So I have endometriosis and I hoping one day their is a cure or a good treatment. Endometriosis has taken over my life. I sit here and hope and pray that I can have another child. I do have one son (my miracle baby ) I wish I can give him a bother or a sister but since my endometriosis is really bad .
I was told I can’t have no more babies and it makes me sad. Do you see anything happening with endometriosis? Or any chance I would have another baby.
**This article is not a substitute for regular medical care or treatment. It is meant for informational purposes and reading materials only.**
(You’ve been forewarned – this is incredibly long.)
As someone with Endometriosis too I can say that I have done a lot of research on it and been on every treatment possible with very few exceptions – as I have refused IUD’s and also the one that is the size of a match and they implant it in your arm. Otherwise, I have tried them all – shot after shot, pill after pill, surgeries, etc. and here is what I have found most helpful:
Treatment – the most effective I have been on is aygestin. It is a synthetic form of progesterone called progestin. (Personal communication, Dr. Laufer, Boston BWH)I have also found Femara helpful but you would have to combine it with something like a progestin or pill/shot of some form. Femara is an aromatase inhibitor and it works by blocking estrogen or restricting it in some forms. You can look it up online. 🙂 It is used also for women who have or had breast cancer and the femara starves the body of estrogen. (Ailawadi, Jobanputra, Kataria, Gurates, & Bulun, 2004) Depo provera can help (Personal communication, Dr. Boyle, MGH Chelsea, MA) but it is birth control. Aygestin is not birth control. (Personal communication, Dr. Richman, Hallmark Health, Malden, MA)And Depo may require you to take calcium and vitamin d with it (Personal communication, Dr. Boyle, MGH Chelsea, MA), similarly to Lupron Depo but not nearly as bad for bone density loss side effects. (Personal communication, Dr. Laufer, Boston BWH)With Lupron you have to take a lot of calcium and vitamin d just to offset some of the potential bone density loss. (Personal communication, Dr. Laufer, Boston BWH) It doesn’t mean you will experience the bone density loss but it is always good to prevent it…(Personal communication, Dr. Laufer, Boston BWH)
Additionally: It is important that I mention to you a drug that is in trial right now called Elagolix. (Found through personal internet research.) It has been in trials for the last couple of years and I try to keep up to date on treatments available – especially this one. It is looking very promising in its treatment (Moore, 2016) – not only while taking it but [last I read – about 8 months ago] it seems it can help keep the endo suppressed even after taking it. It is not clear for how long and the like as it is still in clinical trials but it looks like it can be a promising drug and treatment for the disease. (AbbVie, 2016)
2. Holistic Treatment – this is where things get interesting. So while you have the regular Western medicine treatment (and I highly recommend it) pair it with the following:
A: Go through a elimination diet. (Personal communication, Dr. Gordon, CHA Malden at Canal St., MA) There are many online but Dr. Weil and also the University of Wisconsin Medical Center for Integrative Medicine are the ones I have done. (Lifestyle, 2016) I have done the ACIM one most recently (I attached it to this email because the link URL is giving me a hard time.) (Lifestyle, 2016)
B: Go green with cleaning products and anything chemically oriented. Endometriosis and people with it tend to be more sensitive to chemicals, fragrances, etc. (Association, 2005) and so doing things like: not wearing or using perfume or scented/fragranced products unless they are naturally scented – using things like pure essential oils, buying organic foods – especially produce and packaged products is important, organic meats, eggs, dairy, etc. this way you get less crap in your system and/or there will be less crap for your body to process. Essentially you want to give your body a break and having to ward off the chemicals and everything around you is one big key. (Personal communication; Bamboo Clinic ND, Brookline, MA) Cleaning products – go natural or green, like Stop and Shop here has Nature’s Promise products, Seventh Generation is good and there are others. You can also make your own products too. And you want this to be for everything from the soap you clean yourself with (unscented, gentle, etc.) to your laundry detergent, all purpose cleaners, dish soap, etc.
