Endometriosis

Update: June 21, 2014:

I wrote this about a month ago, but my body got worse and would not work with me.  So I am finally getting it out there today, while I have a little energy.

About a week after I wrote this I got a call from my OB/GYN that I got an earlier date for my surgery!  It is now on July 30, 2014.  I was ecstatic to say the least.  A big "THANK YOU, GOD!" went up to the heavens!  Now it is only one month and nine days away!  The early date was such a miracle for me.  Many people were praying for an earlier date.  I was told that the earliest it could move up was to was late fall when I put my name on the cancelation list. I almost thought I misheard the receptionist and had to ask again!

I know that many of you have been praying for me and my family.  And some of you have brought meals, or words of encouragement.  I just want to thank you from the bottom of my heart.  These small or large gifts have been a huge blessing on my heart and soul.  It is hard to put it all into words.

I am so looking forward to this surgery, and getting these organs removed.  They have caused so much trouble.  I am so ready to see them go.  Hopefully I will receive some relief from all of theses symptoms.  I realize that menopause will come as a result, but trust me, only having menopause will be a treat!  I am also looking forward to being able to regulate my hormones.

I am hoping and praying the surgery and healing goes well, and that it will take my endo away.  But also realizing there is still a chance that it will come back.  Expectant potential joy!

I need to rest now, so I should go.
Peace to you all,
Andrea

Endometriosis

Just over three months ago, February 19th, 2014, I was officially diagnosed with Endometriosis stage three (out of four stages) by a laparoscopic surgery.  This is the only way to get a complete diagnosis. During the laparoscopy, the doctors cut two small incisions about half an inch long, one in the belly button and another about 3 or 4 inches down. These incisions are called key-hole entries. Using these incisions, the surgeon puts in a camera and different tools needed to perform the surgery.  Once in, they inflate the abdominal cavity. Now there is room to look where the endometriosis is located.  The surgeon can move other organs around to get a good look at all the places endometriosis could be.  A diagnoses takes typically 5-8 years. For some it's even longer. Through research and looking back on my life, I have probably struggled with this, to some degree, since I was a teen. It has become significantly worse in the last two years.  Especially since last summer when the cow ran over me.  The physical and emotional trauma put a lot of stress on my body.

What is endometriosis?

It is NOT PMS. It is not just a bad period or "in your head".  Endometriosis affects 10% of women in child bearing years or an estimated 800,000 women in Canada.  It is also known as the invisible disease.  It is a complex disease that affects  women differently.  It is a potentially debilitating disease.  On rare occasions, it can also be found in males.  I don't understand that one!?

Endometriosis is when the lining of the womb starts to grow outside of the womb – in places it shouldn’t be, such as around the fallopian tubes, ovaries, outside of the uterus, bladder, bowel, ureters, inside the abdominal cavity and behind the vagina.  These are the main locations, rarely endometriosis can be found on the lungs, appendix or even on the brain.  It is rarely talked about because of the reproductive taboo but gaining more recognition as women are speaking out.

'This [endometriosis] hurts because this material growing outside the womb continues to act as it would during the menstrual cycle.  As the monthly cycle progresses the tissue grows, shedding and bleeding as it would during a period but having no where to go it irritates the areas where it is trapped causing severe chronic pain. This pain is persistent month on month, each and every day as the tissue which would normally escape during a period has no where to go' ( endohope.org).  Pain can also be caused from adhesions, a chemical "glue" that can glue organs to each other.  Another cause of pain is from the swelling and inflammation that happens as a result.  Other pain can come from the endo rubbing against other organs.  There are so many ways that endometriosis can cause pain.  But it doesn't cause pain for everyone.

What does this feel like?

There is more at stake then just the endometriosis.  Along with it can come chronic pain which can cause depression and chronic fatigue.  Endometriosis can affect different organs and cause pain there too.  For example, endometriosis on the bowels can cause constipation.

Endometriosis feels different to different women.  Some deal with the extreme pain all the time.  There are also women  that don't have any pain at all.  Some women only experience the pain during and around their "time of the month".  There is a whole range of pain.  Many women only find out they have endometriosis when they are trying to get pregnant, and find themselves dealing with infertility issues.  Endometriosis covers 43% of infertility.  The pain does not necessarily correspond with the stage (1-4) or the amount of endo you have.

