My Story, My Journey With Endo

Life with Endometriosis

My Personal Journey


***Previous Occupation, Rehabilitation Aide for Developmentally Handicapped,the stage and severity of my illness prevents me from working full time in an office or rehabilitation group home or institution.

I am a business owner of a home care service company that I run from my home, doing this has allowed me to work from the comfort of my home, I have a small staff to do the work I have so this allows me to mainly be at the office with the exception of doing first and final estimates and making sure jobs are done to standard on the jobsites. This has worked out very well so far for me though it is a new venture in an area I am unfamiliar with, but I am trying to do my best. I dabble in design and sell my photography work such portraits and nature prints and am in the midst of creating "post-thoughts" which are inspirational messages/photo's on Postcards. I work on Calendar’s and inspirational T-Shirts, my goal is to go full time into my photography and this work within the next few years***


The story of my Endometriosis


My periods began at age 9, by age 13 they were already out of control.
I had extremely painful cycles, many times having more than one period a month and lasting 5-9 days, I was so embarrassed as I would be forced to use my baby sisters diapers as pads, I was scared and in pain.
I would develop clots and my bleeding was so heavy I would have to be hospitalized many times, all I was told was some women had bad and painful periods, I was just one of the unlucky ones.

I was put on birth control pills at 15 to slow the periods and regulate them but I developed migraines immediately no matter how low the doses. I had allot of one sided pain the Dr’s diagnosed as ovarian cysts. They assumed I had Poly-cystic Ovarian Syndrome (P.C.O.S) but b/c I was so young they were hesitant to firmly diagnose it as that.My first of many surgeries was to lance an ovarian cyst.

At 16 I had a teen pregnancy, the birth was a major trauma for my small body, my labor was too fast, from my first contraction to delivery was 3 hours, I had hemorrhaged so badly and in so much pain the Dr gave me a larger dose of Demerol but things progressed to fast and I was bleeding out, my placenta also became stuck so I needed emergency surgery to stop the bleeding and deliver the placenta. Because of the large dose of Demerol I had been given my son's heart stopped, he was born with no heart beat and wouldn’t breathe, while the Dr was working on him all I could hear was "breath baby breath"! I was terrified and too young to know what was going on. I began passing out from loss of blood and the next thing I knew they were putting a mask over my face and telling me I was going to have surgery, and I started to fade.

He and I were operated on immediately, I woke believing my baby had died, I had tubes coming out of everyplace I looked, I needed transfusions as I still kept losing blood. I never asked about the baby at first as I was convinced it had passed away. A day later they brought him in for a brief visit, I was elated to find I had a son but I was not allowed to have him with me often because of my condition. I developed a severe internal infection that kept me hospitalized for a few more weeks and in need of more blood transfusions.

By 18 the pain and bleeding was very bad still, I was married and tried to start my family but found I couldn't’t get pregnant so my specialist decided to operate to see what was wrong. It was then I was diagnosed with stage 3 endometriosis, severe scaring of my fallopian tubes, scaring and adhesion's especially around my ovaries and tubes and some adhesion's to my bladder, it was found that the scaring from the endo, birthing trauma and infection had caused secondary infertility.

They did re constructive and endo removal during that surgery,I was one of the first patients in the Vancouver teaching hospital to have laser surgery for gynecological issues, this was a new treatment at that time and I was lucky to have been part of it. My surgeon was the leading in his field and a board member/teacher in that hospital, I couldn't have lucked out to have found any better to attempt my surgery. He used the laser to work on the adhesion's as well as burn the endo implants, which was what they thought was the best way to treat endo at that time, he said it was very extensive and he located allot deep in my pelvis, there were however locations he couldn't operate on and areas on my bowel they couldn't touch. He said he did all he could, he had managed to free up my tubes and cut away some adhesion's, my ovaries had matted on to my uterus so they tried to free those as well as best he could, however they were in a very bad way from years of cysts and endo.


The surgery had lessened my pain somewhat... but pregnancy’s still never occurred, we tried everything else that was available to us, but eventually the stress of it all, infertility, as well as what my pain was restricting me from doing added severe stresses to my marriage. Eventually the marriage ended, for me, not being able to have children and that stress was more than I could deal with.

