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If Only I Had Known… What I Would Do Differently if I Had Gotten My Diagnosis of Endometriosis

Endometriosis Treatment options

I know it is sometimes fun to go back over our lives and recognise the important lessons we have learnt within it. I certainly have learnt a whole heap and I am very glad I took the journey that I did—mainly so I can speak from experience of not just pain but also being stuck on nasty medications and hormones.

The other day I received an email from a young girl who has only just found out she has endometriosis. My heart went out to her and that strange motherly instinct took over. I wanted to go there, hug her and tell her that everything will be okay. I wanted to guide her and try and give her as much information on what to do, so she could make better decisions for herself. I wanted to present everything I have learned and given her the best head start for dealing with endometriosis.

So, I thought I would share what I feel would be of huge benefit to her and to you if you are only just starting out.

1. Hormonal Treatments

I wish I had never taken these… ever! I wish I wasn’t convinced about taking the pill or taking Danazol or any of it. I feel so strongly that it was taking these that has thrown out my natural balance in my body and left a mountain of toxins, which my body is still trying to work through. They threw out my hormones, my digestion and compounded the toxic load on my liver.

 

2. Looking after my Liver

I wish I hadn’t taken so many painkillers and looked after my liver a little more. I bombarded my poor liver with headache tablets or painkillers almost daily. Not just that… I gave it some good doses of alcohol and junk food just to make sure.

See, our liver regulates our hormones and this will directly contribute to our pain levels and the growths of endometriosis. We need to look after our liver!

 

3. Dietary Changes

Though I had read about the Endometriosis Diet many times, I just struggled to convince myself of its benefits. Perhaps I was just not committed enough or perhaps I didn’t want to believe it but it took me a long time to adapt to it—10years later I am actually following it!

To those ladies out there who are new to all this… The Endometriosis Diet really does work! It will transform your pain levels—they will go away! It is unbelievable how much our diet plays a role in how we feel and yet for so many years, I never made the connection: what we put in is what we get out.

The biggest changes are to cut out inflammatory foods like gluten, meat, dairy and sugar.

 

4. This isn’t the end of the world

I think, at the time I felt like my life was over. I felt trapped by endometriosis. I let it trap me! I was helpless toward it and it became my entire life—or rather “lack” of life. I canceled things all the time, I took on less stressful jobs and I simply made endometriosis more powerful. I wallowed in Endo for years!

I know now that we can quite easily live with endometriosis, although my mission is to get rid of it completely. It is completely controllable and manageable. It doesn’t rule my life anymore. It doesn’t even have a say anymore. I have taught Endo to SHUT-UP.

It takes discepline, like you would discipline a child. It takes time and it takes commitment but honestly my life is completely different and I can finally do anything I want. It only took me 10 years to work that out!

I only have pain for one day a month now and it is completely manageable—don’t even need to take painkillers for it!

5. Don’t keep it to yourself

I know for years I was ashamed about having endometriosis. I felt broken. I felt “less woman” and it made me think so little of myself. I never realised just how many women there were in the world with endometriosis and that I could find others who were traveling a similar journey to me! It was only through this blog that I got the amazing pleasure of meeting them all!

You are not alone and there is support for you online or in support groups in person. Don’t be scared to share and to be vulnerable with Endo. You will meet the best friends you could ever have, who will understand you and support you through all of it—without the impending questions.

I want to catch you, catch you before you choose that different road. The road that I chose for the first 10 years of Endo! The one filled with pain, tears and operations. The one with false hope and simply plastering over the symptoms. The one with added side effects, unknown symptoms and endless attempts to find the right hormonal treatment. I want you to choose the better road, the one I have finally found.

It is a road with hope and energy and joy. It is a road with endless possibilities and support and real healing. It is the road of natural healing for endometriosis. It is about giving our bodies all that it needs to heal—super nutrient-dense foods! It is about letting out anger and stress. It is about finding a way to move that works for you and a way to detox to cleanse your body.