Symptoms:

The most common symptom is pelvic pain (mild to severe).  The other symptoms of endometriosis are  lower back pain, rectal area pain, pain down the legs, painful periods, painful sex, urinary urgency/frequency, pain before, after or during bowel movements, rectal pain, constipation, diarrhoea, chronic fatigue,  pain from standing or walking, adhesions, cysts, ruptured cysts, autoimmune disease, light-headedness, fainting, and weakness.  You don't have to have all these symptoms to have the disease.

The symptoms of Chronic Fatigue are impaired memory or concentration, post-exertional malaise- where physical or mental exertion brings on prolonged, extreme exhaustion or sickness, unrefreshing sleep, muscle pains, joint pains, headaches or migraines, sore throat - frequent or recurring, and tender lymph nodes. Other symptoms that can come with chronic fatigue are IBS, abdominal pain, nausea, bloating, diarrhoea, chills and night sweats, brain fog, chest pain, shortness of breath, chronic cough, visual disturbances - blurring, eye pain, dry eyes or sensitivity to light, allergies or sensitivities to foods, odors, noise or medication, difficulty maintaining an upright position- dizziness, fainting, irregular heart beats, or balance problems.  Depression, irritability, mood swings, and panic attacks.

Wow, that's a long list.  I'm glad that I don't have all of those.  I have most of the endo symptoms, maybe 90% and about 85% of the chronic fatigue symptoms. Lately I've also been very weak and shaky.

On good days I can be up for three hours before I need to rest or sleep again.  If I sleep or rest for 4 to 6 hours I can be up for another 3 hours. On bad days I only get three hours. On worse days it's less than that.  Because endometriosis is such an unpredictable disease it is hard to know what I'll be feeling like day to day or hour to hour.  Which makes planning, and committing hard.

I would sure love to be up and around and doing social activities with my family and friends, but right now, I just have to rest and trust God.  Since my cow injury, God has been giving me Psalm 46:10a  "Be Still and Know that I am God." .  He has given me reminders of this verse at least weekly for the last year.  He has also given me other verses on rest, peace, healing and his love for me.  I love hearing and reading those verses.  Most of the time I am very encouraged by them.  I know I could not make it through this long journey of illness and healing without him.  Without his presence and encouragement.  Even when I can't get out of the house, or can't get out of my bed, I have Him here with me.


Causes of Endometriosis:

There are many theories about the causes.  None of these causes are for sure though.  For everyone with endometriosis one or all of these may be relevant.  Some of these may seem more like  a symptom then a cause, but this is what the research is saying. Who knows, maybe in another year or so, these will have all changed.  This is what the authorities are saying for now.

1.  You are born with it.   At first this just seems crazy.  Have you ever heard of a baby with endometriosis?  I recently read that there have been found cases where it is discovered in babies and toddlers. What could cause this?  They don't even have a period at this age.

2.  It is hereditary.  If your mom, sister, aunts, cousins, grandmas, etc, have endometriosis you could be next in line.

3.  Prolonged stress.  Prolonged stress can weaken your immune system.  This makes it harder for the body to fight or remove toxins.  These toxins could also be only assumed toxins by your body, but continue to grow as your body can't get rid of them.  Once started the endometriosis itself can grow and produce more growths, chemicals and estrogen.

4.  It is an auto-immune disorder.  This is so far only being debated.  It is not proven.  Many health providers, specializing in this disease seem to pick a theory, research it and believe in it/ defend it.  This goes for most of the causes, since none seem to be a constant answer.  If they knew the definite cause, it would be easier to find the cure.

5.  Retrograde Menstration.  This happens when it comes time to have your period, instead of the lining leaving your body, it goes back up the fallopian tubes and deposits on other organs.  These deposits then grow and bleed along with your regular period. 

6.  Irregular periods - Getting your period early, a longer period, a shorter cycle, extremely painful periods, spotting or bleeding in-between periods.

7.  Hormone Deficiency or Imbalance.

8.  Getting pregnant for the first time later in life.  Again, this is only a theory.  Sometimes women only find out they have endometriosis when they are dealing with infertility, miscarriages, etc. Is this a cause or is just the timing of the diagnoses.  It is becoming more popular to established a career before starting a family.  It is also said that the women's body needs to get pregnant earlier rather then later to go along with our natural body rhythm, and to keep our body balanced with hormones etc. Endometriosis can be found in 24-50% in women who experience infertility.

Is there a cure?

