WeAreEndo.org - The Social Support Network for People Living with Endometriosis

Liz

Things I currently do:

Heat

Laparoscopy x 7 ( most recent March 16, 2009)

TORADOL-HUGE HELP

BC-FEMCON FE ( continuous really helps me out! )

Prescription Pain Meds ( not very often, my intestines and bowels are not fond of them)

Counseling

Walking

Aerobics

Swimming

Oh and the BEST: TENS UNIT....AMAZING...has SAVED MY LIFE

I am sure I do other things but these are the things I do the most!

16 months ago

Brook

Things I do/done:

Laparoscopy x 2 (most recent 8-2007 this time worked fab for a whole year, what a great year!~yah!~downer it is back and worse, reminds me lossing/gaining weight)

Prescription meds (locricet, toradol) Aleve if I take I want to take a ton of the stuff

Accupuncture ( sometimes this made it (pain)  worse, odd cause otherwise it worked wonderful for migraines and /hip knee issues) also accupunture tags and metal ball stick ons, they are not as consistent as they are with migraines.

Supplements vitamins~herbs

Heat love my heating pads

Hot shower

Laying down with lots of soft pillows/mattress

Diet restrictions, no dairy, no caffine and suppose to limit gluten which I have had trouble doing that part, no chocolate

16 months ago

Energizer

-Heat. Heat. Heat. I own 5 Heating Pad plus 1 EndoFemm

-Prescription Painkillers: Tramadol is my life saver. Percocet for emergencies. Also on Depo Lurpon, Premarin for add back, and Amitriptyline.

-High Fiber Diet: Limit beans, broccoli, high gas items

-Partial Endo Diet: No red meat, Fatty dairy, Limit Caffeine, Soda, Fried or Fast Foods.

-Supplements: Calcium, Fish Oil, Flaxseed, Multi-Vitamin

-Hot Baths. Sometimes Oatmeal baths for skin

-Mental Therapy: Breathing exercises

Have done:

-2x Laparoscopy with no pain relief

-Endoscopy and Colonoscopy

-Physical therapy and Kegel exercises.

-Mental therapy: Therapist

-Endo Diet: No Meat, Dairy, Caffeine, Wheat, tried lots of these.

-Supplements: Vitamin B12, Vitamin E

May have done:

-PNE Nerve Stimulation Evaluation

-InterStim Device implanted for Nerve Stimulation

16 months ago

Sara

for PAIN:

-consistent use of progesterone cream (www.oasisserene.com) every day except when I bleed.

-either heat or cold (if I am using cold it means it hurts worse)

-watching TV

-just started acupuncture

-(one laparoscopy back in 2005)

for GI stuff:

-avoiding gluten, soy, almonds, dairy, yeast, sugar

-digestive enzymes, probiotics

for FATIGUE:

-it took a while, but I accept now that I need 8-9 hours of sleep 3 weeks a month, and 9-11 hours 1 week a month.  I make it a priority.

for EMOTIONAL stuff:

-talking to friends

-painting my feelings/fears

-journaling, though this is getting tedious

-crying!!

-thinking about the things about my body/life that are healthy and good

16 months ago

Gina

All i can do now, is take a hot bath. Nothing else really helps, i can take any asprin products, i have no pian releavers, and i would love to bead to reduse my pain but it makes it worse. in the past, i had 3 surgerys, im about to have another one April 16th. I went through many test to find the cause of pain but cant find nothing.

16 months ago

Ashley

I am really impressed with these tips.

My Pain Relief habits:

- Hot Baths, Heating Pad, Soft pillows behind my back.

- Pain meds when it is bad enough. Though asprin is useful when it is mild pain.

- Depo has worked for 2 years, but weight gain and bone loss may neccessitate that I change this soon.

- I had a Lap when first diagnosed, but it only helped for 6 months. 2 rounds of Lupron but those only gave relief for 6 months.

- I am currently exploring the Endometrosis Diet. I bought the book and am looking into more nutritional resources. I have to create a plan before I make radical changes to my diet. I have found if I don't have a concrete plan I will give up soon after starting the diet.

16 months ago

Anna

This is really neat Amy!

Self-help:  I use heating pads (love the stick on ones during the day), tens unit occasionally, I lay on an exercise ball if cramps are too bad to sleep.  Also, emotional support is much needed- especially when I am doubting my self or feel guilty. A good cry helps the most!

 I need at least 8 hours of sleep per night.  I have also been on an anti-inflammatory diet in the past ("Win the War Within: Fighting inflammation").  It helped a lot as when I went off of it all symptoms returned worse.

Meds:  Right now I'm on continuous birth control and immune suppressants.  My immune suppressants (methotrexate) actually seemed to have really cut down on my scar tissue since my last laparoscopy.  I also take about 8 pills per meal for my GI issues (I saw a specialist because I was sick of thinking it was all endo).  I was diagnosed with severe paralysis of my GI track and have done much better on meds.  In the past, I have also been on danazol. I did really well on it--- it controlled my endo and the side effects were manageable.  I gained 7 pounds but my pants size did not go up so I think it was just muscle mass.  I had to go off of it because of my liver function problems.  I had no depression with it and the hot flashes were manageable.

Surgery:  I have had 3 laparoscopies now with Dr. Haislet.  Each one has been worth it. I can go about 2 years in between without pain.  

13 months ago