I wanted to die last night. There, I said it. Ugly thing to say, right? Might even make you want to inch just slightly away from me. Feel free to. Sometimes I want to inch away from myself as well. But before you judge, try to listen to what I have to say. Assess my words with an open, empathetic heart, and think about the way you would feel if you were in my shoes. It may sound as though I am trying to pull at your heartstrings, to make you feel depressed for me and my life, but I am not. I just want you to understand what it’s like to be a woman who suffers from endometriosis. I just want you to understand. These are the realities of living with endometriosis.
Dealing With the Physical Reality of Endometriosis
Pain. Imagine your abdomen and pelvis are encased in barbed wire so that the spikes of the wire are actually piercing them, stabbing them sharply every time you move. Now imagine that the barbed wire is actually attached to some sort of electrical current that shoots electricity through the spikes, increasing the intensity of each penetration. Next, add a machine that alternates shooting the electrical spikes into the body and pulling them out again in random intervals, thus adding a surprise and shock factor to the pain. Lastly, in addition to the shocking electrical stabbing pain, there are deep, underlying waves of pain that crush and release the muscles, causing a cramp so excruciating it takes your breath away. Imagine living with that agony on an everyday basis.
I live with a veil of pain draped over my body. Not stubbed toe pain, sprained ankle pain, or even broken heart pain. The pain that I feel every day is an all-encompassing event, specially formulated to break both my body and my spirit. It is a visceral and animalistic torture that brings me to my knees in surrender. That is the reality of living with endometriosis.
Fatigue. I want you to try to recall a night during which you slept very little. Maybe you had a party the night before, or perhaps you were up doing work. Now think about the way both your body and mind felt the following day. Did you function as well as usual? Were your movements as fluid, your mind as sharp? Or did it feel as though you were moving through quicksand, your brain wrapped in cellophane? How would you deal if you felt like that every day?
I live with a crushing form of fatigue that makes my every move devastatingly cumbersome. I often feel as though I am nine months pregnant with quadruplets, constantly carrying around an enormous weight that is attached to my body, sucking whatever strength I have left. My limbs feel like they are wrapped in lead, and my eyelids covered in cement. All my body wants to do is sleep, every minute of every day, but it can’t. My life doesn’t take a nap when I do.
The Emotional Reality of Endometriosis: Depression
I wish I could say the physical aspects of endometriosis are all that plague me. Unfortunately, this is not the case. You see, for every physical malady that plagues women with endometriosis, there is an emotional component that is equally, if not more, devastating.
Guilt. Guilt is like an itchy woolen sweater that is two sizes too small: suffocating, uncomfortable, and in desperate need of being shed. It permeates the many aspects of my life and makes me miserable. I feel guilty for having endometriosis to begin with, as I sometimes wonder what I did wrong to deserve it. I also feel guilty that I cannot give my husband the emotional or physical attention he needs. I feel guilty that my close friends and family have to spend their days taking care of me when I am incapacitated and that I spend my days idling around the house while they work hard. I feel guilty for canceling plans that I made weeks ago and the lack of ability to make plans to begin with. Guilty that I cannot be a good friend to others. And guilty when I think of my children who I cannot take care of the way they deserve to be taken care of. Finally, I feel guilty that I cannot give my husband any more precious children due to the hysterectomy I had that was not even successful.
Inadequacy. Due to the symptoms of endometriosis, I often feel inadequate and obsolete. I feel like I lack the ability to do anything important, like my job, or household work. Relationships with my spouse, kids, parents, siblings and even my friends are often placed on the back burner as I struggle daily to merely exist. This inability to maintain relationships, keep my job, take care of myself or family members or even be intimate with my spouse overwhelms me with the feeling that I am incompetent, useless, and valueless. Sometimes I even feel as though my existence on this earth is pointless if I can’t be a functioning member of society. These feelings of incompetence sometimes also lead to depression, embarrassment, guilt, and rage.
Anger. Imagine being told that the agonizing pain you feel every second of every day is not real, that you are making a big deal out of nothing. How would you feel? Anger? Rage? Imagine being told that you are a “druggie” when you ask your doctor for pain medication to ease the misery you are dealing with. Anger again? Or how would you feel towards “God” or “The Universe” if you let your mind wander to the opportunities you would have if you didn’t have endometriosis? It’s hard not to be furious when you think of everything you are missing or losing due to this disease. What if you’ve tried for years to get pregnant with no success or just miscarried the child you’ve wanted all of your life. And imagine being so debilitated by your symptoms that you are unable to perform your everyday activities. How would you feel? Frustrated? Angry? That’s exactly the way I feel.
