My Story of Endometriosis

I was born in Sweden and lived most of my life there.

I got my period when I was 12 and my cramps were unbearable from the start. I told every gynecologist I ever came in contact with but they just nodded and made a note in their journal that I suffered from period cramps. They told me it was normal.

At 14 I finally got a really strong pain medicine prescribed called "Naproxen".  It was the first thing that ever helped me against my debilitating monthly cramps.  In high doses it was quite effective for me.

I used higher and higher doses of this pain medicine through the years and was able to contain the pain very well.  In addition I suffered from intense chronic migraine and several allergies.

As I moved to England at age 25 to go to school there, my uterus began to ache mildly on a day to day basis.  I instantly knew something was wrong especially since my mum had had surgery for endometriomas.  I also began to experience constipation, more severe food allergies and even excema.  I went to a gynecologist and said "I think I have a cyst".  She pressed on my belly and said, "no, everything is fine."  Later I went to the ER with stomach cramps and was diagnosed with IBS.  I was told, "everything is fine, it's just stress."

The following year I did my Masters degree in London, a highly stressful situation with 14 hour workdays. I would walk to school and spend the first hour that I arrived at school gasping for air due to pain, sitting on the floor of the studio I had booked to work in.  I was assuring myself that "everything was fine".

Then, by chance I saw a TV program about an illness called Endome...something.  (I didn't realize that's what my mum had) I said to my boyfriend "I have that".  He said, no way.  I said,  "I have it".  Then I continued to ignore my health and finished my masters degree.

At a routine visit in Sweden a gynecologist did an ultrasoud on me and said.  "you have two big chocolate cysts, I will book surgery for you next week".

My life changed from that second and it has not been the same since. I was instantly devastated as I knew this would effect my fertility negatively an dI was very scared of having pelvic surgery. Little did I know that my coming infertility would turn out to be the least of my troubles.  But as I came out from the gynocologists' office I decided to stop eating refined sugar.  No candy or ice-cream no more.  I had just read about the negative health effects that sugar can have.  Personally, I've always been a sugar-addict and I am sure that sugar feeds endometriosis.

I moved to the US and refused to go through surgery due to my paralyzing fear of it.  Instead I went to this super expensive chinese acupuncturist.  He gave me herbs and treated me three times per week for a year.  I steadily got worse, and worse.  During this time I also changed my diet to an Endo-diet (see list below), I did Qi-gong daily and Yoga three times per week.  My pain levels became more chronic and I went for regular ultrasounds that showed my cysts growing.  At 8 cm per side of cyst mass, I gave up.  Still fearful of surgery I drove from Los Angeles to Phoenix to attend a support group meeting for Endo sufferers.  There I met some of the most wonderful 
endo-sisters.  They had all done many, many surgeries for endo and they encouraged me to do surgery to avoid cyst rupture or getting the ovaries twisted-a potentially life threatening situation.  I decided that if they could all do surgery, so could I.

Upon return I sought out an endo specialist and plunged into surgery.  This was in 2002. It was an absolute nightmare, as I had suspected.  I had a severe complication and my recovery was painfully slow and difficult.  Sadly upon my first follow up after healing from surgery, about a month after surgery, I had two new fresh endometriomas growing on my ovaries.  I then knew that surgery would not be a great solution for me.  I simply had to find another way.

As a result of my surgery I also got daily bowel cramps that left me unable to breathe for a few seconds about 3 times per day.  The pain level of these cramps were extremely intense but because they only lasted for a few seconds I was never too worried or effected by this.  It only presented a social awkwardness if they occurred in public as I had to bend forward and I'd often find myself in convulsions in order to handle the intensity of the pain.  This particular pain ended summer of 2006.  I still don't know what caused it and I don't know what healed it but I know it started as I opened my eyes after the surgery.  The surgery also brought another more difficult chronic pain into my life:  my "right-side-pain".  The doctor who did my surgery told me it was constipation.  I told him that was very surprising to hear since I go regularly three times per day to the bathroom.  This right side pain essentially took over my life.  For about two years the pain lived with me day and night.  The intensity was most of the time on a 7 on the pain scale (0-10).  So, quite difficult to live with.  It made it impossible for me to sleep an night.  My doctor explained that our natural pain killers the cortisol goes down during the night so that's why our pain intensifies during the night.

I realized quite fast that I was facing one of two roads:  either a road of taking morphine every day.  This was a road I knew all too well from the women in my endo support group that I had started in Burbank.  I didn't feel that it was a great option.  The other road was to follow the difficult advice I had received from an herbalist lady in Canada.  She had said to me that any painkiller is hard for the liver, and she believes endo was caused by a weak liver that is no longer able to get rid of toxins and estrogen as effectively as it should.  Her theory made logical sence, as does the morphine option. But her theory showed me an open door of a possibility for healing.
The idea was that once the liver is strong again, the endo itself will disappear.

So, I made the most difficult choice I've ever done in my entire life.  I decided to cut all pain killers.  Yes you heard me, cut all of them out.  Every single one.  I actually started crying when I decided this.  Tears of utter fear.  I know exactly what I was 
putting myself up to.  But I am determined and I had reasoned my way to this and decided that for me, this was definitely worth a try.

