care, they can make accommodations for your modified lifestyle.
It’s a sad fact, but there are some people in this world who simply aren’t capable of dealing with difficult challenges. They’re what my mother calls “fair weather friends.” Despite honest and open communication on your part, some people still cannot (or will not) empathise or understand. They may react negatively when you can’t do the things you used to do. They may even try to make you feel guilty, as though endometriosis is your fault. Some people may even question your limitations, believing instead that you’re exaggerating or making it up for attention. These types of acquaintances will eventually undermine your health, your self-image, and your well-being. It may be in your best interest to re-evaluate your relationships with “fair weather” friends who doubt your honesty.
Real understanding
In my fantasy world, my friends and family understand me so well, I don’t have to explain what I’m going through. One word, one glance, and they just know. Not only do they know I’m not feeling well; they also know exactly how it feels. But that’s not reality. I can’t expect my friends and family to understand completely.
They will never know exactly how I feel because they’ve never had endometriosis. But I do know a few people who can identify precisely with what I’m going through. I found them through endometriosis support groups. With these women, I found real understanding. They knew my pain by heart. I soon discovered that the encouragement I received at the meetings helped alleviate some of the emotional burden I was putting on my spouse and family. Knowing there were others going through the same thing was both a relief and reinforcement.
If you have access to an endometriosis support group, you are very fortunate! Attend the meetings regularly and you’ll be rewarded with significant emotional comfort. As a bonus, you’ll likely form close and lifelong friendships – true friendships with women who really understand.
The training sessions
At some point, you’ll likely want to explain endometriosis to those you love and care about. Choose a time when you’re feeling strong and up to the challenge. Also be cognizant of your loved one’s frame of mind. As Sir Winston Churchill once said, “Personally, I’m always ready to learn, although I do not always like being taught.” Be sure your loved one is in a receptive mood before you begin. Timing is everything!
Choose a quiet, stress-free environment for this discussion. And it usually helps to relay your message a bit at a time. Endometriosis is a big and overwhelming subject to most people. Even though you may know the difference between an endometrioma and the endometrium, it isn’t necessary for your loved ones to have that level of detail. What we’re aiming for is understanding. So no long lectures!
Trainers tell us that adults learn best when the material is in an easily digestible format. So how about starting with a very broad, general explanation; something like:
“I’ve been diagnosed with endometriosis. This is what’s been causing me to have pelvic pain. It’s sort of mysterious because it occurs when the tissue similar to the lining of the uterus (womb) is found outside the uterus and causes growths. In my case, the endometriosis growths are on my ovaries, bowel, and uterus. It’s especially painful during menstruation. If you’d like to know more about it, I have some pamphlets from the support group.”
Excellent educational materials can support your initial discussion. See our list of resources below for more information about where to obtain the best materials.
During the initial discussion or a subsequent one, you’ll want to tell your loved one what you’re hopin they will be able to provide. Perhaps you need help locating a doctor who specialises in endometriosis. Or maybe you need help with the groceries. Or maybe all you need is the simple understanding that there are some times of the month when you won’t be able to do the things you normally do.
This is a lot for your loved one to take in, so be patient. Understand that when our loved ones are silent, that doesn’t necessarily mean they don’t care. They might be processing the information, waiting to take their cue from you, or may be unsure how much you want to talk about your disease.
Training experts will also tell you the value of repetition. Don’t expect your loved ones to have a complete understanding of endometriosis after hearing about it only once or twice. Plan on repeating the general definition a few times.
Your loved one will likely have a few questions. They’ll probably want to know about possible treatment and your prognosis. The prepared materials will help you answer most of these questions. You might also suggest they go to the doctor’s office with you. If your doctor is receptive to a “conference appointment,” you can ask your doctor to explain your condition to you and your loved one. The doctor can then address some of his or her questions.
It’s also important to know your loved one’s limits. Although your family loves you, they won’t be as absorbed by the minutiae of endometriosis as you are. I vividly remember when I bought my first endometriosis book! I was so excited, I read it cover to cover in one day. Thinking my husband would be equally fascinated, I read an entire chapter aloud to him before realising he’d fallen asleep halfwa through! Lesson learned.