The simple answer is no.  This is a chronic condition.  Having said that, there are ways to help with the symptoms.  Some treatments work for some women, and the same treatment may not work for other women. There are different levels and stages of the disease.  If all the endometriosis is found during the laparoscopy and all can be removed, there is a greater chance that the endo will not come back.  How come some women deal with recurring endometriosis, and other women have one surgery to remove the growths and it doesn't come back?  One reason is that endometriosis can be undetectable by the eye because of its microscopic size, thereford these growths will not be removed and continue to grow.  Not only do they continue to grow, but they also produce like a period.  These growths also give off a chemical that "glues" organs together, an adhesion.  I am on some endometriosis groups on Facebook.  One lady commented that, "it was like pouring crazy glue into your abdomen and seeing which organs stuck together".

After laparoscopic surgery some women experience 5-20 or more years without recurring endometriosis .  Some women need to have yearly surgery.  Of course there is a whole range in between those time periods.  There are also women like me, who's surgeons aren't able to remove it all with the first surgery, without damaging other organs.  For us women, we have to try other therapies, mostly medications, to deal with the endometriosis before having another laparoscopy to remove more.  It would be so nice to have a medication that actually worked of endometiosis.

Stages of Endometriosis: (Wikipedia, endo resolved, endohope, etc)

The stages don't reflect the severity or pain of the symptoms.  The stages let you know how much endometriosis you have and where it's located.  

Stage 1 (Minimal)
Findings restricted to only superficial lesions and possibly a few filmy adhesions.  (These adhesions can be like scar tissue.  They can stretch from one organ to another.)
Stage 2 (Mild)
In addition to the symptoms of stage 1, some lesions are present in the cul-de-sac (the abdominal cavity between the rectum and back of the uterus).
Stage 3 (Moderate)
In addition to the symptoms of stage 1 and 2, the presence of endometriomas (growths) on the ovaries and more adhesions.
Stage 4 (Severe)
In addition to stages 1-3, large endometriomas, extensive adhesions.

Endometriomas (cysts) 2 cm and larger need to be removed by surgery. Hormone treatments will not remove the full cyst.  If not removed, this can lead to painful cyst rupture and internal bleeding. Endometriomas can be misdiagnosed as ovarian cysts, which also may or may not be present with endometriosis.  Chocolate cysts can occur in stages 3 and 4.

Women who receive treatment in stages 1 and 2 have a better chance for healing and to regain their chance to have children.

Locations of Endometriosis:
Pelvic cavity - Most common - Ovaries
     Inside (Adenomyosis) or outside of uterus, ligaments supporting uterus
     Fallopian tubes 
     Cul-de-sac, 
     Intestines, 
     Bowels 
     Other organs in abdominal cavity
     Urinary tract
Lung and chest cavity
Sciatic
Skin
Appendix


Treatments:
These treatments aren't  a cure.  The effectiveness of these treatments depend on the stage, amount and location of endometriosis . Endometriosis needs a very personalized plan.

1. Wait and see if it goes away.  In the meantime take pain medication for the symptoms. Anti-inflammatory drugs are used to help relieve pain due to inflammation with the endometriosis.  Once regular Tylenol and Advil don't work, it's on to higher doses of each- Tylenol 3 and Naproxen or Vimovo to name a few.  If these aren't working, it's on to harsher meds that can do damage to your body, like morphine and morphine related drugs. Sometimes we need to add Gravol for the nausea, and that really puts you out. Tylenol and Advil and their stronger counterparts already cause fatigue and constipation. So they are not without their side effects either.  Usually endometriosis does not go away on its own.  There are many drugs that I've read about or heard about so I won't name them all here.  Going the medication route can be a downward spiral.  Often other medications will need to be prescribed to deal with the side effects. I'm lucky my doctors don't want to put me on a lot of meds.  However, sometimes it's the only option left, and you just got to do it. Whatever makes you feel better enough to manage your symptoms.

