Back to Back Hell

A dull sharp low back pain was how this how ordeal started. It was always there Nothing relieved the pain I thought its my normal devil in my spine pain I get from my Period but as the days went by I couldn’t bend and I felt it get tighter and tighter. It was a Sunday Fathers day and I felt strange as soon as I opened my eyes Like impending doom was knocking at the door. I wanted to just sleep I had 0 energy almost like a hungover feeling. I did was I always do Ignore the signs my body was telling me and force myself up.As I was walking my dog trying to enjoy being outside I felt intense pain in my back every step took my breathe away I was holding my pelvis tight and I felt like I was being cut in half.The pain got worse as I pushed and pushed trying to suck it up and not listen to the screams inside my head.I could barely get in and out of the car each up and down was killing me I felt my whole body just tense up.I finally got to my exs apartment where we were going to watch the soccer matches.I sat in a chair and felt my body lock and give up completely I remember thinking Shit this is going to be bad.I will be stuck in the chair all night. I said to myself just try to relax it shouldn’t get worse.It was past a 10 on the pain scale How could it be possible to get worse.It did and worse and worse… I was not able to physically get from a sitting position to standing As if my back gave out and no matter how much I pulled and pushed it was not moving.I got up twice and that pain will stay in my mind forever it haunts me.I got up slithering to the washroom and when it was time to get off the toilet I couldn’t I was stuck again.I used my hands on my legs to push myself but then I started to sweat and feel nauseated I got half way up and something snapped I felt the tug and then a wave of no pain almost numb then The room started to spin my stomach was turning and I walked near the washroom door and everything went black.I hit the floor like a ton of bricks.I heard my exs panic voice yelling and came too.I was laying on the floor of the washroom with a racing heart pounding out of my chest.I knew my body gave up on me and I couldn’t dare ask for more.I told him as the room was moving around and all i could hear was my heart beat call 911 I can’t move.I felt helpless this isnt me I am a warrior how dare my body stop working! I was so embarrassed and scared plus the pain from my back at this point was sky rocketing I felt I snapped in half. Peso my dog was hiding under my legs and i was there hoping for it to be over quick.My dress was up around my stomach my underwear was showing and the washroom was only made for one person so when 3 ambulance men came in needless to say it was tight.It took the 20 min to convince me to let them lift me up to the waiting bed in the small hallway.I never screamed so loud as the one gentleman climbed into the tub to get a better hold of my shaking body.I felt saved thank god I didn’t have to take up permanent residence beside the toilet. It was a slow bumpy ride to the Hospital and many questions by the Hero’s that saved me.They didn’t give me anything for pain and my heart rate was through the roof.I thought great my ex is wearing is Endometriosis shirt with my face on the back and he had showed them my little morphine pill body I keep in a secret place in my purse for emergency endo flairs the 3 pills I had.I guess they thought ohhh Pill popping endo attention seeker.I didn’t care what they thought I was just relieved to be off the floor.I waited for what seemed like forever screaming in the hallway as these helpless men just stood there.I was finally taken to a room and finally got pain medicine.It didn’t help and the pain with every breathe was killing me.I had to pee after a few hours of holding it at this point so the nurse proceeds to grab me and try to sit me up.I could have smacked her and she was lucky I didn’t.I am yelling and not moving a inch I am resisting the pull of her torture.So I guess its a bedpan for Sarah ohhh how humiliating! I had to stay over night and was lucky to not have to endure the night alone.I had company and I thought my ex was going to become my Boyfriend once more. He made me forget about the pain and I actually felt safe which for me is a huge deal.I had a urine sample taken and finally the doctor came in to say well you have a kidney infection thats the cause of your back pain.NOOOO WAY this is no infection pain this is the devil himself living in there playing with fire and swords. He then lifted my legs and my body went numb funny you can reach your pain limit and your body shuts down.You almost go into overdrive and feel nothing. He agreed to an X ray and after the X ray I was moved into the hall where I used a bedpan in front of the whole nurses station and other patients. I had such pressure to pee and pain from my Lovely Endo that had to start acting up of course can’t cut me a break. I was just done I remember feeling lifeless like my hopes and spirit left my body.I know that feeling well. I had no little voice saying you can do it Sarah.Instead everything was silent I wanted to give up I wanted to Die.I crawled into a wheelchair which was near impossible after laying in bed for hours. Pee running down my legs I didn’t even care. The doctor came back shocked look Ohh dear you have 2 huge herniated disks.WONDERFUL how in the world did that happen. Fast forward I am at home my body is weak I feel sick I cant move and dont no how I am moving or breathing for that matter.All I know is pain I felt almost at home in it.My ex who was now my boyfriend from the promises and bright future plans made in the hospital.He stayed for 2 weeks sitting with me and helping the best he knew how.It didn’t last and the responsibility would soon fall on my mother! Bless herxo

