Disclaimer: I am not certified to give medical advice in any way, shape or form and that is the furthest thing from my intent with this post. I am just speaking to my personal experience living with endometriosis, some of what I’ve learned and read over the last few years, and what has worked for me with regards to managing it. If you think you are suffering from endometriosis, please speak to a health professional. I am not qualified to give anyone advice on treating this disease in any way. I’m still struggling to cope with endometriosis too.
Hi guys! I wanted to finally write a post that has been highly requested by you over the last few months. As some of you may know, I have struggled with endometriosis over the last six years and in the last year have changed my diet to alleviate some of the pain and other symptoms of endo.
Some of you may be wondering what endometriosis is. In short, endometriosis is a disease where the endometrial tissue that lines your uterus starts growing outside the uterus, where it is not supposed to grow. It creates a lot of scar tissue and can grow all over your organs, sometimes fusing them together. Google a picture of it, it looks like something out of the movie Alien. Endometriosis can be an incredibly painful disease. Some of the other symptoms are excruciating pain and cramps, abnormally heavy menstruation, cystic acne, infertility, nausea, frequent urination, lower back pain, bladder pain, rectal pain, pain during sex, abdominal cramping and swelling, depression, and fatigue. It is important that I note that some women with endometriosis may not experience any symptoms at all. I have a friend who found out at the age of 43 that she had endometriosis because the endometrial growth had started cutting off some of her organ functions. She had experienced no symptoms her entire life.
Endometriosis is a disease that affects one in ten women. No one knows the cause of endometriosis. There is no cure for endometriosis. You can only manage the symptoms. It is diagnosed through a laraposcopy, and laraposcopies can also be performed to remove some of the endometrial growth. Many women have found relief from larapscopies, but the endometrial tissue typically grows back and more surgeries are required. Other options to treat endometriosis are Lupron (a chemo like treatment that puts you into menopause) This is also a treatment with mixed results that is very expensive and you guessed it, has very severe side effects. During one of my consultations with a doctor who I wanted to perform a laraposcopy, I was told that she would rather perform a hysterectomy on me or get me on Lupron than perform surgery on me. It is very difficult finding someone who will hear you out and has experience dealing with endometriosis. I think most women who have sought treatment for their endometriosis have had very difficult experiences with doctors.
Many women with endometriosis have found relief from birth control and IUDs, and some women choose to get hysterectomies. Hysterectomies have mixed results as endometriosis is by definition a disease that occurs outside of the uterus. Many doctors have told me that some women find relief from endometriosis by getting pregnant. I don’t know if this true at all, it seems I know a lot of women who still suffer from endometriosis after having kids. It’s very frustrating and hurtful to be told to “get pregnant” (as two doctors flippantly suggested to me in the last year) when I don’t know if I am ready for kids but I do know I have a disease that may make having them very difficult.
It’s been said before but if endometriosis were a male disease there would probably be some kind of cure for it by now. I think getting past the stigma of reproductive illness might help us get better options for treatment and pain management. Sadly, with one in ten women are dealing with endometriosis, the road to “recovery” remains a mysterious one. It breaks my heart that so many women are going through the same struggle trying to receive treatment.
Options for treatment of endometriosis are complicated, finding someone to treat you can be difficult, and the options are overwhelming. We need to make endometriosis part of sex education for young women so they know living in pain is not normal and aren’t afraid to speak up when they are suffering. We need to more doctors who are experienced in performing laraposcopies and other endometriosis treatments. Endometriosis can cut young women off from access to education and from earning a living as they get older. It was incredibly difficult for me to work during the worst years of dealing with this disease, but I have the tremendous privilege of being self employed and I could work around my flare ups. There are so many women struggling to make it to work, to make it through the work day, or stay employed at all because of their endometriosis. This is why endometriosis is a social issue, it is a feminist issue, and it is high time we begin to treat endometriosis as such.
