#er - i still have bad cramps at times but the specific pain that sent me to the dr is gone

[theemperorsfeather]

ETA: A really regrettable number of transphobes have got hold of this, and are using it to spread transphobic shit, so, a) to anyone coming to this who isn't a hateful person, be aware of that and b) that's why reblogs are turned off.

According to The Guardian, there is a growing medical consensus supporting the idea that there are three different types of endometriosis, which up until recently had all been treated the same. Though all forms of endometriosis involve tissue similar to that found inside uterine walls growing in other parts of the body, this “errant tissue,” as doctors call it, is not always the primary cause of the pain they experience.

For those with the type of endometriosis that causes painful ovarian cysts, surgery is often the best option. However, new research has found that 80 percent of those who suffer from the disease actually have the superficial form—known as peritoneal endometriosis—and their pain is caused by the ways that nerve endings interact with the tissue, rather than the tissue itself.

Because surgery involves doctors slicing through nerve endings in order to cut out that tissue, it’s likely to cause patients more pain in the long run. Often, doctors attempt these surgeries multiple times.

Scientists have known about the different categories of endometriosis for a decade, but they have only received funding for further research in the past five years. And it is only recently that endometriosis has been taken more seriously: Historically, many doctors have not believed patients who report their pain, despite nearly 40 percent of people with endometriosis reporting pain so severe it has resulted in an emergency room visit, according to a 2020 U.K. study...

#psa trans women are women trans men are men and terfs suck - fuck off and go make your own post #wow #health #medicine #endometriosis #i just. #...... #i had several hours of surgery for endo in 2007 and - crossing fingers - i have no recurrence of pain #er - i still have bad cramps at times but the specific pain that sent me to the dr is gone #lost an ovary; it was 'glued' to other organs by cysts and etc #surgeon also used a somewhat uncommon technique that supposedly caused less tissue damage but #i thikn it's going to take me a while for me to figure out what i'm even feeling about this #like #i knew the medical industry was/is shit wrt this genre of health problem #but it is always somehow WORSE than i even imagined #and there's nothing i can just go BURN THE FUCK DOWN to fix it :)

[theycallmetubeless]

001. (b)

Since its been so long since my original endo post, I decided to start over. And to start from the beginning. So here it goes.. 

Age 11 : Seventh grade.

Starting middle school was exciting for me. I was homeschooled through sixth grade, so it was nice to go back to school with my friends. Despite my excitement, my body was slowly figuring out other plans. I would go home early weekly for nausea, stomach pain, headaches – all generally unexplained. Me and the school nurse got pretty close. I’d go to her office and she would pretty much ask me, “Advil? Or do you just want to go home?” You could tell she was skeptical but, I looked miserable, kinda hard to argue with it. Teachers would get frustrating with my sleeping in class, but it wasn’t out of disobedience, it was merely out of necessity. And they could only argue with my grades so much because I was doing so well. None of this drew many red flags, just assumed to be a preteen on her way into puberty.

 Age 13 : Summer pre high school

Good old mother nature decided to bless me on the wonderful summer when I was on my way to high school. From my first cycle, the pain was terrible. But that’s what you’d expect right? Bleeding from the inside out, all you ever heard was about how cramps sucked and methods to manage them. So I managed. I started high school at a vocational high school where you graduate certified in a trade. I was going for Cosmetology, and we had to go through an interview process before being accepted into a trade. During my interview I was questioned on my attendance record.. At a vocational school attendance is less lenient than public school due to the fact that each certification program requires a specific amount of hours. I had missed almost double the amount of days allowed. Despite my 4.0 GPA, my health had started to take a toll on my life path. I knew I couldn’t promise to miss less days, because with my body was starting to show me it wasn’t set up that way. So by the end of Freshman year, my health had pushed me to transfer to a public school despite my goals.

Age 14 : Summer pre sophomore year.

I managed to convince my mom to make me an appointment with her GYN because this pain was not going away, and the irregularity had moved towards being regulated 0% … The GYN summed it up to dysmenorrhea (bad cramps) and sent me away with birth control and advice on how Advil and heating pads can be helpful.

Age 14 – 16 : Sophomore & junior year.

Throughout this time I went through multiple birth controls, none helping the pain. I had moved from Advil to prescription strength Naproxen three times daily. And I had to pay attention to when my cycle would come because I would have to start my pain medicine 3 days prior, because if I waited until it actually started, the pain would already be too far gone and I would get no relief. I got switched to Seasonique birth control because my GYN decided since we couldn’t stop the pain, we’d just have me get the worst of it as little as possible. In addition to the ever so painful lady blessings, I began to be greeted with daily nausea, irritable bowel, daily pain, weight gain, severe fatigue. I could not understand why this was so awful, but it got swept under the lovely diagnosis of Dysmenorrhea. Since its impossible to know what other women’s cramps feels like, its hard to tell what’s normal and what isn’t. Both years I always used the maximum amount of sick days allowed by the state, my junior year I actually had to appeal my classes because I had missed more than the maximum amount..

