I am not the only one who is having success with this disease. I wanted to let you know that there are others who are making progress. I hope some of these stories can give you Hope! Check back here later, more stories will be added. If you want to talk to these women, some may be on the forum.
Here's my progress since I started natural treatments...
*Mid-cycle pain—excruciating (this past year it got worse and worse each month)
*PMS-major mood swings, severe emotional sensitivity, acne, big time bloating, severe cramping
*Chronic fatigue—I did not have the luxury of sleeping all day.
*Leg pain throughout month
*Very painful periods- often missed a day of work each cycle; was taking the max # of naproxen each day; low-grade fever
*Occasional pain/bleeding with sex
*Food cravings (usually I would crave fatty foods or sweets, mostly chocolate)
*Blood in stool
*About 3 months prior to surgery I bloated up like a balloon.
*Memory loss; just couldn’t keep much in my brain
*Severe knife like pain on right ovary (often during period/ovulation, but prior to surgery became continuous so I took a lot of drugs)
June 24-25, 2004: Entered the ER and had an emergency Lap (removed an 8 cm cyst on right ovary, immediate relief of daily excruciating pain)
Late July: Started Endo diet (immediate relief from bloating; period still difficult as I continued to need pain pills, it also became longer with more lighter days and one extremely heavy day)
Early August: Started liver detox, progesterone cream, high quality supplements (drastic change in how I felt, the majority of the above was gone. Had slight period cramping and PMS)
Early September: Started fish oil (remaining cramping and PMS disappeared)
Other notes: shortly after surgery and before I started natural treatments I grew a new 4 cm cyst on each ovary. One grew within two weeks, my doctor classified this as very rapid rate of growth.
*Food cravings about a week before my period (started Selenium supplement to help)
*If I eat too much dairy I will get cramps
* Cysts are still present, though have not grown. Increased progesterone cream and started a regimen of Turska’s Revised Formula (can only be used under the supervision of a doctor) to try to shrink cysts.
I would say I’m feeling GREAT! I feel like a completely different woman.
I just want to thank you for being an answer to much prayer. I've been dealing with endometriosis for a couple of years after having it confirmed by a lap. I'm in the medical field so my only way of thinking has been medical. I went to my pastor last month completely at a loss of why I was in such daily pain and he suggested I look into more natural methods of dealing with this. I came across your website and have been consumed ever since. I have started implementing the endo diet and progesterone cream and have been literally pain free for a month now! I'm now researching to add the vitamins and exercise that you mention. God is an awesome God and I'm so thankful for the hope I now have. My husband thanks you, my children thank you and I thank you for being so open and sharing your lives.
It's comforting to read your stories and know that I am not alone. I was diagnosed with stage 5 endo last year via a lap. A year prior to that a big fibroid was removed and the Dr. did not find any ENDO. I have had pain since I was 15 years old. My symptoms were severe cramps, clots, PMS, tender breast, heavy bleeding and painful bowel movements. My dh and I have been TTC for about 2 years. After failed IVF we have decided to adopt. I will tell that the Dr. wanted me to go on lupron or the pill to prevent it from coming back. I decided to take the natural alternative route and I feel 100% better emotionally, physically and spiritually.
Diet that has worked for me:
- All Organic: vegetables, chicken (occasionally), fruits, eggs ( 3 times a week), nuts, and goat cheese.
- Almond Milk instead of soy milk
- Eat Spelt bread instead of wheat
- Herbal teas 3 to 4 times a day
- Water, Water, Water !! =)
- Yoga 5 times a week
- Acupuncture one a week.
- Supplements: Omega 3 fish oil, flax seed, Multi-Vitamins, calcium, iron, whey protein shakes and add green defense powder ( this provides you with all your amino acids and greens you need in a diet)
-Fish- Sushi, Salmon, Shrimp, Mahi-Mahi
-Stevia (herb) for a sweetener. This is a great product you can find at a natural food store. My acupuncturist recommended it. It’s a herb and is good for you, unlike aspartame and saccharine.
