My Endo Story

This (endometriosis) is what has kept me so absent from this blog. It is time I talk about it in-depth. I am creating a fundraiser to help pay for my treatment. Please read, share, and donate if you can, especially if you want to see this blog get going again. Your support will help greatly in making that happen. Thank you so much.

I have been experiencing 10+ symptoms of endometriosis since my first period at age 11 but have had these problems constantly shrugged off. Often the responses would be “periods are just naturally painful,” “these are regular girl problems,” etc. For this, I was often put on birth control but found it unhelpful. The Ortho Evra patch worsened my acne to extremes to the point where I have scars all over my face despite being careful to never touch my face with my hands, let alone scratch or pick. I often bled on pillows at night because the acne was so bad. In 2017, I was prescribed pure estradiol to combat hot flashes and lactation, but it seemed to just worsen my problems.

 

At 17, I had a full PTSD break when repressed memories that I had long been only somewhat aware of (but were silenced by non-professionals and medical and psychiatric professionals in childhood) brutally resurfaced. Because of this, many of my symptoms have been blamed on PTSD. I am aware there are definitely crossovers, but not all of my symptoms can be only PTSD related.

 

I have begged for a laparoscopy for at least three years, as I have been concerned about endometriosis. I had a tubal ligation at 21 because I knew with my hormonal problems (and the other problems they told me I had but never quite matched up), a pregnancy would send me totally over the edge and thought naively that perhaps maybe a tubal would help manage some of these problems as well.

In 2016, I was vomiting and having other what doctors thought were GI related problems. I had inflamed organs which further supported a Chron’s or IBS hypothesis. Changing my diet did nothing, neither did the medication they gave me to try and manage or reduce my nausea or pain. These medications have been prescribed even recently and include Pepsid, Phenergan, and Zofran. I was also given antibiotics, including Cipro, but the problems continued for weeks after, but then seemed to calm down. I – nor did any medical professional – ever think it was associated with gynecological issues, although by 2017, I eventually found all my symptoms consistent with endometriosis through thorough personal research. Even with endometriosis as a differential diagnosis (when given no official diagnosis but “chronic female abdominal pain” to begin with), I have been continuously unheard.

 

Still asking for the laparoscopy, I was finally given two options for my listed (and some additional) gyn problems in November of 2016: endometrial ablation (as I knew an ablation could potentially help prevent future periods which caused problems for me) or nothing at all.
Despite knowing endometrial ablation could worsen endometriosis, the recurring trauma and pain of my ten-day long periods led me to choosing the ablation.

 

Since August 2017, I have been in increasingly more pain than I ever have been in my life. In October 2017, I had a total maximum of four bowel movements in the entire month, independent of medicine, (as I was not taking medicine at the time that had constipation as a side effect), and continued despite taking laxatives like senna and milk of magnesia. Other days, even when I was on the hydrocodone months later, I would have 5 – 10 bowel movements in one day. My GI is still irregular like that, although now I am more generally constipated due to the medication I am on now.

 

I have frequented the ER and by January, I was vomiting all the time because the pain was so bad. They have ruled out pretty much everything, (including undergoing a colonoscopy and endoscopy), but will still not grant me a laparoscopy. Now they won’t grant me a laparoscopy because they say with the recent development of Myofascial Pain Syndrome, my body won’t be able to take withstand the pain of the laparoscopic surgery. The pelvic pain specialist who diagnosed that recommended I do yoga to manage the pain but at that time, (1 March, 2018), I could not even walk decently.

 

I have now had CT scans and ultrasounds showing both uterine fibroids and cysts. My first recorded ovarian cyst was in an ultrasound during an ER visit on November of 2017. A uterine fibroid showed up in an ER ultrasound on 18 March. My heartrate had jumped from a regular of about 50 – 60 to never once going below 80 because of how bad my pain was every day. (No heart problems.) When I last went into the ER for abdominal pain, it was 128. With heavy medication, it is now about 60 – 70 when I am doing okay.

 

I attempted suicide on 3 April, 2018 because the pain increased to the point at which I was vomiting constantly – hourly or during many days, actually more frequently, totally independent of intake. Because of the constant vomiting, I had developed reflux symptoms when I had literally never before in my life experienced heartburn. (Stomach acid yes, but not exactly heartburn.) The pain had completely destroyed my quality of life. I was no longer able to walk normally, sleep for more than a few hours before waking up from pain (even with 10mg of melatonin), or focus on or follow anything, even television shows I love and have seen before.  I have dozens of hobbies and passions and have been unable to work on them for almost a year. My relationships have suffered greatly due to this pain, and I was convinced I was a burden to everyone and felt my pain would never get better. To me, committing suicide was an act of compassion towards everyone, including myself.

