I Will Not Suffer In Silence

This page consists of a growing list of things that never stopped the Endometriosis pain for me:

• Taking up to 1000mg of Tylenol until I was told that doing that will kill me… but less of it didn’t work. Can’t remember if 1000mg was working, it’s already 20 years ago. I went to Advil instead cuz my doctor said it was safer.
  

• Taking up to 1200mg at a time of Advil as soon as the bleeding started – nothing less than 1200mg worked. Taking that much only worked for a few years. My body got used to the dosage and I plateaued, and taking more would not have any further effect, I was told.
  

• Exercise by bicycle, gym workout, stretches, just walking, etc… it makes the pain WORSE.
  

• Praying to God (I was raised Southern Baptist Christian Fundamentalist).
  On my own, I found and listened to Coretta Scott King every week on the radio up through my teen years. I even sampled other Christian sects by going to church with my friends, but the Fundamentalism at home was just horrible and insane. I left the fold in college.
  

• Taking on Wicca as religion/belief system, then leaving Wicca for general Pagan ideas, in an effort to manually effect healing in my body, mind and spirit. No ritual I have ever done, whether in group or in solitude, has stopped the pain of endometriosis, and has been as useless as Christianity in that regard. Don’t even get me started on the sheer numbers of Pagans with chronic pain and mental problems out there. If this belief system worked, these health issues would not be so prevalent, would they?
  

• Taking “mind over matter” type courses – I know I have the ability to quiet and/or redirect the pain. I’ve done it before in times of desperation, but it is difficult for me to know how I did this. I need a constant teacher, and have yet to find one I click with. I cannot do this on my own. I NEED the discipline.
  

• Doing Progressive Relaxation, as first learned in a study from Stanford University several years ago, and followed up via a friend who has some really excellent Progressive Relaxation tapes he has shared with me. Again as with the ‘mind over matter’ course work, I need a constant teacher, and have yet to find one I click with. I cannot do this on my own. I NEED the discipline.
  

• Taking the doctor-prescribed amount of Naproxen as soon as the bleeding started. Later it was called Anaprox, and later still it became over the counter in Aleve form, but it never worked for me for very long. I started taking more than the recommended doseage like I had previously done with ibuprofen, just to try to dent the pain. That’s when my doctor told me that taking more than recommended can lead to heart attack and/or stroke.
  Plus, after a four-day hospitalisation for pancreatitis and gallstones, I was told I was a high candidate for developing stomach ulcers, and put on meds to counter that. Naproxen (Aleve) is also really bad for people with G.I. issues.
  

• Having sex to orgasm during the pain to stop the cramps (I swear, this idea is STILL pushed to this day by ‘experts’ and doctors) – I tried this on at least three occasions over the years and it does NOT work for me – it makes the pain WORSE.
  

• Going vegetarian for six years. I thought meat might be making the pain worse. I was was right, actually – red meat is proven to be bad for endometriosis. When I found out in 2006 that I have gluten intolerance, I went back to eating meat, but I’ve tried to stay away from red meat. Poultry and fish are the main meats in my diet.
  

• Omitting corn syrup from my diet.
  

• Omitting yeast and gluten from my diet.
  

• Getting chiropractic care (for over a year and it didn’t help).
  

• Acupressure (it only begins to work as pressure has been applied and is held. Once the pressure is removed, the pain resumes).
  

• Homeopathic medication: Sepia pills; first it was 30C dose 3x/day, then 300C dose 5x/day. It didn’t do a thing for the pain. Nothing.
  

• Homeopathic medication: Arnica gel; I first began using this to help make bruises go away faster. Someone told me arnica gel is also useful for endo pain, so I tried rubbing the gel on my abdomen during pain flares. Didn’t do a thing to stop the pain.
  I have a poor view of homeopathy where concerns endometriosis, so I’d prefer it if people refrain from suggesting anything further along the lines of homeopathic treatment for anyone with endo.
  

• Surgery – TWICE! (the first surgeon removed what she could of the Endo, but there was still some on the back of my uterus at the bladder which she wouldn’t remove due to fear of puncturing the bladder. The fact that it’s ON the bladder and can’t be removed means that even a hysterectomy will NOT stop the pain of this disease. The second surgeon 3 years later could not find the bladder endo – which makes me think it’s buried itself deep. That shit doesn’t just disappear. The second surgeon also removed what she could of new endo growths and endometriomas on both ovaries, but she had to leave the endometrioma in the left ovary, because it was too deeply embedded, and I did not want to lose my ovary).
  