What not to eat:
-No wheat bread, or wheat gluten ( you will find wheat gluten in alot of packaged food)
- No Soy: Contains estrogens:
- NO coffee ( decaf is the worst because it’s processed)
- No Sugar
- No white flour
-No fried foods
How I feel now:
- More energy
- Blood is bright red and flowing
- Very little cramps
- Less bleeding
- No PMS
I had endo for years and my gynae just blew me off. I wanted to scream I was in so much pain. I then went to a fantastic doctor who, even though he was not a great people person, didn't mess around with diagnosing me and sorting out the endo. (3 laps later and a course of Zolidex). He encouraged me to eat better and look after myself. Since then, I have lost 10kgs (about 22 pounds) and have been following a much healthier lifestyle. 80% of the time I eat no wheat, dairy or refined sugar. I think I am still hopelessly addicted to sugar, but I am working on it. I also take omega 3 fish oil supplements, a really good multi vit (wheat free, diary free, yeast free etc) and also a good vitamin c. I take natural progresterone from DAY 12-DAY26 of my cycle and the effects have been amazing. I am not pain free, but I no longer have to take time off work because I am in so much pain. (Couldn't walk, talk, just wanted to scream!) I am happier, don't have such dark days anymore (PMS blues) and would certainly say I am nicer to be around!
If I may, I would really like to encourage you to go on this journey. Start looking at natural alternatives; eat well, do some gentle exercise, love yourself and others, spend some time thinking about what kind of quality of life you want.... Endo doesn't mean the end, you just have to work out how to help yourself get better.
I have to admit that the natural progesterone cream I use has parabens, but since it is working so well for me, I don't want to switch. The progesterone cream worked after the first month for me for pain relief. I went from about 5 days of terrible "fetal-position" pain to about 2-6 hr. of pain on day 3 of my period. I did a higher dose for about the first 6 months, like 20 mg in the morning and 40 at night. But, I started gaining weight like crazy, and feeling really hungry all the time, like "starved to death" hungry. I was also so fatigued all the time. So, I cut back on it to about 30 mg only at night before bed. That seems to have helped both the weight gain and the fatigue. I talked to my OB/GYN about it and he said that too much progesterone can have an androgynous (sp?) effect, which could cause the weight gain. So, that's when I cut back. I have lost some of the pain relief, but not much. I usually just have to take one pain reliever sometime around the 3rd day of my period, but that is all.
Also, I had done the Lupron last year, and as a result I had hair loss and acne, and after about 6 months on the cream, the acne got a lot better, and after about 1 year, the hair loss subsided. It was never really bad hair loss, but thinning would be a more accurate description. Also, my blood pressure has greatly improved. So, the natural progesterone cream had a lot of added benefits for me other than just the pain relief!
The only other things I am doing are the fish oil, B-Complex, B-12 (methylcobalamin), Vitamin C,E,A, magnesium, calcium, and I have eliminated all caffeine (well, with the occasional chocolate fix every now and then). I don't do the endo diet or anything else. I really can't afford to. There is no way my husband would agree to be on it too, and we can't afford 2 different sets of groceries, if you know what I mean!
These are photos taken through the laparoscope during my surgery at the Center for Endometriosis Care on Oct. 18, 2005. Adhesions appear to be cobweb-like or saran wrap-like. The endometriosis is white. Notice how hard it is to tell where the endometriosis appears. That is why it is so important to have a skilled, experienced surgeon at determining the different appearances endo can take (it's not necessarily always white -- can be other colors). Right ovary (white) is densely adhered to the pelvic sidewall. Sigmoid colon is densely adhered to the pelvic sidewall. Filmy adhesions are under the left ovary. The cul-de-sac has adhesions as well as endo. Endo is in the cul-de-sac, on the pelvic sidewall, uterus, left and right uterosacral ligaments. The uterus is mildly enlarged, and boggy, suggesting adenomyosis. The yellow is fat -- YUCK. All of the endo and adhesions were excised (cut out), and the two adhesion barriers used were FloSeal and CoSeal.
I had had one previous laparoscopy two years before this surgery. The adhesions were a result of that surgery where the doctor used laser vaporization to remove the endo, which at that time was stage III, and Seprafilm as an adhesion barrier. Dr. Sinervo staged this endo at II. It is difficult to know whether or not this endo was left by the previous surgeon, but that is what Dr. Sinervo does believe.
The question on the forum was: Is there Hope?
I read a journal entry of mine from one year ago today, and I didn't realize how far I have come since the beginning of my healing journey!