My struggles with endometriosis began about five and a half years ago. I had always had really painful periods growing up where I bled heavily and missed a lot of school but I thought that was normal. Around the age of 21, I suddenly I started getting severe stabbing pains in my lower pelvis. It felt like someone was snipping at my uterus with sharp scissors. I remember laying in bed wondering if I needed to go to the emergency room. I scheduled an appointment with my gynecologist immediately. I told them something had to be very wrong with me, that I was in an huge amount of pain. They told me I was fine and to go home and take some Advil.
Over the next year the pain got much worse. I felt like the inside of my uterus was being attacked with hot serrated knives. Lacerating nerve pain shot down my legs and frequently made it difficult to walk. My joints ached and my lower back was seized with pain. The worst part was my pelvis felt bound up in tension and pain constantly. The pain was constant and the nature of it could be extremely violent and totally debilitating. A lot of people seem to be under the impression that endometriosis just means having “difficut periods”, which for some women it does. But for me, and some others with endometriosis, I was under siege all day every day with extreme pelvic pain. The pain often left me laying on my bathroom floor, waiting to vomit or pass out. It was getting difficult to perform basic functions like showering or cooking, or working on Sea of Shoes. When my then boyfriend, now husband went to work, I would lay under a blanket sandwiched between two heating pads, and wonder what the hell had happened to me. It was staggering how quickly the chronic pain of endometriosis made my own life unrecognizeable to me.
I kept going to doctors and not getting answers, until I finally did three years ago. Endometriosis. Great, I thought, now I can finally get treated. Except not really, because as I’ve mentioned before, the options aren’t exactly cures. I remember my doctor actually rolling her eyes and sighing when I asked what my options were. I continued to live in miserable pain, varying degrees of it I guess, for the next few years. I had one year that wasn’t as bad as the first two, but then the severe and constant pain returned with a vengeance in 2017. I have Polycystic Ovarian Syndrome (PCOS) as well as endometriosis, and in the summer of 2017 I had a complete hormonal freak out. I started dealing with ruptured ovarian cysts and overnight I developed two ping pong sized acne cysts on my face. It was a living nightmare. This was in the months leading up to our wedding and it was the single most stressful time of my life.
To deal with the acne, I found an amazing dermatologist who operated on me and prescribed Accutane, along with some other steroid treatments and antibiotics. I am lucky to have no scarring on my face. I also went on birth control. I had tried many kinds of birth control in the past but every kind just made me bleed heavily constantly, but I finally found a brand that worked (Yaz). The birth control did not alleviate my pain but it did make my period shorter, which meant less days that I was completely incapacitated from menstrual pain. Still, the constant pelvic pain was unbearable. The medication I was on to treat my acne and hormonal flareup was pretty intense stuff. At one point I had lost almost 15 pounds from the stress and medications. I looked like a ghost, I was in total shell shock. I remember being at a meeting with our wedding caterer, and I was in so much pain I literally had to hold my rear end up with arms to walk. It was mortifying. I felt like I had completely lost control of my life.
I consider getting through our wedding with all of my health problems a milestone in itself. For some reason, I imagined things would get better for me after the wedding. Except they didn’t. Over the next few months I needed painkillers just to get out of bed every day. My mental state was deteriorating from the severe and constant pain I was in. My pelvis was always painful and tense, but I would get violent lacerating stabbing pains that would take my breath away and cause me to vomit. I was in tears constantly, and I felt terribly afraid and alone. I was frustrated by the merry-go-round of unhelpful doctors I was seeing. To give my husband a break from hearing me cry, I went to a movie by myself in the middle of the day to cry in private. By February of 2018, I had fallen into a deep depression. Endometriosis had isolated me so much that I felt I no longer could participate in my life in any kind of meaningful way. I had to confront the fact that I was beginning to have suicidal thoughts.
