ENDOMETRIOSIS

May 2009 find you good health, less pain and family and friends who support you!

One reoccurring question in letters I receive or posts in groups is ' How can I get people to believe the pain I am in' ?
or, "How can I get family and friends to be more supportive'?
Let me start by saying a sad truth, some will never understand and at some point you have to stop beating a dead horse and understand some will just NEVER get it. That's hard for us to live with because we want so desperately for the people we love, or our Dr's, work etc... to understand why we are forced to live the way we live in order to deal with this constant chronic pain, Dr's appts, hospitals, surgeries, medications....
In my 30+ years dealing with all of the above I can say honestly, there is no easy way, but there are some steps you can take to help those who will take the time to listen and learn a better chance of understanding.
Here are some idea's on how to better educate those who will give you the respect of time to teach them about Endo.

1) Keep it SIMPLE,
to begin with you don't want to overwhelm them with complicated information, keep it simple at first then add more as they digest the first. If you can get them to a computer I HIGHLY recommend bringing up the ERC's

Audio-Visual Presentation on "What is Endometriosis?"

http://www.endocenter.org/

It is THE VERY BEST VIDEO on the subject I have seen which gives a simple explanation that is the easiest to understand. After viewing the video it can lead into a discussion of your own journey with the disease.

2) Join a support group!
There are so many groups out there today whether online or 'in person' that are excellent places to gain information, friends and support, something most of us need even more than we realize. Google Endometriosis and a list will come up, there are also plenty on Yahoo groups and many on Facebook such as one I currently offer support on called *I'm a Friend, Family member. And i support my loved ones with Endometriosis's Wall*

My testing update for my group members and readers

My testing update

As you know the last many months has been all about finding the sources to this severe periodic swelling I have had to my limbs which seems to be presenting about 40-60% of the time during a month period and is affecting mostly my legs and feet.

In the beginning the thought was first, it was linked to my Fibromyalgia....then they thought it must be related to R A, (Rheumatoid Arthritis) which along with Endo & Fibro, runs in the women of my family. Specialists (Rheumatologists) I had seen regarding these said Fibro does not cause swelling, it can cause puffiness, and though the fibro will greatly intensify the pain felt with this swelling, it could not be the cause of it. He did a blood test for RA; it did not show a rise in RA factor now, so that too was ruled out as the cause.

Next thought was Lymphedema, as I wrote here some time ago. I wrote about that test and how extremely painful it was, it still is shocking to me it could be so painful! I shared how in the end it said that my lymphatic flow was reduced, but not enough to be causing such severe swelling.

This was the point my Dr became allot more worried, the things that were left that could cause this swelling were things that needed to be addressed immediately. These being, blockages, clots, heart issues and tumors. Apparently there are tumours that grow on the Kidney and Liver that are famous for presenting these symptoms. I was booked for a number of tests and labs.

I had a C.A.T and M.R.I scan and was booked in for more Nuclear Imaging; the labs came back with nothing showing in my blood work, which was a relief as that helped rule out cancer causes for the most part.

Just this past week my C.A.T and M.R.I tests came back in.

These tests confirmed more complications being caused by my extensive pelvic adhesions. Apparently they have attached on to my renal artery leading into my kidney. I only have one kidney which we already knew for nuclear scanning in 2000 also had endo and adhesions attached to my ureters, and to a main artery. Since 2000 it seems this is now causing a strangulation of the renal artery which is causing severe restriction of blood flow to the kidney.

This restriction is affecting my blood flow and is causing circulation issues, which causes the pain and swelling in my lower limbs, and also would be the cause of the swelling to my hands.

There are a few big concerns that come with this D/x, the first being extra pressures placed on heart function, next is clot issues, this can cause clots to form that if released can cause stokes, heart attack, lung embolism and so forth. Another is extra strain placed on the kidney and damages that can be done to limbs that are not receiving adequate circulation. So that is the new diagnosis, though it is not the best news, it could have been worse, it could have been the tumor or any other number of issues, I don't like this one, but none the less, I now know what it is I have to contend with.

My new Prognosis;

Since I am in-operable due to the extensive, dense and calcified adhesions throughout my abdomen, surgeons will be very concerned about risking injury to major organs trying to cut through those adhesions to get to my renal artery. Surgeries to that artery at the best of time is a very tricky and risky venture, add to that bound organs, frozen pelvis and calcified adhesions and this relates to nothing less that a nightmare surgery with many known and unknown risks.