Jealousy. For me, jealousy rears its ugly head when I see other people performing activities that I am too sick or fatigued to perform. It is hard not to be jealous of a healthy person when I am stuck in bed, too exhausted to move, or lying on the couch, writhing in pain. Just seeing someone go food shopping without discomfort causes jealousy within me, as I would do anything to be able to perform everyday activities without pain. Jealousy is also inevitable when we I see other women, basking in their pregnant glow, and I know that I will never again carry a living being inside of me.
Loneliness. Yes, I am extraordinarily lucky to have a wonderful support system in my life, and I am enormously thankful for that support, but there is a profound, hollow loneliness that sometimes overwhelms me when it occurs to me that despite their best efforts, my loved ones cannot fully understand what I am going through. Even my sisters with endometriosis cannot completely comprehend my individual suffering, as every person suffers uniquely. Therefore, I am sometimes led to feel as though no one understands me, and there is no thought lonelier than that.
Loss. Endometriosis is a disease that is full of loss and mourning. On a basic level, I mourn the loss of a “normal”, illness-free life. A life that is chock-full of boring, everyday activities and errands. I am no stranger to mourning or to loss. Having a miscarriage created a deep, inconsolable hole within me that will remain with me forever. But most of all, having a hysterectomy has caused a ubiquitous feeling of loss within me as I mourn, not only the loss of potential children, but the loss of a part of my womanhood.
Depression. Oh, depression. That dark, suffocating feeling when the world looks like it has no color in it and our futures seem murky and unclear. For me, depression is caused by many different things. Being alone all the time, not being able to spend time with family and friends due to pain, fatigue or other symptoms is depressing. Excruciating pain is depressing. Feeling like my illness is misunderstood is depressing. Feeling like I need to be embarrassed of my illness is depressing. And lastly, the thought that there might not be any hope for my recovery because there is no tangible hope for a cure, that I might have to deal with the incapacitating symptoms of endometriosis for the rest of my life, is the most depressing thought of all. That is why I wanted to end my life. Yes, I contemplated suicide. Like so many of my sisters with endometriosis, I hit bottom. I was tired of the pain, tired of the despair, tired of the guilt, and tired of being tired. But mostly, I was and am, just tired of the pain.
Living with Endometriosis is Horrendous
Now that I have exposed my vulnerable and aching heart to you, my friend, you have a choice to make. I will never blame you if you choose to stay away from my complicated and sometimes depressing life. Like I said, if I had the choice, I would probably do the same. But let me say one last thing before you make your decision. Life with endometriosis is horrendous, but women with endometriosis are not. We are strong, determined women who fight fiercely and love fiercely. We try our best. We are not lazy or pathetic and we don’t give up. We may not sugarcoat the painful emotions and terrifying symptoms that we deal with. Our honesty may even frighten you. But when you meet a woman with endometriosis, you are meeting a proud, indomitable warrior. A soldier who goes into the fire on a daily basis and emerges with a thicker skin time and time again. A woman who should not be pitied for her pain, but admired for her ever-present resilience and strength. That, my friend, is who I am. Take me or leave me. It’s up to you.
I had surgery in 2012 my uterus had attached itself to my bowel. I have been able to cope with the pain till a year ago, I am in so much pain and people who don’t have endometriosis don’t understand. I finally had an appointment with the doctor and they were like ” try the marina coil and come back in 6 months” . I felt like I had been stabbed in the heart, I know that something is wrong and once again, I am fobbed off. I told my husband I will try the next 6 months with the coil, but if they pain continues, I will be ending my life. I hate the person I have be one with endometriosis, so why go on living?
I’m sorry, I feel for u, I knw the pain is intense and unbearable, But the best solution is to try all the natural herbs n see which makes a difference to ur body, try wild oregano oil n cannabis capsules, it’s helping me cope alot better with life?
Thank you! Thank you for being honest, open, and fearless about sharing your story. I too have endometriosis and can agree with everything that you wrote! There are so many of us out there that are going through the daily struggle of just existing each day. Praying that this day will be better than the day before. It’s refreshing to read your post and know that I am not alone. You will forever have a sister in me!
Thanks so much for sharing your story. Brought tears to my eyes. As I can never find the right words to say or explain how I feel, it all just seems so overwhelming, too many symptoms to list. God bless you and the other sisters with endo. Stay strong and fight on!! ??????
I just found this out for me today that i have it and I feel the same. My Dr wont let me get a hysterectomy so my husband and I have to do fertility.