I am not someone who is prone to depression, in fact I would categorize myself as generally a happy person even though I struggled coping with chronic pain. I have many friends and family who deal with clinical depression and I know what that looks like, it’s just not me. The pain had blotted everything else out. My self esteem had plummeted in my years dealing with the pain, I felt so inadequate because I could not be as productive or active as other people my age. I was really hard on myself about all of the things I couldn’t physically do or accomplish. I felt completely shut out of my own life by my illness. I didn’t leave our house unless I had to because I didn’t want to have to deal with the pain in public view. I never could have imagined myself getting to such a point in my life. If you are struggling with depression related to chronic illness or pain, I suggest seeking out a therapist who has experience working with people who suffer chronic illness. It’s a different kind of beast. I should have sought help before I let things get so bad.
I was at the lowest point of my life and I knew I had to do something to get better. When researching treatment for endometriosis, diet comes up a lot. I ate “healthyish” but I was also a passionate baker and cook, as you probably know. Food is one of my greatest joys in life and cooking was always a refuge of happiness for me even at my lowest points in dealing with endometriosis. Even if it took sitting on a chair to prep food or stir a pot, or a tramadol, I always felt like my old self when I was in the kitchen making pasta with my husband or kneading bread for breakfast pastries. Food was my sanctuary and I was very reluctant to give up one of the last things that made me feel “normal” and happy. The thought of living without gluten depressed me to no end. Even so, I knew I had to try every option out there to get myself feeling better. I began to research endometriosis diets extensively, and ordered a slew of books on the topic.
I decided I would do a two month elimination diet based on my findings. I cut out gluten, rice, corn, soy, sugar, alcohol, dairy, red meat, caffeine, and all processed or fried foods. Yes, it was very strict, but it was not a diet I intended to stay on forever. I was so desperate for relief from the pain and I needed to feel some improvement as quickly as possible. It took three weeks to feel any kind of discernible difference in my pain levels. I was thrilled by the progress and kept a food and pain diary to track my health trajectory.
One month into my elimination diet, and I was starting to feeling better. By two months my pain had decreased by about half, and I was not spending all day in bed anymore. I was starting to feel like myself again, and every day that I woke up not seized with pain felt like a gift. I had become very cynical in my years dealing with endometriosis, and to discover that relief was actually possible turned my state of mind around. Slowly I added rice and corn and some dairy back in to my diet, with few ill effects.
As the pain subsided, I realized I was not going crazy all of those years living in intense pain. Living in constant pain is like experiencing life at 10% when you used to experience it at 100%. Your body is not meant to withstand the stress of intense pain for years on end. It’s no wonder I was unravelling. When you start to recognize again what life was like before your chronic pain started, it puts things back into perspective. The feeling of “spiraling” was finally subsiding. Relief feels like a miracle and I spend every day feeling thankful I don’t feel the way I did in February of this year. I hope I do not find myself there again but I am prepared for the reality that the pain might return. I am very grateful for the painkillers that allowed me to continue to work and earn a living over the last few years, but they were incredibly hard on my body and I deeply despise having to take them. I now have severe sound sensitivity issues when I take pain medications. This motivates me to do everything I can to manage my endometriosis on my own.
I don’t want to paint the diet I follow as a cure-all for endometriosis. I’m still in some degree of pain almost always, just not as often the kind where I can’t walk from one end of my house to the other. I’m actually looking to schedule an excision surgery very soon. As I said I still have a lot of bad days. The last three days for instance have been very painful for me and I have relied on painkillers to help me remain productive. If I stray from my endo diet, I have symptoms come up immediately. I have terrible hormonal nausea frequently. I even had a bad pain flare up in July, which freaked me out and brought on a lot of panic attacks. Chronic illness is called chronic illness for a reason sadly, and it isn’t something that just goes away. It’s always going to be part of my life and I just have to learn to manage it as best I can.