I am now 5 weeks into the living hell and I have had Home care come in and stare at me lying sprawled out on the sofa shaking from head to toe.They wont even touch me with the amount of pain I am in.Only there to give me lessons on how shitty my summer and 6 top 8 months will be.Giving me impossible stretches and telling me to eat though I am sick to my stomach and cant even think about food.I was mourning for my body the body that I relied on and maybe pushed too hard but that never gave up on me.The weeks that followed were the toughest I had to ever go through getting my body to do the worst and hardest things I once took for granted like walking sitting and peeing.I refused a hospital bed and every morning and Night climbed my stairs almost sometimes on my knees. No one could help me as I felt there hands made the pain worse like added weight to my fragile state.I ask myself where does my drive strength and motivation come from others would have popped countless pills and laid there hopeless. I made it my mission this too shall pass.I have never had to endure this much pain and then have Endo attacks on top of that. I felt alone depressed my relationship failed yet again I was missing summer and the world was moving outside my window and I lay in the dark feeling sorry for myself.I made trips to the spine clinic where my little bit of hope was shattered by words like broken disk,years to recover,too young for surgery,Huge very large Herniations,pressure on my thecal sack,physio and the list goes on. I knew I would fight this battle alone I always do Its only myself that gets me through the day.I will never take for granted the small things.I will try my own exercises and heal myself. No one understands this hell

I went the to ER I had a catheter put in first time OMG thats a whole other horrific experience in itself

I really don’t think I can take anymore I went from being on 6 pain pills a day to 0.I went from relying on a walker to walking alone,I went from peeing in front of people to know being able to have privacy which I forgot how nice that is.I went from relying on someone for a short time than getting kicked in the face slapped with reality that you cannot lean on anyone.I have gone picked myself back up and I dont no how.I am left with nerve damage no feeling in my left leg and foot horrible burning sciatica and unable to sit stand walk for very long.

I can only hope that I will have the strength to keep pushing forward I can only hope to survive this its been a real eye opener and a real test on my whole life,I plan to make many changes and start loving myself.Not many people know pain like I do I mean really know it! I have made friends with it and come to terms that many people will turn there backs on me but pain has always got MY BACK

