Questions to ask your physician

-Do you have experience treating many patients with endometriosis?

-What caused my endometriosis?

-Can endometriosis be cured?

-Are there medications I may be taking that could aggravate or accelerate my condition?

-What are you thoughts on homeopathic remedies?

-Are there any natural supplements I should begin taking?

-Are there things in my lifestyle that could be aggravating or accelerating my condition?

-What treatment options do I have?

How successful are these treatments?

-What kinds of risks and side effects come along with each treatment option?

-Are there changes I can make in my lifestyle to better fend off endometriosis?

-Do I need to stop drinking alcohol or caffeinated beverages?

-Will my chosen treatment option be permanent or will endometriosis come back?

-Because I have endometriosis, am I infertile?

-Will treatments for the condition make me infertile?

-What is your treatment plan for me?

-How will we know if this treatment is working?

-What are the benefits? What are the risks?

-How long is this treatment?

-Are there other alternatives?

-Will I need additional treatments or procedures in the future?

-What would happen if I did nothing?

-What are the short term and long term options available to me for pain management?

- How long do you expect me to try each pain management option before trying something else?

Women with Endometriosis explain their pain!

What is Endometriosis? Endometriosis is a fairly common gynecological disorder which can cause extremely painful periods, chronic and disabling pelvic pain anytime during the month, and subfertility/infertility, among other symptoms. Endometriosis develops when endometrial-like cells similar to those lining the inside of the uterus (endometrium) begin growing in other areas or organs of the body.

Like many other disorders, endometriosis can be a chronic condition, with symptoms ranging from mild to severe. Diagnosing endometriosis can be difficult for a non-specialist because symptoms can vary widely and the only way to definitely diagnose endometriosis is by undergoing a surgical procedure called laparoscopy. Unfortunately many women and girls with endometriosis experience an average of about 6-10 years delay before being accurately diagnosed.

While there a many theories abound, the cause of endometriosis are unknown and, sadly, there is still no cure.

I asked a question that I myself have a very difficult time answering... How would you describe your Endo Pain? I was overwhelmed with the openness of these women, within two hours I received these responses. These warriors are my Endo Sisters we are 176 million strong globally and united together by this disease.

•   “A knife stabbing my ovaries.”

•   “Like someone shredded my insides and is pouring lemon juice over the open wounds and taking sand paper over them at the same time on top of cramps.”

•   “It’s the Devil setting Fire and poking through MY soul sucking the life out of me! This is a pain that is on a whole other level. Stay strong ladies!”

•   “Shrapnel coated in acid burying into your reproductive organs. I think period cramps are actually one's uterus trying to escape the Molotov cocktail that is endo, so it feels like your uterus is trying to fall out. I think 'endometriosis' is Latin for 'shards of glass in your insides'.”

•   “On the worst pain day? Feels like my uterus is slowly being pulled out of me by a white-hot rusty tow hook.”

•   “My insides feel like they are on fire and the pain is so bad I pass out from the pain!! I always worry about people around me as it’s scary for them as well and I can’t really explain what it REALLY feels like!!!!”

•   Knives constantly shredding my insides... unrelenting

•   “I have endometriosis and appendicitis; they were the same in intensity. In both cases I had bloated painful abdomen, severe restlessness, nausea, pallor.”

•   “Depends on the day, for me. Ovulating, feels like someone is taking a knife and tearing through my ovaries. On a "normal" day, constant aches, joint pain, horrible back pain, chronic fatigue, and exhaustion. Since changing my diet, though, I feel pretty darn good these days. *knocks on wood*”

•   “Well today I described my pain to a doctor as someone had put thick elastic bands around my belly and was pinging them and pulling them tight, I can feel my ovaries swelling and burning and pulsating, tight painful pressure in lower abdomen with a twisting pain in my sides whilst feeling light headed with severe nausea. It hurts to move my legs and stand never mind walk. Sorry... Having a bad day was told active Endo free in June (2nd lap) now I'm scared it has come back. That's how I would describe my pain today. It varies though. “If they have gone through labor, I would say like that during my period.”