One of the more difficult factors of living with chronic illness is the overwhelming amount of suggestions or ideas on what you can do for relief. There are so many opinions being offered that it’s not always helpful. I’ve tried CBD and acupuncture, and they help a bit but not much. For me, a controlled diet has relieved my symptoms the most. As I’ve mentioned, there are many ways women can choose to manage this disease and there isn’t one answer that is “the right one”. I think most women like myself end up trying a combination of a few or a lot of things, but what gave one person relief from endometriosis might be a really bad experience or waste of resources for another person suffering from endo.
Diet is not a substitute for consulting your doctor. It can however help manage some of the symptoms. If you are suffering from endometriosis, first of all, let me say I am so sorry and you are not alone. If are thinking about making this change, I would love to recommend these books for you to read up on. Knowledge is power and just reading these books made me feel empowered to tackle my illness. I hope it does the same for you.
BOOKS FOR READING ON ENDOMETRIOSIS AND DIET:
The Endometriosis Health and Diet Program: Get Your Life Back by Dr. Andrew Cook and Danielle Cook
I highly recommend this book as a place to start, it is easy to understand and gives good information about the treatments and surgeries available to endometriosis sufferers, while also offering an inclusive holistic healing approach. This book offers information on an elimination plan that was very helpful to me when I started my endo diet.
Endometriosis: A Key to Healing Through Nutrition: Dian Shepperson Mills
This book is pretty dated as it was written in 1995 but there is still a lot of useful information on the disease and fertility, if you are interested in that. She does include soy in her diet. I don’t eat soy as it promotes estrogen dominance and the general consensus nowadays is that women with endometriosis should really not be consuming soy. I do like the rest of her diet plan though and this book did turn me on to buckwheat, which actually is an estrogen blocker and now I’m addicted to it.
The Keystone Approach: Healing Arthritis and Psoriasis by Restoring the Microbiome
This has a lot of fascinating information about diet and autoimmune disease. It was a pretty fascinating read for me even if I can’t practically apply this diet plan in my life (it recommends eating almost no carbs, I tried it for almost a week and got so weak I had to stop) Still, even though I can’t follow the diet advice it taught me a lot about inflammation. It’s thanks to this book that I no longer use coconut oil, which it turns out is a big inflammation creator for those with autoimmune conditions.
The Doctor Will See You Now: Recognizing and Treating Endometriosis
A friend suffering from endometriosis recommended this book to me and I have to say it’s a must read for anyone suffering. If you have been going to doctors and wondering why they all try to weasel out of treating you by any means possible, this will be enlightening (and a bit disheartening) for you. I know it was for me. Read this if you are looking into scheduling a laraposcopy, this will book will empower you to be your own advocate in your doctor’s office.
Also: check out ThisEndoLife’s podcast.
This has been a very long post already, I’ll cut it off here. This is the first post in a series, and I’m really looking forward to my next post, which will delve more into the diet. I am deeply passionate about food and baking and I was worried that I would never get to enjoy those things in full living on this diet. I am happy to say that I could not have been more wrong and I’m still cooking and loving my food as much as ever. I’m really looking forward to sharing with you some of the cookbooks, recipes, and tips that made this diet doable for me.
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I’m so sorry you’re going through this! I was diagnosed with rheumatoid arthritis this past spring and for months I thought I was going crazy, in so much pain and no one knew why. Chronic pain is very lonely because no one can *really* know how you’re feeling. I’m glad that you’ve at least found some relief with dietary changes. I hope that the future brings answers and less suffering. <3
I am so sorry that you’ve been going through this. What hell on earth! Sending you lots of love and hope. You are stronger than you know!
I feel like I just read my own story. Thank you for sharing your story, I know it’s not easy, but we need to bring awareness to this. Thank you for this!
Serena Mason says
I’ve found some good info on Jessica Murnane’s One Part Plant website http://www.jessicamurnane.com/ and controlled the severity of my endo with diet as well. I’m nearing the end of my first pregnancy and dreading the endo symptoms returning after I give birth and my hormones go back to my ‘normal’. Good luck to you and all the other ladies struggling.