letter

In response to a request to repost the EndoMarch speech from March 2014 where I could not attend but posted the speech, here it is again
Endomarch Speech
“When I was diagnosed in 1969, I had pain and one hospitalization after another for 17 years – without a diagnosis. I did, however, experience multiple scoldings about pelvic exams ‘not really hurting’ as I tried to exit the exam table with the ratcheted speculum still in place and some psychological dismissal because after all, it’s ‘just her period.’
Today, 44 years later, instead of prompt diagnosis and prompt treatment, we see diagnostic delays averaging 9 years. Nine years of pain, psychological dismissal, and disregard of severe pelvic pain. We have not come very far at all.
Making things worse – some are advocating that we not treat “minimal” disease at all. After all, it’s minimal, right? **Any endometriosis lesion can cause significant inflammation of the lining of the pelvis (aka peritoneum). Try living with a couple grains of sand in your eye for a lifetime!** It is the same kind of inflammatory response. This kind of misogynist approach to endometriosis care is outrageous. It is steeped in “there is not enough money to treat all 180,000,000 women worldwide” for their endometriosis. “
Let me tell you – if 180 million men worldwide had unbearable pain during sex, bowel movements and exercise, and were offered as treatment feminizing hormones, surgical castration or pregnancy? It would be an international emergency to which we would transfer our combined defense budgets. We would not be having this misogynist conversation regarding ‘enough money.’
The peritoneum is the thin saran wrap-like lining of the pelvic cavity and the organs. Its role is primarily protective. If there is blunt abdominal trauma, infection, appendicitis, leaking organs it reacts swiftly and predictably. There is bloating, intense abdominal pain, nausea, paleness, restlessness, anxiety (oh, you recognize that, do you?); every medical and nursing student on the planet has been taught to recognize these symptoms and respond quickly. A differential diagnosis must be made promptly and the peritoneal quality pain treated with pain medication. In women with endometriosis, however, we can somehow dismiss the intensity of her pain with the assessment of, “oh, it’s just her period.” This is outrageous that we would ignore, either in an ER or in a private practice, peritoneal quality pain without treating it.
If as a caregiver, you do not have the skill or interest in excising endometriosis, at least treat the patient’s pain. It is as intense as appendicitis. I know – I have had both. Or better yet – refer the patient to someone who can remove disease effectively. On our endometriosis boards on Facebook and other forums, where thousands of desperate women with endometriosis gather, we have identified less than 100 gynecological surgeons out of 52,000 in the USA who treat disease effectively- and yet, most believe they can. Treating effectively means permanent relief of pain in one or two surgeries. This disconnect is a huge problem.
Drugs do not treat endometriosis, they alter the normal hormonal state the woman tries to live in. Once, when giving a lecture on modern concepts in endometriosis, I had two surgeons confront me during the intermission. They said surgery was not necessary, they were curing their patients with triple dose Danazol and then stormed from the room.
When the lecture resumed the crowd interrupted and wanted know what the surgeons said. I told them they were “curing” endometriosis with Danazol. I wondered aloud why they would think that. The nearly 100 women in the room shouted almost in unison, “Because we don’t go back!” So if caregivers are thinking they are helping their patients with medical therapy, perhaps they are not listening closely enough – or just maybe, their patients are simply not coming back to them.
In the 1980’s when I was managing the Endometriosis Treatment Program at St. Charles Medical Center in Bend Oregon, we saw patients from around the world. They were all multiple treatment failures, both surgical and medical. 75% of them had been dismissed as neurotic. All had active, painful endometriosis as determined by independent board certified pathologists. Today, still I hear from woman after woman who has been told she has no disease and to seek psychological help. Yet when we manage to get her into the hands of a doctor doing advanced excision, she has active endometriosis and experiences dramatic long lasting relief upon removal.
Women with endometriosis live lives of quiet desperation. They have learned to be quiet because most do not believe the quality and severity of their pain. Their support systems often abandon them because doctors could find nothing wrong. Yet they present with peritoneal signs and symptoms. Will we continue to turn a blind eye? Or can we have the necessary compassion for their plight? If we cannot surgically resolve their disease, could we consider referring them to someone who can? Or can we put them into a pain management program? They will not become addicted, they may become dependent, but at least they will be able to get up off the couch and put the heating pad away and resume living a life.
Endometriosis is not a terminal disease, but despair can be and has been among women with endometriosis. I know of many…a single one is simply too many.
What I believe we need are trained surgeons to surgically deal with lower stage disease everywhere, and referral centers for complex, deeply infiltrating disease. Hysterectomies do not cure endo, although there are thousands of us that were fooled into believing that. It is unacceptable to continue to expect these women to cope with peritoneal quality disease without help and without relief. We are either part of the problem or part of the solution. We cannot continue to ignore their plight. There is a significant body of data now showing that excision of endometriosis lesions restores lives. How long will we continue to ignore that?
One of my heroes is Sister Kenny, an Australian Nurse who developed physical therapy for the acute effects of polio. Her therapy and hot woolen packs prevented joint fusion and relieved pain. She was soundly trounced worldwide by orthopedic experts caring for polio patients for years. Gradually, there was recognition that she was right. When asked why she thought it took so long for others to see that suffering could be ended with simple changes in care, she responded:
“When we speak with the voice of authority, we come to believe we are the authority.”
When I read that, I thought, yes, despite evidence to the contrary. Well, there is evidence, plenty of it, that skilled excision restores lives.
Lastly, another hero of mine is Margaret Mead, a cultural anthropologist from the last century. She said:
“Never doubt that a small group of thoughtful, committed people can change the world. Indeed, it is the only thing that ever has.”
Be that small group – nearly 180 million worldwide – that changes the world for women with endometriosis. Work with gynecologists everywhere to raise awareness of just how much this disease impacts lives and how inadequate many approaches are. Give them back their lives, their sexuality, their education track, their fertility, their love of life, get them up off the couch, and turn off the heating pads with truly effective surgical management of endometriosis.
It is time to stop ignoring the destructive impact this disease has on women’s lives, the lives of their families, spouses, significant others.
Actually, it’s way past time.”
© Nancy Petersen, RN 2013