• Smoking pot (I’ve tried both street pot and medical marijuana) – it makes the pain worse AND makes me extremely bitchy for the next three days. Noted on two occasions; once in 1997 or 1998 where I clearly remember writhing on the floor in even worse pain after smoking street-bought pot, and once in 2005 with medical-grade pot that a friend had given me, and which subsequently led to more pain. Both times, I smoked it.
  

• CBD in pill form – it gave me a psychotic break that took over 2 months to recover from.
  

• Acupuncture (I had treatments for about five or six months. The pain was relieved only on the day of acupuncture treatment, but the pain and bleeding always resumed full force within 8 hours). As of 2010 and then again in 2012, I restarted acupuncture treatments. The goal is to go long-term, but affording it has been the problem, even with insurance.
  

• Chinese medicine (this went along with the acupuncture treatments. The only thing it did for me was to make the blood brighter red instead of dirty brown, but the pain and heavy bleeding did not go away).
  

• Qigong – I need a constant teacher, and have yet to find one I click with. I cannot do this on my own. I NEED the discipline.
  

• Chi Nei Tsang – I need a constant teacher, and have yet to find one I click with. I cannot do this on my own. I NEED the discipline.
  

• Astrology – yes you read that correctly. Years before my mother became a christian fundamentalist, she drew up my natal birth chart when I was a wee child, because she could not figure out why I was always so sick. From time to time, I still look at what planets are transiting, to see if they have any bearing on why my symptoms are better or worse. Of course, I have yet to find anything definitive.
  

• Celebrex (makes me dizzy, gives me stomach pain and GI issues, gives me heart palpitations/panic attack, lent to weight gain)
  

• Tylenol 3 (300/30mg) – I was originally prescribed this medication for endometriosis pain management back in 2002 if I recall correctly. To date, this drug has shown the best results in managing my pain. Within a year, however, the doctor, who was just a general practitioner, was reamed for prescribing this to me regularly. She told me she could no longer prescribe it to me, and that I had to go see a GYN for further pain management. I have spent the last 13 years continuously fighting to stay on this medication, with doctors fighting me every step of the way.
  

• Muscle relaxers (Soma – Dissociates me so nicely from the pain but leaves me moderately to severely depressed after taking it for even one day, contributes vastly to weight gain)
  

• Oxycodone (I feel like I’m suffocating/drowning on even 5mg of the stuff, and then it passes into agitation and severe depression. If I take half the dosage, I still get very agitated and depressed afterwards).
  

• Darvon (leaves me moderately to severely depressed, sets off my TMJ, which is from a car accident, which I normally have under control, gives me severe headaches, likely from the TMJ. Can’t recall but I think I also suffered hallucinations on the stuff).
  

• Codeine Sulfate (Dissociates me so nicely from the pain but it’s like being on a nice drug trip that suddenly turns bad. I get heart palpitations and racing pulse, which turns into panic attack. Afterwards, I get agitated and/or severely depressed).
  

• Hydromorphone (Dilaudid – leaves me more nauseated than the other opiates, but once it kicks in, it dissociates me so nicely from the pain. Then it gets bad; continual GI issues, feeling of suffocation close to the level I experienced with oxycodone, and WITHDRAWLS!!!!)
  

• Vicoprofen – October 2009. Like all the other opioids, it left me constipated, gave me nightmares, made it really hard to breathe, made me itchy, and made me clench my jaw. I could only take half a pill at a time. Taking more than that is a bad idea for me. The closest I can think of is my bad experience on Oxycodone. I had to get off the Tylenol 3 for a few months, though because of pending FDA decision to ban acetaminophen, and the fact that it kills my liver.
  

• Vicodin (Hydrocodone) – same bad side effects as Vicoprofen.
  

• Taking supplements religiously since 1999: Iron, No-Flush Niacin, Vitamin-C, Calcium, Magnesium, Zinc, Potassium, Copper, Vitamin B-6, Vitamin D3, B-Complex, Vitamin E, Milk Thistle, Potassium, Evening Primrose Oil. I still take some of these supplements to this day (except for copper, No-Flush Niacin, and the B vitamins because I keep getting dermatitis from them, even though they say they are allergen-free).
  

• Wish Garden Cramp Relief Symptom Soother (Dietary supplement). The taste alone is godawful, and even juice barely masks the horrid taste. I have tried it on three occasions, and so far, no pain relief.
  