If you haven’t already done it, subscribe to my newsletter and get regular updates on what I am doing. You can also join me on Facebook and Twitter. I also have a Private Support Group which is filled with amazing women who can support you through going natural with endo!

Hugs, Melissa x
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This Post Has 29 Comments

  1. Melissa

    So true and luckily we woke up to it all 🙂 Thanks Mechelle!

  2. Melissa

    Glad you have found my site too Sarah 🙂 Our nutrition can be such a huge benefit to endo healing. It really reduces that nasty inflammation 🙂

  3. Sarah

    I am so happy to have found this site via Pinterest! I just had a laparoscopy 3 weeks ago due to having severe pain during my cycles and cysts that were found during an ultrasound. My doctor found endometriosis as well as adenomyosis. Two years ago I had an ectopic pregnancy and then battling with infertility and the pain has been a horrible experience. I have never heard of the endo diet but am going to take a look at it and do everything I can to manage my pain. So happy to have found your site and know that others simply get it.

  4. Lucy

    Hi Melissa,

    Firstly – THANK YOU. I can not express my gratitude for stumbling across your site.

    I was diagnosed with Endo 3 weeks ago. I moved to Australia just over a year ago from the UK. After countless trips to my GP in the UK, I had given up hope of any doctor ever taking my period pains seriously. After about a year in Oz, I decided it could be worth seeing what the Aussie doctor’s thought. I was referred for an ultrasound the same afternoon and knew the following day that I had an 8cm cyst inside my ovary and suspected endo. I was booked in for surgery the following week (a week ago today). Surgery went well and the doctor has confirmed that the cyst was mainly benign but that I did have endo in the pouch of douglas and on the pelvic wall. All endo was removed and I’ve been diagnosed with stage 2 or 3 (tbc with biopsy this week).

    As every other ‘newbie’ has mentioned, this is really daunting. I would live with chronic period pain for every minute for the rest of my life if it meant that I could have my own children, and my biggest fear is that this might not be possible. The doctor has said that my fallopian tubes are ok, so it could be possible, but that we won’t know until we start trying. I’m 25, living the dream in Australia… having kids, wasn’t on the agenda, just yet 😉

    The reason for my rambling (apologies) post, was because the doctor suggested that I go on the pill. I was on the pill for a few years but found that it affected my mood and I struggled with anxiety for about a year before coming off of it. Based on your articles, I assume you wouldn’t necessarily agree with the advice to go on the pill?

    I’m seeing the surgeon next week and am going to book an appointment with a dietician, but looks like the endo diet is a good place to start…

    Any additional words of wisdom would be gratefully received.

    Thanks again and all the best.

  5. Melissa

    Boy I can’t tell you how happy it makes me that you found my site at the beginning of your journey with endo! It is super awesome Lucy 🙂
    I would strongly recommend NOT going on the pill. It really screws up the body and the digestive system.
    Yes, diet is the first thing. I promise you, if you eat the way I recommend, you will get rid of that endo pain SUPER FAST! It is amazing what food can do for your body. The course goes into far more depth than the endo diet and really provides the healing tools your body needs to overcome endo. It will be cheaper and far more effective than seeing a dietician – I provide you with about 10 consultations worth of info 🙂
    If that is not an option right now, then yes, follow the endo diet but also make sure you replenish the body with lots of good foods. It is not just about cutting out a whole bunch of inflammatory type foods. 🙂

    I can’t tell you how happy it makes me that you have found my site 🙂

    Big hugs and feel free to ask me any questions along your journey.

  6. Melissa

    Hi Dawn,

    Thanks so much for sharing your story 🙂 Oh hun. I have totally been where you are right now and I can promise you that the way you eat makes a HUGE difference in how you feel. It is profound and every little change all adds up to an amazing picture of balance and healing.
    I am nervous about the Clomid suggestion – I heard of one lady who lost all her hair because of it!
    I think you are already far stronger than I was at the time but perhaps recognising that you have inner power and choice and that doctors are ultimately there to consult YOU and not the other way around. It is your body and you need to do what feels right for you!
    I would really encourage you to incorporate seaweeds into your diet. They are amazing for endo and reducing so much of the imbalances we share with your hormones.
    Where about in New Zealand are you? I am south of Dunedin. We can always have a chat on the phone if you like 🙂 My personal email is melissa@endoangel.com.

