Lauren's Endometriosis Recovery

Hey, I'm Lauren. I'm 32 years old, and was just recently diagnosed with stage IV Endometriosis on January 25, 2019. I've suffered with symptoms of this disease likely my entire life, with most of the pain and gut issues becoming more noticeable at the onset of puberty. If you don't know anything or much about this condition I'll provide some info, because it's ridiculously common these days but no one talks about it. I hope I can help change that by sharing my story. Thank you for being here and supporting my journey living with Endometriosis (aka: "Endo"). . . . Endometriosis is defined by the medical community as a common gynologically- based condition in which cells similar to, but not identical to, the lining of the uterus (aka: endometrium) grow outside of the uterus. Each month, hormonal stimulation causes endometrium in the uterus to thicken and shed if there's no fertilized egg present (aka: menstruation). The misplaced endometrial-like tissue growing outside the uterus responds similarly, but there's nowhere for the tissue to exit the body. There is no known cause, though there are a few theories, and no known cure, though the best option as of this year is to have a high risk, highly invasive surgery where the specialist basically cuts the endometriosis tissue out of your organs as if it were a tumor. Symptoms include but are not limited to abdominal pain, gut/GI pain, bladder pain, indigestion, inflammation, cramping, nausea, vomiting, painful sex, painful periods, infertility, ovarian cysts, etc etc, the list goes on. . . . So my story starts off like most: painful periods, accompanied by constant, undiagnosed gut issues during my early teens. The abdominal pain got progressively worse over the years on and off my cycle, causing me to seek pain relief from heating pads and OTC meds. I started getting migraines in high school around the same time the abdominal pain was getting worse than it had previously been. I saw my first gyn at 16 after missing days of school because of the pain, and started what would be a long 5 years on 4 different types of birth control pills. For the firsf few years on medication, the pain (along with my cycles) was sporadic and still bad enough at times that I'd need prescription pain meds or muscle relaxers (the side effects of the BC sucked, but that was better than the more frequent pain without it). I was thrilled when I finally got prescribed narcotics for the first time when I turned 18 - FINALLY something that worked. But not for long, and not without it's own set of side effects (...notice the trend with meds here?). I came off all hormonal treatment after getting such bad nausea and stomach upset that I couldn't take it any longer. After refusing any more hormonal meds I decided I would just stick with the strong pain meds and this was just my fate. . . . Fast forward through 10 years of worsening symptoms, I found myself experiencing more frequent deep, abdominal and gut pain in the fall of 2017. Between 2007 and 2017, after what felt like getting no answers from doctors and failed treatments, I was lead to believe that my pain was nothing out of the ordinary, that it was totally normal for some women. I was given only 1 way to manage it: drugs. This was my fate, or so it felt. What a great way to live (said no one ever). Well after about 6 months of pain, I ended up in the ER in Feburary of 2018 with excruciating abdominal pain that I couldn't soothe with even the strongest pain meds. Diagnosis: GAS. I cried. 4 months later, I'm back. Same symptoms, this time I can hardly walk... worst pain of my life. Diagnosis: ruptured ovarian cyst, with additional bilateral ovarian cysts (one of which was later diagnosed and confirmed as an endometrioma, which is a type specifically caused by endometriosis). I cried again. By this time I knew what it was...I knew in my heart I had endometriosis. . . . After 5 or 6 referrals and about 6 months time, I finally found a GYN who I felt comfortable with, knew *enough* (at the time we met, I was desperate for help and knew I needed surgery asap after researching and just being so miserable) about endo in my opinion, and who listened to me (yes Jesus!). By this time I'd had 3 additional ER visits for ruptured cysts and associated pain. We agreed that I needed surgery, and we scheduled it. The surgery went well and I got the answer I'd been searching for years to find. It was finally confirmed: Endometriosis. My procedure ended up going slightly differently than planned, but I didn't lose any organs other than my appendix, which is normal for endo patients (& there was disease present on the organ #kbye). Doctor "cleaned" me up, stitched me up, and prepared to start me on hormonal intervention post op. Success! (Not so much, actually.) . . . As beneficial as my first surgery was, it isn't enough to make a dent in this disease. My post op recovery has been the hardest thing I've been through physically in my entire life... I'm in pain and I'm nauseated every day, and that's just the tip of the iceberg. See from what I've come to experience and find is that this disease requires a multidisciplinary approach. Endometriosis isn't just a female reproductive disease... it's been found in MEN and INFANTS. It's rare, but it's been there. When disease starts to attack the bladder, colon, intestines, lungs, appendix, diaphragm, etc in addition to reproductive organs, that's a huge red flag that an OBGYN may not be as well equipped to treat us as we'd hoped. It takes a true team of specialists. Which leads me to the present: I'm in the process of getting to a local Endometriosis specialist here in Atlanta. (We have 2 of the top 20 in the world in Atlanta - YAY!) . . . So now you know most of my story. I left out a lot, because, if I'm honest, it's a lot of sad and just really unhappy stuff - so I'll save it for those who want to know the raw, ugly truth of endo in a more personal setting. If you've read this far, you're awesome and I can't thank you enough for your support. That said, I need some help... With the severity of my lingering endo & post op symptoms, my declined mental/emotional state, and living alone, I find it difficult to manage through daily tasks. I don't feel awful every day, but the fatigue can be so intense that even just getting out of bed to brush teeth and shower has tired me. I've tried going back to work slowly easing back in but I'm still not at a point that I can work consistently (I've had maybe 1 good week since surgery). I can't even manage to work up the appetite to eat more than one meal a day sometimes, so even work days are hard when I'm feeling not so bad. I'm doing a lot behind the scenes to help with symptom relief but until this disease gets cut out there's only so much these other therapies can do. Nothing will stop the progression of the disease, and until I can get this next surgery, I'm pretty much stuck where I'm at. This is where I'm left to surrender and let God provide. . . . The purpose of this account is to collect donations that will go directly to treatments, medications, surgery, food and living expenses for myself. I have no idea how much assistance I may need but seeing as my parents have given me as much as they possibly can and it's still not enough, I came up with a suggested number to get started. If you can't donate you can share this account, share my story, pray, send good vibes, think positive thoughts, or anything you can think of that could help me during this time. I feel guilty asking for help, but I need it and don't know of many other options. Thank you for being here and being part of my story. I love y'all so much, you keep me going! I can't do this without y'all. Please reach out to me with any questions, I'm an open book about this so don't hesitate. . . . God bless you all, and thank you to those who donate or help in any way! Love, Lauren