I went searching for some other Endo blogs on the internet yesterday. While I was reading through many of them, they seemed to follow a certain pattern which kind of saddened me. Every single one that I came across told the story of a poor girl, struggling with Endo, while taking a series of hormonal treatments, drugs and who had been through heaps of surgeries. I know for many of these women, the blog is a form of release. It is almost like a diary, where you can share your pains and struggles and have others acknowledge and support you. The thing was, I found their stories so sad and they made me so angry. I just wanted to fly over and give them a great big hug. It saddened me that these women had gone into such a deep state of disease that their only options seemed to be more surgery and painkillers.
I find this really difficult. I want to tell them that there is a better way! I want to share with them that drugs and surgery are not their only option! That there is hope and there is real healing! Trouble is, they have been through so much misleading hope from doctors and surgeons that they seldom believe me or want to allow that dreaded feeling of “hope” to enter back into their minds.
It is hard for me to read these stories. I find it hard to go onto endometriosis forums or support groups. Somehow it affects me in a negative way. I feel like the bridge between where these women are at is so wide and so far that I can’t quite reach them. It is like I am standing on one side of a massive river that is flowing at a rapid speed beneath us and I am reaching out to them, trying to show them that things can be better on my little island, but the bridge to get to me is metres from shore. All they would have to do is take a leap, jump over and they would find a much better way of living, but somehow that leap is too scary, too daunting and so they stay in that realm of endless struggles and pain. I know I want to help them more than anything but a massive part of me also feels somehow helpless.
I have been there. I have lived that life of pain and suffering and even that nasty space, where you suffer from a self-loathing that is so destructive and frightening. I can relate to everything they write about, which is perhaps why it affects me so much, and yet I also know that in that space you don’t want to hear that “there is a better way” voice. I know it is kind of strange but the thing is, when you are in that space, you feel you are doing the best you can. You are coping and that “coping” gives you a sense of power of it all. To take a leap of faith into a new method of healing is scary. It means letting go of what you now know as a “coping” mechanism and trusting in someone else’s theories. Someone else who isn’t you. Who hasn’t necessarily been through what you have been through. Someone who proclaims things that you can’t even imagine. Someone who indirectly you hate for having a pain-free life!
I get that. I totally do and so… I feel somehow powerless to help.
I also find it affects me on an emotional level. It brings up so much anger at doctors for their poor diagnosis, for giving women false information and for putting ideas in our heads about “endometriosis cannot be cured”. I want to fix it all! I want to change it all and I want to tell women all around the world that THEY CAN BE HEALED OF ENDOMETRIOSIS! I want to go and tell the doctors that they have no idea what they are doing or talking about! I want to share with women who have “really bad period pain” that it isn’t normal and to share with them the importance of choosing a better way of eating! I want to tell women about the dangers of the contraceptive pill and soy milk and all those nasty toxins we have in our lives!
The thing is, I feel like I am traveling down this road on my own quite often. It feels like my “Natural Endometriosis Blog” is the only one out there, shouting this voice. I find plenty of blogs about natural cures for cancer or eating raw food or healthy living options but it doesn’t seem like any Endo blogs express the amazing healing powers of Natural Healing.
Please….if you know of any, please share them with me!
It also creates a strange feeling of pressure. I know I shouldn’t do that to myself but in a way that is the whole point of this blog. See, I feel like, if I actually do it, if I actually manage to completely CURE myself of Endometriosis, then I will have it. I will have PROOF! I will have a guarantee that I can share with all those doctors and w0men out there who don’t believe it can be done. Yes, I know “going natural” has massive benefits and it does make it all so much better BUT I want to cure it. I want it to be gone! That to me is the ultimate result! That to me would give me EVIDENCE that I can actually spread to everyone out there, so they can do it for themselves. Saying to someone, “Follow these tips and you will feel better with endo” is not the same as saying, ” I did this and that and now I no longer have endo… AT ALL! See what I mean?
So, I will continue to write my blog and hope that the answers to true healing will find me. And if along the way I am able to inspire and help others, even in just the smallest way, to join in my journey to true healing, then I have achieved enough.
Eventually, we can all then create and share a sense of hope to those women suffering with endo and spread our message of true healing!
This Post Has 32 Comments
Eu sou brasileira e não falo inglês, mas acompanho seu site pelas traduções do Google. Gostaria de parabenizar você pelo site. Hoje eu estava muito triste, por causa de umas dores que senti e você me animou. Estou fazendo tratamento natura tem algumas semanas. Mudei a alimentação, faço exercícios e deixei o anticoncepcional. Eu agradeço imensamente pelas palavras de fortalecimento e entusiasmo. Gratidão.