I am to see a vascular surgeon to discuss what should be done, we may have to wait until there is no longer time to wait....it may be safer to endure the pain and swelling than to risk further injury, hemorrhaging and so on. These are risks we will have to evaluate then.

The problems these adhesions from my 13 abdominal surgeries in the past never seem to stop coming up, just when one thinks it should be under control, as my last major surgery where they worked at cleaning some out was in 97.....since that time the 3 ab surgeries after has been an open and close affair as they not only could not cut through the calcified adhesions, they could no longer tell one organ from the other as they are bound in a large 'wasp nest' or 'cocooned' in these adhesions so when they go to cut they have no idea at all what lies under the scalpel.

In attempting any surgery surgeons risk cutting into anything lying beneath the adhesions and causing a life threatening event, or worse, damage may not even be known until it is too late, then fixing any damage is just as risky and can cause even further damage..... They have tried 3 times since 97 to try removing some of these adhesions, mostly to free my intestines and bowel areas that are being obstructed in a few areas and causing this extreme pain, elimination issues and the possibilities of full obstruction, strangulation or rupture.

Had anyone said to me there was such a possibility of going through these types of issues from adhesions from having abdominal surgeries to treat the pain of endo, I may have not listened to all these specialists who said they could help with my endo pain. I had no choices of having surgeries when it came to my ovarian cysts rupturing, and they did cause a certain amount of scarring on their own.... but a total of 13, 5 of which were to try and fix the damage caused by the previous 9, is FAR MORE than I bargained for.

Each surgery did so little to relive the pain, later when I asked why I was told it was b.c it is so deep seated in areas where it is too hard if not impossible to get to. Leaving any of it leaves the pain. Allot also had to do with the fact that endo implants create their own nerve supplies and each signal the brain that it is injured, thus the pain impulse is triggered, since all the surgeries I had in the beginning were all laser surgeries where they did nothing more than burn the 'tops' off the implants they found, it is no way effected the nerves underneath that were actually sending the pain signals. By the time science learned about the nerve supplies and that laser surgery was not the best thing they ever found, it was too late for me, the damages and the adhesion growth had been done. When ablation, excision surgery finally became the way to go, it was not a viable option for me as now they could not get to those areas b.c of the adhesions the wrong surgeries had caused, perhaps had I been lucky enough to have been able to have the right kind of surgeries from the start, my outcomes could have been allot different.

I will do a follow up once I have seen this vascular surgeon.

Be well, I wish you pain free days,
Loretta

To Lighten the mood, my picture of PLEASURE, My grand daughter enjoying her birthday cake.

Endometriosis Surgery

Click the large red font title 'Endometriosis Surgery' to view a laparscopic excision surgery. If for some reason that link doesn't work, try the enclosed URL.

Endometriosis Surgery

This is a video of excision surgery.

Suzanne's Story, Skin Endometriosis Part 3

Life with Endometriosis

****Please remember,this is part 3 of 3 video blogs, this blog page posts backwards, it is best to start at the bottom and work ones way up.



Here is the last video so far of Suzanne's journey with Endo, it is unfortunately not over for Suzanne, however she walks with grace through it and is proactive in her care, which is the key to good health care and management of this disease.

It seems our journey is never ending, but through education we can empower ourselves to move on in the best most positive light possible, I know few who are as brave as the women who live their lives in the often severe and debilitating pain of Endo and Fibro, my prayers forever with each one.

Again, here is our final video.

Thank you Suzanne

Life with Endometriosis


I want to thank you Suzanne for taking the time to tell your story, and thank you again for letting me offer it here to others seeking information.
The more we can offer, the more we can be proactive in our journey through Endo.

Loretta

Endo VIdeo From Suzanne, Part 2

Suzanne's Endo experience,
Part 2

Suzanne's Story, Skin Endometriosis

Life with Endometriosis


In keeping with offering other endo stories, I would like to offer this one.

I am pleased to bring you a story by a very close friend of mine, endo has a strange way of bringing things and people into your life you may never have met otherwise, if lucky, those people will change your life too, but in wonderful ways.

This has been my experience a few times now, I have met through either my support group or others, women who I would find similarity's with our stories, or just something in their posts that would draw me to them. It is a wonderful thing that has come out of this for me. I hope all of you struggling with these issues find a good group you feel comfortable with and find friends who will help you through.

Here is Suzanne, she was given endo by way of surgery, her story is on a few videos, I will post part one here, look for others as we go.