 

I had called a law firm on 2 April to find information on suing my OBGYN for repeated failure to diagnose and do the surgery so that I could financially cover a lap and excision on my own, but the representative I talked to was less than sympathetic, correcting my pronunciation of the word “laparoscopy” every time I would say it, (I always read the word and it had only been brought up by doctors in opposition to my request for one), and dismissing me completely. I recognize now I would need an official diagnosis to make a case, despite having practically every symptom in the book. At that point, not seeing any reason to live (including no future to live for), I attempted suicide at 4 AM on April 3. I made sure not to have opiates in my system, as hydrocodone was the only thing that reduced my pain at all, so I chose to take only the medications I had been prescribed that did absolutely nothing to help my condition. Most were muscle relaxants but no opiates. Even though hydrocodone helped reduce my pain, I had always made sure to take less than prescribed as I knew the risks and how it would become ineffective and in fact counterproductive in long-term use.

 

When in the hospital, they put me on Suboxone with the promises that it was the safest opioid, least addictive, and was extremely effective in chronic pain management. They put me on so much a day that I was getting sick from side effects, itching like crazy, severe constipation (which I never had from hydrocodone as I took it about once a day, if that), and a horrible feeling that I can only relate to in terms of severe dissociation, as it made coordination and physical awareness difficult. However, despite all of these horrible side effects, it did seem to reduce the pain, even when they reduced the dosage at my request.

 

I was discharged on 7 April after being medically signed off and signed off by the psychiatrist who prescribed the Suboxone. No pharmacy had it however and the psychiatrist had written the wrong DEA number on the Rx. We managed to get the psychiatrist to call the pharmacy and finally on Thursday, 12 April, they had filled the Rx. I was not intending to get it, as even though they warned I’d experience a horrible opiate withdrawal the night of discharge if I didn’t take it, I never actually manifested withdrawal symptoms and my pain seemed to be gone. However, on 9 April, after going to my physical therapy evaluation, (I could not afford anything beyond an evaluation as I have Medicaid and it only pays for the eval), I started having the abdominal pain again. The physical therapist used a Tens machine on me even though I had told her previous experience with it had worsened my pain. She told me I might’ve not been using it correctly and that it was still a beneficial treatment for patients who had reported similar pain symptoms. I trusted her then, and after initial pain, the symptoms came back hours later, although not nearly as severe as they were. Still, they started worsening from the day on, so I decided to take the Suboxone that was successfully filled on Thursday because again, I felt I had no other choice. A) Take the Suboxone or B) go back to the severe pain and debilitation that triggered my absolute hopelessness.

 

They had prescribed 4mg 2x/day, (two 2mg strips consecutively 2x/day), but I only take the Suboxone 2mg (1 strip) once a day, if that. Having gotten the Rx filled on 12 April, I now have one 2mg strip left..

 

I know now however that there is hope because I will get the excision surgery even if I have to crowdfund or write to companies for help. There is hope because there has to be hope. I don’t want to die. I want to live, but I want to be productive and energetic, and I need proper treatment – like excision surgery – to start the process to doing that. I have a strong support network that consists of my boyfriend, my cats, and some online friends. I have love in my life that is unparalleled and don’t want a broken system – or myself – to destroy that. I will do what I need to do to recover. My body itself is not the enemy, and I am done believing that it is.

 

MY ENDO SYMPTOMS IN…

 

…the past six months: Abdominal pain, vaginal pain (random spasms and also sometimes when touched), ovarian cysts, uterine fibroids, nausea, vomiting after nearly everything, leg pain, lactation, severe fatigue, hormonal acne, syncope/passing out, body aches, pain during defecation, pain during urination, bloody discharge, severe bloating (when I say “severe” I mean “going from a flat stomach to easily appearing like I’m 9 months pregnant”), restroom urgency (to the point of occasional incontinence – yes, at 25, I sometimes have to wear a diaper), frequent urination, bloody discharge, insomnia, impaired mobility, stiffness, blood in urine, constipation, chills/cold intolerance, tingling fingers and toes (think “pins and needles” x ≥9,000 and you’ll get the idea), deeply increased heart rate with increased pain, excessive sweating/heat intolerance, unpredictable weight gain and loss, back pain, severe depressive symptoms leading to suicide attempts (associated with the chronic pain and also, to be fair, PTSD), chest pains/pressure on the chest, pain during sex, bleeding after sex, and severe hot flashes.

 

…hitting puberty at 11: Abnormally long periods (about 10 days long), abnormally heavy periods (7 days of exchanging super/overnight pads every few hours), debilitating menstrual cramps that were not significantly reduced by medication, vaginal spasms,, shift in bowel patterns related to cycle, hormonal acne, bloating and nausea related to menses, severe mood swings/PMS, fatigue, lactation, stiffness, sharp pain during exercise, excessive sweating/heat intolerance, insomnia, severe depressive symptoms leading to suicide attempts (associated with the chronic pain, my period, and PTSD), back pain, chest pains, and leg pain.

 

…prior to puberty: Fatigue, severe leg pain, body aches, back pain, stiffness, severe depressive symptoms leading to suicide attempts (associated with the chronic pain and PTSD), and insomnia.

 

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