C: For inflammation: Ask your doctor if you can try Dr. Weil’s Anti-Inflammation diet. (Personal communication, Dr. Gordon, CHA Malden at Canal St., MA) http://www.drweil.com/health-wellness/health-centers/aging-gracefully/dr-weils-anti-inflammatory-diet/ (Lifestyle, 2006) Women with Endometriosis tend to have some inflammation and pain.(Personal communication, Dr. Gordon, CHA Malden at Canal St., MA) This can help. It is likely best to do this after completing the anti-inflammation diet. So you would do this and essentially eliminated anything you found that bothered your body. (Personal communication, Dr. Gordon, CHA Malden at Canal St., MA)
CC: Inflammation II: Ask your doctor if you can try Turmeric as a supplement. (Swarnakar & Paul, 2009) There has been at least one study I read that said if you pair Turmeric (curcumin) with your other treatment (I am not sure if it was the pill, progestin, the shot, or femara) but I have tried it too when I had a big endometriosis problem last year and I took it with a low dose of Advil and thankfully I wasn’t in much pain at all – where before not even 1,000mg of ibuprofen would dull the pain. Turmeric can help. (Swarnakar & Paul, 2009)
D: Rebuild – GI, reproductive, etc. with pro and pre biotics. (Personal communication, Dr. Gordon, CHA Malden at Canal St., MA) Years of antibiotic use and eating not-so-healthy foods, and a million other factors like stress can give our digestion a run for its money. (Personal communication, Dr. Gordon, CHA Malden at Canal St., MA) And so rebuilding our gut health is important because the gut is kind of like a second brain. (Personal communication, Dr. Gordon, CHA Malden at Canal St., MA) It helps us with our immune system (I have read that most of our immune system is in our gut), it helps us process foods, extract nutrients, and more. (Personal communication, Dr. Gordon, CHA Malden at Canal St., MA) So a good healthy gut can help us have a good healthy system. Ask your physician for a recommendation for probiotics. (Hyman, M.D, 2015) I take Florastor 1 pill in the morning and 1 at night and 1 Renew Life Ultimate Flora Extra Care Probiotic 50 Billion only for about 2-3 weeks and sometimes paired with l-glutamine to rebuild the lining of the intestines. (Personal communication, Dr. Gordon, CHA Malden at Canal St., MA) I tried another brand of 10 strains and it bothered my body so I had to stop. But these work very well for me. And there are a bunch to try. Ask your doctor for a recommendation. Be careful! Some have to be refrigerated. (Found from reading labels.)
And then you got to give those good bacteria something to munch on. (Personal communication, Dr. Gordon, CHA Malden at Canal St., MA) This is where prebiotics come into play. I eat organic cereal with inulin in it. Inulin (chicory root fiber) can cause wicked bad bloat and flatulence but if you take it with a probiotic that may not end up being a problem and they can work together. Other prebiotics you can look up online but some are like raw garlic, onions raw or cooked and more. (Personal communication, Dr. Gordon, CHA Malden at Canal St., MA)
E: Stress: This is a huge thing. I read a study that was on the Endo Association (endometriosisassn.org) website and it was about how stress affects endometriosis. There were three mice: 2 mice they gave endometriosis and 1, the control had no endometriosis. They found that when they gave one mouse with endometriosis, the endometriosis not only grew faster but the pain and symptoms were significantly worse than for the non-stress induced endo mouse. Stress is HUGE for endometriosis. (Long, Liu, Qi, & Guo, 2016) I would recommend the following from years of personal experience: Walking, yoga, meditation, massage, Reiki, reflexology, guided imagery, tai chi, qi gong, acupuncture, acupressure, mindfulness, MBSR (Mindfulness Based Stress Reduction), The Relaxation Response by Henry Benson, EFT (emotional freedom technique), deep breathing, journaling, exercising, enjoying nature, aromatherapy and more – all with the intention of stress reduction. There are tons of ways to reduce stress. You can benefit highly from doing whatever you can to reduce stress. (Long, Liu, Qi, & Guo, 2016) (endometriosisassn.org)
And make sure you surround yourself with good, positive, well intentioned people. -Because the opposite will only contribute to your stress. . (Personal communication, Dr. Gordon, CHA Malden at Canal St., MA)