    “I usually just tell them what's happening to my body that my organs are scarring together. But I go into super details. It's too difficult to explain the pain”

    “I feel like I'd imagine getting stabbed in the stomach feels. It's a burning throb. It also feels like everything is all fused together in my stomach so if I Stand too quickly, it pulls and yanks my organs and it’s so painful I have to sit back down or pass out.”

    “During my menses my entire body feels like it is trying to contort or change shape like something out of a horror movie. I can barely walk due to the pain in my lower limbs. My abdomen is on fire and alternates being punched repeatedly and trying to have my insides scooped out. My spine feels like it is being ripped out and my neck and shoulders are locked up. Plus I have a constant headache.”

    “It feels like labor each month but we don't get a cute baby at the end. Like my uterus is having an uncontrollable seizure. My stomach bloats so bad it looks like I'm pregnant. Its hard and there’s no sucking it in. Oh and if you to sit at a desk all day there is no relief. And I get this tearing, pulling never- ending pain on my left side.”

    “Like I am being stabbed in the ovary and then my leg hurts from hip to knee. Extremely achy Exhausting, debilitating, boring, lonely, frustrating, excruciating....etc. etc.”

    “Like my ovaries are being ripped out of my body.”

    “I was never able to explain how terrible my pain from the endo gets until I went thru labor and child birth with no epidural. That's how I explain it now; it feels like labor contractions, just utterly painful.”

    “I described mine recently as feeling like I had caught my nail on something ... But inside. Come to find out it was because my left ovary was dragged down and glued to my pelvic wall. I've also experienced stabbing, swelling, severe cramping, nausea, migraines, leg pain, sciatic pain... And my endo is mild. Good times.”

    “I really don't know where to begin...its worse than ripping the tendon in my ankle and worse than a migraine. Any touch or movement in the slightest and I will yell at you because all my focus is on breathing and not moving. It is like someone is ripping my insides out. It doesn't let up...you either pass out or hurt--pain medicine doesn't even take the edge off. And I am overcome with fatigue. It hurts too much to scream or cry and I really don't think it can be described. When asked on a scale from 1-10 what my pain is I typically say 7-8, but when I was unconscious from surgery I said 14. I think that pretty much speaks for itself.”

    “Someone gutting me, taking my spine with both their hands and twisting it, or a jack hammer on my abdomen. That's how I described it on my worst days. Not so bad, it’s a gnawing pain in my back, and then just really painful cramps.”

    “I say it was so bad I had trouble moving. And when they put me on high dose morphine in the ER, I could still feel it.”

    “To my girlfriends and female family members, I explained as if aliens were attacking me from the inside and probing every inch of my insides, to my husband and other male family members and guy friends, I asked them if it hurts being kicked in the groin, they said yes, then I said imagine that feeling times one million. I think they understand now. Well some of them anyways.

    “For me, not enough words to describe the pain. Usually, I have 2 painful days (period). Can't say bed rest but maybe bed tired/suffering. My abdomen is like having fever, w/ big rocks so it's heavy and rolling even. Not knowing how to position my body. Pain all over, back, front, down and sometimes my feet gets cold and half body numbed. I just wanted everything to end when I am in pain.”

    “My lower back feels like I've injured my spine in an accident and it’s in the process of healing. As for the front; I think women without endo couldn't tell you the exact position of their ovaries inside them, for us, I could point my finger on them. It's as if someone has got a clamp over both sides of me and is twisting until there is no more times it can turn and then dragging them towards each other. It's nauseating, debilitating, sometimes I scream out in pain when I get the quick stabbing, and no amount of pain killer will fix it.”

    “When I went into (induced) labor with my 1st, the nurses kept telling me I was having contractions- I didn't know what they were talking about. As the contractions grew stronger & I realized what they were referring to (based on the monitor), I was like are you kidding me? That's a contraction?! That's nothing compared to endo pain. Full natural childbirth, & delivering an almost 10lb baby that got stuck (shoulder dystocia) had NOTHING on endo pain. And also, like a butcher knife being turned & twisted in my abdomen.”

    “Agonizing. Also physically, emotionally, and mentally exhausting. For me my back pain is just ... unbearable at times. At one point it was so bad I thought I had a serious back or spinal injury.”