Thank you Suzanne

Another Endo story

Life with Endometriosis


A Different View

Hello again,

Part of this site will be devoted to sharing others stories, along with mine I hope to offer other points of views, experiences, types, locations, journeys, and treatments.

Endo is not a one size fits all disease, far from it, in fact experiences and pain can be completely different from one woman to the next, while one may have been diagnosed with stage 4 and have severe pain, another can have stage 1 and experience the same amount of pain.
On the other hand, one can have stage 4 and rarely feel any pain, I know of a woman who only learned she had endo while having a tubal ligation, she never felt anything more than uncomfortable periods during her whole life. Endo is as different for each person as the person themselves, there is no telling what ones experience will be, nor what treatment may help, what works well for one can have little or no effect on the other, it is a hit and miss game.

Endo has been found on many places in the body, it is rare but has also been found in men and newborn baby's, both male and female! It is found in the reproductive area, on the bladder, kidneys, bowel, intestines, vagina, cervix, skin, inside the uterine wall, (called Adenomyosis) ovaries, even on the lung although rare and rarer but none the less has been diagnosed in the brain. No one knows how endo ends up in these locations, I will get to theories in another post, to touch on it however are a couple of theories, one being that we are born with it there already, while in utero endometrium cells are misplaced into areas they shouldn't be. Another is called retrograde bleeding where as cells get backed up into the fallopian tubes while menstruation, these cells then implant and grow, then bleed in cycles as we do.
Yet another is these cells get carried through our lymphatic system and implant along the way, other causes may be environmental poisoning such as from Dioxins found in our tampons and pads, as well as disposable diapers....all of these I will touch on in a later post.

I hope you find these stories from other women's walk with endo informative and helpful to you.

Loretta

HEALTH ALERTS POSTS

As a part of my blogging I will be sharing many links and articles about health alerts, scams, reports and anything one should be aware of that effects us as women, and our families. I do allot of reading and come across many articles, I will try my best to make sure they come from valid sources, but please check into the authenticity for yourselves, it is best to be safe. If you find something I have posted here to be absolutely false, or you have further info, just leave it in the comments box, I would appreciate taking a look at them. I hope you find this interesting and helpful. Loretta

All About Fibromyalgia

Life with Endometriosis
By LorettaB

FIBROMYALGIA SYNDROME

I have prepared this for those who may want to learn a little more about Fibromyalgia, or may have Endo and are experiencing body pain and fatigue that they are unaware of it’s origins. Many may be having many symptoms that they feel may not be related to Endometriosis, many of us suffer from more symptoms that don’t seem to make sense on that diagnosis alone.

Many women who have been diagnosed with endo and are prescribed Lupron and other such drugs for their endo treatment, the effects of these drugs alone can mimic Fibromyalgia and Chronic Fatigue Syndrome symptoms, but with or without these drugs the unfortunate reality is it very likely if you have severe and ongoing muscular pain it may be Fibromyalgia. Fibro effects many women who have endo, the reasons are still as unclear as the initial cause of fibro, or for that matter endo, but there seems to be a relationship that makes having one more likely you will have the other too. Fibro causes body pain and tiredness and although Lupron and these drugs DO carry all those effects as well, endo and fibro can be closely linked, so don't dismiss it just b/c you took Lupron for any amount of time.

link, at last someone believed in I was plagued with more ongoing pain and complaints that could not be explained by endo alone, and often thought and was looked at as being a hypochondriac by more than a few, when you have this many symptoms and no test reveals much of anything it tends to make you be seen in a suspicious light, and often leads to counselors instead of Dr's who may help.

I had so many different and severe pains and fatigue that I felt were wrong, things I could not easily explain away, this lead me to many GP's over the years, a select few mentioned fibro in passing but never really explained it, "You likely have Fibro but there is nothing you can do about it anyway" was the advise I got, others immediately challenged my emotional issues, asked about my relationships, home life, drug or alcohol use, past abuse.... and offered immediate anti depressants, even though there was little wrong there.