2.  Hormones - the first course of action with hormones is birth control.  There are many kinds and doses for you and your doctor to chose from.  This method is to stop your period and that in turn will stop the cycle of endometriosis. It tricks your body into thinking its pregnant or in some cases, in menopause.  This did not work for me.  I seemed to have a light period all month long, and then get a normal period when it was due.  I bled through the regular bc.  I tried many different kinds.  Then we tried a progesterone only birth control, which seemed to help a little, but still had breakthrough bleeding.  
     Another hormone method is the GnRH analogs (Gonadotropin-releasing hormones).  These medications are intended to relieve pain and reduce the endometriosis.  It suppress estrogen production from the ovaries by inhibiting the pituitary gland.  This puts your body into a chemically induced menopause.  The medication is supposed to calcify the growths so they will be easier to remove.  The side effects from this kind of medication are many, from menopausal symptoms to estrogen deficiency symptoms.  I will talk more about that later.  
     The one I was put on was Lupron.  From reading many, many reviews online, there are many terrible experiences with this drug as well as some positives.  For me it has been a bit of both.  I took the drug Lupron, in shot form, into my butt, once a month for three months.  Lupron is a strong medication used in women with endometriosis to stop the estrogen, and used in men for prostate cancer to stop testosterone. The first month, the estrogen surges for about two weeks until it drops off.  Usually this two week period is pretty awful.  But this was so good for me and my body, because I am estrogen and progesterone deficient, something I learned through this process.  Although I was still in pain, I got a lot of emotional and physical benefits. 
     As the two weeks finished, I could feel the estrogen and all the good benefits melt away.  They were replaced by many negative side effects.  I can go into more of a symptom list later.  Now I am nearing the end of my three months.  Having less to no estrogen is wreaking havoc on my body, but if I have more estrogen the endometriosis gets worse.    Estrogen feeds endometriosis.  Sometimes women can take an ad-back therapy.  This is a hormone pill that puts a little estrogen back into your system to help with the symptoms.  However, my OB/GYN does not want me to take any estrogen because the severity of my endo.  We are trying to diminish the endo for the next surgery.

3.  Pregnancy - a short term fix, and you get a baby.  This could be a positive or a negative depending how you look at it.  For us, this was not an option.  We already had that fixed.  Ironically, a lot of women with endometriosis have a very hard time getting pregnant.  The endo will usually come back after the pregnancy, or when you are done breastfeeding.

4.  Surgery- Laparoscopy or a Hysterectomy.  The laparoscopy is the only way to accurately and definitively diagnose endometriosis.   It is also a procedure to clean out the endometriosis, by cauterizing or excising (cutting out) the growths.  A hysterectomy is not as commonly done as it used to be.  This form of treatment is more of a last resort.  It is a removing the pelvis/reproductive organs.          
     The kind of hysterectomy you need should be discussed with your doctor.  The partial hysterectomy will remove your uterus, and maybe one ovary.  The total hysterectomy takes out the uterus, both ovaries (oophorectomy), and most likely the cervix.  A radical hysterectomy removes all of the above organs plus the vagina.  Both ovaries need to be removed if the endometriosis is anywhere on the outside of your uterus as it will continue to produce, and cause more endometriosis.  The cervix is usually removed to prevent cervical cancer.  So far, I am scheduled for the total hysterectomy.  I'd gladly remove the cervix to prevent cancer.  I really don't want to have cancer on top of all this, if I don't have to.

5. Diet - this seems to be controversial, as some believe in it 100%, and others don't. I think the idea is great.  I also think that the people it works for, believe that it will work for everyone.  Too bad this is not the case.  Diet only works for about 80% of women with endometriosis.  The endometriosis diet consists of gluten free, avoiding wheat, red meats, concentrated refined carbohydrates, refined sugars, caffeine, milk, chocolate, dairy, eggs, fried foods, soy products, convenience foods, additives, preservatives, and alcohol.  You will need to add in more vegetables, fruits, greens, omega 3 products, fibre, seeds, green and herbal teas, nuts, vitamins and minerals. This is a hard diet to follow, but there are more and more recipes posted on websites like Pinterest, as well as cookbooks that are making it a lot easier.  
     The alkaline/acid diet.  This diet is about finding out how much acid is in your body from the foods we eat, to the lifestyle we lead. Stress also makes acidity rise. If you have too much acid in your body, the body is more susceptible to diseases, including chronic diseases, and cancers.  High acidity makes a good breeding ground for these unwanted issues. Some people with cancer have beaten it with this diet or with a combination of diet and medications, chemo, etc.  There are many websites on this diet.  This diet is a lot like the endo diet.  I am currently trying the alkaline diet. It is supposed to be good for healing the body in general.  So far I haven't seen a vast improvement of my symptoms, but I've only been doing it for two weeks.  A few good websites and places to get recipes that I've found are energizeforlife.com , alkalinesisters.com , and Pinterest. If this diet works I'll keep going for a while, but if I don't see an improvement it will be hard to continue as I am eating very restricted and completely different than my family, which makes it hard.  Especially when I don't have the energy to shop for the specific groceries or make these meals.

Websites:
There are so many websites out there, but these have been a big help to me.  I'm sure this list will grow as time goes on, but here it is for now.

For Endometriosis:
wikipedia.org
endo-resolved.com
endohope.org
nezhat.org
Cureendometriosis.