    “I used to hate it when people thought I was a wimp, exaggerating or trying to get out of something when I was in pain. Getting told I am a woman and it is supposed to hurt and to buck up was never fun. I got to the point I thought maybe I was just a wimp...and doubted that it was not in my head....”

    “I would tell them the truth. It is like someone stabbing and attacking your lower stomach.”

    “Someone is stabbing me over and over again. Freddy Kruger”

    “I’ve always said, a knife shoved up whichever end is having the pain and twisting and gouging the knife inside. It’s a hard pain for people to understand 

  :(“

    “A combo of someone using a meat cleaver to back their way out from inside, and a fire spreading throughout my torso, and needle pricks on my ovaries.”

    “I feel like my insides are being torn out through my girl parts.....or if I'm telling a man, I say it's like the worst diarrhea cramps you have ever had.”

    “Hot poker up the available holes, being repeatedly beaten across back and stomach, so tired you could sleep for a year and being to look 6 months pregnant in the space of 5 minutes, and the feeling that something is going to burst.”

    “I compare it to childbirth. Which usually works because a majority of people know what that's like even if they never had kids!”

    “Like Call of Duty behind my belly button. Grenades. Everywhere.”

    “Someone stabbing me in my ovary then taking what is left of it and wringing it out like an old dishcloth...all day”

    “Feels like i am being torn apart inside out and when my period comes oh hell let the war begin.”

    “Like someone poured super glue onto my internal organs. Standing up or stretching feels like everything being pulled apart in different directions. The pain is often sudden, without warning, rendering me unable to move until it passes. Sitting down feels like sitting on a thousand bruises. Sexual pain feels like deep, sharp spasms that come in waves and don't stop for minutes or hours. Sexual pain the day after feels like my entire pelvic region has been through a meat grinder. Adhesion pain attacks are so sharp, stabby, jarring and severe they make me want to fucking die.”

    “I get aching pain only, dull groin, back of legs aching, which thankfully comes and goes throughout the year. I get a crampy sickening pain at ovulation which is made worse by going to the loo. It lasts about 20 minutes, then goes, only to return for the next few days, (same amount of time). Thank god I don't get the knives in the pelvic region/tummy pain. That sounds like something straight from hell. I empathize with you all, poor souls.”

    “A knife been twisted in and around then an elastic band being stretched then twanged back ....are yeah also a fire inside you.”

    “Like someone is scraping all my internal organs with really rough sandpaper, and at the same time, there is a 400 lb. boulder in my uterus trying to escape through my "openings".”

    “Take a towel, say these are your insides, then twist and squeeze and stretch the towel, then take a fork and stab the towel, then ask, any questions? Works every time.”

    “Like a million daggers inside of me and every time u moves in the slightest way u get stabbed repeatedly... And some one squeezing all my insides together... or hot prongs being shoved up your who ha twisting and turning.. it sucks”

    “Like my insides have barb wire wrapped them and they are on fire.”

    “Like a steam roller and wheat cutter have been inserted in my body and operates all the time. Then a steam roller drives over my body ...”

    “For men: super glue your testicles to your groin... now go run a marathon. Usually gets them!! “

    “I've always said it attacks me. Tons of knifes stabbing & ripping. It feels like its falling out. I always want to tear it out of my body. Can't have intercourse with my husband because it’s an added pain to the already daily chronic pain. There have been a lot of times when I've wanted to just get everything taken out, but I'm only 27 & have always dreamed of having a household of babies. Adopted and my own birth children. This is something we have to grow to accept. Hardest thing. :*( I've started thinking I can't live this way forever. It’s only a matter of time until the endo takes away all my dreams. I have suffered for 15 years. It holds me back. I wanted to join the military, but I felt like my body would make me fail.. it was before I knew what was wrong”

    “I thought I was dying. I cannot run anymore because it hurts terribly, like its bouncing around and pulling everything apart. I read all our posts and yes, that's how it feels but it’s almost like there are No words that can give a true explanation. “

    “Words can’t explain the true suffering we feel. Bottom line.”