How very lovely for you to take time out and write this I have spent years of having endo treatments surgery getting to the stage now ” just leave me alone doc’s I’ve had enough. Along side it feeling less of a woman and guilt, my husband hasn’t always been understanding but has stuck by me and I am so lucky to have two grown up children. I am 42 and started on early menopause now and nd I’m struggling with my emotions as I’m on HRT which in turn us making my endo grow yet again. I too have some days I don’t feel like moving because if pain my husband says I sleep too much as he really still doesn’t understand the endo 15 years on. I’m so glad of people like yourself writing things like this we arnt alone even though we feel it! I have tried to take my own life too but not anymore I just cope with the pain and I’m thankful for my grown up girl and boy they are worth living for and my son gave me two beautiful grandchildren at such an early age. My daughter is 19 and has always had ” bad periods ” and is being investigated for having what can only be called as periods out from her back end ! I pray as I feel guilt ridden that she hasn’t got endometriosis. Much love sisters ♡.
Also meant to say I’m on lots of tablets for the depression after trying to take my life X2 and now dose of antidepressants are higher as the hrt is making my hormones actually into a rage and I don’t feel I have any other options for the menopause only just jeep taking more and more antidepressants to help with the symptoms the hrt is causing me I know this ater having zolodex years ago to treat endo you also had to be put on hrt so I’ve been through this menopause once before and my sweats are bad but don’t want a bigger dose of hrt to send me loopy does anyone else feel like no natter what you do you can’t win ?
I too am a sufferer for the last twenty six years, and I feel like you’re writing about me. I did attempt to take my life at one point and I’m glad I’m still here. Love you for sharing.
So Rachel how does it feel to have endo and have had your hysterectomy as well? It did not cure the endo did it? And now you suffer with both. I have felt suicidal too since having my total hysterectomy. I regret the day I agreed to it, and listened to my partner who claims he know nothing of it. I will never forgive him either. He was very abusive and I think on some subconcious level that he wanted me to never be a fully functioning woman ever again. Sort of the theory; if you leave me no one will ever have you if I can’t have you. I am still having a grief reaction to all of it. Still bargaining two years later. I will hate him for eternity; I will never forgive him for making me go in, no matter how much he saw me suffer with ando. I will never forgive him for eternity; ever. For now he knows, he robbed me of everything in my life.
I struggle everyday with pain, fatigue, digestive problems, loneliness and guilt. Endometriosis has taken over my whole soul…I feel your pain and appriciate that there are many other woman dealing with this and I am not alone…and on the same hand I hate that any other person has to deal with what I do on a daily basis. I am a hairstylist at a very busy salon and some days I can’t imagine lasting one more client. I’ll do 13 to 23 haircuts and other services a day…when I come home I am exhausted, but still can not take the time to rest since I am lucky enough to have children. I am in a committed relationship, how ever I feel alone most days…he doesn’t understand what I go through. And sex, lol that’s just a painful horrifying thing that I deal with foe his sake. Takes 3 days to recover. I’ve had a few procedures done. And so far the only good is I no longer have that dreaded monthly flow. However I still feel the rest of the symptoms and sometimes worse than before. I feel so lost. I’m tired of dr’s telling me to “stay off Web md” and they don’t take me seriously. ..due to ibs-c I can not even take ib prof or tylinal for pain relief. Deff cant take pain killers. medical Marijuana used to help soothe my pain and let me relax but now no longer helps….I just wonder why I’ve been so cursed.
Yes I too suffer with my digestion all the time sone days I can’t get off the loo and feel so sick as I’ve bled internally with the endo being on my bowel we have what you call double trouble! Love an endo sister.
I had a wee cry when I read your article – thank you so much for writing it. It is such a horrible condition to live with and so difficult to explain to people. I went to see my counsellor today and at the beginning listed all the symptoms I’m currently struggling with; pain, debilitating fatigue, dizziness, headache, achy muscles etc and she said, ‘but you look really well!’ I had to give up my job last year due to what they said is CFS but is really just Stage IV endo….about to have another lap in a few weeks time and try a coil. I’ve got to the point where I can just about manage with the pain, but the fatigue is horrendous – some days just having a shower is enough to need to lie down for hours after. I used to be a gardener and loved being out all day – I get so upset when I try to do a little and can’t move. I know what you mean about the jealousy too….there is so much acceptance we have to do compared to other people it seems. Though when I have a good day I am filled with joy and gratitude that can almost be overwhelming! It is a rollercoaster with no end in sight – I can sympathise with your feelings of depression – I guess we just have to find comfort in the little things and hope it is enough.