F: The metaphorical: I have been told by my herbalist (acupuncturist/herbalist) that most women she knows who have endometriosis, such as myself, have some kind of mother relationship issue. (Personal communication, Megan Smith Lic.Ac. Dipl.OM; KenKoDo Clinic, Broadway Somerville, MA) Personally, I grew up with a mother who had multiple personalities and was dissociative. She had been sexually abused as a child, leading her to be dissociative, depressed, etc. during my childhood and I don’t have a relationship with her now. And so working through any mother issues, relationships with mothers, and the like are important. It doesn’t mean you have to reach out to them or anything, but more of heal from within with regards to the disharmony. (Personal communication, Megan Smith Lic.Ac. Dipl.OM; KenKoDo Clinic, Broadway Somerville, MA)
If I remember correctly in Louise Hay’s book “Heal your body A-Z” (Hay & Gross, 2001)she too had a similar metaphorical reason for endometriosis. But the cool thing is that she offers affirmations for it and in her book “You can heal your life” (Hay, 1985) she explains how to use affirmations for just that (and other issues or “dis-ease”). (Hay, 1985)
G: Other Medicines: In addition to Western Medicine, I have personally tried a lot so don’t forget you can pair it with the likes of Traditional Chinese Medicine (acupuncture, herbal prescriptions, food recommendations, and the like; And Ayurveda (India Medicine) – food therapy, herbs, self massage, daily routines, etc. The goal of both is to identify patterns of disharmony in the body as a whole (mind, body, spirit, emotion). They do it from a similar but also different way. You can go online and take a Ayurveda body type assessment (Douillard, 2011) and from there get recommendations of foods, routines, etc. And you can consult an Ayurvedic Practitioner. You can also go to a TCM acupuncturist and/or herbalist and get an assessment (they will ask you questions, take your pulse, look at your tongue, etc.) and they will make recommendations for food, lifestyle changes and the like as well. You can also use acupuncture points (using magnets, earseeds, press balls, acu-pellets, or needles – only by a licensed practitioner) and the professional can tell you which points you need and why. The goal of TCM and Ayurveda is to balance the body as a whole.
Don’t forget Integrative Medicine (using herbs, food therapy, exercise, etc.); Functional Medicine (rebuilding the gut and GI system first and then treating more); Naturopathy (a whole body approach – food, exercise, emotion, etc.) -Homeopathy and more.
The trick is to learn from each professional and come up with treatments you can do. I went to a Naturopathic Physician and she told me I had intolerances to gluten and dairy and that I was vitamin D and vitamin B12 deficient. (Personal communication; Bamboo Clinic ND, Brookline, MA) She was right. The problem I had was that it was 10 years ago and gluten free food, food allergies and intolerances weren’t as popular then so I didn’t go completely gluten and dairy free until July 2009 and egg free not too long after.
G2: Nutrition and Water: Eat good things and drink plenty of water. Nix artificial sweeteners, and “natural” sweeteners. Unless it is pure organic cane sugar, pure maple syrup, or organic local honey don’t use it. (Personal communication,, Acupuncture interns from the New England School of Acupuncture) and . (Personal communication, Megan Smith Lic.Ac. Dipl.OM; KenKoDo Clinic, Broadway Somerville, MA) And even use the real sweeteners sparingly. Sugar is awful for endometriosis. . (Personal communication, Megan Smith Lic.Ac. Dipl.OM; KenKoDo Clinic, Broadway Somerville, MA) It just aggravates the body and so keeping it to a minimum is optimal. And trust your body – if your body likes raw food, and then go raw. If your body likes cooked food, then cook it. If your body likes partially cooked food (and by food I mostly mean vegetables) then partially cook it. There is no strict win that will work for everyone. We are all different. And so getting this in check and doing the above (elimination diet, etc.) will all help. And try to cut soda, caffeine (unless your doctor says you need it), etc. Try to stick to water, coconut water, or maple water.