    Hugs and so happy you commented and shared!

  7. Dawn

    Hi Melissa,

    I had a laparoscopy 3 weeks ago and was diagnosed with stage 3 endo, so this article is for me too!
    It wasn’t really a surprise to me as I’d read up a lot about what could be causing my pain and a lot of the symptoms of endo rang true with me. But the doctors hate it when you say to them “I’ve been reading on the internet and I think it might be….”!
    I’m 34 and have never had any problems with period pain until…I came off the pill 2 years ago with the hope of getting pregnant. 17 years on the pill – good and bad effects I guess! The pain got progressively worse – I have long cycles (now, not when I was on the pill) and I’d be in constant pain for three weeks before my period started.
    I had mixed feelings about being diagnosed – relieved that there was actually something wrong with me and that it wasn’t all in my head (you just kind of get used to being in pain), but then upset that there was something wrong with me!
    During my week off after the op, I read up even more about endo and the endo diet. I was sceptical at first – I think that I eat pretty well anyway – no processed food, everything home made, and I’ve always strongly believed in a ‘balanced diet’. But, as it seems like the only option and the only way of doing something positive to take control of the situation, I’ve thought hey, I may as well give it a go.
    It was a bit daunting at first, and I got a bit stressed out with the thought of not being able to eat this and that – the hardest thing for me is the dairy, but after a couple of weeks, it hasn’t actually been that bad. I focus on the yummy things I can eat – avocado, seafood, chicken, kumara, berries…. and not on the things I shouldn’t eat. Luckily it’s summer in NZ now so the shops are full of great fresh produce! And I’ve been having fun trying out new recipes – adding pine nuts and walnuts to things, trying out gluten free products etc (the pasta isn’t bad!)
    And reading blogs like this have helped me to not be too hard on myself and be realistic. If I have a bit of milk in a cup of tea once a day – it’s ok, I’m not going to explode. Red meat once a week/fortnight – it’s got to be better than 3+ times a week.
    It’s only been a couple of weeks, so way too early to say if it’s working (I had a period a week after my laparoscopy and it was horrific, but I’ve read that’s to be expected?) but I feel I’m taking control of it. And, although I don’t really need to – I’ve lost 3kg in the last couple of weeks! And I feel like I’ve been eating more!
    The next hard part is seeing my fertility specialist next week (3 unsuccessful rounds of Clomid – not ovulating and endo?) and my follow up appointment with the surgeon in a couple of weeks time. I’m interested, but apprehensive about what they’re going to say/suggest and what their thoughts on the endo diet is. I also need to get my partner to understand that just because the endo’s been zapped off now – that doesn’t necessarily mean ‘I’m fixed’!
    Sorry for the essay, but I’ve been meaning to comment on here for awhile, and thought other newbies might find it interesting too.
    Keep up the good work Melissa 🙂

  8. Rushi

    Hi Melissa,

    Just Law week I was diagnosed with possible Endo with 2 chocolate cysts on both my ovaries. Possible as here being an Asian country gyno’s would normally agree to a laparoscopy till your married! I am currently at work and did nothing but read your posts one by one today.
    Many thanks to your articles. You have given a sense of hope for me on how to deal with Endo in an endless web which constantly screams “no cure”

    I wish you all the best in your journey and pray you will be blessed with all your wishes, hopes and dreams.

    One more thing. How can I join your group? I would like to be a part of the the group to share my experiences as well as receive the world of information shared.

    thanks alot.
    Rushi

  9. Melissa

    The key to healing Endometriosis relies on more then just regulating hormones. The question of why your hormones is out of balance needs to be addressed. Eating a pure clean diet and flushing out toxins will reduce it coming back 🙂

  10. Alaine

    Hi there!