Fellow former endo sufferer here. Your post really helped me. I suffered with endo back in the ’90’s and nobody really talked about anything. I, like you, started getting stabbing pain. It was on my right side and down my right leg. I was really shocked when they said it could be from endo. I did have laparoscopic surgery and it totally helped and knock on wood I have never had to have another one. The pain from my periods decreased, though it was still worse than a lot of people I think. My female doctor had me take vitamin E and calcium for swollen painful breast nodules, and for some reason that helped both the nodules in my breasts and my endo pain. Go figure. I bring it up not as a suggestion for you, but just what happened to me. You touch on another topic that I feel very passionate about, medical care. Sadly I echo your sentiments about insensitive doctors. A lot of times when people ask me what I do, I say “medical advocacy”, and then clarify by saying “I mean my own”. I don’t think people realize how hard it is to be sick and then have to advocate for yourself in a system that is not running that well. Doctor’s seem under a lot of pressure to do short office visits, and in complex cases, it takes time and a doctor who is a good diagnostician. Finding a good diagnostician is really really hard, they are a different breed of doctor. Online reviews of doctor’s and their staff are the best thing ever. You cannot imagine the crap that doctor’s used to dish out back in the day when there weren’t internet reviews and they could say stupid things and not be checked. (here’s looking at you, to the doctors who told you to get pregnant). I hope you fired both those doctor’s btw. Again, thank you for your lengthy post and talking about this. You are not alone!!!!!
I am so very sorry you have had to deal with this all these years. I want to thank you for your bravery in even broaching the topic on your blog – it will inevitably be a help for so many women. You spoke so eloquently about such a difficult topic and I must commend and thank you for that. I hope you are able to continue to find some semblance of relief. I’ll be thinking of you.
Kate Burke says
Thank you for this post and bravo for your honesty and for taking back control of your life. You are right: endometriosis and women’s health is a social issue and a feminist issue. True equality means being heard and taken seriously. Best wishes.
You are such an inspiration – you make me proud to be a woman. I, too, suffer from a different chronic disease, but just reading your experience, how honest and real you are about it, made me feel less alone. Love your blog, love you.
Jane, thank you so much for sharing your story. I’m a medical historian and I’m working on a project on the history of this. It’s tragic how many women have been ignored or misdiagnosed and how we still have to fight for the right to control our bodies and dictate our healthcare.
If you’re interested, here’s my story, on how I got better care when the doctors thought I had cancer, than when they thought it was endometriosis. The resulting chaos led to severe trauma which I am still recovering from.
The post is here: https://fromthehandsofquacks.com/2018/11/27/living-with-medical-trauma/
Wow, I am a long time reader and it is staggering to me that you were able to present such beautiful work on this blog while living through what sounds like actual hell for so long. How amazing you are! I am so incredibly sorry that you and so many other women have to deal this. Thank you for sharing your struggle with us and shedding light on what is too often kept in the dark. Sending love and hugs to you and everyone out there dealing with pain.
You’re very brave for sharing with your readers about how you are dealing and coping with endometriosis. I can only imagine the pain and struggle that you have been going through and the worst is to be told by doctors that there’s nothing you can do or belittle your disease and pain. I’m glad that the changes in your diet have helped and cut back on the pain. You’re really brave and strong. Sending you all my love and warmest wishes.
Long time sufferer here. 3 x lap s.
My advice…make sure your surgeon uses laser not a knife
But first and by a mile most helpful is to stop your periods by taking the pill continuously with as few break s as possible. 6 months without a break will improve your pain significantly. A lot of doctors don’t know this but they will agree it’s safe. Least amount of side effects approach but with most amount of benefits.
Last thing if your in pain on a daily basis it’s likely you have extensive endo ..I have stage 3.. and I’m sorry to say likely to have a lot of trouble getting pregnant.
That said obviously I’m not a doctor and everyone is different. Also your diet seems to be helping you a lot which is amazing.