Thank you for the wonderful words of support Jodie. It is great to hear and it is lovely to have some feedback 🙂
Glad you are more informed. Just keep searching and you will find heaps of answers.
Hi there Melissa,
I just discovered your amazing blog and want to say thanks so much – it is so wonderful to read all your positive advice compared with those other sites you mention in the article… I am newly diagnosed with endo (I’m 48!!) and i have been researching on the internet and yes, lots of those sites really got me down and I had a rocky couple of months largely triggered by so much negative stuff i found on the internet!
I am a naturapath and herbalist by training here in the UK, and like you, I am pretty much determined that I am going to find a way to cure this completely, using natural methods, even if it takes some time to get it all together!
I have been gluten free since my diagnosis 3 months ago; and its already helping..
I do have an appointment with a good gynae in 3 weeks, but I am SO aware of other options that i’m not going to be talked into anything i don’t feel right about…
So just wanted to say thanks and i’ll definitely be back here to read more;
And I’m sure lots of those girls will come across this great site eventually – you are doing great things here!
Thank you Dianne and I am so happy it is helping you feel better. It is wonderful to hear 🙂
I was properly diagnosed with endo in 2002 at the age of 31, after undergoing surgery to have a 8 cm cyst removed. 3 months later I ended up in the hospital’s emergency room in severe pain again. My doctor performed another pelvic scan and discovered that I again had a cyst bigger than 6 cm. I was operated on again later that week and after surgery I was told that I have no other option but to try the Zoladex implant for at least 6 months because the endo was destroying my right side. Despite having the Zoladex implant and being in menopause, the cyst re-developed again and 3 months later I again found myself having surgery (3rd op in just under 8 months) and this time the doctors had to remove my right ovary and my appendix which also looked like it was about to rupture. My doctor suggested that we continue the Zoladex treatment for a year because the endo had stuck my bowel to the uterus and was causing havoc inside. I trusted my doctor and I had also been to see a professor and he basically said the same and I didn’t know too much about endo then, except that it was causing such pain that I thought I was going off my head. The year on Zoladex was not fun to say the least. I battled to sleep and there were days that I was so frustrated that I felt I could throw my computer across the office but with God’s help I got through it and the fact that I didn’t have my period definitely helped ease the pain a bit. After a year I came off the Zoladex and almost immediately the pain returned. My doctor kept scanning me and monitoring me on a monthly basis because he could see a mass sitting between my bowel and my uterus. Then I started with rectal bleeding with every period and I had to go and see a surgeon to perform a colonoscopy. The colonoscopy confirmed what I had been suspecting, that the endo had worked its way through my colon. The surgeon confirmed that part of my colon would have to be removed. At that stage I was having 3 weeks of excruciating pain every month and I was battling to focus at work or sleep or just have a normal life.
June 2006 I finally agreed to having op no. 4 and had major surgery to remove the damaged part of my colon. The operation was successful but it was hell and I wouldn’t wish it on anyone. The surgeon said that had we not operated I would have had a passage between my colon and my vagina and that would obviously have caused even more havoc.
In 2007 I again presented with pain and we discovered that the endo was then damaging my left side as well and I still had unexplained pain on my right. We again monitored it on a regular basis and Zoladex was again suggested but I then refused.
In 2010 I had op no. 5 to remove a cyst on my left ovary after blacking out from pain and undergoing barium tests etc etc, doc then discovered a hole in my peritoneum on my right side where the endo had tunneled its way through. A hysterectomy and oophorectomy was suggested but I refused to give up on my dream of still having a child and I also couldn’t see myself going through menopause again.
Nov 2011, I had op no. 6 to remove another cyst on my left ovary and then the doc clamped the hole in my peritoneum closed to prevent any blood from entering but we have since discovered that endo is still stuck in that hole and still throbs with my cycle.