H: The “Whole”: So if you pair everything above, you can figure out what works for you. I take TCM herbs and I have an herbalist who writes me TCM prescriptions. I also have a primary care physician who is an Integrative MD who tells me to journal, to meditate every day, to exercise, and to get to the root of problems, and to rebuild my gut and more. I also have a psychiatrist now, who I am very grateful for. Full of knowledge and I was blown away with how much he knew. I gave him my life story in 55 minutes and all of my medical problems (endometriosis, fibromyalgia, vitamin deficiencies, stomach problems, migraines, hypothyroidism, anxiety (general with panic), hypervigilance, agoraphobia, and IBS to name the top handful (and my endometriosis specialist and reproductive surgeon told me that basically everything I have is well connected and many women have the same or similar issues and endometriosis is usually the base) and he put all the pieces together and the first thing he asked me was “do you dream a lot?” I said “Yes, I work through a lot in my dreams. I tend to repress a lot.” And then he said “do you get attacked in your dreams or do you dream of being attached?” I looked at him blown away. I told him how I used to dream that my mother was trying to kill me and how it took over 15 years to get to a better place dream-wise with her (she did awful things to us here) and how my ex-boyfriend I would dream of him cheating on me, killing me, etc. and how I dream that I am being hunted down, chased and shot at often. I sleep but I don’t usually get restful sleep. So after we chatted some more, he made recommendations and I took them. My doctors’ office has acupuncture there. I get massages when I can but from a local massage school (they are only $25/hr), and I do a ton.
The point I am trying to make is that there is no “one way” to do the treatment BUT there are many things you can do to help it. And I truly believe you can.
I would never ever say it is not possible for someone to have children. I have encountered many women with infertility or reproductive issues over the years (and I am only 30). And a lot of them gave up (stopped stressing) on having a child and then wound up pregnant. Lots of people who adopt end up pregnant too. It may or may not be possible to become pregnant but I never ever say never. (Personal communication, Acupuncture student interns and supervisors of NESA – New England School of Acupuncture).
I had a physician probably 6-7 years ago who had trouble conceiving (from MGH Everett, MA. Name kept anonymous) She told me she tried everything and nothing worked – not even hormone therapy. Then she decided to use a donor egg and she was implanted and pregnant in a flash. She had a beautiful baby girl and she was thrilled. Then they did it again for baby number two – got a donor, she got pregnant, had another beautiful girl. Then, out of the blue she naturally conceived without a donor – her third child. She said after she got pregnant on her own after years and years of hormone treatments and bad news about fertility – she said she would never say never, ever again. She said she will always say it is possible. She was in her 40’s and had 3 beautiful little girls and she said going forward she would never tell someone that having a baby is impossible.
So what I took from that was- sometimes we need to stop stressing and worrying and just let nature take her course. Nothing is impossible.
I: Speak UP & Do research: Your doctor/s is only one person. I have observed through my own care that they only have short times in a day to talk to patients to respond to requests, etc. and they likely have hundreds of patients and they are usually incredibly busy. Doctor’s cannot know everything; they also cannot be responsible for your health 100%. They cannot read every book, every new research article out there, every study, etc. it would be impossible for them to stay 100% current with everything in medicine. And with them having hundreds of patients and with hospitals and clinics making appointment times shorter – you need to be in the driver’s seat.
I told someone recently that the only way to get the care you want and need is to be strategic. If I wasn’t strategic in my care I would be way behind where I am now. And how I got there was mainly through reading, researching, asking questions, swashing stigma (who cares what other people think – especially about mental health – the stigma is huge), and speaking up.