Although some family members might read a good endometriosis book (see resources below), mostwon’t. And it’s probably unrealistic to expect them to do so. Perhaps a better alternative is to suggest a viewing of the video documentary, “Endometriosis: The Inside Story.” (See resources below.) It is perhaps the best and most powerful program about endometriosis that has ever been developed. A few years ago, my father-in-law became interested in endometriosis and its effects on my health and began quizzing me about it. After a few days of intense questioning, I asked him if he’d like to watch a video about the subject. He readily agreed. After we watched “The Inside Story,” he looked at me with sadness and said, “I had no idea.” This video documentary conveys more in 48 minutes than I could convey in a month! Other videos about endometriosis are available from support groups and online. Be sure to watch these programs first to make sure they’re accurate, that they convey the message you want to convey,andthat they’re suitable for family viewing. Unless you’re trained in resuscitation techniques, you’ll want to avoid programs that show endometriosis surgery in close detail!
Regaining your power
It’s a sad fact that having endometriosis often means we miss out on life for days or even weeks at a time. When that happens, the people you care about will likely be disappointed. Help them to understand that it’s not you, but rather the disease. Explain that your body simply won’t cooperate with your wishes. But when you’re having a good day, it’s equally important to take full advantage of it. Do something you enjoy. See a movie, take a walk, soak in the tub, or have a quiet dinner with a dear friend. You will regain some power over endometriosis when you claim those good days as your own.
Open communication is one of the main components of any healthy relationship. Talk with your family,friends, and significant other about the ways in which endometriosis affects you. Help them to understand that you’ll have some good days and some bad days. Supportive loved ones can help us through the inevitable tough times and help us celebrate our small victories. Nurturing their educational process is a good investment in your future health.
When education and open dialogue isn’t enough
There are instances where education and open communications about endometriosis does not naturally lead to greater understanding.
Despite knowing the mechanics of the disease and understanding how you feel, some family members may still harbour doubt and resentment. They may secretly think women with endometriosis are lazy, unmotivated, unwilling to do what the doctor says, or even enjoy being sick! Of course, nothing could be further from the truth.
When we’re not able to do the things that previously brought us joy, we grieve that loss! We may look “okay” on the outside, but we’re definitely “not okay” on the inside. If your loved one doesn’t believe you when you say you’re in pain, you may want to consider professional couples counselling or family counselling. A psychotherapist can explore the reasons for their distrust and guide you and your loved one(s) toward resolution.
Training resources
When you embark on your educational process, you’ll need some good materials to reinforce your message. Many of the books are available online or at your local library. This is not meant to be a complete listing of every book written about endometriosis, but rather a “good place to start”:
Endometriosis: The Complete Reference for Taking Charge of Your Health
by Mary Lou Ballweg and the Endometriosis Association
The Endometriosis Sourcebook
by Mary Lou Ballweg and the Endometriosis Association
Explaining Endometriosis
by Lorraine Henderson and Ros Wood of the Endometriosis Association of Victoria (Australia)
Endometriosis: A Key to Healing Through Nutrition
by Dian Shepperson Mills and Michael Vernon
Video
“Endometriosis: The Inside Story” – A powerful and important documentary about the journey of two women as they struggle with endometriosis. Also contains interviews with women in support groups and physicians who specialise in the treatment of endometriosis. Produced by Monica Flores (in the US) and Belle Browne (in Australia). 48 minutes. Highly recommende
When others don’t understand
by Ellen T Johnson
Soon after being diagnosed with endometriosis, I learned that having a strange, difficult-to-pronounce, invisible disease is a real disadvantage. Explaining the disorder took a degree of bodily candour I didn’t yet possess. It would require at least some discussion of female anatomy, menstrual cy...cles, and pelvic pain. These were uncomfortable topics for me. I can only imagine how mysterious it would seem to friends and family!
My first few hesitant attempts to describe my new infirmity were met with blank stares, a few polite questions, and the oft asked, “When will you get better?” Although I’m sure friends and family cared about my health, they were too shocked, too puzzled, too squeamish, or perhaps too overwhelmed by my news to give me what I desperately wanted and needed – specifically, a hug, a kiss, and the phrase I never tire of hearing: “I’m sorry this is happening to you.”