So to cut a very long story short, after 6 operations and my doctor having one solution for me, a hysterectomy and menopause, I decided to do my own research. I cannot believe that it took me soo much suffering and soo long but too late for regrets and at least I still have my uterus and my left ovary. Nov 2011, I discovered Melissa’s blog and I changed my way of eating and added more anti-inflammatory foods, fruit and veg. It has been 10 weeks today. I had 4 days of pain last month, whereas before I would quite often have 2 – 3 weeks of pain every month. My period pain was still quite bad this month but there has been huge improvement and definitely a lot of truth in Melissa’s research. So, would I follow the doctor’s advise of Zoladex, my answer would also be NO. I have discovered that most doctors only know of the medical way of trying to heal and they don’t believe in any natural forms of healing. Even now my doctor thinks I am wasting my time but I figured I have so much more to gain than to lose.
I hope this helps you in some way. All the best!
I am so happy to hear that you decided to treat your body in a different way than taking Zoladex injections! That is fantastic to hear! I can certainly agree that often the side-effects are worse than the solution in many of these cases!
It is a pleasure Jeanette and I hope you keep following as I discover more 🙂
Hi Melissa- I want to tell you thank you for having this blog. I have been reading your posts and you are helping me concrete my decision to treat my endometriosis naturally.I have been doing research over the past couple of months to create a treatment plan for my endo and you have done many of the things that are recommended or helpful to control it. I meet with my doctor today to tell him that I wont be taking the treatment he has suggested. After diagnosing me in November, during surgery to remove fibroid tumors, he told me he found a small amount on my left side and he recommended that I take part in a 6 month long treatment of Zoladex injections, that would shut down my bodies natural production of estrogen. This would send my body into a pre-menopausal state at the age of 35. After initially telling my doctor I was concerned, he told me I had no other options. Thing is I have found so much information on the internet, that says I do have other options. I recognize that this will be a life style change in the way I eat and care for my body, but I think it can only benefit me and make me healthier. The most common side effects of the meds he wants to put me on is anything from night sweats, depression, no sexual desire, fatigue. As women, we know what just those effects can do to us. And then the question I have, is what effects will that med have on my body in other areas. I feel I would be causing more issues in my body than I would be fixing. There is no cure for endometriosis, but I think with creating a healthy environment in our bodies that it can be controlled and maybe diminished. So thank you for sharing the things that you have done.
Thank you so much Melissa. That is perfect! I am always looking for others that have cured themselves of endo! I will be sure to get the book 🙂 I will sign up to be a member of the endo association too.
Hi Melissa. This is not a blog, but I thought you might like the book Endmetriosis: A Key to Healing Through Nutrition, as well as the Endometriosis Association’s Endometriosis: The Complete Reference Guide For Taking Charge of Your Health. There are links to them here on the Endometriosis Association webpage: http://www.endometriosisassn.org/cart_book.html.
They both have a lot of testimonials from women who have healed by going the natural route! I read them when I am feeling endo-alone :).
By the way, the Endometriosis Association is an international organization that you can be a member of (I am a member). Thank you for your blog! It does help me to read your thoughts. You are not alone.
Try more of the raw stuff! The greener the better 🙂
That is awesome to hear Benita! You are doing so incredibly well to stick to Raw food! It is such a cool thing to hear your journey is going well 🙂
I read it on facebook! Brilliant Idea! I can’t wait to read it! Let me know when it is ready so I can share it on my site 🙂
What an empowering site you have here. I agree with what you say about being so saddened by the stories of these ladies. That is why I decided to gather the stories of others and include them in my book. I wrote my own story for a newsletter and it is sooo healing. xo
That is lovely Allanah. I realise that everyone needs to travel their own journey in life and hopefully some find me along that path 🙂
I think you can probably gather from the comments above that you’re providing a very worthy service to a lot of women.
Sometimes, when I’m teaching yoga, I feel frustrated when I see students pushing themselves and knowing that it does more harm than good. I want to give them the benefit of my experience so that they ease up on themselves. And when feel this I always remember this quote, that i live by:
“Open the door – they’ll walk through it when they’re ready”
Not at all! I can totally relate to what you are saying – self pity is easy with endo but it also doesn’t help us feel better overall. We need to be proactive about our health and what we do for ourselves! You have done so well doing all those changes in such a short time! Brilliant work! 🙂
I take Flaxseed oil daily – it has heaps of Omega 3!
Here’s to more pain free days! 🙂
Thank you Janice and I am sorry for the struggles you have endured so far. You are an amazing women to go through all of that and still be so positive!
Ginger is also a natural anti-inflammatory and blood thinner! I love it!
It is my pleasure Janice and I hope your recovery is continued in the future!