My deepest gratitude to you for writing this article about your utmost feelings and pain of being an Endometriosis Fighter! It completes me of how I feel everyday. It’s even harder to hold back tears of how much I felt reading your article/blog, I am even shaking just writing how I feel right now. Thank you for making me not feel alone fighting with this disease. I am in the verge of going through the decision making of having a hysterectomy. I am exhausted, fatigue is just the starting point of explaining it. Everyday I have to pick myself up and tell myself this disease can’t break me, I have a family and most importantly I have a life to live. Everyday is getting harder and harder and the hormonal replacement therapy is killing me slowly with hotflashes, mood swings, headaches, abdominal pains, nauseous, dizziness, and my mentality is no longer there. I agree with you, apart of my woman hood has been lost and will be lost forever after getting a hysterectomy. I feel lost at times but this article made me feel better that I am not alone. I just wanted you to know how appreciative I am that your sharing your experiences and create this wonderful bond for all the Endometriosis Fighters out there!
so why cant we find dr that take care of people that have this……………….instead of not wanting to help all that have this. my daughters dr wont help her eaither……….we need a list of dr that will help the girls that have it
Try seeing Dr. Camran Nezhat in Palo Alto, CA. He’s compassionate and a great professional. He literally saved my life in 2009.
Feel free to email me if you need more information: carojovenich@gmail.com
This made me cry. Because it is exactly how I feel. Heading for surgery #7 even after losing all female organs three surgeries ago. I don’t need to tell you how right on this is. OMG, the grocery shopping! By the time I get home I’m in so much pain I’m dizzy and shaking!! No one who knows me really understands this. Thank you for writing this, so much!!
Hi Rachel
My wife has the same condition and I can totally understand you. I want to tell you few things, from my perspective.
You’re not weak. Coming forward with this article requires strength. You’re like the Phoenix bird, you rose from your ashes after you hit that rock bottom. You have my utmost respect for rising and voicing your feelings.
You should not feel any guilt. It’s not something you sought of having, it’s not something you asked for. You just had the bad luck of having the “right” combination of genes, I guess. I am telling this to my wife as well. If anything, I am feeling guilty for not being able to help her much. I am torn between letting her do whatever she wants, like household work, when she has the strength and force her to sit and rest… The fatigue is overwhelming.
I am feeling valueless because I cannot buy a team of scientists and dedicate that team to research this disease.
My whole world revolves around her and I asked God several times to give me her pain and let her enjoy life more… Till now, this didn’t happened.
I happily gave up my social life (I anyway didn’t have much of it 🙂 ), to be more with her, more around her. If she felt sick, to help her and stay with her in bed. When she felt ok, to enjoy a short stroll circling the block or do a small gardening.
I totally understand your anger, your jealousy. But, in my opinion, I think the pain is enough. Deal with that, leave the anger and jealousy aside. Because that small amount of time when you’re not in pain, enjoy it with your family. Anger clouds your mind, jealousy clouds your heart. Pain does both… Don’t add another 2 layers to that.
I just hope that you’re lucky enough to have a supporting family, supporting friends and don’t forget: it’s men who are weak, not women. Behind every strong man, there’s an even stronger woman.
Hang in there and I wish you all the best.
Alin
Thank thank Alin. For being writing such a supportive and underetanding account. I was crying reading what you wrote. You have helped me release my guilt. I had to cancel my wedding a week before the date after being told I had a large ovarian cyst discovered on scan following an agonising miscarriage. When i had the operation they found I had stage 4 endometriosis. I had turned 40 years. That was in 2003 my partner was supportive at the time but all the horrendous experiences physical and mental took its toll on our relationship ended in 2009. I then met someone else who I was with for 2 years. He couldnt take my fatigue. I now have very brief relationships. You give me hope that a man can cope with this debilitaing illness. I must point out on a good day I have the time of my life dancing and having fun with friends. I have a great sense of humour. Thank again. katie
check out this article:
http://womenshealthfoundation.org/2012/02/27/pelvic-pain-can-be-related-to-varicose-veins-2/#comment-53502
Rachael
You are beautiful! This was so awesome of you to open up and say all the things a women with endo thinks. You are strong, beautiful and powerful. Look how your helping so many women and the people they know and so on. You have made a big difference in so many lives. This is getting the word out, this is public awareness. This is you standing at the top of the mountain and shouting out to all. I respect you and I consider you a friend. I received this from a great friend who also has endo. I read this too my husband and son and had to stop a few times because I was cring so hard. Please stay strong we need you and many more women like you so we can take a stand and fight for a cure!!
My thoughts and prayers are with you. Please respond so we can keep in touch.