If you’re warmly supported by the people in your life who’ve taken the time to learn about endometriosis and its effects on you, your body, and your relationships, you are indeed lucky. Some of us don’t have that luxury. Essential support and understanding is sometimes lacking in our close relationships. Not only do people not want to talk about “it,” they may actually shun the topic – or worse, shun us. Granted, our psyche might not be too wounded when co-workers, fellow students, or neighbours don’t comprehend the significance of what we’re dealing with (unless that lack of understanding affects our education or career, but that’s a topic for another discussion). However, it matters a great deal when our family, close friends, and loved ones don’t understand. Fortunately, there are some things we can do to help them – and ourselves.
Others’ perception of illness
In general, people view illness as a self-limiting event. A person gets sick, they get treatment, they get better. They mistakenly believe that if they don’t get better, it must mean they have a fatal disease. Most people don’t know there’s something between a minor annoyance and a life-threatening illness. They aren’t aware of chronic pain, persistent disease processes, or invisible illnesses. It’s difficult for most people to comprehend because it’s outside their realm of knowledge and experience. But there are ways to help our friends and family understand what we routinely go through as we repeatedly deal with endometriosis.
Helping our parents understand
When I first told my mother the gynaecologist suspected I had endometriosis, she didn’t believe me. In fact, she doubted such a condition existed. She actually thought the doctor was making it up. She was convinced only when I sent her a page copied from a medical textbook. Then she began to blame herself, thinking she’d caused it.
Parents respond to the news that their daughter has endometriosis in a variety of ways. They may be sceptical, angry, sad, guilty, confused, or shocked. Like my mother, they may be in denial. Their emotions are understandable; they don’t want their daughter to have a disease or be in pain! It hurts their hearts to see their daughter curled up in a foetal position with a heating pad on her tummy month after month. They’re hoping and praying it will go away. Maybe the doctors are wrong. Maybe the medication will help. Maybe time will take care of it. Or maybe, maybe, if we pretend it isn’t happening, it will go away.
When I was an endometriosis support group leader, the mother of one of our members came up to me after a meeting and said, “I feel so helpless! What can I say to my daughter that I haven’t already said?” My suggestion was to hug her, tell her you love her and that you’re sorry this is happening to her. Frustrated, she replied, “I’ve already said that!” I suggested that her daughter would never get tired of hearing it. She looked at me with great surprise. She didn’t realise the importance of her continuing emotional support.
That’s one way we can help our parents and ourselves – by telling them what we need. Don’t expect them to automatically know because they’d won’t. When I was having difficulty conceiving, I felt that my mother was being very critical of the decisions my husband and I were making. Unable to deal with her directly, I wrote a letter outlining how I felt and what I needed from her. Soon after, we talked on the phone. During the conversation, I learned that she didn’t disagree with our decisions at all! What I thought was criticism was actually fear. She was scared for us and desperately wanted us to be happy. From then on, she was only too glad to give me the support I needed. I felt as though a huge burden had been lifted from my shoulders. Never underestimate the importance of open and honest communication.
Once your parents understand what you need, you may want to consider enlightening them about the disease itself. For most of us, this isn’t an easy or natural process. It helps to have professionally prepared materials and a great deal of patience. More about the educational process later.
Helping spouses and significant others understand
It’s a well known fact that men like to fix things. When the women in their lives have a medical complaint, they feel it’s their duty to fix it – or at least offer a suggestion or two about how it should be fixed. After years of indoctrination, cajoling, and gentle encouragement, my husband still has a tendency to offer a quick fix when all I need is his understanding. Just last week, I told him I was hurting; his first response was, “Did you take something for it?” Nurture isn’t his nature, but most of the time, he can be coaxed into it. And that’s good enough for me.
How do we teach the men in our lives to be good nurturers? First, we need to tell them what we need (besides fixing). Something like, “I appreciate your suggestion, but what I really need right now is for you to put your arms around me and hold me.” I’ve found that if I give my husband something to do, he doesn’t feel as helpless. You can put your significant other to work by asking for a shoulder massage, showing him where to place his hand on your stomach to ease the pain, or requesting that he call out for dinner.