    “My doctor once said imaging a million spider webs inside of you and every time u move some of those strands rip and break causing pain...”

    “Twisting, stabbing knife on fire. May I say (I hope it's not morbid) I'm glad this? Was asked, I'm glad to know I'm not alone in even how I describe my pain. (Typing this now because I left work early because of pain, and am now waiting for dope to kick in :/ )”

    “I saw it's like my abdomen is being stretched apart and a sharp blade is stabbing along it.”

    “We'll I describe it to a woman is giving birth but much worse. And my bf has described it to his guy  coworkers that it's like having there man hood twisted and then pulled I had to laugh at that one.”

    “Feels like someone is stabbing u over and over and twisting the knife with each stab..” “Ripping, searing, pulling, and burning. I always say it feels like I have scalding hot rocks or bricks filling up my belly. Or like I am trying to digest razors.”

    “It feels like a barb wire fence is inside of me.”

    “Excruciating”

    “Burning pain too”

    “Like constant pin pricks from the inside, having bowling balls sitting on my hips”

    “Like a burning hot butchers knife stabbing and twisting over and over.”

    “The worst period pain you have ever had x 100.”

    “Like I am slowly breaking in half.”

    “I do think it's significant to point out that the popular adjectives seem to be "hot" and "stabbing" and "heavy."

    But also that doubling over is a common reaction. I would be shocked if most women here don't double over from it, I certainly do.”

    “I used to tell them it was like the part in Alien when the baby alien pushed and ate its way through the stomach...”

    “Like an exorcism inside my ovaries... Where good and evil are playing tug of war with barbed wire... And it’s already in a bib ball... The barbed wire... And they go back n forth over and over!!!”

    “Doubled over is not the word for it. Completely incapable to get off the couch or bed. Usually end up stuck there glued to my heating pad for at least 3 or four days before it starts becoming more manageable...”

    “Agony”

    “Devastating”

    “I used to hate it when people thought I was a wimp, exaggerating or trying to get out of something when I was in pain. Getting told I am a woman and it is supposed to hurt and to buck up was never fun. I got to the point I thought maybe I was just a wimp...and doubted that it was not in my head...”

    “Like someone shredded my insides and is pouring lemon juice over the open wounds and taking sand  paper over them at the same time on top of cramps.”

    “I say it feels like I am full of razor blades. I can’t stand it when people respond with, have you ever ACTUALLY been full of razor blades to make that comparison -_- ugh.”

    “Mine feel just like contractions.”

    “I told my husband it's like the pain you were in with kidney stones. Doubled over in pain crying for pain pills. Also like razor blades steading you from hip to hip and being stabbed in the ovaries. I don't wish this on anyone but wish he experienced it just once.”

    “I usually don't tell people. Erica, the only way I can describe having sex is it feels like I'm being shredded by razor blades. “

    “Mostly it feels like contractions, withering weakening agony, to cough is like having a knife being plunged upwards from my C-sections scars. I'm no wimp. I deal with it.”

    Imagine having the aches and pains of having the flu. That is my everyday all day constant pain. Now when I have a flare up I cannot catch a full breath, it hurts each time I move, twist or bend at the waist. My husband says I thrash around in bed moaning in pain. That is when I can sleep. As a woman with Endo I suffer from insomnia, my body is beat up and tired and yet I can’t sleep. My brain is searching. for answers, as my body attacks itself. As I type 4 weeks post op from my 11th endo related surgery I am heartbroken that the pain is back. Typically for at least 2-6 months post-op the day to day pain is manageable.

  If you have made it through all of these encounters of my Endo Sisters describing their pain I commend you. I am begging you to help us create awareness of this awful disease. Email me to find out how you can help. Endomarch.wisconsin@gmail.com

  Kathryn Tocco November 4, 2013

  • • • • 

         

       

   

EndoMarch

We have been chosen as volunteer delegates to represent our state on March 13th, 2014, in Washington, D.C., for the Million Women March for Endometriosis. This movement seeks to raise awareness about endometriosis, a disorder that affects approximately 176 million women and girls worldwide. Endometriosis often causes symptoms such as extremely painful periods, chronic and disabling pelvic pain, and subfertility/infertility. In severe cases, endometriosis can even metastasize throughout the body and cause multiple organ failure.