Every time I go to my physician for a monthly follow up (yes, once per month and a specialist like GYN, etc. as needed) I usually have a list of what I am taking (medications, vitamins, and other supplements), and a list of what I want to talk about and what I want to address by order of importance. I usually have stuff in mind to discuss but if I don’t have it written down then I will completely forget what it was. Write it down. And if your doctor has an email or online messaging system – use it. It is not for emergencies but for minor things, updates or simple questions.
I am also strategic in getting appointments because my doctors are so busy that I have to be strategic – otherwise I won’t get an appointment and I would never see them. You have to ask questions of the people on the phone, of the appointment setters – what is the best time to call for an appointment, is there a cancellation list? etc. It is all super important.
J: Remember we have: Mind, Body, Spirit, Emotion. And they all need love, care, peace, etc. And we can always touch our soul/spirit, do spiritual exercises, develop, etc. just like everything else.
In conclusion never be afraid to talk to your physicians. Never be afraid to help guide your own care, research your possibilities and present them to doctors. I learned research methods and design, applied statistics for psychology, data entry, analysis, and writing research proposals and even presenting them when I was in college. So my final semester I took extra classes so I could graduate early. I ended up researching endometriosis that year and I found that they were combining birth control with aromatase inhibitors like Femara and having awesome results. So I printed all the research, brought it to my specialist at Brigham and Women’s and asked him if I could try it. He said they haven’t tried it there before but he looked through the papers and said if I wanted to try it, he would let me. I did – it was great. And then because of this, it is now a treatment option for women with endo who go to Brigham and Womens and also Children’s Hospital Boston Gynecology (where I was first diagnosed).
I would have never expected him to know about this research because he is jam packed with patients and surgeries and emergencies and he had a family and home life. But I never would have known it was good if I didn’t look for it, research, present the data and findings. And the rest is history.
Keep in mind I don’t expect anyone to really go take hours to research BUT when you have time – do some. Search “scholar.google.com” for endometriosis (or any other illness you have) and go from there. Read books on healing, forgiveness, reiki, TCM, ayurveda, naturopathy, etc. learn as much as you can and never stop learning. Learning is what will help you in the long run.
I actually plan to write a book about everything I mentioned to you here. 🙂
I knew it was going to be long but I didn’t think it would be this long…
Namaste to all.
Here are some references:
1. Long, Q., Liu, X., Qi, Q., & Guo, S. (2016). Chronic stress accelerates the development of endometriosis in mouse through adrenergic receptor β2. Human reproduction (Oxford, England).doi:10.1093/humrep/dew237
2. University of Wisconsin School of Medicine and Public Health.“Elimination Diet.” UW Integrative Medicine Department of Family Medicine. (2008) n. pag. Web. http://www.fammed.wisc.edu/files/webfm-uploads/documents/outreach/im/handout_elimination_diet_patient.pdf
3. Lifestyle, W. (2006, August 8). Anti-inflammatory diet and foods | Dr. Weil. Retrieved November 9, 2016, from Aging Gracefully, http://www.drweil.com/health-wellness/health-centers/aging-gracefully/dr-weils-anti-inflammatory-diet/
4. Lifestyle, W. (2016). Food sensitivity testing – food intolerance test | Dr. Weil. Retrieved November 9, 2016, from Healthy Living,
5. Swarnakar, S., & Paul, S. (2009). Curcumin arrests endometriosis by downregulation of matrix metalloproteinase-9 activity. CSIR. Retrieved from http://188.8.131.52/handle/123456789/3329
(Swarnakar & Paul, 2009)
6. Ying, Z., M.D, Hong, C., M.D, Yu, Z., M.D, Peng, H.-Y., M.D, & Shang, C. M. D. (2013). Curcumin inhibits endometriosis endometrial cells by reducing estradiol production. Iran J Reprod Med, 5, 415–422. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3941414/
7. C, X. 3, & ’, script>. (2014). Chopra center marketplace store Deepak Chopra & Chopra center’s Dosha quiz. Retrieved November 9, 2016, from https://store.chopra.com/dosha-quiz
8. Douillard, J. (2011, November 16). John Douillard’s Life Spa Body Type Quiz. Retrieved November 9, 2016, from John Douillard’s Life Spa Body Type Quiz, http://lifespa.com/ayurvedic-health-quizzes/body-type-quiz/
9. Hay, L. L., & Gross, S. (2001). Heal your body A-Z: The mental causes for physical illness and the way to overcome them (10th ed.). Carlsbad, CA: Hay House.