Finally during a visit with a new GP, he said he was very sure I had fibro and told me of the fibro-endo relationship, he was willing to at least look into it which made me feel better. I had heard little about Fibro in detail, beyond that it was in womens heads and was more a mental issue than a real and valid illness, so having this Dr say he thought I had it, coupled with the speed and ease of others offering anti depressants and asking personal questions I was concerned I may actually have some mental issue that was causing me to only think I felt this pain.
But I KNEW it was REAL, I knew with all I was that this pain was severe, it cycled, it caused me to not have the ability to carry out a normal day to day activities, separate and aside from the endo. One day I felt OK, the next I had problems getting out of bed and would feel I had been beaten or run a hundred mile race, when I had done nothing out of the ordinary the day before, all I wanted was to get to the bottom of it because I was starting to worry that I had some major disease that was eating away at my system, it had been a long time now that I suffered in this pain and I was getting really scared.

I was sent to a Rheumatologist, where in 2000 I was finally officially diagnosed with Fibromyalgia, I was counseled on the connection between fibro and endo as well as chronic fatigue syndrome, lupus, and a host of other illness’s, although no one wants to be told they have any illness, and especially another on top of endo that has no known causes, no cure and few treatments, at least it gave me something to start researching so I could take a proactive stand against it.
Having a diagnosis also helped me to settle in my mind that I was not crazy, nothing pleased me more than to know I had not started taking the anti depressants for nothing, so please don't just dismiss any signs, talk to as many Dr's as you have to and get to a Rheumatoligist for a definitive diagnosis, you never know what is really going on.



Not to long ago my body pain got the the point that it makes it very difficult to even walk, this can come on out of the blue, mostly when I am over tired or run down, my body will feel like I was in an accident and black and blue all over, hurting severely where no injury is present. I can't stress enough how bad this pain can get, when I had a flair and that one focused in the middle of my chest, it came on like a heart attack. This lead me to my local emerg dept where they did a stress test, ECG and all the other heart attack tests, only to reveal nothing. This pain had me bed ridden for days, breathing as shallow as possible and sleeping sitting up, in the end I was told that the fibro had effected the soft tissue in between my rib cages, I have had it several time since then. I get swelling, although I am told there usually is no swelling, possibly puffiness however, but I swell bad enough that I cannot wear rings when a flair comes on, and my feet can swell like pop cans making it impossible to walk, my lower legs swell to tree trunks and boots or shoes never fit, so yes, some can swell badly too.


In living with both Fibromyalgia, and Endo, as well as the other things endo has given me to deal with, I have had to make MAJOR changes to my life, and lifestyle. These have included changes to my diet, thinking, exercise and a host of other things. All these together have made living with these things tolerable. Shortly I will also post my health regime for you to take a look at. This will include the plan and vitamin therapy devised by myself and a Naturopathic Physician, I have studied this at length in order to devise a working plan. If you have any other questions, feel free to ask’ I hope this helps to answer some of your questions regarding this syndrome, and perhaps you will find it too explains some of your complaints and lead you to being diagnosed and helped through it.

Below are explanations, symptoms and links to sites that explain further, fibro has no tests that say you have it, the only was to have a diagnosis is through symptoms, history, and a couple tests they do finding painful "trigger" points throughout your body, there are 11 points they look for, I had all 11.
There are no blood tests or markers to confirm Fibro and the only one who can properly diagnose you is a through a Rheumatoligist,
NOT a general practitioner.

I have also provided more links to very good sites throughout this site, you are welcome and encouraged to refer to them for more information.

REMEMBER

The only QUALIFIED person to definitively diagnose Fibromyalgia is a Rheumatologist or Neurologist, never settle on anyone else's diagnosis.
***Fibromyaligia is often misdiagnosed and mistreated, it is best to have one who has studied this in depth looking into your symptoms.

Fibromyalgia Syndrome

Although increased sensitivity to pain is the main symptom of fibromyalgia, fibromyalgia syndrome and other types of chronic pain diseases form a family of overlapping syndromes. Therefore, even though the most common symptoms are pain and fatigue in muscles and tendons, often it is seen that those suffering from fibromyalgia will have other associated conditions and symptoms. It is because of these overlapping symptoms that fibromyalgia came to be categorized as a syndrome rather than a disease.


The Pain of It All

The pain of Fibro can range from aching, to severe and debilitating.

Fibromyalgia's main symptom is widespread musculoskeletal pain.
This pain affects the ligaments, tendons, and muscles throughout the body. Ligaments are made of tough tissues which attach to the bones in your body. Tendons help to attach muscles to your bones. Muscles allow you to stretch and flex various body parts.
Fibromyalgia patients often feel like they are aching all over; muscles feel sore, stiff, and overworked. Muscle twitches are also common in fibromyalgia, adding to the pain of the illness. Sometimes muscles can even feel like they are burning.Fibromyalgia syndrome is a very frustrating illness to have. This is because so few people truly understand the condition.