I remarried a couple years later to a very understanding man who was very supportive through my the unrelenting issues with my abdominal pains, Dr visits, hospitalizations...health issues and bevy's of Dr's. Few Dr's then thought Endo could cause such severe pain and lead to so many other issues, each Dr seemed to leave things as if all I had was ovarian cyst issues and saw no reasons for all the pain in between, or the pain I would have when an ovarian cyst was not present through an ultrasound. The lack of my having an experienced specialist in endo earlier lead to more surgeries for the wrong things, these were band-aide treatments to work on cysts instead of the endo which is what should have been done. I had no idea then that all these surgeries for the cysts were causing adhesion's, that combined with my lack of understanding of my first real endo specialists diagnosis the beginning meant I had no tools to lead me in the right direction of treatments.

Over the next few years the pain got worse and worse, I had tried fertility drugs to increase my chances of a pregnancy, but all the fertility drugs did was cause multiple painful ovarian cysts which required further surgeries to lance them, they also contributed to further scarring, these treatments then had to be abandoned.

During one ovarian cyst surgery they had just put me under and opened the incision area when I went into anaphelactic shock, I 'died' on the table for several minutes before they were able to revive me. In that time my organs had totally shut down, when I awoke in the intensive care unit with tubes coming out of every available limb I couldn't grasp what had happened. Slowly over the days I started coming back around, when organs stop it causes the body to swell, so my head and face was unrecognizable, my nose was sunken into my face as the rest of it was so many times swollen past its normal size. My hands were like baseball mitts and I was in severe pain, it took a couple weeks total to come back from that, this has since been my worst stress and nightmare when I had/have any further surgeries, it is something we have to now consider with every surgical attempt.

Having all these medical issues, living in that kind of pain each day, sharing only a small portion of the hell you are living through with those closest to you b.c what you do share seems to much and too overwhelming on it's own, leads to many emotional issues. Adding to that infertility and the dream and stress of trying so hard for a conception and never achieving it....knowing other friends and having children so easily, knowing one will never give their spouse the joy of their own child...is a hell unlike any other. Knowing you are a woman who cannot do what 'normal' women do everyday, knowing you will never have the family you had planned is the loss of a dream, issue by issue, surgery, pain, Dr's, specialists...the lack of understanding from family and friends all chip away at a woman's self esteem, self worth, the questions of who am I now...what will my life be like....are answered in your mind with 2 words, failure and worthless. It takes allot of years to come to terms with infertility itself, add to that it's disease no one else understands, not even yourself and it is a mixture of nightmares. Perhaps had I been older or would have had the right Dr's at the time I may have handled all that differently, but i took it out on myself and blamed myself, like I had any control over this disease...which of course I didn't. I, like many of us who I speak to now choose to push others away, and that's exactly what I did.


Through future surgeries my stage was increased to Stage 4 were were finding the adhesion's were now getting markedly worse around my bowel and intestines and had attached firmly to the bladder, kidney (I only have one) and to the back wall of my abdomen. They did extensive work throughout that area and but it was getting harder each time they went in, the pain would feel somewhat better for a few short months, then it would slowly again start to increase.

The pain became unbearable throughout my entire pelvic area and in my back, especially after eating, I had shooting pains down my leg, the pain would come on like lightening and drive me to the floor in tears. Bowel movements became excruciating, from approx 1hr after I ate until I passed the contents the pain would drive me to the floor, I was vomiting with each movement and losing vast amount of weight and getting sicker as time went on. I all but stopped eating just to try and avert the pain that was bound to come afterwards, the severity was far too bad for the pain medications I was taking to even come close to touching it or making any difference at all.

I was having a particularly bad bout of pain from yet another ovarian cyst, they wheeled me into the surgery room and was about to put me under when a nurse came running in telling them to stop the surgery immediately. The nurse took the surgeon aside and the Dr came walking over to me with a big smile, he said he couldn't go forward with the surgery unless it was deemed an emergency, reason being, I was FINALLY pregnant. I was beyond elated.