What I experienced before changing my lifestyle:
severe mood swings/ depression
severe cramping 11- 17 days each month
painful bowel movements/ frequent urination
heartburn (rolaid abuse)
prescription and OTC medication abuse
water retention (5-10 pounds!!)
dark blood flow
lack of intimacy with my husband (too painful)
seclusion /avoiding friends and family
stimulant cravings (sugar, caffiene, nicotene)
These things added up over time (almost without me noticing). I didn't realize how badly this disease affected every aspect of my life. After having a lap, pictures showed severe adhesions on bowels, bladder, falopian tubes, and ovaries. Only one falopian tube was open, the other was completely blocked.
What I started doing one year ago:
natural progesterone cream
evening primrose oil, flax, OR fish oil
stopped drinking soda
using whole food supplements (garden of life vitamins)
using digestive enzymes (with cooked foods)
increased water consumption
stopped eating fast food
started using chemical free beauty products
eliminated harsh chemical household cleaning products
stopped having my house sprayed with pesticides
started using chlorine filter in baths/ showers
no chemical fabric softeners, detergent, or bleach
stopped all pain meds (over time)
stopped birth control (prescr by doc for pain mgmt)
eliminated stress (50-60 hour work weeks)
weight gain in stomach, breasts, rear, & thighs
I did not start all of these changes at once, but continued change as finances allowed. I also noticed improvement with every change, which motivated me to continue.
What I experience now:
2-3 days of cramping with cycle only
occasional mild fatigue (usually from stress)
NO ovulation pain
No water retention
Regular, unpainful bowel movements
17 pounds of weight loss (nice side effect)
Bright red blood flow
great improvement in all relationships, especially my marriage!
These changes are, by no means, a quick fix! It took months to accomplish this, and I am still working to have a pain free period. Although I no longer use pain meds, I still have to stay in bed the first two days of my cycle (usually with castor oil packs and a heating pad).
I have done a lot of damage to my body from poor diet, medication abuse, and toxic exposure. I am now focusing on detoxing my liver and kidneys - hoping to eventually eliminate estrogen dominance and adrenal fatigue.
I have no children, and God willing, I will be able to conceive someday. I don't know if my adhesions are still there, because I refuse to have another lap. I do know this: no pain medication, synthetic hormone, or surgery has ever accomplished anything close to what this natural approach has done for me!
Prayer has also enabled me to get through this drastic change. Through prayer, God has provided finances (despite leaving my high stress job), literature, people (including Lori and those on this site), and the strength to get through all of the withdrawls and changes. He is faithful!
If you are starting natural rote it is really great to start to write diary. I have kept my symptoms diary from March this year (actual reason was to prove for my doc that natural route is working , but it is such a blessing to look back and see changes). I guess I first came to this page in the beginning of this year.
I had: Depression
really painful periods
All time tired or/and fatigue
Irritation and low mood
Clottes in blood (during period)
1-2 weeks before period very swollen and tender breast (need to wear much bigger bra like usually)
Headache every single day
I am taking EPO, fish oil, B-vitamin complex, nat.prog. cream (just last three month), trying to use less and less toxic things, some exercises and trying to keep diet named: "As less wheet as possible"
First depression disappeared.
At the moment symptoms:
acne (it seems to be side effect for my B vitamins)
painful periods (hope this one will be better)
ovulution pain (didn't have it in the beginnning of year)
Weight loss (hopefully I am not loosing more)
BTW: If I stopped for one month my Wheet free diet (cause I wasn't at home and had to eat what was given) I had horrible abdominal and low back pain during period...
I am much healthier and hope to get more healthier!
Thanks God for you, Lori
Evelyn from Estonia (Europe)
Hello, I was just browsing and stumbled apon your website. What a blessing, to have a website just for endometiosis sufferers. Well, long story short-- I had a lap done 2 years ago, doctor said it was one of the worst cases she has ever seen. She wanted me to start lupron immediately to try and shrink a large cyst growing off of uterus. I was on it for 1 month, and hated the side effects. I was praying that the Lord would lead me. I started to research other alternatives and learned about progesterone cream. After 4 months on the cream, my cyst was completely gone. I just had another lap done 2 weeks ago. The doctor was so surprised that everything looked so good. I really contribute it to the progesterone cream and evening primrose oil. Anyway, you all keep up the good work. I hope this has encouraged someone, somehow. God Bless you all. Shannon
You are not alone!, Please view more endometriosis stories here on the forum and feel free to add your own!
Visit here for many more stories, please pray for all of us in the meantime and come on in and join the prayer club!
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There are millions of us-spread the word ok!! The world needs to know about this disease and also the alternative treatments that are available!