The trick in any close relationship is to keep talking, even when you don’t feel like it. My husband gives me a hard time when I don’t tell him what’s going on. He feels left out when I keep it all inside. I think a lot of us do that because endometriosis wears us out. We get so sick and tired of it, we’re absolutely certain those around us are also sick and tired of it. As a result, we sometimes put up a protective wall and stop communicating. Our loved ones don’t know why we’ve withdrawn. All they know is that, for whatever reason, we’ve cut them out of our lives. In our house, my self-imposed isolation has often resulted in a defensive and angry spouse. I might be the one who’s not feeling well physically, but I’ve wounded him emotionally. These days, when I need to withdraw from the world for a while, I tell him first. He takes it upon himself to screen my calls.
Like parents, spouses and significant others don’t want to see you in pain. They sometimes go to extreme lengths to avoid seeing you suffer. One friend’s husband dealt with it by denying the existence of endometriosis – hoping that if he didn’t learn about it, read about it, or talk about it, it wouldn’t be real. Her solution was to bring him to the endometriosis support group meetings. He soon learned that endometriosis was very, very real. Soon after, he began accompanying her to doctor’s appointments. Eventually, he became more empathetic and understanding.
Gentle, well-timed “education” can also help spouses and significant others understand the life-changing disease you’re dealing with. More about the educational process in a moment.
Helping friends understand
Seven years ago, my mother had a stroke. Up until then, she was a vibrant, active, dynamic woman on the go. She and her many friends went on shopping excursions and had lunch together at least once a week. After her stroke, at the time she needed them the most, her long-time friends became strangers. Naturally, she was hurt by their sudden departure from her life. It seemed so unfair – to endure a life-altering medical condition and lose her friends all at the same time.
When medical problems cause dramatic changes in our lives, our friendships often go through dramatic transitions as well. Friends might withdraw, seem unsympathetic, or deny what’s happening to you. Some might try to put a “happy face” on the situation by trying to cheer you up or repeatedly telling you “it could be worse” or encouraging you to “look on the bright side.” While some friends may be overly protective, others might avoid you altogether. It’s confusing and frustrating. But it helps to understand that the things your friends say and do may not reflect their true feelings. Inside, they might be worried, scared, and upset by the changes they see in you. But often, they won’t tell you how they really feel.
Real friendship is worth preserving. Talk openly to your friends about what’s going on and how you’re feeling. Explain the ways in which your life is different now. Tell them what you are and aren’t able to do.
Maybe you can’t go shopping for six hours, but you can go for an hour on your good days. True friends usually have the capacity for understanding. If they truly care, they can make accommodations for your modified lifestyle.
It’s a sad fact, but there are some people in this world who simply aren’t capable of dealing with difficult challenges. They’re what my mother calls “fair weather friends.” Despite honest and open communication on your part, some people still cannot (or will not) empathise or understand. They may react negatively when you can’t do the things you used to do. They may even try to make you feel guilty, as though endometriosis is your fault. Some people may even question your limitations, believing instead that you’re exaggerating or making it up for attention. These types of acquaintances will eventually undermine your health, your self-image, and your well-being. It may be in your best interest to re-evaluate your relationships with “fair weather” friends who doubt your honesty.
Real understanding
In my fantasy world, my friends and family understand me so well, I don’t have to explain what I’m going through. One word, one glance, and they just know. Not only do they know I’m not feeling well; they also know exactly how it feels. But that’s not reality. I can’t expect my friends and family to understand completely.
They will never know exactly how I feel because they’ve never had endometriosis. But I do know a few people who can identify precisely with what I’m going through. I found them through endometriosis support groups. With these women, I found real understanding. They knew my pain by heart. I soon discovered that the encouragement I received at the meetings helped alleviate some of the emotional burden I was putting on my spouse and family. Knowing there were others going through the same thing was both a relief and reinforcement.
If you have access to an endometriosis support group, you are very fortunate! Attend the meetings regularly and you’ll be rewarded with significant emotional comfort. As a bonus, you’ll likely form close and lifelong friendships – true friendships with women who really understand.