    I just got my endometriosis and had csection at march 2013 I’m now 24 years old.. I started having my dysmenorrhea at age of 20 I thought its normal because I am stressed with my college year. When I got a job after college. It worsen.

    My cyst was color red. The oby said that I should get some progesterone pills because my cyst came in a very short period of time (3 months)
    I am now into endo diet and took progenol(pinus maritima) and tried nuga best. Please tell me that this endo disease will stop and I’ll have a worry free life.

  11. Melissa

    That is amazing Teresa and thank you for sharing 🙂
    Congratulations on your two little ones too. It all makes a difference on how we care for our bodies.

  12. Melissa

    Hi Devran,
    Perhaps it is time to find a new Practitioner or doctor to work with. Someone that yells at you, is not a good approach, no matter what you are doing. You can take matters into your own hands and you can get better.
    Don’t trust someone over your own inner knowing. Find someone you can trust with your body if you must but never go against your instincts sweets.

  13. Devran

    Hello,
    I have been diagnosed with endo when I was 25, am now 27, have been on lupron for over a year and on the pill before that and after that. Since september i’ve been on the endo-diet and started the pill again because of my last month on lupron. Since january i quit the pill because I felt just changing my diet wasn’t enough, it just felt as if i was fighting fire with fire. I had too many side effects of which one was being depressed, I didn’t leave my bed for months. But I went to my endo-specialist and she was really angry with me for quitting the pill and said i’m risking a lot of things like organ failure etc because i have stage 4 endo.. She’s kinda scaring me back on the pill but I still don’t know if i want to. We didn’t talk about the diet or ANY positive things she was just yelling at me for quitting and calling it a very dumb move. sigh. Just when I thought i was finally taking matters into my own hands and living healthy..

  14. Melissa

    It is a pleasure Jennifer. I suffered from a miscarriage last year too and came to a strong resonance that my body was simply not quite ready. She can fall pregnant and she can get better. You are a special sister to share this and research information for her 🙂 We also have a support group which might help her: https://www.facebook.com/groups/endonatural/

  15. Jennifer

    Greetings, my sister was diagnosed with endometriosis after she miscarried several years ago. It was heart breaking to watch her lose a baby and also lose hope of ever conceiving again. She is incredibly sensitive about the situation which I completely understand. I am going to forward her this article, I think she could find some positive healing from reading this. Thanks so much.

  16. Melissa

    Hi Heather and welcome,
    We all have to start somewhere and I also felt hugely overwhelmed when I first started. For me, it was about taking things slowly and exploring new things as I went along. Start changing your perception of eating as searching for foods that heal and nourish – rather then just focusing on elimination – this puts a negative feel on the whole thing 🙂 Exploring new foods that heal and nourish is heaps more fun!
    Explore superfoods and nutrient rich foods and just start adding those in. Don’t worry about cutting stuff out for now. Just add more good stuff in and you will start to feel better – mentally and physically. The choice will become more natural with time.
    Just eat more greens 🙂

  17. Heather

    Melissa,
    I’m starting the endo diet today. I was diagnosed 6 years ago but have had pain since I was 13. (I’m now almost 30 yikes!) . I have to admit I am intimidated by this lifestyle change. It’s daunting at the first wouldn’t you say? I started looking for answers outside of the typical responses my doctor gave me. After losing an ovary to chocolate cysts last year and being put on Lupron for 6 months and the pill after that (I had taken the pill most of my adolescent and young adult life. It wasn’t until my husband and started trying to conceive that I ever went off of it.) Anyway, needless to say I’m tired of it all. I’ve also been on anti-depressants for the last year because I can’t seem to bounce back. To much disappointment, weight gain, and frustration. My question is this, in your opinion should I stop the contraceptive pill right away or wait until I’m more acclimated to the diet? I can’t go off of my anti-depressants right away because just stopping them can have serious consequences, but I do plan to taper off of them this month. My thought is if my body is going to get the healthy stuff it needs I’m bound to feel better emotionally.
    My other concern is this and it may sound ridiculous. I feel guilty about needing to change my diet. How silly is that?! But truthfully I feel guilty for the money I have spent on the unhealthy food that is already in my cupboards. I also feel guilty because this may be a drastic change for my husband as well. He fully supports being healthy but neither of us have been raised in households that believe in the “organic, holistic, all natural trends” that this diet certainly embraces. It’s so foreign to us and very much him I feel guilt because I can see his hesitation and worry if I’m just getting sucked into a trend, or if it will work at all. How can I help us both adjust and feel less well, I suppose threatened would be a good term. Not because its bad but because its all so different than our meat and potatoes upbringings.
    I’m so sorry if I sound negative or insulting. By no means do I intend it that way. I just feel overwhelmed by this task of healing myself physically, emotionally, mentally and spiritually. Thank you so much for your articles and your support of us newbies.