Wish you all the best and thank you so much for raising awareness of this painful condition.
This post was written so well, Jane. You truly captured what life becomes when one lives with a chronic illness/pain. I was just diagnosed with fibromyalgia in August and it brought my life to its knees, and then lower and lower…I too thought about suicide. I’m a painter, so I too work at home – but I’ve stopped painting for now – I just can’t. Besides the diagnosis itself, you could’ve been writing about my life in terms of what you go through. I am so very sorry you have to go through all of this — but I commend your courage in sharing as it *will* help and validate others, and for that I thank you <3!!!
Thanks for sharing such a traumatic experience with us. Revealing such a private embarrassing matter helps others who do not need to suffer silently. I do not suffer from endo but have other digestive issues which are mitigated through a healthy diet. You will hear that more and more from docs and people in general. Pure food is the way to go. It also makes you feel and look better. One of the things that resonated with me after reading this is how many people who look vibrant and spectacular and are able bodied like you are dying inside. This is why people shouldn’t judge others. You never know what ailments plague someone. They might look perfect on the outside, but inside they need TLC. I hope one day you will be able to lead a pain free life Jane. You and I both share a love of fashion and beautiful things. That keeps us whole despite whatever we are going through on the inside.
Jane, I’ve been a long-time reader of your blog and am so glad you’ve taken the time to write this post about the struggles you’ve been facing all these years. I know you’ve mentioned it in the past, but the detail on this particular post is really bringing out how awful endo can be. I didn’t realize that there is no treatment to eliminate it. Hoping that the coming months and years will somehow get better for you, chronic pain is difficult for me to imagine since I haven’t experienced that, but I wish all the best for you. You have my admiration on how you have been coping with this and so in the future each and every post you make for Sea of Shoes will be considered a real gift, to us your readers. HUGS.
Hi, i have endometriosis for years and doctors had no clue. I’ve had my appendix taken out, worked up for colon cancer. I thought I had gluten sensitivity, ect… finally when it was diagnosed they wanted to have a hysterectomy. I had to fight the insurance company. Finally found a dr who was willing to take out the cyst. Now I still have pain but not as bad.
I would be very careful taking Yaz, if you still are. I was on birth control for 12 years with no issues, had a doctor switch me over to Yaz, and 18 months later I had a pulmonary embolism. After researching the drug, which I should have done prior to taking it – a mistake I will never make again, I found there are multiple class action law suits against Bayer because of the excessive instances of women forming pulmonary embolisms on Yaz. Please check it out and be safe!!!
Jane this is so incredibly relatable – thank you for speaking up and being honest – it makes those who are going through similar things know that they are not alone. I think it’s incredible you’re using your platform and voice to spread awareness, and it’s nice to see you publicly acknowledge the realities of life! That it’s messy and complicated and not always perfectly styled. I wish you well!
Thank you so much for sharing! I was recently diagnosed with adenomyosis (similar to endometriosis except the growth happens within the uterine wall tissue) which was a relief to know there was a cause, but frustrating because there is no cure. I was really surprised to find out from my doctor how common it is… but no one talks about it! They put me on birth control and that combined with pain killers means I can still function whereas before I couldn’t even stand up while on my period because of the debilitating pain. Interesting about the diet and I will definitely look into it — esp since my my mom was instructed to stop eating soy after having stage 1 breast cancer… didn’t realize it could also affect periods!
Antonia H. says
Wow, so sorry you are going through this Jane. I’ve heard of Endo but never really knew what it was about until I read this. I cannot imagine suffering like this on a daily basis. You poor thing! Glad you could find some relief along the way and hope you keep it at bay. Best wishes!! :)
Jane, I’ve been a long-time reader of your blog, & am so heartbroken to hear how much pain & suffering you’ve been through. Your hard work & perseverance with SoS has never seemed to diminish, however, which is impressive given the hardships you’ve faced.