It may be difficult for you to relate your pain to your friends and family. To help them understand, ask them to think back to when they last had a bad bout with the flu. The memories of constant aches, pains, and fatigue may help them to understand what you are facing


A Chronic Disorder

Fibromyalgia is a chronic disorder, which means that pain can continue for months and even years. Unfortunately, fibromyalgia treatment is often difficult to come by and many people must suffer in silence. However, fibromyalgia pain generally does not worsen over time, and it doesn't cause inflammation of the internal organs or muscles.



Many Other Symptoms

Though pain is the foremost symptom of fibromyaliga, it is by no means the only symptom.

Among other symptoms, fibromyalgia sufferers often experience:

*sleep disorders
*fatigue
*stiffness, may be worse in morning
*irritable bowel syndrome

Though it affects millions of people throughout the United States, fibromyalgia is still one of the most commonly misdiagnosed illnesses.
Researchers, scientists, and health care providers alike, are often stumped by fibromyalgia and its symptoms, confusing it for dozens of other illnesses.
In fact, this is why fibromyalgia is often referred to as the Great Imitator: because it's symptoms mimic those of many other illnesses.

If you are currently being diagnosed for fibromyalgia-like symptoms, it is especially important that you be aware of the illnesses that are commonly confused with fibromyalgia.


HOW HELPFUL WAS THIS POST IN DESCRIBING THE SYMPTOMS OF FIBROMYALGIA?



Helpful Links

Therapy Insight: fibromyalgia--a different type of pain needing a different type of treatment.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16932722
CFS and Fibro, From Fatigued To Fantastic
http://www.endfatigue.com/Newsletter/sample1-interview.html

What is fibromyalgia? From the Arthritis Asso
All signs, symptoms and info
http://www.arthritis.ca/types%20of%20arthritis/fibromyalgia/

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

What is Endo?

WHAT IS ENDOMETRIOSIS?


I have lived the most part of my life with a disease called, ENDOMETRIOSIS, also called 'Endo', many have heard of this disease, but not many have a good understanding of it, this includes the women suffering from it, doctors, or the general public. Much needs to be done to get information about this disease out there so more people have an accurate and better understanding of what it is, and what the diagnosed woman is going through.

It is now a common disease found in women, one study indicates it may effect about 7% of reproductive-aged women or approximately 5 million American women alone. It can occur to any woman regardless of age, ( after puberty), childbearing history, or race. Some women may have any stage of endo and not even know they have it as they feel no pain at all, some may feel little pain yet others may find it painful to severely painful and debilitating.Endo is an enigma and the levels and degree that one women will feel vs another's makes it hard for others and even some Doctors to take it seriously or be attentive to it.

No one knows for certain what causes it, and there is no cure. Treatments are available, but for the most part, only temporary, it does come back, treatments range from surgeries to medications, but most medications have their own undesirable side effects, sometimes also severe and debilitating and may last for years and possibly a lifetime.

Endo is surrounded in myths, it is unfortunate that some doctors not fully educated in endo also believe and pass along these myths, some include,
* Endo is not painful, it is in the womans head, it is a psychological issue that counseling/anti-depressants/change of circumstances would cure.
* Endo is used by some women to gain sympathy or use for attention.
*

This is the definition of this disease, ENDOMETRIOSIS, also referred to as , ENDO.

Endometriosis is a noncancerous disease in which pieces of the lining of the uterus , ( called, "endometrial" lining)- grow outside the uterus. These pieces of the lining implant themselves and attach to other places outside the womb, they can implant on the outside of the uterus, Fallopian tubes, ovary's, bladder, bowel, intestines, muscles. It can migrate even further to many other parts of the body like the kidney, although rare, endo can be found on the skin, in scars, ( in abdomen through accidental placement of endometrial cells through C-section surgeries, or abdominal surgeries, lung, and even the brain, endo can migrate and attach almost anywhere.
When endo is found inside the uterine muscle, it is called adenomyosis, this too is extremely painful and causes many concerns, and can present themselves like fibroids. Endo has also been found in men, although rare.

