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What Women With Endometriosis Want Others to Know

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Hello, friends. Did you know that 176 million women worldwide have endometriosis? 176 million. Think about the weight of that number for a second, let it sink in. These women are strong, brave and inspiring. Today, I wanted to put the spotlight on them. I want to share their voices. By doing so, I hope to bring further awareness and support for this terrible disease so we can better shape the paths of those who are newly diagnosed, and so we can better support the women who are struggling and battling this every day. When I first got diagnosed with endometriosis, it was something I had never even heard of before. And from the beginning I’ve shared my journey with you all. From struggling to get pregnanthaving my uterus removedhaving my ovaries removed and then dealing with the pain and disappointment when the surgeries didn’t resolve my pain.

One thing that has kept me going was the support groups of strong women fighting alongside me. I wanted them to answer one simple question: What is one thing you wish people knew about endometriosis? Below are their responses. These statements are honest, gritty and important to hear. So grab a cup of coffee or tea, and get ready to step into the shoes of a women living with endometriosis.

What Women With Endometriosis Want You to Know

“I’m not faking it, I’m not just being a baby, it’s not in my head and I need to be taken seriously.” – Lizzie

“It isn’t just ‘bad period cramps.’ We are tired all of the time from the pain we are constantly in. Because of the hormonal balance we [may struggle with] anxiety and depression. The tissue can be anywhere in our body, and cause problems with the organs it attaches itself to. Several women are claiming disability because it is impacting their lives that much. We struggle with natural conception. It can take years to diagnose. We have to have an invasive surgery to be correctly diagnosed. Doctors like to try several things before performing the surgery. There is no cure A hysterectomy will not make all our problems go away. This is an incurable chronic illness.” – Brittany

“Being told it’s normal and/or it’s all in your head kills your confidence, self-esteem. How it affects all aspects of your life – well-being, weight, mental health, social life, work and relationships. And that there’s no cure, effectively you can get lucky and go into remission after surgery but the risk is always there.” – Daniella

“It is so much more than ‘cramps’ and treatments don’t always help and can even make things worse.” – Beth

“How painful it is, how sometimes it’s not easy for me to keep plans or run out the house the second you need me and that it’s not a joke, I’m not just crazy making up this pain.” – Kayla

“We’re not faking, or crazy.” – Katie

“It exhausts you even when you’re having pain-free days.” – Teela

“It doesn’t just go away… Asking ‘are you better now’ doesn’t make us feel great… Also people who try to empathize because they may have had period pain… Again, makes you feel rubbish…” – Kerry

“It needs to be recognized as a disability!!! It has ruined my life and health mentally and physically to the point of not being able to work. I’m swimming in medical bills. I can not contribute financially and sometimes physically due to so much pain and health issues. I’ve had three surgeries in seven months and the hits keep coming.” – Courtney

“It’s not that I don’t want sex or don’t love you, it just so painful I want to die!!!” – Alicha

“It changes you as a person. I don’t even feel like the same person anymore.” – Jessica

“You’re not a flake, but you just can’t make plans! Chronic fatigue and digestion issues are hugely linked. Just because you look well on the outside does not mean you feel well on the inside!!!” – Olive

“I wish people could see that when I put on a brave face I am usually in a lot of discomfort still. I’ve learned to not mention it too much at work and sometimes you do feel like you’re battling alone. Doctors don’t listen and take far too long to diagnose. I know there’s more serious, life-threatening issues. I know only too well – my husband has cancer – but the suffering and wasted time in bad treatments is horrendous. This site shows how much we all [struggle], and silently.” – Joanne

“Tiredness, bloating, hormones, basically plays havoc with your entire body, painful sex, loss of sex drive, professionals not believing you, it never goes away even after a lap, the list can just go on and on. – Jo

“It makes it incredibly hard to conceive (well, it has in my case).” – Bonnie

“Women living with this disease have good days and bad days. Sometimes we are curled up in bed sobbing from the pain, sometimes not. On a good day it is easy for others to forget that this disease is debilitating on many levels. Because endo grows inside our reproductive organs there is great stigma around its actual existence and its diagnosis. Many women [struggle] in the dark alone. Women’s health matters.” – Julia

“We don’t know how we’re going to feel from one minute to the next. You could be happy and pain-free one minute and doubled up in excruciating pain the next, then pain-free again. It’s not consistent and this unknowing causes anxiety. Makes us worry and hard to plan things. It can also ruin special and important times. It can make us feel like hypochondriacs. I get period type pain for days after having sex and it’s often painful during. There have been times when I’ve not told my partner I’m in pain to not ruin it for them. Just pretend everything’s OK but in my head screaming for it to finish. So as not to hurt their feelings.” – Rebecca

“It’s so painful. I wish people understood just how bad it hurts and how it affects your overall health. I’m always so tired. I never have energy to do anything.” – Kimberly

“I’m not intentionally trying to let my family down, my illness is rough and physically and mentally exhausting. Endo isn’t cured by a hysterectomy. Endo can grow outside of the female area and basically anywhere in your body. Endo is painful and causes us to look very pregnant at times so stop asking if I’m pregnant. The pain during a flare-up is literally [debilitating] and feels as if my insides are going to fall out. I’m in real pain and not a hypochondriac. While getting a bath or shower is easy and a simple task for others, my illness makes it the most exhausting task. I might get a bath but by the time I get out and dry off I’m so [tired] out I need a nap or to rest and usually don’t do my makeup or dry my hair. Endometriosis, fibroid tumors, cysts as big as grapefruits and lemons, adhesions/scaring tissue is all painful and horrible to have to live with. If you know someone who has any of that please be nice because we are dealing with a lot.” – Stephanie

“Most days getting up and dressed is really hard. Pain and fatigue can vary but are always there. Doing simple tasks can be exhausting even when you look normal/fine. You don’t always appear to be trying when in fact this is all I am doing. A hysterectomy is not the answer to my problem like it was for your daughter, aunt, cousin, friend, neighbor, sister.” – Natalie

“No two days are the same… pain may be low one day and the following day swollen and in a lot of pain. It’s not made up – sadly this shit is real.” – Helen

“My wish is that doctors and consultants took us seriously. More needs to be done to educate doctors all about this awful disease so it’s diagnosed much much earlier and women no longer feel like a burden on the NHS or any medical boards across the world. Being told it’s all in your head or being fobbed off with other diagnoses just to give you something is wrong and it needs to end. There is so much I could write here about this but not enough room. I struggle to pick up the phone to make a doctor appointment now because I feel like I’m wasting the doctor’s precious time. It has had major consequences on my health and I for one would love for doctors to be trained properly in how to deal with ladies who have any problems with their periods. I had a small stroke which wasn’t diagnosed early because I was afraid to phone my doctor due to how I’ve been treated over the years. It took my husband to phone and take me to hospital before I got diagnosed and taken seriously. Most times I just get told, nothing we can do, it’s just your endo, you’ll just have to live with it. Or I get the look of she’s making all this up for attention. I’ve even been called an attention-seeker and time-waster by a consultant. These kind of things need to stop. It’s a disgrace it takes so long to diagnose whilst we continue to suffer so much. No patient should ever hear the words ‘it’s all in your head’ – it’s the worst thing to hear especially when you’re so vulnerable. Living in constant pain is so debilitating and the impact it has on your life is huge. Being told you’re making things up is absolutely soul-destroying and for some women it’s too much. How very sad we are not taken seriously by the one profession supposed to care and want to help us feel better. Sending us for counseling isn’t the cure, the problem was created by the endometriosis and the impact this has on our daily lives. Until there is a cure or something that can enable us to live without pain our mental mood will always [be affected]. We need to find a cure or at the very least find a treatment that will help women live as normal a life as possible. Explaining this disease is so very hard and people still believe it’s only painful periods and all women get them so why are we any different and why are we moaning or unable to work? Educate employers so we can have a much more sympathetic workplace and hopefully this would mean more of us would be able to maintain a job. So so hard to pinpoint one thing when we deal with so much. I just wish people knew more and finally we could get the treatment and respect we all deserve. We are all such strong women and therefore we deserve to be taken seriously.” – Suzanne

“I hate letting people down all the time and losing friends and family because of how this disease affects me. I know it’s not a life-threatening illness and there are people much much worse off than me in the world and I am so very grateful for what I have in my life and I do try to remain positive and I do help those less fortunate than myself but I just wish that sometimes I didn’t have to apologize for who I am and have to explain what’s wrong and justify my actions. I hate when people say to me they know someone who has it too but they are OK and why am I so different. This upsets me so much and I know they think I’m at it and just trying to get attention. Not being able to spend quality time with the people I love is the hardest thing ever, seeing how hard my husband works and how much pain he is in when I’m at my worst because he just wants to take it away for me. Seeing my daughter grow up knowing she has a sick Mum and that I’m different to other people’s mums is hard. Trying to hide it from her as much as possible but letting her down so much is a killer. Knowing she’s seen things she shouldn’t and that my illness has caused her so much heartache and that it has had an impact on her emotionally is wrong. This is not how things were supposed to be and I get so angry sometimes. This is the life I was given and I will continue to fight every day and I will remain as positive a person and role model for my daughter as I can be. I am grateful for what I have but sometimes I think I am entitled to a bit of self-pity and a good moan? Surely that’s allowed at times? After all I am only human.” – Suzanne

“A lot of people don’t believe that the pain is real. One of my friends would just come over and make me go out all the time. When I couldn’t move. My husband thinks making me walk and move will help. Sometimes it does and most it doesn’t. We know our limitations.” – Krysti

“Just because I look OK on the outside, doesn’t mean I’m OK on the inside. The pain ruins your life and steals your joy and this all goes on day by day, minute by minute without you even knowing. When you actually see my pain, is when things are extremely bad. It means I’m not able to be a mom to my kids, a wife to my husband, a friend or even feel like a human. I am trying to survive and I feel lost and hopeless.” – Brandi

“You feel it every single day and it never goes away.” – Kimberly

“More research should be done to find the cause. Only then a cure can be found. Now, there is no cure!!! The cure would mean better life quality and higher work efficiency for patients and less expenses for the health system due to many laparoscopic surgeries and IVF procedures.” – Irena

“How painful this condition actually is and just because we look well on the outside it doesn’t mean we are on the inside and the pain we go through every day just to complete work so you can pay the mortgage and the bills, clean up and make dinner when all you really want to do is sit down or go to bed. Be better if people would listen to us when we are trying to tell them how it really is living with this condition.” – Fay

“The very worst part to me is that it seams to be so invisible to everyone else. They do not realize the pain we go through because we are stronger than they think and can hold in the pain until we can’t handle it anymore. I’ve been looked down at many times by doctors for wanting relief from this pain.” – Samantha

“You can feel totally fine one minute or for one whole day and suddenly you are in a lot of pain.” – Yolanda

“We are just as frustrated by this disease and its impact on our lives as you are, if not more so. And we know you are trying to help when you offer suggestions on treatments, but you are really just devaluing what we are going through.” – Kristi

“It’s more than just period pain.” – Angela

“The symptoms are different from day to day, hour to hour and sometimes minute to minute. They come and go with no warning. It ruins lives.” – Samantha

“Pregnancy/ hysterectomy is not a cure. Pain flares can come from nowhere.  My doctor and I have worked on delivering me the lowest possible dose of pain meds to keep me functioning to an acceptable level… I do not need you or any other medical professional to imply I am a drug addict!” – Danielle

“It affects everyone differently. It can be debilitating for some.” – Amanda

Powerful, right? These women (including myself) are struggling, and we need you to help amplify our voices so that someday, diagnosis won’t take so long, and someday, women won’t have to struggle so often. Someday, we’ll beat this.

Originally published: March 29, 2018
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