A lot of other commenters have already echoed my sentiments, though I want to stress how beautifully written this piece is. Have you ever thought about getting a book published*? If it was anything like your blog, it’d be a fascinating read–your writing has gotten better & better over the years, & you’d have such dynamic content to dive into. I’d totally buy a JA hardcover about fashion, health, film & food.
So happy to hear you’ve found some relief; I hope the path continues in a positive direction.
*I suddenly recall you want to write a cookbook! Don’t let your dreams be dreams Jane :) we believe in you! But take your time–of course, your health comes first. <3
Ivana Split says
I’m so sorry to hear you have to live with so much chronic pain. I have a severe case of Chron disease, I had a few surgeries and they didn’t help. So, surgery is not always the solution. Chronic and immune disease are hard to treat and even harder to live with. We just have to hang in there and try to find out what works for us.
Thank you for your post. I was just diagnosed with Endo and Adenomyosis (I’m in my 40s). I’m now doing the diet and found your blog by looking for additional resources. I’m so glad the diet is working well for you. It give me hope! Xo
Please check “How not to die” book and nutritiousfacts.org to see how vegan diet might help you. Good luck!
Sorry to hear about your endo. Please try these suggestions:
Hi Jane and thank you so much for this heartfelt and detailed post. My doctor suspects I have endo and I’m terrified. I’m already vegan and have been for three years, but now I want to focus on cutting out anything processed or with ingredients I couldn’t put together in my own kitchen! I was wondering if you’d heard of the Medical Medium, Anthony William? He has some fairly specific advice including drinking celery juice every morning on an empty stomach. Have you tried it? If so what are your thoughts? Thanks again for a beautiful blog – I’ve followed you for years. Love x
Hi Jane, I used to read your blog years ago (!) and saw that your article today online. I never comment on anything, but I have to speak up here with the hope that it can help some other women who are suffering.
I had adenomyosis, uterine polyps, and hormonal acne and was able to reverse and get rid of it (now going on 2.5 years) with a combination of acupuncture, dietary upgrades as well as restrictions (no dairy/wheat/excess sugar), and regular exercise.
I had terrible pain and heavy bleeding during periods and had a D&C operation to remove uterine polyps, and the ob-gyn confirmed the adenomyosis being present as well. 18 months later, an ultrasound confirmed that the polyps returned. I’m an otherwise healthy mid-40s woman and had to ask myself, why was this happening to me? My body was telling me it didn’t like something I was doing, and I decided to ask if there was any possibility that I could improve with diet & exercise changes. The ultrasound tech actually laughed at me when I suggested it. Well, there was no harm in trying and maybe it would help with reducing my acne breakouts that I was so embarrassed to have too.
I started seeing an acupuncturist regularly. Based on what he said, my understanding was that I had excess hormone levels that were wreaking havoc, and the “blood was stagnant” in my uterus. I had a food reactivity test to determine any food sensitivities and found out sugar, wheat, and almonds were an issue for me. I had been dairy-free for several years beforehand because I had identified that it gave me awful whiteheads on my face. I already took a probiotic, vit D, krill oil, drank green smoothies, hot lemon water, etc. In sum, I had many “healthy” habits, but… I had to eliminate whatever was causing my body problems from my system in order to heal.
Anyway, the combo of regular exercising/sweating, diet restrictions, and acupuncture worked for me after about 2-3 months. I would get my period and then brace for the cramps and the crazy bleeds but it didn’t come that month or the next or the next. I canceled that 2nd scheduled D&C operation 2 years ago, and my symptoms have not returned. My lifestyle changes was hard to adapt to at first, but then it became a regular part of life, like brushing my teeth and is my “insurance policy” on feeling good.
I came upon this article after googling things about endometriosis.