  18. Katrina

    Melissa, thanks for your reply. I agree about being nice is not always enough. I myself find it difficult, but we have to axe out physicians who are not benefitting us.

  19. Katrina

    Thank you for your quick reply, Melissa.
    My digestion is not the runny type.
    I will definitely try out the juicing. :))

  20. Melissa

    Hi Katrina,
    It kinda depends on how your digestion comes out – if it is runny then it is not a good sing 🙁
    Taking IVF drugs won’t be an indication of digestion absorption. The drugs go straight into the blood stream.
    The best you can do is ensure your body has adequate digestive enzymes. You can buy digestive enzymes which will help with digestion but overall it comes down to eating nutrient dense foods: dark leafy greens 🙂 If you want to test the theory, you can try a juicing. It makes the absorption super easy as your body doesn’t need to break anything down – liquid goes straight into the blood stream 🙂

  21. Melissa

    Hi Katrina and welcome 🙂
    I have had a few different acupuncturists and there are definitely ones that hurt. I don’t go to those 🙂
    If your instinct is telling you to avoid certain herbs, then it is best to listen to your body.
    You need to feel completely confident in the therapist and if not, find someone else. Being nice is not always enough. I tried that for 3months and just got bad diarrhea for 3months. You need to notice real healing and feel good about the process or it won’t benefit you 🙂

  22. Katrina

    Dear Jeannie,
    I did acupuncture (acupuncturists also prescribed chinese medication for me) 2 years ago to improve fertility, and that backfired on me because the acupuncturists and I didn’t know I had endometriosis and the drugs I think possibly caused the endo to come out and become a monster.

    The first acupuncturist I tried actually works with a fertility clinic (who is from China etc) but she would stick like 8 needles into the abdominal area to the left, right and below the navel and they would HURT when she sticks them in and they would leave dark needle marks/scars for months after that. She prescribed some herbal medicine for me, but now I know better not to take this drug called “Angelica sinensis” or “dang gui”.
    The second acupuncturist I went to seemed more skilful. I didn’t feel any pain when she poked the needles in, but she did also prescribed dang gui because we didn’t know I had endo. She also would acupuncture my back whenever I have too much pain in front. She’s v skilled and nice.

    Can you tell me in detail what your acupuncture treatment is like (does it hurt when the acupuncturist insert the needles and where did the acupuncturist put the needles? Does your acupuncturist prescribe any herbs)? Because I am now afraid to try acupuncture and natural herbal treatment.

  23. Katrina

    Hi Melissa, I’m reading Madeleine’s story, and it says that grains don’t do well with her.
    Does an endo diet involve cutting off all grains? Or grains are still good for us, just that some people are different?

    I myself have no problems with digestion, it’s perhaps over-digestion (I need the restroom within 30min of every meal). I’m wondering if this also means that my body is not good at absorbing nutrients (I came to this thought when I recently underwent IVF treatment and though I was given a very high dose of stimulatory drugs, my ovaries practically did not respond to them AT ALL). I’m very sad because IVF seems to be the last thing I can do to conceive cos my tubes are blocked… Do you happen to have a post on absorption of nutrients too?
    Or any advice will help! Thank you for being a warm guiding light in our lonely and painful endo paths! U’re absolutely the endo angel.. 🙂

  24. Jeannie

    I can totally relate – I was miserable after 5 years of hormone treatments and a laporascopy. I was just about to undergo my second laporascopy but started researching the Internet for alternative treatments. I just started the Endometriosis Diet and acupuncture 8 weeks ago, and the results are nothing short of a miracle. Thanks for your article!