Despite these potentially incapacitating symptoms, those suffering from endometriosis remain undiagnosed for an average of approximately 89 years, a delay that can lead to severe medical consequences. This is why we must travel to Washington, D.C., next year, so that we can help educate legislators, health professionals, and the general public about the devastating effects that such delayed diagnoses and improper or inadequate treatments can have on people’s lives.

Endometriosis has impacted us significantly. Now is our chance to unite as sufferers and supporters to take a stand against this debilitating disease.

Please consider supporting us by making a donation toward our team’s travel costs. We would appreciate any donation you find it in your heart to make.

When filling out the donation form, please be sure to indicate which member of our state’s team you wish to support.

For more information, please visit http://www.millionwomanmarch2014.org

Thank you for your support!

EndoMarch 2014

Million Women March for Endometriosis

March 13,2014 

National Mall Washington D.C.

How to register: www.millionwomanmarch2014.org

Could it be worse?

Could it be worse? Absolutely but even in the worst situations it is always easy to say to someone else it could be worse.

Don't get me wrong, I have good hours, days, and even really great weeks, but there are minutes, hours and days where I am just angry.  I am angry because I have this awful disease.  I am sick and tired of being sick and tired.  Today I am day 5 post-op and it's not a good afternoon.  I am in pain, I am sad, I am feeling sorry for myself, I am mad as hell. 

Than the whys come. Why me?  Why did I get this disease?  Why am I in pain?  Why is there no cure?  Why can't doctors give me answer? Why do we suffer in silence?  Why am I so grumpy after surgery?  Why is it socially acceptable to accept an I don't know?  

Than here come the tears. My amazing husband tries to cheer me up today. He surprises me and buys me a pink camouflage Under Armour hoodie I have been wanting and I am crying.  Why? Because it's pink and it's October and the NFL is pink and the kohls signs are pink and it's not fair that they have answers.  They don't have a cure but they have a plan.  They know what to expect.  There are support groups and people know what is it and you not only have to explain what the hell endometriosis is but you have to see that look of huh I never heard of that before.Please don't misunderstand me both of my grandmothers died from Breast Cancer and it's a horrible horrible disease and I am not discounting it at all.

I am just having a tough day.

Endo! My long lost friend, I hate you

For years I was told the "cramps" were manageable with an ibuprofen, that the pain was in my head.  I was referred to a psychologist.  I was beginning to think it was in my head, but how could this excruciating pain, be in my head it feels so real.  In 97 my OBGYN decided that the Depo injection will help with pain.  In the Summer of 1999 I landed myself in the hospital. I was told I had a cyst erupt that it was normal given pain medication and sent home.  I began seeking different options from doctors as I would bleed for months everyday and than nothing for a month.  This went on until 2001 sex was so unbearable that I was prescribed a pillow for intercourse to rotate my pelvis.   This was a moot point sex hurts,  it's a magically intimate act and grin and bearing it should not even be a thought.  I got pregnant in November 2001  the most exciting time I was elated.   14 weeks in and I wake up full of blood cramping so bad. My husband rushes me to the hospital.  I was told I had a spontaneous abortion.  Can you imagine the pain we felt, until a lightbulb went on inside of my brain that. I know this pain.  I had a cyst erupt.  You can imagine the doctors when a grieving mother is pleading with them telling them they are wrong her baby isn't dead.  After hours of pleading even after I was given enough psych meds to knock out a horse.  They finally agreed to have a specialist come in to see me.  I was right my baby was fine.  It was a cyst.  I nursed my son until he was 14 months old the entire time I was pain and cyst free. 14 months -21 months post nursing  I was pregnant again, happy pregnancy healthy baby and then all hell broke loose.

In 2005 I went to see a Gynecologist.  I knew something was wrong with my body I just didn't know what.  After seeing many doctors and being told nothing was wrong with me so many times, the feeling I had was past desperation, it was my final attempt to be an advocate for me.  After many many tests he decided it was best to conduct a laparoscopic procedure to just see what was going on.  During that surgery they discovered that from all the cysts erupting the only option was to remove my Fallopian tubes. If I were to get pregnant the chances of me having an ectopic pregnancy were over 90%.   The lining of my uterus was abnormal but they closed me up and gave me many different hormone medications.  