There are a few theory's as to what causes endo, some research suggests the cells to the uterine lining are mistaking implanted in other places inutero,( while we are growing in our mothers womb), then grow to maturity and begin to cause problems sometime after when we reach puberty. Another theory is retrograde bleeding, where the lining/cells, are backed up through the Fallopian tubes and spill out into the abdominal cavity during mensis, tampon use, or by other means. Other theory's suggest an immune disorder, toxic and environmental poisonings, such as dioxins found in disposable diapers, pads and tampons made of materials other than natural unbleached cotton. In a well known study Reesis monkeys received dioxins and later were diagnosed with endo. There are many theory's, none which have been proved absolute.
There seems there can be a hereditary component as it is seen to run in families, more research still needs to be done.

Treatments are few, and none cure, some offer temporary relief, these may include;

*surgeries to remove found implants, often this often is only temporary as it may be nearly impossible to get every implant as they can be anywhere, hide under organs and muscles, and come in various color and sizes making it hard if not impossible to find, so what is left still cause issues, or it can come back.
*Another option may be GnRH class drugs, these stop the production of estrogen, which endo feeds off of. This offers only temporary relief and carries the risk of causing many, life long severe health issues, and once these drugs are stopped, most always endo comes back within 6 months to 2 years.
* Birth control pills, used to regulate one's cycles or stop them all together through continuous use.
* Other newer treatments in research stages.

Endo research is being done, but we, the suffering NEED to see it brought more out into the open, such as media, education, talks in schools and teaching more Dr's and the medical community, so more research dollars can be spent in research and finding new, SAFER, treatment options. MUCH more time and money need also be put into researching to see if it may be caused by toxins found in our products, water, chemicals, and/or from other places, everything must be considered.

If you are having painful periods, while slight discomfort is normal, severe pain, pain with intercourse, during voiding, and especially during the 2 weeks to, and the time of your period, you may have Endometriosis, it is best for your health and state of mind to bring this up with a doctor and be checked out. If you get nowhere with your doctor, please consider this, while it is HIGHLY unfortunate, there are still many myths attached to endo, such as women whining about their periods, being hysterical, looking for attention, etc....If you truly have pain, YOUR PAIN IS REAL. Many women find because of the stereotypes, they have a hard time getting their Dr's to listen, PLEASE KEEP TRYING! Some women have seen MANY MANY Dr's before getting one willing to go further in finding a diagnosis. The ONLY DEFINITE way to get an absolute diagnosis of endo, is through a laparoscopy, ( small incision through the belly button where a small scope is inserted to see your insides), or a laparotomy, (full abdominal incision to view the inside of your pelvic area and organs). Other tests such as ultrasound cannot confirm this disease!

These procedures are the ONLY way to a definitive diagnosis.

If you think, or know you have endo, and you need someone to talk to, there are MANY resources, such as online support groups filled with women suffering from this disease, all are more than willing to offer their support, or information to lead you to a diagnosis and support you in your journey.

I have 2 such groups that I have started and 1 more I co- support on that I am a very proud part of, offering my 25+ years of living with Endo with many other new or knowledgeable women. You can find many on the net, or you may try mine listed below.

This blog offers to you, my life journey through endo, my thoughts, life, treatments, ideas, things I have found help some, help the most, or were a waist of time, money and pain for me. It is a journal of hope, and faith that I can live with, and through this disease that has affected every aspect of my life, and millions of others.

I hope in your reading it comes to help you, educate, and make you feel you are not alone in your struggle.

Health"n"Healing,

Moonfire AKA, AdminLady.

SUPPORT GROUPS

Endo Lights
Offers ALL stages of sufferers, both diagnosed,
and undiagnosed but searching for information,
A safe, non-judgmental place to come to, to find support &
friendships, but most of all share life with endo and learn
in the most positive light.
BE AN ENDO LIGHT, AND KEEP IT OUT OF THE DARKNESS!
EndoLights-Support@yahoogrpups.com
ALL stages, both diagnosed and
undiagnosed, but searching to learn,
WELCOME!


Stage IV Plus Endo

A positive, and inspiring forum for those of us
who are deemed stage IV and end stage, or/and inoperable.
This is a forum for us who have suffered through so many treatments
surgeries and disappointments and now must face living
with this disease to the best of our ability's.
In finding positive approaches, inspiration, education,
and still seeking new research and hope......
This is the place for us to gather our strength and share
lives and possibilities in a positive light.

<stageivplusisus@yahoogroups.com>.
All stageIV+in-operable, welcome!




My Full Endo story is under October 07-06 post, you can find it to the right side drop down menu under PAST POSTS