The training sessions
At some point, you’ll likely want to explain endometriosis to those you love and care about. Choose a time when you’re feeling strong and up to the challenge. Also be cognizant of your loved one’s frame of mind. As Sir Winston Churchill once said, “Personally, I’m always ready to learn, although I do not always like being taught.” Be sure your loved one is in a receptive mood before you begin. Timing is everything!
Choose a quiet, stress-free environment for this discussion. And it usually helps to relay your message a bit at a time. Endometriosis is a big and overwhelming subject to most people. Even though you may know the difference between an endometrioma and the endometrium, it isn’t necessary for your loved ones to have that level of detail. What we’re aiming for is understanding. So no long lectures!
Trainers tell us that adults learn best when the material is in an easily digestible format. So how about starting with a very broad, general explanation; something like:
“I’ve been diagnosed with endometriosis. This is what’s been causing me to have pelvic pain. It’s sort of mysterious because it occurs when the tissue similar to the lining of the uterus (womb) is found outside the uterus and causes growths. In my case, the endometriosis growths are on my ovaries, bowel, and uterus. It’s especially painful during menstruation. If you’d like to know more about it, I have some pamphlets from the support group.”
Excellent educational materials can support your initial discussion. See our list of resources below for more information about where to obtain the best materials.
During the initial discussion or a subsequent one, you’ll want to tell your loved one what you’re hopin they will be able to provide. Perhaps you need help locating a doctor who specialises in endometriosis. Or maybe you need help with the groceries. Or maybe all you need is the simple understanding that there are some times of the month when you won’t be able to do the things you normally do.
This is a lot for your loved one to take in, so be patient. Understand that when our loved ones are silent, that doesn’t necessarily mean they don’t care. They might be processing the information, waiting to take their cue from you, or may be unsure how much you want to talk about your disease.
Training experts will also tell you the value of repetition. Don’t expect your loved ones to have a complete understanding of endometriosis after hearing about it only once or twice. Plan on repeating the general definition a few times.
Your loved one will likely have a few questions. They’ll probably want to know about possible treatment and your prognosis. The prepared materials will help you answer most of these questions. You might also suggest they go to the doctor’s office with you. If your doctor is receptive to a “conference appointment,” you can ask your doctor to explain your condition to you and your loved one. The doctor can then address some of his or her questions.
It’s also important to know your loved one’s limits. Although your family loves you, they won’t be as absorbed by the minutiae of endometriosis as you are. I vividly remember when I bought my first endometriosis book! I was so excited, I read it cover to cover in one day. Thinking my husband would be equally fascinated, I read an entire chapter aloud to him before realising he’d fallen asleep halfwa through! Lesson learned.
Although some family members might read a good endometriosis book (see resources below), mostwon’t. And it’s probably unrealistic to expect them to do so. Perhaps a better alternative is to suggest a viewing of the video documentary, “Endometriosis: The Inside Story.” (See resources below.) It is perhaps the best and most powerful program about endometriosis that has ever been developed. A few years ago, my father-in-law became interested in endometriosis and its effects on my health and began quizzing me about it. After a few days of intense questioning, I asked him if he’d like to watch a video about the subject. He readily agreed. After we watched “The Inside Story,” he looked at me with sadness and said, “I had no idea.” This video documentary conveys more in 48 minutes than I could convey in a month! Other videos about endometriosis are available from support groups and online. Be sure to watch these programs first to make sure they’re accurate, that they convey the message you want to convey,andthat they’re suitable for family viewing. Unless you’re trained in resuscitation techniques, you’ll want to avoid programs that show endometriosis surgery in close detail!
Regaining your power
It’s a sad fact that having endometriosis often means we miss out on life for days or even weeks at a time. When that happens, the people you care about will likely be disappointed. Help them to understand that it’s not you, but rather the disease. Explain that your body simply won’t cooperate with your wishes. But when you’re having a good day, it’s equally important to take full advantage of it. Do something you enjoy. See a movie, take a walk, soak in the tub, or have a quiet dinner with a dear friend. You will regain some power over endometriosis when you claim those good days as your own.
Open communication is one of the main components of any healthy relationship. Talk with your family,friends, and significant other about the ways in which endometriosis affects you. Help them to understand that you’ll have some good days and some bad days. Supportive loved ones can help us through the inevitable tough times and help us celebrate our small victories. Nurturing their educational process is a good investment in your future health.