I am from Antigua in the caribbean and I have been reading your blog for a few months now. I began experiencing unusual menstrual pain in 1997. I was eventually diagnosed with endo by laparoscopy in 1999. Since then it has been a long and painful journey including many doctor visits and 3 surgeries to date including a hysterectomy in 2006. The pain did not stop with the hysterectomy and so I had to endure 5 months of Lupron in 2010 (should have been six months but I was sure that sixth shot would have killed me). From October 2010 I have been following the endo diet and the pain has reduced significantly. I also use progesterone cream without parabens.
Recently, from your blog I came across the benefit of using ginger and started using it in December. The pain reduced even more.
Thank you, Melissa for the information you continue to share with us endo ladies.
That is so wonderful Abby! It is amazing how simple it is!
I came across your blog towards the end of November 2011 after undergoing surgery for the 6th time. I was frustrated with my doctor for always telling me that a hysterectomy and oophorectomy is my only hope, so I decided to do some research of my own. I am so grateful that I came across your articles and it has already changed my life.
I have changed my diet quite drastically in the last 7 weeks by going dairy free, wheat free, gluten free (most of the time), sugar free and I have introduced a lot more anti-inflammatory foods and Omega 3 to my diet. I eat a lot more fruit and veg and I find my body now craves the healthy foods. I have already noticed a huge difference in my pain in the last month. My pms symptoms were slight and I had a few pain days compared to the 3 weeks of pain every month in the past.
So thank you Melissa for your positive influence and all your hard work. I always look forward to reading your blog and learning from it. I was reading a few comments on twitter the other day (of other people i follow) and I hear what you are saying about how hopeless some people sound. I have even considered unfollowing some of them because when reading what they are going through it borders very closely on whether we are helping each other or just wallowing in self-pity. I know when I am in pain it sometimes helps to share it and be reassured that I are not alone but I also know that it doesn’t help to focus on the pain all the time, it just drags me down even further, so I am going to make an effort to change what I can, be grateful for pain free days and speak positive words and life into my body and not believe everything that the doctor says 🙂
Lots of love
I hope this doesn’t come across as been harsh, it was not intended that way 🙂
Thanks for sharing Vyara! Your english is fabulous! 🙂
I am aware of Carolyn’s site and have used heaps of her knowledge for my personal research too! I write articles for her on occasion too 🙂
It sounds like you are certainly on the right path and that you have made the decision to heal yourself of endo. Thank you and I will continue to write, to inspire and to help heal those that wish to be healed.
Glad you shared your thoughts and struggles. It can only get easier going forward!
Hi Sarah. It is easy to get off track but I guess it shows how beneficial they truly are!
I would have to say, juicing, yoga and emotional healing. Thanks Sarah and hope you get back on track soon 🙂
Thank you so much Christi.
I am so happy that my blog has inspired you so much and that you are finding out new things you didn’t know about before. It my pleasure and it is comments like yours that just make me want to keep going with it! Big hugs 🙂
It is great to hear you are taking matters into your own hands and being proactive about your health! I am sure it is making a difference already 🙂
Depression is sooo huge and hence why I only write when I am feeling positive too!
I have never found doctors to be a source of sympathy – Naturopaths seem to get that one much better!
Your blog was the only one I found that helped me and encouraged me to try more natural approach. and I couldn’t be more grateful!!!! Acupuncture, herbs, stress relief and diet have transformed my cycle and in doing so my life! 🙂
I was just wondering what you feel has been the most beneficial natural treatment you have tried for Endo so far. I’ve gotten off track with my diet and natural treatments and need to get back on track. I appreciate your natural approach to treating this and think what you are doing is great. =)
ITA!!! I suffer from stage IV endo…it was as insidious as it can be. I had painful periods but not painful enough to be a concern until I ended up in the ER needing IV pain killers because I was almost in shock. Even there the attending was less than sympathetic, he was a the end of his shift and wanted to go home (I had a better experience when I hited my head and had to get checked out). I had a chocolate cyst almost the size of my uterus hanging from one of my ovaries, so I needed surgery. Fortunately my doctor got rid of the thing but since he is a fertility specialist, he got me on a pseudo menopause because my tubes are damaged and to counterattack any further damage. While researching alternative treatments to complement the clinical one, I stumble upon blogs and vlogs wich a were quite pessimistic. I know this thing is for life but it doesn’t have to define me. I found out that going gluten and dairy free is a good start, I was doing that anyway as I found out I suffer from celiac after a salmonella infection. Also trying to be as active as possible helps. Maybe you get exhausted more easily but the important thing is trying not to be depressed. We might feel that we’re alone or misunderstood, but if one doesn’t take charge and finds alternative solutions to the problem, it’s going to get bigger. And doctors need to understand too, that we’re not exaggerating and we want to feel good again so we can live our lives.