I’ve been gluten,dairy and soy free since 2011- hot yoga 5 times a week and very active, my periods were always heavy and I would always past blood clots! Fast forward 2016 I got pregnant/had a c-section! After a few months of breastfeeding- I got a heavy painful period that sent me to the ER. I was soaking pads every hour. For the next years I was in so much pain- 4 ER visit, gastro issues, pain in lower back- cystic acne, thinning hair. I literally felt like dying- I’ve seen so many specialist and they all said it was post partum/stress related.
I finally got diagnosed with adenomyosis and leaky gut syndrome.
I’m due to get the surgery to see if I have endometriosis.
I now eat a gluten/grain/dairy/soy/sugar and caffeine free! And it’s helped a little with the past few periods.
I also take Vitex and rub clary sage oil bear my uterus to help with frequent urinatation.
Accpunture is effective and consistent yoga is helping.
One last thing- my aunt who is almost 70 just got an emergency hysterectomy and has uterine cancer.
So I will definitely be getting a hysterectomy in the next few years.
Pablo Alejandro says
May you stay strong. Prayers! <3
3a Moto Leather says
May you stay strong. Prayers! <3
I can relate to your story, I felt the same way since my 20’s, until it got to the point one doctor said it could be colon cancer at 37! Lucky me I was checked and I was diagnosed with endometriosis and not cancer! I have been on very low dose birth control pills for 18 years now, but the trick is to take it every day, forever, so you don’t have periods. My endo was reduced by 30% in only a few months of doing this, and I have been living pain free ever since with no consequences or side effects. My friends went through surgeries and the endometriosis always came back. Hope this can be of help to someone suffering.
Just found your post and I am so sorry that you are experiencing what I have for decades! Have you been tested to see if you are Celiac? Get tested, get the results and then go Gluten Free and do not cheat one bite. I wish I had know that I was Celiac. It would have save me so much pain. But even if you are not go Gluten Free. Celiac and infertility go hand in hand
Caroline Cloutier says
When we have endometriosis, not only we have to cut on soy, red meat, caffeine, sugar, dairy, gluten, alcool… but also eggs! Eggs are the worst thing to eat for the reproductive system. Check that out: https://nutritionfacts.org/video/eggs-and-breast-cancer/
Also consuming seaweed might help; https://nutritionfacts.org/video/how-to-treat-endometriosis-with-seaweed/
Nutrition is the keystone. I am now completely plant-based, without grains, and my life is getting back on track.
It won’t work. Eggs are about the most important thing you can keep in your diet.
Read some of the Instagram accounts where they give up everything except plants and they just get sicker and sicker. They add eggs, (eventually and a little fish and they feel so much better.
I think its about finding a balance. Not imagining that certain foodstuffs are inherently bad and will call you illness. After all there are people with terrible diets who live well in to their 90s.
I can relate to having chronic pain like this and having to figure it out yourself basically! I did NOT have Endo but had horrible labor-like cramps during ovulation every month for a solid 24 hours for 20 years. It started RIGHT when I turned 30 and now that I am 53 it seems to have stopped probably due to lack of estrogen. In fact, I think I had estrogen dominance before but no doctor thought anything was wrong with me except for a couple of uterine and ovarian cysts they said they didn’t think were big enough to hurt. I had chills, nausea, ovary pulling feelings and the labor like cramping as well as it would make me extremely constipated. No answers from the doctors and they tried several different types of birth control and nothing helped. Eventually I was told they thought I must be ovulating right through using birth control anyway so I got off of it. Then I found people on YouTube and that seems to always help me. I tried a vegan/vegetarian diet, heating pads with caster oil packs which seemed to give a little relief but nothing completely stopped it. I also kept a food and pain journal. The things I learned is that sugar was a HUGE culprit in making it worse, almost instantly! If I could keep myself from getting constipated, it usually wasn’t as bad so I would make chia pudding which is the best source of fiber for me. I also took some wild yam hormone balancing supplement cream and would put it right in the area of my ovaries on my stomach and it seemed to help a little too. I hope you all can figure out what works for you and finally get relief. It is horrible and I don’t wish it on anyone!