When education and open dialogue isn’t enough
There are instances where education and open communications about endometriosis does not naturally lead to greater understanding.
Despite knowing the mechanics of the disease and understanding how you feel, some family members may still harbour doubt and resentment. They may secretly think women with endometriosis are lazy, unmotivated, unwilling to do what the doctor says, or even enjoy being sick! Of course, nothing could be further from the truth.
When we’re not able to do the things that previously brought us joy, we grieve that loss! We may look “okay” on the outside, but we’re definitely “not okay” on the inside. If your loved one doesn’t believe you when you say you’re in pain, you may want to consider professional couples counselling or family counselling. A psychotherapist can explore the reasons for their distrust and guide you and your loved one(s) toward resolution.
Training resources
When you embark on your educational process, you’ll need some good materials to reinforce your message. Many of the books are available online or at your local library. This is not meant to be a complete listing of every book written about endometriosis, but rather a “good place to start”:
Endometriosis: The Complete Reference for Taking Charge of Your Health
by Mary Lou Ballweg and the Endometriosis Association
The Endometriosis Sourcebook
by Mary Lou Ballweg and the Endometriosis Association
Explaining Endometriosis
by Lorraine Henderson and Ros Wood of the Endometriosis Association of Victoria (Australia)
Endometriosis: A Key to Healing Through Nutrition
by Dian Shepperson Mills and Michael Vernon
Video
“Endometriosis: The Inside Story” – A powerful and important documentary about the journey of two women as they struggle with endometriosis. Also contains interviews with women in support groups and physicians who specialise in the treatment of endometriosis. Produced by Monica Flores (in the US) and Belle Browne (in Australia). 48 minutes. Highly recommende
Friday, April 8, 2011
3AM
I can't sleep. I just can't seem to get ahold on my anxiety & panic disorder issues, especially in a hard situation. My boss from the bank was killed in a motorcylce accident 2 weeks ago, and the funeral is tomorrow. I'm not sure how to pull myself together for it. I worked with her every day, all day for about 3 years. As of July of 2010 I was no longer able to work and have been on disability because of the toll that endometriosis has taken over my body, there's just no way I can work right now. So I haven't seen her in a few months. I ran into her at the grocery store back before Christmas and we talked for awhile. She gave me a hug and said to say strong and that she was praying for me. She had the most infectious laugh I've ever heard. She loved her husband and her two young sons more than anything in the world. She was fun to hang out with, she loved dancing and we had the best time at Marcy's (my best friend, and also my former co-worker at the bank) wedding in February of last year. We danced and laughed all night, and her husband and David spent alot of time talking. We later watched ourselves on the wedding video and had a big laugh at how funny we were dancing. I just can't believe she isn't here anymore. I've never had anyone close to me die before, and it's just so unfair that this happened to her. Her husband survived and I can't even imagine how he will get over this. They had a great marriage. After being married 20 years you could still tell they were crazy about eachother. I will forever miss that laugh, and my heart aches for her two sons. This type of things make me question my faith. What was the purpose of this happening? She should still be here.