10. Hay, L. L. (1985). You can heal your life (2nd ed.). Carson, CA: Hay House.
11. Ailawadi, R. K., Jobanputra, S., Kataria, M., Gurates, B., & Bulun, S. E. (2004). Treatment of endometriosis and chronic pelvic pain with letrozole and norethindrone acetate: A pilot study. Fertility and Sterility, 81(2), 290–296. doi:10.1016/j.fertnstert.2003.09.029
12. Attar, E., & Bulun, S. E. (2006). Aromatase inhibitors: The next generation of therapeutics for endometriosis? Fertility and Sterility, 85(5), 1307–1318. doi:10.1016/j.fertnstert.2005.09.064
13. Probiotics-Topic overview. (1995). Retrieved November 9, 2016, from WebMD, http://www.webmd.com/digestive-disorders/tc/probiotics-topic-overview
14. Hyman, M.D, M. (2015, April 17). Powerful strategies to eliminate IBS & other gut issues – Dr. Mark Hyman. Retrieved November 9, 2016, from Articles, http://drhyman.com/blog/2015/04/17/powerful-strategies-to-eliminate-ibs-other-gut-issues/
15. Association, E. (2005). Toxic Link to Endo. Retrieved November 11, 2016, from The endometriosis association, http://endometriosisassn.org/environment.html
16. Moore, C. (2016, August 25). Endometriosis therapy Elagolix meeting phase 3 trial targets. Retrieved November 11, 2016, from News, http://endometriosisnews.com/2016/08/25/endometriosis-therapy-candidate-elagolix-meeting-phase-3-clinical-trial-targets/
17. AbbVie. (2016, October 19). AbbVie announces positive pivotal phase 3 data demonstrating investigational medicine Elagolix reduces menstrual and non-menstrual pelvic pain associated with endometriosis at the American society for reproductive medicine scientific congress. Retrieved November 11, 2016, from AbbVie, https://news.abbvie.com/news/abbvie-announces-positive-pivotal-phase-3-data-demonstrating-investigational-medicine-elagolix-reduces-menstrual-and-non-menstrual-pelvic-pain-associated-with-endometriosis-at-american-society-for-reproductive-medicine-scientific-congress.htm
1. (Personal communication, Dr. Laufer, Boston BWH)
2. (Personal communication, Dr. Boyle, MGH Chelsea, MA)
3. (Personal communication, Dr. Richman, Hallmark Health, Malden, MA)
4. (Personal communication, Dr. Boyle, MGH Chelsea, MA)
5. (Personal communication, Dr. Gordon, CHA Malden at Canal St., MA)
6. (Personal communication; Bamboo Clinic ND, Brookline, MA)
8. (Personal communication, Megan Smith Lic.Ac. Dipl.OM; KenKoDo Clinic, Broadway Somerville, MA)
9. (Personal communication, Acupuncture interns from the New England School of Acupuncture)
10. (Personal communication, Acupuncture student interns and supervisors of NESA – New England School of Acupuncture).
11. (from MGH Everett, MA. Name kept anonymous)
1. A, 2013. (1997). Endometriosis. Retrieved November 9, 2016, from http://umm.edu/health/medical/altmed/condition/endometriosis
2. Northrup, C. (2010). Women’s bodies, women’s wisdom: Creating physical and emotional health and healing. New York: Random House Publishing Group.
Follow up from Casey:
Follow up to Casey: