I want to say I’m pretty proud, by some miracle I haven’t had a scary endo pain episode in a while. You know those episodes where the pain leaves you bedridden and you can’t move for hours, maybe even a whole day.. and all you’re doing is praying the pain stops while you’re hugging a heatpack, dosing on meds or sipping on ginger ale or sucking on peppermint. Basically anything to help..and yet still it’s the other life disturbing chronic issues I’ve been dealing with... so you can imagine the fear when any little bit of pain that feels like the beginning of an endo episode begins. It’s easy to find yourself crumbling, despite all the effort you’ve made to not do so from the last time you crumbled. But it does get pretty scary when your tummy looks and feels distended along with the slightest bit of pain that last longer then an instant. The fear of, will it pass, is it gonna get worst, do I breath and wait it out or run for the medicine? sometimes even after people always saying you’re so strong... sometimes it’s easier to just not be instead of fighting so hard to be strong. Sometimes crying until it feels better helps it even if for a second. In this next chapter in my life I know I should be moving forward, but the fear of walking thru the fire is always difficult. My daily considerations are far different from yours. How do you cope with endopain daily? #endowhat#endolife#endopain#endowarrior#endometriosis
Coffee my greatest enemy and friend. Haven't completely given up coffee but have significantly cut back my intake. What food or beverages are you struggling to give up that are triggers for your symptoms?
Having #endometriosis can be tremendously overwhelming. At times you feel like the disease has taken over your entire life. And sometimes it does. It’s so hard to get your mind off the pain, the exhaustion, all the doctors’ appointments and exams, all the drugs, all the hormones. It’s so hard to forget about how it affects your social life, your career, your relationships, your self love and even your sanity.
It’s so hard to put so many dreams on hold, or even aside, due to this underrated stupid disease.
It’s so hard to accept that you may probably live in pain for the rest of your days. To know that there’s no definitive cure.
It’s so hard to hear: endometriosis has returned, we have to cut you again.
It’s so hard to give up on the idea of having a baby and have your femininity taken away from you. When even giving up on motherhood and allow doctors to remove your reproductive system may not be the end of pain.
It’s so hard to put on a smile somedays. To pop on a opioid in the morning, go to work and pretend you’re OK even though your organs are literally bleeding.
This is not just my story. This is the story of millions of women around the world. This is the reality of Endometriosis.
People don’t understand how it affects you. How in so much physical and mental pain you somedays are. How there’s so much more behind our smiles.
Just because Endometriosis is not a visible illness, it doesn’t mean it hurts less than any other disease. Treat people with respect. Damn, treat ALL people with respect!
And to all my #endosisters : stay resilient, stay determined, stay a warrior! We’re going through hell and back everyday and we’re still fighting!
How incredibly strong is that?
I'm going to address something I get asked a lot. Have I had any success with symptom relief from hormones? Over the years I trusted my Doctors and took what was prescribed. I no longer do and refuse to take any other treatments other than the pill and I am still unhappy about that. I have been on the pill for most of the years since my period began and I have stage 4 Endometriosis. I suspect all it did was mask the symptoms for a time and taking it now it does not ease my symptoms at all. So for me, I cannot see that hormones taken in synthetic form has done anything to help my Endo besides stopping my period and subsequent pain which in any case is chronic now. When I get asked about this I don't say, don't take them. What I will say is do your research and make a decision based on whether you feel the possible benefits are worth potential side effects. Maybe like me you just want a break from being bed ridden every time you have a period on top of the now constant pain you live with.
To answer why I refuse other treatments?
In my early teens I had the depo injection and in my late teens i developed osteoporosis in my right hip. This is a known side effect of the injection. The most asked about is Lupron. No I am not on Lupron and nor will I ever have it again including the nasal spray Synarel. My issue is not even with the horrific side effects I had while on these treatments or that my symptoms worsened or even that I was uncomfortable with taking something that can only be taken for a short period because of issues like bone loss which I can no longer risk. My issue with this drug is the hidden clinical data that is under a federal court seal. The court case which highlighted fraudulent claims and perjury convinced me that this would never be an option for me in my treatment. I can't even believe that this was given to me when clearly they can't even produce new clinical trials contrary to the damaging ones that are hidden. Coming onto the market with little clinical or side effects follow up this is an easy choice for me. So have I found relief? No I have not but some have. You will need to decide for yourself, base it on your own research & gut feeling.
Gratitude, I have found, is central to fighting against the weariness + disappointments of prolonged suffering. I am so very grateful for my girlfriends. They offer community, encouragement, and willingness to enter into my suffering with me. Their daily, weekly + intermittent texts + calls mean everything. Sometimes they are checking on me, praying for me, listening to me, offering to pick up items for me from the grocery/take my pups to give them some fun/bringing meals/reaching out to contacts in potential surgery location (s)/expressing compassion + pride in my perserverance. I recognize how hard it can be to enter into another's suffering with them. It can be awkward. But your willingness to put your comfort to the side and say, 'im so sorry you are going through this', 'how can i help you this week?', 'how can i pray for you specifically?', 'i miss you' or 'i don't know what to say right now' means EVERYthing to me. I believe entering into others' suffering to be a concrete way to show God's love to others. THANK YOU to all of you who are in this with me. THANK YOU for laughing + crying with me. When I am well I am very social + suffering has taken that from me in most, but not all ways. *If you are ever wondering if or how to support a suffering friend or family member send a simple text or call and let them know you are thinking of them.* It will mean SO VERY much (even if it's hard fir them to express). Maybe they have never heard 'I am proud of you', 'I am praying for you' or 'How can I help you' before. You can give them that gift. You have the power to uplift others during difficult times. 📷 #greybruce with a fresh shavery that has him looking like the seeetest babe. ps he is capable of soul penetrating eye contact but is purposefully ignoring me bc he is irritated by cameras 😉
Endometriosis occurs when cells similar to those that line uterus (endometrium) are found outside the uterus. These cells can attach to other organs + walls of the pelvis, abdomen and chest. In rare cases endometriosis is found in the brain. Endometriosis swells and bleeds similarly to what occurs in healthy menstruation. But there is no where for this blood to go. This causes significant pain, inflammation, scar tissue formation and a long list of physical symptoms. In response to this #abnormalbleeding I have experienced my intestines shut down (blood in the abdominal cavity is not normal, intestines are sensitive + complex and respond negatively to the presence of blood). Endometriosis can be very aggressive and erode the tissue it is attached to (such as the bowel wall). 📸#mosesbruce . Because dog pics are life. And this #snugglepup has taught me lots about not letting suffering steal my joy 🖤
I've spent my life in and out of hospitals and doctors offices-fought 12 years for a diagnosis. I've watched addiction tear my family apart and lead to suicide. We have all had our battles, some of us harder than others- but as long as we never give up the day will come when it all makes sense and we can finally heal and release. For the first time in my life I am finally in control of my happiness. My diseases and pain are no longer in control, I have come to healthy terms with my father's suicide, and I am more mentally strong than I ever have been. I am grateful for every trial and tribulation that has been handed to me because they have helped me to grow and evolve into the strong woman I am today. The hysterectomy was a hard decision to make, but it has changed me- it has helped me grow and blossom-same with the pacemaker for my bladder. I have been praying for a sense of peace, a rebirth- for so long, and I'm so thankful it's my time. 🎗️❤️🙏 #endowarrior#adenomyosis#hysterectomy#endowhat#urinaryretention#interstim#iam1in10#chronicallyill#chronicallygrateful#mentalhealth#growthmindset#endoeducation#hystersister#personalgrowth
Endo speak: So I'm going to talk about poop, you know that thing you like to do in private and although you have an irrational fear of pooping when anyone is even 2 rooms away you are now comfortable to talk about it because now it's public enemy number 2 (ha ha totally unintended pun) behind endo pain in general. When you suffer severe bowel symptoms you carry with you constant anxiety. I have had intestinal pains on public transport and let me tell you that draws more attention then the new shoes on your feet. You gotta curl into a ball and sometimes you need to be sick from the pain. This gives you anxiety about traveling. There's also the anxiety of having a bowel movement at all. Imagine giving birth to swords and you can relate to the pain it can cause. Then you have anxiety over food. My bowel symptoms are strong, should I eat today? I don't feel like I should eat. I'm scared to eat. I just ended up in hospital because for me a week without a BM is "normal" there's always concern of obstruction so you hope you can go soon. With help you go soon then you don't stop going. You have literally gone more times in a day then you have in a month and if you have to sit on the loo one more time you will have no hair left to pull out. Your stomach aches, you're dehydrated. You guess that you have said a hasty goodbye to your vitamins but don't want to take them again but if you don't eat and you don't take them how you going to get your vitamins to help with the the other symptoms? Can you take your pain meds now? Will they be absorbed fast enough? You're hungry but to anxious to eat so you'll have a juice. Juice is good. While you're drinking your juice you're trying not to be anxious and wondering why more people don't talk about poop and endo. It's not just the pelvic pain that is debilitating it's also all the pain and fears associated with the process of the poop. So you are going to talk about it because this is what endo means for some and there's not enough talk about how debilitating all the symptoms can be.
Today’s drawing is a bit down and dirty, but it got done. I’ve been in extreme endometrial pain today. Honestly, I tried to work out, and the activity sent my abdomen into a fit of cramps and seizures. I lost my lunch, and im still being bombarded with waves of pain like flames. The image of endometriosis is a pair of yellow boxing gloves. Today has really drained my energy, and I came pretty close to not going to an event tonight that I really enjoy. But I’m so tired of my life being ruled by this. I’m paying for it now, but I’m not about to let it get the best of my inktober. It’s definitely not a masterpiece.. but I drew. I’m not letting this win. #endometriosis#endoawareness#endo#endowhat#inktober2017#boxinggloves#endochampion#endowarrior#fightendo#dontgiveup#brushpen#vent#sarahannendo
Y'all- I am officially 12 weeks post op total hysterectomy for Adenomyosis and Endometriosis excision. I am definitely having hormone changes, fatigue, as well as some tugging at my incision sights due to healing. All in all- I feel like a completely different person-pain wise. I still have a long road ahead of me with healing but I will be forever grateful for Dr. Douso and his surgical staff for giving me joy to live again. 🎗️❤️ #endowarrior#adenomyosis#endowhat#endoeducation#iam1in10#hysterectomyrecovery#hystersister#chronicallyill
We are just doing it. Thank you to those who reached out these last couple of days when I have been feeling so poorly but also thank you to all the endo sisters out there doing the damn things. Such fight in these words. I don't mean force yourself to get up during a flare because only someone who doesn't suffer would suggest such a thing but this is for all the one foot in front of the other days. This is for all the times you left a medical appointment dejected but came back for the next one. This is for all the times you have spent in the fetal position questioning your future. This is for all those days you put a smile on and said "your good thanks" We cry and we curse but somehow we keep fighting every day.
So as much as I tell myself on an ER trip "never again" the reality is occasionally it is unavoidable. Luckily I only had to spend a night there but I am still recovering from the aftermath today. Dealing with this disease chronically is challenge enough. I think people are beginning to understand the pain we go through but it's not just psychical. The intrusive questions and exams also take a mental toll. The fact that you are even in a hospital for symptom complications is emotionally exhausting. You have a diagnosis, you have your medications yet here you are again. I explained in a previous post that I am trying to help ease symptoms with dietary changes but they are not working well enough for me right now to avoid ending up where I did. It's a blow but I will keep on trying because that's all I can do at this point. Just let it be known that those people that want to try and shame those of us that are not responding to their way of dealing with this disease with their protestations that a holistic life or their God healed them can back off. I myself share tips where diet is concerned but in NO WAY do I promote that it is the way to cure you. It's a free world so people can follow whatever path they want to but just keep in mind you have NO IDEA where people are at with their disease. I have an implant kinking my small intestine and until the disease is removed there is only so much I can do to try to avoid the complications that brings me. I support all of my sisters in which ever ways they decide to fight but I will not tolerate any shamers ✌🏼️