Soon into the pregnancy I developed extreme right sided pain, I put it off to the cyst but it just got worse and worse, I ended up in emerg and I found out that I had an ectopic pregnancy and needed surgery to remove the embryo. After the surgery the Dr had said it was in such a spot that it was partially in my fallopian tube and partially in my uterus, so had it just moved ever so slightly it would likely have come to term. I was very depressed, it took me a long time to come to terms with going through all those years of trying so desperately to have a baby, I had gone through so many treatments, tried so many things, prayed so many prayers....lost a marriage and finally I had one, the joy I felt over those weeks knowing I was pregnant were the most happiest weeks of my life. I had gone so far as to already buy clothes for the baby, bought pregnancy books, told everyone, received cards from friends who knew how important it was....all to have to have it removed then be told it was sooo close to being in a proper spot. I was devastated. The stress from trying to recover from that, and the absolute lack of understanding I received in my relationship lead to it ending as well.

Eventually I wound up in the relationship I am still in today, I became a mother to 3 beautiful young children that came with my new relationship. He knew all about my health issues and walked me through them all, he is a great support through all of it, though it was never easy.
The children were my gifts from God,they changed my life and couldn't have been more of a blessing.

It wasn't long before my pain got even worse, in the space of a couple years it went from barely tolerable to incapacitating and debilitating. My problems with vomiting and severe pain while voiding increased to levels I couldn't tolerate at all any longer, we had moved so I didn't have the support of the Dr's I had in the past and these new ones in a new community were anything but helpful or caring. They didn't seem to care in the least about my diagnosis or past surgeries, as far as they were concerned ALL the past surgeries I had should have CURED me by now, I was a text book case for rarity if it didn't, which they were not about to accept.

I was branded a 'drug seeker' b/c I kept asking for pain meds stronger than the Tylenol 2, and because at times it got so severe it would send my to the emergency room in tears, at times the shots they gave in the hospital was the only thing that would offer any relief, even though it usually only lasted a few hours, it was better than no hours of pain control.
I had always needed pain meds to get through my pain, but now it was unbearable. I had been using Tylenol in the past and on occasions my other Dr's had given me stronger meds to get me through the rough spots, but these new Dr's would have nothing to do with it, instead they took away even the Tylenol. This was a very small town with one clinic and 4 Dr's who stood united, nothing I said made any difference at all and it got to be no matter what I went in for I was treated with suspicion and hostility. This was the phase where she told me my issues were NOT endo or adhesion's, they were purely mental and caused by depression to which the only help I would ever receive from her was anti-depressants.

This next yr of anti depressants and the whole sad story that came out of that, is for another blog, it is too in depth and complex to go into the whole sorted story in this blog. Suffice it to say I had a severe reaction to the anti depressants that the Dr treating me ignored and instead of pulling me off them increased the doses to such an extent they were killing me and creating severe mind and mood alterations and sent me into a living hell. I spent a year in a nightmare, 8 months in my room in my bed, not knowing my name and at times those around me, in treating what this Dr saw as my mental problems increasing instead of my reacting to the anti depressants, she added many other medications that only served to create many more issues. By the end of that 8 months I was on 11 different brain altering medications from anti depressants, to anti convalescents to anxiety pills, lithium...the list was never ending. I was having grande maul seizures which lead to permanent memory loss and vision loss, having psychotic breaks, hording medications and attempting suicide on multiple occasions and having my children convinced I was possessed.

I was completely unaware of my behaviors then, I had such a break with reality and hallucinations that I had no control and no self actualization of my actions not surrounding.
No matter how much my husband pleaded with these Dr's that my issues had not been depression, that something was happening, none of these things I was doing was in my character, and that I was getting worse each passing day was listened to, all they told him was that my 'depression' was really schizophrenia...sometimes it all hits later in life....he would have to accept it and learn to deal with it....everywhere he reached for help resulted in answers he knew were wrong.

It ended when I seized so badly I was rushed to the city by ambulance, there I found my saving angel, a Dr and a psychiatrist who found out that I had been having a reaction to the very first anti depressant she gave me. My new Dr was appalled they then the added 11 more on top to treat those symptoms brought on by the original reaction, which they deemed as being schizophrenia.
I was taken off all the drugs she had given me and recovered quickly with the exception of the memory loss and sight impairment.