For Diet and Health:
energizeforlife.com
alkalinesisters.com
Kriscarr.com
Facebook: the Gluten-Free Homemaker

For GYN:
GYN Professor John Studd studd.co.uk

What is next for me and my endometriosis ?

At this point in time I still have 8 months to go until my hysterectomy. Eight months?  Really?  I can't imagine waiting that long yet.  More realistically, how my family is going to last for that long with a limited Mom. Most days God gives me peace. It is harder when I look at the big picture, and think about how long 8 months really is.  Some days I am more desperate when my symptoms are worse, and I have to stay in bed most of the day.  Wanting so badly to be going to Church, spending time having fun with my family, and seeing friends I haven't seen for awhile.  I know that I have missed birthdays, graduations, family times, and major events.  For those of you, that I've missed your function, please know that I still care.  I am thinking and praying for you.

About two weeks ago, I felt that I really needed to try going the health alternative route.  I needed to try something, almost anything to help me over the next eight months.  So I went to see a man that has helped me in the past.  He deals with natural remedies.  He is not a natural path, but someone that has helped me through sickness before. I was going to see him to start a hormonal cleanse.  This cleanse is also good for the alkaline/acid diet.  He thought that I was too sick to go on the cleanse in the beginning, so he put my on a strict healing diet.  Now I will be starting the cleanse in the next week.

He also gave my vitamin D and magnesium to help with constipation and inflammation. It helped with the constipation.  As the days went on I started feeling more weak and dizzy.  It got so bad that I almost went to the hospital.  I felt like I was going to faint.  My eyes felt dark around the edges, ringing in my ears, a kind of whooshing sound in my ears, nausea, diarrhea, muscle weakness and extreme fatigue.  I had to lay completely flat on my bed. Even raising my head on the headboard made me feel more faintish.  Mark finally figured out it was the magnesium and I stopped taking it immediately.  It started getting better but it took about five days to feel like it was gone.  It was either an allergic reaction to a higher dose or an overdose.  Now I'm on a way lower dose and it seems fine.

After talking with my other doctors, I was strongly encouraged to go see my OB/GYN to see if he could move the surgery up to a sooner date, because my body is not tolerating the meds, lack of hormones, or this disease very well.  As I was close to my OB/GYN's office I just went in to talk about seeing the dr.  Apparently he has done all that he can until the surgery, so he can't see me.  I was told one of his staff would call me to go over the medications etc, but haven't heard from them.

The receptionist told me my other two options. One was to go to the ER.  If they thought my case was bad enough they could do my surgery as an emergency.  But I never know how bad I have to be before I go in to emerg.  I'm sure that there are some women with endometriosis with more pain then me, and people without endometriosis. The Lupron I am taking seems to be helping for the pain for the last couple weeks.  Although I am starting on a new medication at the end of the month, so we'll see how I feel on that.  The Lupron can only be taken for three months at a time.  Once you have a break from it, you can do another three months.  The use of Lupron can go for many cycles.  However the use of Lupron is very controversial right now, because of all its side effects.

For me right now, I am more concerned with how weak I am.  Having no to only a little bit of estrogen.  Estrogen effects many other organs.  I am learning a lot about hormones, and how much impact they have on the rest of your body.  Only to say that they are also affecting my digestion, and I can't eat too much before I feel full, which in turn doesn't help my weakness.  My body shakes a lot on the inside and often visibly in my hands.

My other option about the surgery is to get another OB/GYN.  The receptionist suggested Dr. Heather Grant.  Apparently she is really good, and is newer to the Abbotsford area.  This means that she has a smaller clientele so far, and may be able to see me sooner and do the surgery sooner.  I just feel a little bad leaving my OB/GYN.  He is a really good doctor, very knowledgable, and kind, but very busy.  He has helped me out a lot.  But the receptionist says that you have to do what you can in your circumstance, and he won't mind.  So back to my GP I go.

At my GP, Dr. Clifford Moodley said that he is also referring a lot of his patients to Dr Grant.  He has only heard good things about her from patients and his aunt.  From the reviews that I've read online, she is very good too, although maybe late for some appointments.  We have been going through doctors in the past couple years.  The first two retired. :( Then last fall we saw Dr Clifford Moodley.  (I say Clifford because there are two other Dr. Moodleys, all three are in the Garden Park Towers.) I am so glad that we found him.  He was a replacement for our last doctor.  He is young, so he won't be retiring soon :). He is also very kind and friendly.  Even though he is busy, he takes the time to talk, listen and answers questions, without acting like he's in a hurry to leave.

So now I wait.  Hopefully not 8 months. I am hopeful again.