Below is a picture of myself with some co-workers at Marcy's wedding last year. Carmen is the one in the animal print dress. We will always miss you, and I will always keep this night in my memory. God bless your husband and sons <3
Below is a picture of myself with some co-workers at Marcy's wedding last year. Carmen is the one in the animal print dress. We will always miss you, and I will always keep this night in my memory. God bless your husband and sons <3
Sunday, April 3, 2011
Yup, more Disney! :)
We took a trip to Disneyland this past November for mine & my stepdaughters birthday. So, everyone who knows me knows its only my favorite place ever..ok, Disney World is too, but hey that's across the country & I've only been once. I hadn't been in a few years due to being sick and planning other trips. Oh how I'd missed it! It was a really special time for my husband, my stepdaughter & I. We had so much fun. A few new attractions have opened since we were last there. World of Color show..OMG. AMAZING. I don't know how Disney keeps topping themselves, but it's absolutely spectacular. Also, a Toy Story ride which was very cool. Everytime I go, it's like the first time. I'm always amazed at everything, get excited over every little thing and then cry when we leave. Not sobbing ugly cry, just shed a little tear the last time I walk through the gate and hear those beautiful little chime noises. It's magical, and it takes me back to being a kid again. I love that my husband & stepdaughter love it just as much (Ok, probably not on the same level as me lol). I think it's a place that has many more wonderful Van Ingen memories to be had...next trip is planned for the first week of October..David & I's FIFTH wedding anniversary! Wow 5 years! This is the second time we'll be celebrating our anniversary there, we spent our first one there as well. We had planned on Vegas, and then about two months before changed our minds. Same with this trip...haha. I have only been to Vegas once, & I was 18 and obviously couldn't do anything fun. I was also only there for a day before I recieved a horrific phonecall..but hey that's for a different post..maybe. Anyway, we discussed going in October since David has never been there. But honestly, anytime we want to plan a trip where we're gonna have to spend lots of money and spend three or four days, I always choose Disneyland. It's not somewhere we can go all the time, so I take any chance I can get. I'm also very excited because my best friend Marcy & her husband are going with us. Marcy is literally my female soulmate..she's just as much of a Disney lover as I am. Except, she gets to go to Disneyland way more than me..ugh! So I'm very excited for us to go together. Here's to October 2011! Five years of marriage, time spent with great friends..and two new rides! "The Little Mermaid" (You don't even understand my level of excitement about this one!) and a revamped "Star Tours", can't lie and say I'm not excited about that one, I'm a closeted Star Wars nerd. I still remember the first time I rode the original with my dad and how awesome I thought it was, I'd never been on anything like that. Let the countdown begin!!
Saturday, April 2, 2011
Damn you, Facebook.
SI constantly feel the need to blog. I've always been the type of person who likes to write every little thing down, since I tend to hold back a little on the spoken word. I've always gotten my emotions out better through my writing. I feel like I "semi blog" on Facebook..I mean, I write statuses about things going on in my life, talk to friends and vent through IM chat with those close to me, and then I feel better. But I realize..there's family and friends who read my blog who aren't on Facebook and who I don't get to talk to as much as I would like. So, where should I start??
Last Monday I saw the Endometriosis Specialist. How would you feel if they scheduled a surgery after your first meeting with them? Weird, right? Kinda scary to know my case is that bad. But I can't tell you how much I already adore this Dr. I love my Ob/Gyn and all..but let's face it. Endometriosis isn't his specialty. He did the routine laprascopic procedure, burned out what pieces he could, put me on hormones and that was it. Dr. Taksa, I'll be seeing you hopefully in a few months, when those two perfect little pink lines appear on a pregnancy test :) But for now, this new Dr is what I need. He is so educated on Endometriosis, and is doing surgery on May 9th. Instead of burning the endo, he'll be using a laser, which is better for it. It doesn't cause it to spread to other areas which is believed that that's what happened in the last surgery since my symptoms have gotten extremely worse. He'll also be cutting nerves along the uterine wall, and resurfacing. Kinda scary, right? But, he's seen a huge amount of patients who have not only benefited from this surgery in a major way, but become pregnant quickly after. Now, I've come to realize..after my first surgery, I didn't ever have an open window to become pregnant. Here's the timeline:
Surgery was November 2009. Immediately after I was put on Danazol, a hormone to help the endometriosis from growing back again so quickly. Was on Danzol from Nov 2009-July 2010. So, maybe TMI here, but for my endo sisters that read my blog, you know that when you're at Stage 3 Endo, sex isn't exactly pleasant. So, my poor husband went from having a pretty active sex life (Sorry mom! And Aunt Suzie! lol), to pretty much maybe once or twice a month..and never while I was ovulating because it's a painful time of month for me. Then in November 2010 I was put on birth control to try and shrink the endometrial mass on my left ovary. Stopped taking it in January of this year. Now we're in March. See what I mean, no opening. I've spent alot of time getting discouraged "Why didn't I get pregnant after surgery, I thought it would happen?" Well..how am I supposed to get pregnant while taking Danzol which shuts down my ovaries, taking birth control, and barely having sex? So..with the rates of success from pain and achieving pregnancy after this procedure..Baby Van Ingen will hopefully be on his way very soon. Or her. :)
Not just getting pregnant excites me, getting my life back excites me. One thing that people who don't have Endometriosis don't realize (Please, people, research the disease, educate yourselves) is it's not just pain during my period. I'm in pain all the friggin' time! I've been told I possibly have Fibromyalgia as well, since 60-70 percent of women with Endo do, and I'm starting to believe it. I have very low energy levels, which was never the case with me. I'm constantly fatigued, nauseous, I have very low hemoglobin, my weight never seems to stay up, I have constant abdominal pain, not to mention horrible pain on the left side from the mass, back pain, even the bottom of my feet hurt.I won't even get into what it's like during my period..I'm literally bed ridden for five days. I never used to be like this. I used to actually love working. I crave going back to work. I crave being able to go on walks again with my husband without feeling like I'm gonna pass out. I crave being able to sleep normal hours and not wake up constantly because I'm in pain or because my anxiety levels are so high my mind won't shut off. So, we are praying this surgery is exactly what I need. To get back to myself..and to make a little mini me, and David :)
Last Monday I saw the Endometriosis Specialist. How would you feel if they scheduled a surgery after your first meeting with them? Weird, right? Kinda scary to know my case is that bad. But I can't tell you how much I already adore this Dr. I love my Ob/Gyn and all..but let's face it. Endometriosis isn't his specialty. He did the routine laprascopic procedure, burned out what pieces he could, put me on hormones and that was it. Dr. Taksa, I'll be seeing you hopefully in a few months, when those two perfect little pink lines appear on a pregnancy test :) But for now, this new Dr is what I need. He is so educated on Endometriosis, and is doing surgery on May 9th. Instead of burning the endo, he'll be using a laser, which is better for it. It doesn't cause it to spread to other areas which is believed that that's what happened in the last surgery since my symptoms have gotten extremely worse. He'll also be cutting nerves along the uterine wall, and resurfacing. Kinda scary, right? But, he's seen a huge amount of patients who have not only benefited from this surgery in a major way, but become pregnant quickly after. Now, I've come to realize..after my first surgery, I didn't ever have an open window to become pregnant. Here's the timeline:
Surgery was November 2009. Immediately after I was put on Danazol, a hormone to help the endometriosis from growing back again so quickly. Was on Danzol from Nov 2009-July 2010. So, maybe TMI here, but for my endo sisters that read my blog, you know that when you're at Stage 3 Endo, sex isn't exactly pleasant. So, my poor husband went from having a pretty active sex life (Sorry mom! And Aunt Suzie! lol), to pretty much maybe once or twice a month..and never while I was ovulating because it's a painful time of month for me. Then in November 2010 I was put on birth control to try and shrink the endometrial mass on my left ovary. Stopped taking it in January of this year. Now we're in March. See what I mean, no opening. I've spent alot of time getting discouraged "Why didn't I get pregnant after surgery, I thought it would happen?" Well..how am I supposed to get pregnant while taking Danzol which shuts down my ovaries, taking birth control, and barely having sex? So..with the rates of success from pain and achieving pregnancy after this procedure..Baby Van Ingen will hopefully be on his way very soon. Or her. :)
Not just getting pregnant excites me, getting my life back excites me. One thing that people who don't have Endometriosis don't realize (Please, people, research the disease, educate yourselves) is it's not just pain during my period. I'm in pain all the friggin' time! I've been told I possibly have Fibromyalgia as well, since 60-70 percent of women with Endo do, and I'm starting to believe it. I have very low energy levels, which was never the case with me. I'm constantly fatigued, nauseous, I have very low hemoglobin, my weight never seems to stay up, I have constant abdominal pain, not to mention horrible pain on the left side from the mass, back pain, even the bottom of my feet hurt.I won't even get into what it's like during my period..I'm literally bed ridden for five days. I never used to be like this. I used to actually love working. I crave going back to work. I crave being able to go on walks again with my husband without feeling like I'm gonna pass out. I crave being able to sleep normal hours and not wake up constantly because I'm in pain or because my anxiety levels are so high my mind won't shut off. So, we are praying this surgery is exactly what I need. To get back to myself..and to make a little mini me, and David :)
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