• Tumeric powder in 00 vegetarian capsules (packed myself, take 1-2/day with food). This was suggested to me back in 2010 after a friend read a study saying that Curcumin (Tumeric) lessened the effects of endometriosis in lab mice. I experienced really bad heartburn, and it did not lessen my pain.
  

• Turmeric Resveratrol pressed pills – given to me by the same friend above. Again, I experienced really bad heartburn with this pill, and it did not lessen my pain.
  

• Super Blue Stuff (with Emu Oil) roll-on gel. I laughed when I read about emu oil, but I still bought the stuff to at least say I’ve tried it. This stuff is constantly advertised in the National Allergy catalogue, so I figured there had to be something to it. That is to say, I trusted National Allergy.
  The menthol in the gel helps to distract from pelvic pain, because the surface of my skin gets so irritated from the chemicals in the gel. I’ve gotten a rash on my neck when I’ve used the gel there for neck pain, and the gel did absolutely nothing for neck pain (pinched nerve). Then I found out about legal action by the Federal Trade Commission against Blue Stuff. I’ve become disappointed with how much utter crap National Allergy is reselling to people.
  

• Norco 5/325 – The doctors assure me this is EXACTLY the same as Tylenol 3, but they are full of shit. It has less codeine in it, and the codeine is a more synthetic version, which makes me very itchy. However, I have been trapped back in HMO hell ever since my divorce (I was on the ex’s PPO health plan, and a PPO is superior for long-term illnesses. Don’t even get me started on the health insurance nightmare in the U.S.)…I’m with Kaiser Permanente now, and they won’t prescribe Tylenol 3 or Soma – it’s not in their formulary. So I’m stuck with this bullshit Norco stuff. But it’s as close as I can get to the dissociated pain management that I felt with Tylenol 3, so I stay on it.
  

• Neurontin (Gabapentin) – I was prescribed this in hospital at the end of September, 2012. I was on 200mg/day but was told to increase to 300mg/day during endo flares. This initially had good results (as of January, 2013). I had only been bedridden twice in five months! Sure, there was still cramping pain – enough that I was still taking up to 1,600mg of Advil in a day, but I hadn’t really needed the Tylenol 3 because I hadn’t gotten to crying levels of pain. I would get just to that point and then the pain receded. For almost a year, I did not get above a 6.5 on the pain scale. At the time, I wrote, “While partially managed, the important thing to remember is that the illness is still there despite taking Neurontin. I hope for long-term pain management and that’s all I can do is hope until a cure is found.”
  
  By October 2013, I was finding myself bedridden from the pain, again. I was told to increase, slowly, up to my threshold, but to an optimal goal of 900mg/day. I got to 600mg/day and experienced excruciating headaches. I eased down to 500mg/day for months, then tried increasing, slowly, again. I only ever got as far as 600mg/day, because of recurring migraine and then nightly restless leg syndrome. By the end of 2014, I obtained the doctor’s blessing to begin the long process of tapering completely off of Gabapentin. This drug has also failed to keep my pain managed without intolerable side effects.
  

• Ponstel – In 2014, my pain management doctor decided that Ibuprofen just wasn’t doing the trick to help manage my pain (REALLY NOW). So she prescribed another NSAID I’d never heard of, called Ponstel. Instructions are to take 2 capsules with first onset of pain, and then 1 capsule every 6 hours as needed for further pain relief. Results: No pain relief whatsoever. NONE. I went back to taking Advil liqui-gelcaps, which DO actually supplement the narcotic I take (currently as of 2014, Norco).
  

• Wellbutrin – I was initially placed on this drug for depression, and had decided to taper off of it, but a November 2014 article titled Study Finds Serotonin Decreases Sensitivity to Pain had me rethink my decision to quit this medication. I have previously been on other SSRIs: Zoloft, Paxil, Celexa…for depression management. All of these medications gave me intolerable side effects (excruciating joint pain, restless legs, amnesia moments, and even schizophrenic episodes). When I really took stock of the side effects and whether it helped my depression, I realised the answer was no. More to the point, these drugs have never helped with pain management. Granted, I was never able to take more than 50mg of any of those medications due to serious side effects. My body certainly is special…
  
  

I left off The Pill, because when I took it way back in 1990 (Loestrin), and again in February 2007 (Yasmin), it did stop the pain …but it made me a danger to myself and others, so overall it has failed.

Then there’s also the very fact that no matter which pain medication I’m on, sometimes it’s not enough to stop the pain which leaves me screaming.

People still ask me “hey have you tried…?”