I am one of the women you are writing to, one of those you are trying to help. I have read every post on your blog and probably every comment too. You have motivated me to find a cure for my endo as well – through natural healing, dieting and exercise (mostly yoga). I think you are doing a very wonderful thing. Your blog is actually the only source that gave me hope that I could do this.
I was just recently diagnosed with endo, but by way of a biopsy taken from a lump that has grown in/on my belly button. It’s very rare (and quite bizarre)! But now, without further tests, I am left wondering if I have it elsewhere inside and if so, what is the extent of it – would it randomly appear on my belly button and nowhere else? It’s all baffling.
I do have some of the typical endo symptoms, it runs in my family, and my pms and the week of my period has always been very rough. I don’t have physical pain outside of the week during my period, but as I understand it the later stages of endo can be sometimes low in pain (and the 8 years I was on birth control could have masked any pain I did have). I’m now trying to decide if I want to go through with a laparoscopy to get a definite answer if I have it (that surgery terrifies me). It’s a lot to think about, and very stressful.
But your own journey through healing has motivated me to go see a naturopathic doctor who can at least help me with my pms (depression and irritability), headaches and awful cramps. I’ve gotten my diet much more on the healthy track. I’m almost certain I have liver issues and candida overload (having all the symptoms that go along with those things). I didn’t even know those conditions existed until I read through your blog and did further research on my own. My dr has me trying out a homeopathic remedy at the moment, but I’m only a few days in so I’m eager to see what sort of results I get.
I don’t want this to be too long :), I just wanted to say Thank you!!, sincerely, for putting this blog out for women to see. I imagine you’re helping a lot more than you realize! 🙂 Like you, I truly believe natural is the way. Good luck to you on your own path, sending healing energy to you and all of us!
You are so right
Melissa you are not alone !! I am waiting to see the results of all my natural cures (by the end of this year) and you will be the first one to know . It’s just that I don’t have time to write about it. All I can say is that my endo is definitely stress related because I have cured my period pain all together except for an occasional shooting pain down my leg ( and that only happens if I get worried about something). I am now nearly on raw food diet at all times (which has cured my allergy,nearly have no symptoms at all), I am practising yoga and TM and I also have a homeopath. I love all of the mentioned as they all together make me feel great, plus…although my cist has not shrunk it hasn’t grown either in last 7 months and my stomach is considerably softer…We just have to be patient <3
I am from Bulgaria, a small European country you may not know at all. Anyway i mentioned that for you to have an idea how difficult it is to have an endo in a country, where still the only way to deal with the disease is an open surgery / unfortunately i did it 3 years ago/, or unclissified laps, as the specialist in that area are quite a few. So you can not really imagine what a treasure for me is to read your blog, which i luckily found recently 🙂 my warm hugs for you and your beliefs!
After i spent a year after the surgery/ at least they kept all my organs/ taking hormone pills, being on zoladex for six months to get my period stopped, and eventually endo with it…haahaha…seems rediculous now to me, but at the time i believed them……and like that, untill all the pain came back again, and not only during periods, but most of the time…
Anyway, thats not the reason I am writing to you, actually it is the first time i am posting something anywhere, hopefully you will get it, as my english is not my mother language;), but reading your story i found it so close to me, with your love for traveling and all the obsticals on the way, with the support of your husband , who didnt give you up despite all….and many, many other things….so for the first time i felt like i may write…
I wanted to share the web site / a fuel to optimism/, that changed my life, and hopefully turn it into better http://www.endo-resolved.com/. I found it two years ago / realy lucky i know english/, and since then i havent took a single hormone pill or what so ever, even more poisonous.
I started homeopathy , almost a year and a half now,yoga, also the endo diet, for the same period of time, almost as strictly as Carolyn Levett advised in her books. The only thing i cannot give up completely is the coffe and the cigarretes i still smoke. Nevertheless i feel like i am on the right path, and eventhough my pain is not gone, i take it, as i am just in the beginning of my conscious journey to healing of endometriosis!
So please continue to write your blog, and i am truely sure the answers to true healing will find us all, who are ready.
You are definitely not travelling this road alone!
I am such a fussy eater, what can I use to replace bread in my diet?