Gina
I actually used those words just the other day. I always described it as a combination of overwhelm, wrapped in guilt and somehow not feeling good enough. Love your article and can relate on so many levels. I am going to share this with a friend who doens’t always understand how to truly connect with women with Endometriosis. She is always trying to help but somehow gets misunderstood by it all. Big hugs fellow endo sister!
Thankyou for your courageous article. now I know I am not going crazy and not the only one to think these things. We are just so tired of the pain, some days it is almost too much. It is so hard to admit the the reality of endo to people because of fear of judged as a flake when all we want to do is be healthy so we can live life like everyone else,
I feel the same way. I sent this to my husband so he can understand how it feels when im hurting so much. What hurts me the most is when im hurting so bad and my 4 year old son comes up to me and asks me to play with him.
I am thankful for your willingness to be vulnerable and put into words exactly how I am feeling. It’s almost as if you looked inside my life and wrote this about me! I haven’t had the opportunity to have children yet, and my doctor has me on Depot Lupron treatment right now (which doesn’t seen to be working). Our next step will be a hysterectomy, but I am unsure if I want to take it that far as so many have not had success from this. I will pray for you, sweet girl!
I love you for writing this. Everybody, especially doctors, needs to read this.
Yes!!!! Especially doctors, since they are the ones who need to help us instead of ignoring and neglecting this disease. They need to understand what this disease does to people. It’s sickening the way most people with Endo are treated by doctors. Sickening!!
I couldn’t possibly relate more….the eerie similarities, I could have written this myself! …and I am typing this through tears.
You are not alone. I feel for you and every woman who also has to live with this. Stay strong.
Sending love&light,
Lauren
I could barely read your story for the tears that fell as I related yours to mine. I have thought about death more times than I can count. Reading of your strength and bravery gives me the courage to face this day. Thank you!
Rachel- I had to post your article on my FB page. I basically stated ” this is me, this is my life. If you love me, you will read this and hopefully have a better understanding”
I’m sure you have gotten this response from many others, are you SURE you didn’t write MY LIFE STORY? The MOST frustrating part? No studies on POST menopausal women! WHY? I’m 53, told I look 35 but feel 83. I am SO OVER IT! want my life back? I haven’t HAD a life for 20 years ! Before THAT, it was once a month for about 7 days so I guess that counts too. 18 surgeries later……..
Thank goodness I have a WONDERFUL ” quarter back” Dr. He lives 600 miles away . He TOTALLY GETS IT! I tried to switch to a pain clinic locally. Labeled a ” drug seeker” right off the bat! Yeah, after 18 surgeries and STILL the same pain I had from day one , never increased my level of pain meds yet I’m a drug seeker. ASSHOLE! I’ll just keep making my 600 mile trek thank you very much. I have NEVER taken more than prescribed, sometimes even less, my records are an open book. And you can all yourself a pain clinic? It’s a joke!
Anyway, thanks so much for this article. You spoke for so many of us…….
Yes!! I’m sick of hearing that it’s supposed to go away after menopause or total hysterectomy. LIES!!! It’s forever. Life-long. Perhaps they say that it goes away after menopause ONLY because they are ignoring those patients.
LOL yes!!!
Hi Rachel
What an incredible blog..I was with you word for word especially your description of the physical pain,take care! Shelly x
thanks for the positive comments you made. I began writing about endo after realizing how taboo it is to speak about it. I wanted to help our loved ones understand, just slightly, the way we feel. I hope all of you special sisters have a wonderful, pain-free day!
Rachel — Your story brought tears to my eyes. Although I do not have endometriosis, I have struggled most of my life with chronic Fatigue and depression. I found out that my thyroid levels (needed to test both Free T4 and Free T3) were low and when properly medicated things are some better. I also was very deficient in Vitamin D and was diagnosed with Fibromyalgia but after getting my Vitamin D levels to optimal the pain was lessened. I don’t know how much those things MIGHT help you but believe that even a tiny improvement would be helpful. I am reading these articles because I am the grandmother of one (or two teenagers) with endometriosis. The oldest one is pretty much flattened for at least half of every month so using the 3 month pill so usually down only 2 or 3 weeks per quarter — except when things go off track in between — So trying to deal with (to say the least)!! I wish better things for you!
Rachel my heart broke reading this because I feel awful for you. And because I said the exact same thing today. Thank you for being brave enough to admit this out loud.
i’m an endosister, and your story is almost exactly mine too… sending love, and many thanks for sharing
Rachel- this is so well written- gripping and so honest. I am so sorry to hear about the terrible pain you are experiencing. Reading your pieces has really educated me and created an awareness about endometriosis. Thank you so much for sharing. Stay strong!