Age 17 : Senior year.

Less than a month into my senior year I ended up in the ER because I was unable to eat without excruciating pain for two days. Even drinking was borderline unbearable. I spent the day getting scans, and tests. The ER docs summed it up to acid reflux, and sent me home with some type of gerd medication. When I continued to follow up with a GI doc – all his testing concluded “chronic constipation” I was just full of shit. That was my problem. So I started getting treated for that and again, brushed under the rug. I managed to graduate, again, missing the maximum amount of sick days. I had lost most of my friends because I was miserable from feeling so awful all the time, many didn’t believe me. I was 45 pounds heavier than when I started freshman year. But as usual, nothing medically was wrong with me. 

Age 18 – 19 : Post graduation.

I started beauty school just as I turned 18, and was beyond excited. The program was based on hours, and quickly I realized how my health was going to play a part in this new journey. I was still battling this horrible pain, and many other symptoms, and trying to live a normal “full time” life. What 18 year old wouldn’t expect to be able to do such? It took me an extra month to graduate because of how much time I had missed. And with another year going by and my pain not changing I finally made a new appointment with my GYN. I was a week past 19, and I was sick and tired of being sick and tired. I went into this appointment with a mission and that was for someone to finally listen to me. I explained my continued symptoms of pain, fatigue, nausea, constant weight fluctuation. But this time, I had a new symptom to lay out to her, one that I knew for a fact was abnormal.. I had met a boy after graduation and while getting into a serious (teenage) relationship with him I became sexually active for the first time in my life. They tell you it’ll hurt the first few times, ya know, getting used to it or whatever they want to call it. But this pain was not a soreness, it was stabbing. In my low pelvic region and lower abdomen. I was unable to have sex without severe pain during, and then hours of stabbing pain afterwards. Curled up in a ball, unable to move pain.. My GYN finally decided to look at everything again. By the end of that visit, I was told to take my birth control continuously (no placebo pills) and I was given a 3 month follow up, and I was given a word that could potentially explain all my suffering : ENDOMETRIOSIS.

December, I went back for my follow up. The pain had not changed, or subsided. Next step was to officially get my diagnosis, in order to do that, I got scheduled for surgery in February. That surgery gave me an answer to why I felt so terrible, and it hushed part of my mind that was starting to believe I really was imagining it all to be worse. So endometriosis treatment began. Now, this treatment isn’t curing, its not guaranteed to help, and it can come along with its own lovely rap sheet of side effects – but its goal was to manage the endometriosis hoping it wouldn’t get worse. Though relieved I got a diagnosis, treatment began and I started to wonder if it was any better. I was put through a medically induced menopause. Then put on hormone medication to ensure I wouldn’t get osteoporosis at the age of 19.. At that time you could only be on the medication for 6 months at a time. So I was in menopause for six months, and then put on a high dose of birth control, no placebos, so ensure my time of the month, wouldn’t show up.

Age 20: June.

I had been through my endo treatment for just over a year now. While on my family vacation in North Carolina, I ended up at the medical aid unit because I thought I was having bad UTI symptoms. The MAU found blood in my urine, but no trace of infection. At this point, they started to worry and question me about pregnancy. I said “if its not a UTI, its just my Endometriosis” – they looked at me like that was such foreign word. And insisted I couldn’t leave until they had a negative pregnancy test, because they thought I was having an atopic pregnancy due to the blood and the severity of my pain. Once the test was negative, they reluctantly let me leave, and advised if anything got any worse I was to go to the hospital on the island. Instead I just slept for almost 24 hours. I spent an entire day of my vacation sleeping because it was the only way the pain wasn’t bothering me. Once back home I had a new appointment with my GYN, she suggested we redo the treatment we did before, but I refused. It obviously hadn’t worked the first go around, so why try again? She had nothing else for me and finally referred me to an endometriosis specialist.

Age 20 : late summer.

After seeing the specialist, I was put back into menopause and on hormones, and I was on track for my first excision surgery. In November I had my first surgery. Waking up I felt relieved, despite being in pain from surgery some of it had subsided. I thought finally, some light at the end of this long ass tunnel. My Dr explained that my endometriosis was type 1. Type doesn’t determine severity, just how it acts. Mine acts like saran wrap and sticks all my organs together, and then to the sides of my abdominal cavity. It can be one of the most painful types. I really thought after this surgery I would be free. But… then insurance decided I could only be in menopause for 6 months on this medicine, then I had to come off.. I eventually had to go through the actual company that made my injections to get assistance. That lasted for 1 year. By this point, my endo had caused me to step out of being a hairdresser because physically I was unable. I couldn’t stand that long with my abdominal pain, and just the chronic fatigue was enough. My body was unreliable, and you cant have a career as a hairdresser under those circumstances. So I stumbled through retail, constantly being late because I overslept for shifts, being exhausted, and just plain old being in pain..