He then sent me in to see the best surgeon in the university hospital to assess further all the pain I was having and why I had been seeking help all along, he saw my previous surgeries and dx of endo and thought it may have something to do with this. He sent me to the best he could get in the field which we gynecological cancer surgeons in the provincial cancer hospital where they got me in for another laparotomy.


A further laparotomy confirmed the adhesion's were now calcifying in places and had fully enveloped sections of my bowel and intestines, this was causing partial blockages and obstructions of the food and waste as it moves through those areas along the way to voiding.There is a partial loop obstruction deep into the small bowel which backs the waste up and stops it from being excreted properly, many times it must have been obstruction pain putting me to my knees, and it fully explained the issues with pain after eating, the vomiting and extreme pain while voiding. Thankfully instead of rupturing somehow it managed to work its way out. Endo and adhesion's were seen to be thick on my kidney, ureter, reproductive organs, bladder, uterus, as well as many other places throughout the pelvic cavity.

Everything they found more than explained the horrific amounts of pain I was in, they did what they could but unfortunately that wasn't allot as it was very hard to navigate around some of those areas without causing damage to some of the delicate organs and tissues. He freed up as much as he could then closed me up.

Since that time I have had 3 more laparotomy attempts to free my bowel and intestines, unfortunately each time they open me up, further adhesion's form, the first specialist team went in one yr after the last time mentioned, that team opened me, then closed me without doing one procedure. When I awoke they told me they just couldn't get into the cavity as the adhesion's were too severe, extensive and very calcified, they said it would be like cutting through leather and not knowing what was underneath. B/c they are attached to so many delicate and critical organs cant be touched surgically, so there is little I can do in the way of surgery any longer.
hey were very stern in the warnings that came next. I was told in no uncertain terms that I must be very careful when it comes to pain, any sudden, severe pain that persists for any longer than a usual amount of time needed to be attended to and assessed immediately. They advised me that the intestines and bowel were so compacted and adhered to the other organs they were attached in a clump and pulled and stuck to the back wall of my pelvis. They said at any time should severe pain come on, I had to get to the nearest hospital as my chances for rupture, complete obstruction, strangulation, hernia, etc.. is extremely high and not to be messed around with, once a rupture occurs one doesn't have much time in the best of circumstances to get it attended to. Once fecal matter is in the abdomen infection can set in....and a number of other issues become a race for time. If any of these were to occur I would need immediate attention as getting to any of those areas now, with all the time in the world they had these past surgeries to get there would not be afforded to them then, surgery would have to move forward and chances taken as then it would be a life threatening event.
Through the grace of God things have always worked themselves out before something terrible has happened, and I trust that will continue to be the case. I was STRONGLY advised to let no other surgeon or team attempt any further surgeries for anything less than a life saving measure and to try my best to be sent to their hospital where a file on me would be available to any other team who may get me should they not be available, further surgeries could easily lead to cutting into the organ and causing bleeding, toxic shock, colostomy bag, or possibly death. As far as I am concerned, one more surgery is one more too many, if I never have another it will be too soon.


My team at the University of Calgary cancer center which consists of gynecologist/surgeons took over my case and still are my team today in the event of an emergency surgery.

I was referred directly to a pain clinic, I was so pleased to know I had been referred to the best one in western Canada, she is a teacher, author and advocate for persons with pain. She runs many clinical trials and is not afraid at all to treat the person the way she sees fit, she was so understanding, thorough, caring, she took her time getting to know me and my case and wanted me to tell her all my history, which took hours. She is the one in my province who is in charge and leads the medical marijuana program and is a top researcher in using new and alternative treatments for pain. In no time she had me on meds that for once in my life HELPED, I was so happy, and great full. As soon as my pain was under control about 50% of my vomiting left, the only time vomiting happens now is as the pain is at it most severe when the contents in my tract is moving past those severely adhered areas. Which is wonderful.