  25. Amber

    Love this article! You are so right about the endo diet. It took me about two years of considering changing my diet before I actually did it and I feel so much better already. I am still eating meat, but I know eventually that will need to let that go too. I give myself one free day a week, Saturday, to eat whatever I want, and even though it’s good while I’m eating it, my body feels crummy afterwards. Proof that sugar, dairy and wheat are just not what my body wants.

  26. Melissa

    Hi Madeleine and it is lovely to meet you and hear your story.
    I am glad you came to recognise that grains don’t work so well for you 🙂
    When we have had trouble with our digestion, we often struggle to digest meat aswell. I know I know I struggle to get enough stomach acid for it and often land up with heartburn when I do it.
    Check out my blog about this: http://endoempowered.com/stomach-acid/
    Sometimes, it does take a good detox to feel better. Just keep at it and believe that you can and the answers will come to you!

  27. Mechelle B

    So true, Melissa! My biggest regrets? Agreeing to Lupron treatments, and not making dietary changes sooner. What’s done is done, and making good choices now. 🙂

  28. Madeleine

    Hi Melissa,
    I’ve just stumbled upon your site. Seems like just what i’ve been looking for. I am now nearly 41 years old and after years of Period pain and pms I was diagnosed with ‘minimal’ endo by laporoscopy when I was 27 years old at that time I was told it was a chocolate cyst on an ovary and also in the ‘pouch of douglas’. I don’t know how long I had it before that diagnosis. I had no problem in concieveing and had first child at 31 and then 2nd child at 37, up until my first child was 3 I was eating very unhealthily – addicted to refined carbs and sugar due to my child having problems with eating sugar and refined carbs I totally overhauled my diet and went on a ‘paleo’ type diet grainfree, sugarfree, and a little raw dairy but I do eat quite alot of meat due to not eating grains. We are still grainfree but a few things slip in now and again. I have recently in the last year been resorting to dark chocolate – in any form, cocoa with honey to sweeten or chocolate bars which obviously has sugar in. I’ve also been drinking green tea – i’ve felt very tired and just resorted to caffeine as that’s always been my instant pick up seeing as I don’t drink alcohol (haven’t for 14years) and I do mostly eat a very healthy diet except I know that it would be better if I gave my diet and cooking more time. I was very interested in Western Price principles of diet and wonder if that would help with endo? Anyway I know that the caffeine has been a problem even though its not daily cups of strong coffee. I am getting horrendous ovulation pains that last for over a week – I am worrying it’s something worse so I’m going to the doctor again. I really don’t want to get a laporoscopy again as I don’t want to go under a general. Another thing is that I have been breastfeeding my children for many years as my 3 year old still nurses and my first child weaned at age 8years so its been nearly 10 years! I know my body is depleted and needs so much more. I am feeling overwhelmed and daunted as to what to do – I went to the doctor a couple of years ago about ovulation pains and got a transvaginal Ultrasound and they said that there was nothing bad on it and that they looked like healthy ovaries but that was 2 years ago. The doctor offered another laporoscopy to find out more but I declined they said it was probably just endometriosis and that I could go on the pill – but no way would I do that again (did that in my 20’s and like you regret it). So I am looking for all the natural alternatives – I’m already living pretty healthy lifestyle and I use all natural products but my pains have got worse – which is scaring me. Partly I think its the caffiene from the dark chocoate and green tea that’s making pain worse but I’m worrying its more serious. Where can I find out about the enometriosis diet? I do feel that my body needs to eat meat and I know that grains even non gluten grains don’t do well with me, so I’m worried about cutting meat out. I’ve also applied to the facebook group – hoping to learn so much more from you and everyone. Thanks, Madeleine.

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