Never the less in 2006 my marriage failed for many reasons, endo playing a large role.  I couldn't be intimate as the pain was too intense, I was in pain all of the time and it changed who I was and I pushed him away.  

2006- the doctor performed 2 surgeries totaling 11 unsuccessful uterine ablations.  He didn't understand how the balloons kept deflating almost as like the oxygen in the area was non existent.

On a Wednesday in  July of 2007 I arrived in tears to my physicians office. I had been in the emergency room 9 times for cysts erupting and the pain was too much to bear.  He did an ultrasound and ran some tests and I was admitted to the hospital that Friday.  I needed an emergency hysterectomy as I have cancer in my uterus.  They removed my uterus, one entire ovary, and my cervix. With complications I spent the next 8 days in the hospital where I learned I was allergic to the entire opiate family. The doctor said he saw some signs of endometrial tissue.

For the next year I went to vaginal therapy as my bladder fell and tilted.  My hormone levels were so off the wall they put me in medically induced menopause.  I had stimulation therapy on my vaginal walls as they were constantly in "orgasam" mode.  By January of 2008 I was back in for another surgery.  I was diagnosed at that time with Endometriosis. My doctor said it was "everywhere".  In fall 2008 I was back in for another surgery and they scraped all the endo tissue and stitched me back up.  

Summer 2009- next surgery my bladder fell more and needed to be tacked up. The endometrial tissue had spread into my bladder, they attempted an ablation, it failed. Doc wanted me to try Lupron. Again said no.

2010- Another surgery it spread to to my sacral ligament and it created a bunch of scar tissue in my bladder.  They burned off as much as they could.

2010- Endo spread to my gallbladder and had to be removed.  They said it was like my gallbladder had been through a garbage disposal.  Doctor recommended different hormone therapy I refused.

2011- Pain was at a constant 7, endo had spread to my bladder, onto my spine, the outside of my bowel and entire pelvic cavity.

October 2012- Endo pain severe and had 4 cysts that were not bursting, my ovary was missing and they could not locate it during surgery.  My entire bowel was burned inside and out.  My bladder is tilted so far back.  The endo has created a large hump which makes it difficult to completely empty my bladder.  They burned the endo off of my sacral ligament.  The doctor was not able to remove endo from T-8 and T-9.  With The burning of bowel I did not have a bowel movement for 16 days post op.

2013- Pain returned started back up in March 2013.  Did some research went gluten-free from April 2013 - September 2013 pushed through the pain until September 30, 2013.  They found a mass slightly smaller than an orange that had to be removed. The doctor stated the endo was less than any previous surgery but the scar tissue is very extensive.  

My physician has been fantastic.  He humbly stated to me that he doesn't know where to go from here.  I should seek another doctor who specializes in endometrial surgeries.  The mass that was removed came back as benign  however there were abnormal cells.

5 days post-op

It is 4:08 am I have spent the last 7 hours tossing and turning trying to find a comfortable position to be in.  I have 5 suture areas that are super itchy as they heal and my body begins to reject the stitches. I am perplexed with still having gas pain in between my shoulder blades. I am debating taking another pain med, I hate how they make me feel.

Many times throughout the night my loving husband wakes up in a state of panic making sure I am okay.  Sometimes I am unable to fake the smile that allows him to fall back into his peaceful sleep. 

I succumb to the pain and reach for comfort.   As I attempt to get out of bed Nick awoke as he always does grabbed my hand and said "I will fight every fight with you". I kissed his forehead and assured him I was okay and headed down the stairs.  I have this feeling similar to guilt that he is always so worried about me.  He shouldn't have to worry.  I often find myself lying to him about how much pain I am really in.  That isn't fair I just don't want to be that wife who complains all of the time.  

I am having a strong desire to fill my spiritual cup.  I don't know where I want to attend church I only know where I don't want to attend church.  Guess I need to pray about it.