My full Endo diagnosis

**Stage IV+ Inoperable Endometriosis
**Severe and extensive calcified adhesions causing 'frozen abdomen' (no movement of organs)
**Partial intestinal/bowel obstruction caused by adhesions
** Endo to most pelvic organs.
**Secondary Infertility



How I cope

Medication helps about 50% of my pain, there are additional meds I have been offered to try on top of the one I am on, ( I have one pain med, one med for bowel spasms and one for nausea)I am reluctant to add additional pain medications b.c I don't want to be 'fuzzy' in the world, after my round that yr and losing it during the anti depressant nightmare I am not into losing any more precious time.

I have always been a very spiritual person and have great faith in a higher power, I count on that higher power to see me through the bad times and celebrate in the good ones. I count my blessings and know things could always be worse, so enjoy whatever quality of life I do have.

I am an avid practicer of meditation, focused healing and energy healing, I practice and am learning to be a Reiki practitioner.

I have worked extensively with a retired naturalpathic doctor/professor from Harvard medical school, she is an angel who was sent to me at just the right time I needed her and would accept and follow her advice. We worked together closely for months designing my endo 'diet' which is NOT a DIET, it is a way of life, a way of eating healthfully, naturally and with leaving behind the greatest amounts of chemicals, additives, dyes, poisons and bad things I can. I have added many additional nutrients, oils and am on vitamin therapy. From the time I started just the vitamins alone I felt like I had a new life, any depression I had disappeared within 2 months, I regained my energy and a sense of well being, it was THE single best thing I have done for myself to date.

I have combined the energy healing with an EFT and Zenlight techniques to healing and live by a mind/body/spirit methodology to health and wellness. I am an avid researcher and learner of many alternative practices through many health modalities practiced throughout diffrent cultures the world.


I learned all I could about endo and other issues that one can acquire with endo, I joined a support group and quickly saw I had allot I could offer through my stories and 30+ yrs of fighting this disease. I eventually started moderating an endo support group then moved forward to starting 2 of my own. Today I 'own' a great support group focusing on alternative coping and positive action as well as combining those with our traditional western approaches.

If there is one thing I have learned through this journey is, I am not the typical endo patient, mine is the severe end of the scale, few of us have this severity of issues, though we are sure out there. I do not write any of my journey to scare any newly diagnosed women, on the contrary, I share my story to encourage women to take their health care seriously,to learn everything they possibly can and above all, never just let any Dr, specialist, surgeon just DO what they want with out being fully informed, fully educated and fully in agreement. I have risked my life too many times putting it into the hands of those I shouldn't have, I learned I have to question, not to take for granted they are doing the best for me, though most are trying. I have learned my health, my body and my life is in my own hands, unless it is a life threatening moment, any treatment can wait until I feel perfectly safe and educated in doing it, until then, one shouldn't move forward in anything.
I have learned surgery is not always the best option, there is a point to say no more before one makes it allot worse for themselves. Soon menopause will help allot of my pain, but when I may have been able to just rest at that point, now I will always battle the adhesions from the surgery's, nothing will ever help those.

So, I write this to empower women with endo, that is my goal, endo is hard enough to live with, I have lost marriages, my fertility, a baby, I have struggled through fertility treatments and the hurts and losses one feels each time it doesn't work. I have almost lost my life, must be constantly aware of my body and face an uncertain future. I have taken so many medications, treatments, surgeries, had the best of Dr's and the very worst of Dr's. I have been called an addict, lived without pain medications through the worst of pain, I have had to beg for relief and I have had no one listen. I have lost friends, made enemy's, I have made friends and allies too, I cant think of too many areas I have not covered in my journey, and If I can offer any help at all to any other woman so she doesn't have to travel one of these roads, then sharing my story will have had a purpose.



Thank you for reading my story and visiting my site, I pray what I write here is helpful and what I share in the future is as well, there are many other issues that come with endo, and I hope sharing them is of some value to someone.
I hope something here is of use to you.
With Love
Health'n'Healing...
Loretta

Here are some videos showing adhesions and the surgeries involved. Remember though, when relating it to my case, mine are extensive and not easily cut as they are calcified. Also, the area of the intestine and bowel are not easily and sometimes never worked on b.c of the delicacy of the organs.










I have also included one on florescent lights detecting clear endo