Once I had somehow survived two periods without taking painkillers I knew that the intense suffering I had experienced could not be wasted as a two month experiment that didn't work, I had to press on.  Still today about 4 years later I am struggling with my period crams.  But instead of a 5 day and night grueling, nightmare experience my 
periods are now a 24 hour difficult time.  So, I have seen a lot of progress.  I would never be able to recommend  anyone else to take this road because the amount of suffering that I experienced could not be wished upon anyone.  No pain scale can ever accurately describe the pain I went through.  If I say 14 on a scale from 0-10 I'd be minimizing it.  I'm not quite sure why my body didn't actually pass out, but unfortunately I always stayed conscious during my periods.  I think only a person who usually medicates heavily during the period, and then suddenly stops to do so could understand what I went through.

In addition to the horrid period cramps, I had to endure another 20 days per month of intense right-side pain.  (leaving about 4-5 days every month of only mild pain).  This right-side pain was enough to drive me insane.  It was like having someone constantly poking me with a knife in my side. I continued taking herbs and meeting the women in my support group every month.  Thanks to one of the girls in my group I heard about the concept of physical therapy.  I instantly called around to find a physical therapist who could help me.  I found one and after going to her three times per week for a year and in addition using a tens machine every day that year, I finally saw results.  I was able to stop using my tens because my right side pain was all but gone.  My period cramps got better but still hit a 7-8 on the pain scale.

I have now become good friends with pain.  Nothing scares me anymore.  I have only taken one pain pill these last 4 years.  No migraine in the world comes close to being as bad as my endo pain.  I have done dental surgery and a LEEP and not taken any pain meds afterwards.  It wasn't a breeze but again, nothing like the endo pain I've experienced.  I truly feel like I am about 700% stronger as a person today.  Not only because I know how much pain I am able to endure, but also because I have so much confidence in my own abilities to find a way in this world.  I feel that healing endo on 
my own has been an incredibly empowering experience.  Of my 2 endometriomas, who were both over 25mm originally, only one small remains (11mm in diameter).

Today my struggle continues.  Though I'm pain free all but 24 hours a month, my endo and my choice of treatment is still very much a "high- maintenance" situation.  I spend hours a day focusing on my health. I cook all of my own food. I avoid petro-chemcials and parabens as much as I can.  Down to what toothpaste and make up I use, I am always focused on health.

During these 5 years of struggle I have turned to many natural health care providers and tried some different natural approaches to self- healing.  But in the end I have found that no one understands my body and my situation better that I do.  I have also found that I know more than most natural health providers and often end up educating them while paying them for their time.  So, I think the best way for me is to continue to read and learn and experiment on my own.  However, I truly wish there was some good research and some affordable natural health care for all endo sufferers so we all 
didn't have to shoot in the dark like we do.  The EndoNatural online support group has been an incredible resource for me too.  The collective knowledge and experience of the many women there who live with endo and seek healing through natural therapies has been amazing.  I'd also like to add that that no one does this without some level of support from the western medial system.  I have always gone to all my regular gyno exams and I've never even heard of anyone who has stopped doing that.  The western medical system has great strength.  How else would I know my endometriomas were gone and shrinking etc.   For me I think it's best to use the good parts from both systems.  Although it is worth noting that the two do collide sometimes.  For example, most prescription drugs effect the liver negatively.  On the flip side though, most prescription drugs have a natural herbal option.  Ultimately I feel that it's been extremely empowering to take control of my own healing instead of being 100% in the hands of western medical opinion and choices.

I should mention that I've tried to conceive since the surgery.  I would probably consider IVF if I could afford it and if I could do the version where no drugs or hormones are used.

This is what I do for maintenance and my continued healing in a nutshell:

I do fish oil (but only once a week or I get too estrogenic for some reason...)
Wheat grass (twice a week)
Magnesium supplements
folic acid drops (10mg/day)
B-12 drops
Herbs:  Echinacea, lemmon balm, taheebo, ginkgo biloba, maitake 
mushroom, cat's claw (Clarkia about 3 days per month).  I take these 
on a rolling schedule, so not all at once.   Occasionally gentian and 
chinese bitters)  Once a month I take cilantro drops and chlorella to 
detoxify more deeply.  I sometime drink bentonite clay for a week to 
cleanse too.  I have also done flushes to fluch out gallstones about 
10 times and gotten rid of about 3000 stones.  (verified vial lab)

Only eat organic vegetables, fruit and organic chicken, fish, some eggs, and brown rice.  I eat no sugars, crackers, grains or dairy.  None of it.  (forget about candy or ice day perhaps...)

I do meditation and active imagination daily (ca 1 hour including  writing it down).
I go to yoga three times per week.

Massage:  internally (vaginally)1 day a week, thighs 1 day per week or sometimes more stretches: 1-2 hours per day
Y-dan 20 minutes per morning

No pain killers or other prescription drugs (to support liver strength)
Epsom salt bath 1 time per week

Chiropractic treatment, 1 time per month ($65).

Physical therapy 1 time every three moneths ($75).

Psychotherapy once a week ($15).

I also struggel to get to bed early.  I've read that it's important  to balance the hormone system.  10 o'clock should be ideal.  But I  tend to stay up till 11 unfortunately.

No caffeine (not even green tea).

No phytoestrogenic herbs.

Make up, toothpaste, champoos, lotions etc, totally natural and 
paraben free.  Natural pads.

by Lisa Eriksson