Age 22: Spring.

My financial support for my injections had ran out, my dad had passed away, my insurance had changed, and I ended up off all of my medication, no hormones, no birth control. My last dose was at the end of April. By the beginning of July I knew everything was coming back with a vengeance. All of my symptoms returned and continued to worsen as time went on. 

Age 23 : Fall.

I got a job working in a doctors office as medical assistant, it just so happened to be my primary care office. When I got hired, I didn’t realize how lucky this opportunity was for me, and for my health. Severe unexplained abdominal pain landed me a nice overnight trip to the ER. I was given pain meds, scanned, and left with a diagnosis of “an unexplained muscle issue.” Luckily that didn’t come back. But it came with more scans showing cysts on my liver and kidney which could have potentially caused the problem, or not.. and whatever caused them? Who knows. By December I was back in my specialist’s office, starting back on new hormones, and on my way to surgery #2. This menopause inducing hormone was different, a nasal spray. It caused severe headaches, metal taste in my mouth and throat all day. It was awful. Eventually we got my old menopause hormone injections approved. 1 month after restarting that, I got scheduled for surgery. March 3rd, 2017. My second endometriosis surgery, this one also included removing both of my fallopian tubes (this can reduce risk of cancer in women with endometriosis). Again I left feeling the same as I did the first time. And at my post-op it was explained that it had come back almost just as bad. I needed to stay in medical menopause until I wanted to try and become pregnant using IVF therapy..

Age 23 : Post surgery to current.

My pain and symptoms never fully stopped no matter what treatment I was in. I had developed constant body aches, muscle fatigue. My abdomen is still filled with scar tissue and organs that will never sit right where they’re supposed to be ever again.. My boss (also my primary care doctor) decided to start taking my pain treatment into her own hands since my Endometriosis specialist had pretty much thrown her hands up in surrender when I insisted I was still in so much pain. I had loads of blood work done to check every level in my body – all functions fine. I was a Urologist-Gynecologist, he insisted my endo caused no lasting damage to my urinary system. I got put on medication for nerve pain, was given a 10 pill supply of Percocets for the days when my normal meds weren’t enough. Medication for bowel spasms from all my intestines still being mildly stuck together. Finally – my boss and I realized there was no way Endo was the only thing I was dealing with. My chronic fatigue was very abnormal, and I have had episodes of nodding off while driving since I was 17 (but my fatigue used to be summed up just to my Endo). I was referred to a sleep specialist. One sleep study later, and I’m on my way to number two. My sleep specialist diagnosed me with narcolepsy. Unfortunately due to certain meds I was on, the test could only conclusively prove severe Hypersomnia, within dangerous range. I fall asleep in under 40 seconds.. it takes the average human between 3 and 7 minutes to fall asleep…

So now, I’m in a struggle. I’m titrating off of my antidepressants, and my nerve pain medication so that I can retake the sleep study and get my actual diagnosis. I’ve started meds, and yet I’m still managing to fall asleep all the time: nod while driving, sleep through everything, fall asleep at work. I’m lucky that I have an understanding boss or else I would be jobless.

I’m 3 days away from being 24 and I have a disability, a chronic illness, pain PTSD, and chronic depression from constantly having to battle my own body. When I got my diagnosis at 17, I thought I was on my way to normalcy. I had no idea…

I’m currently at the point where my health has taken away dreams from me, my time, my energy, my money, my friends – and so much more. And the reality of it is, I’m still just getting started in the diagnosis process. Once the sleep specialist has me stabilized, I can finally move to a Rheumatologist to figure out my muscle issues. That could land in a muscle biopsy, more scans, more bloodwork, more waiting. I was in nursing school, and I’ve now had to take off two semesters because I physically cannot go to school and work. I cant even manage to stay at work all 40 hours a week. I get sent home weekly due to my symptoms being too much for me to handle. I’ve gotten harassed by coworkers because when your illness/disability are invisible, if someone doesn’t understand from a personal level, then it all looks fake, exaggerated, whatever.

That’s a rough background on the last 12 years of my diagnosis journey, that is still no where near over. I want to be able to use this as a log, an outlet, and possibly inspiration for other to listen to their body and fight for it. You know how you feel, you know when something is wrong and when no one else will stand up for you, you MUST be your own advocate. It took me yelling at my doctor at 19 for her to finally take my pain seriously. She knew my symptoms for years, and brushed it under the rug, didn’t think to look for other reasons.

To my fellow spoonies, always remember, we’re not alone. You’ve gotten this far, you know you have the strength to move forward despite feeling every possible negative emotion.

#spoonie #endometriosis #narcolepsy #chronic illness #living with mental illness #living with disability #pain ptsd #fuck big pharma #healthcare is not a business #only human