I’m after some advise really, I’m very down at the moment so bare with me.
I’ve suffered with Endometriosis for Since 2013 and it had recently been confirmed severe with adhesions.
My recent op discovered growths all over my bowel and intestines which is why I’ve been having so much pain. Pain doesn’t seem like the right word to describe it, it’s my worst nightmare, I pass out, vomit, scream in agony like someone possessed!
Even after my operation I am still in agony and told my organs which were stuck together maybe trying to re-attache themselves.
I also have multiple fibroids in various sizes and have been told the cause of my pain is from the endometriosis. However I have one large fibroid sitting on my blader and another large one sitting on my back passage. We all know going to the loo with endo is like gearing yourself up for an abundance of pain but with these two added on top it’s why I’ve passed out on occasion.
I’m sick of hospitals, I’ve seen a few in the last year on many occasion and been admitted due to high inflammation, pain and infections.
I’m due to have another operation for the fibroids but want to see what people are using as a healthy treatment towards a better life with this horrid condition.
I’ve done lots of reading but a lot contradicts itself and the Gp tends to do the same too or try and prescribe you with more pills for IBS.
What diet do you follow, is there other vitamins and supplements I should be taking with my Vitamin D?
Also what types of exercise do you find most beneficial.
Sorry if the is long.
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SimplyDeeDee
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Hey, so sorry to hear that you're struggling. But it sounds like you're trying to take control of your health which is amazing and will certainly help.
I'm not an endo expert, I was just diagnosed with severe endo 2 weeks ago but after going through the medical process 2 years ago, surgery etc to rule out everything including endo, I was left to deal with it all on my own, with the extremely unhelpful diagnoses of IBS and chronic fatigue.
I looked into alternative options and have found lots of things that have really helped. General things like mindfulness meditation and yoga have been life savers for me. You might think you're too sore to do yoga but there are some really gentle things you can do that can relieve the pain. I use YouTube videos and yoga with Adriene is brilliant, she's got a video for any mood and level of energy.
In terms of diet, I've just started on what I've read to be an 'endo friendly' diet which is vegan (I was already vegan), gluten, sugar, soy and processed food free. It can be a lot to make changes like that to your diet, but just eliminating one thing for a couple of weeks or months before eliminating the next thing can make it a bit easier. The reason for eliminating those things is that they all cause inflammation in the body and endo is all about the inflammation so we're trying to reduce it as much as possible. There's also some studies suggesting soy can cause hormonal imbalances. We also want our gut microbiomes to be amazing and sugar and chemicals from processed foods can really affect them. We want to be eating loads of fresh fruit and vegetables, nuts, beans and pulses. Plus loads of ginger and turmeric as they're anti inflammatory (lots of curry!). I start my day with a few chunks of ginger in hot water. And I've just started having a shot of ginger and apple juiced (you'd need a juicer to do that).
In terms of alternative treatments, I just wrote about this on another post so I'll just copy it here but there are LOADS of non medical options (I'm also looking into cannabis oil which is meant to be amazing). Medicine is just one perspective.
I'm trying some alternative treatments which I get some relief from. I see a chiropractor which gives me so much relief from my hip and back pain. I've been going for about 6 months and the difference is amazing. Before I saw her I couldn't sleep properly due to the pain and took codeine daily. Now I take codeine a few times a month and usually manage a full night's sleep. When I first went I saw her twice a week and now it's once a fortnight. I initially went to her because I thought I had issues with my joints but now that's been ruled out and it seems to be a symptom of endo, she thinks that the chiropractic adjustments help to keep everything moving. Like it stops the endo glue from sticking everything together. I've no idea if that's the case but I feel so much better from seeing her. When I told her about the endo, she said she's seen other people with endo, so it's not an unheard of treatment option.
I have also just started seeing someone who's trained in quite a few different alternative treatments (she's a physio by trade) and she's giving me acupuncture and visceral-pelvic mobilisation. I've only had one session so can't say yet what the impact of that is on me personally but there is a bit of research to support both treatments with endo. Acupuncture really is amazing. I have an awful fear of needles and manage to put up with it.
I hope all this isn't overwhelming. I'd suggest just starting on one thing and see how you go and then add in something else. I've built up all this stuff over 2 years and it's just been through trial and error and following my gut instincts. I really think that in one level our bodies know how to heal and we know what we need but it can get difficult to focus on in all of that when we get pulled into the medical world,which I'm not saying is a bad thing, I'm just saying there are also other options which are good to include too.
I really hope this isn't too much and there's something in all of this you find helpful.
Thank you so much, this is not overwhelming at all but actually confirms I’m on the right track with some of the things I am doing.
I need to take control of what’s going on! At the moment I’m drifting out of mindfulness due to the pain but I’ll keep trying.
Turmeric and ginger are taken regularly and sugar had be reduce considerably for about a year now. Also dairy free even though i’ve never had a problem with it, but a large amount of my family do.
I wanted to hear if anyone had tried CBD oil, I was told by the herbalist to get any relief from pain I needed to look at 10% but £60 for such a small bottle I knew nothing about I didn’t go ahead. Do you find it helps?
I’ll look into the other things as well so thank you. Soya will be hard, I love cooking and making a lot of oriental food.
I've not bought the oil yet. I was a bit overwhelmed when I looked online as I didn't know where to start and was worried about what I was buying but I've just found someone who knows a bit about it and is going to pass on info. I think it is likely going to be expensive though.
I was directed to the endo resolved web site where the detail the diet they say tamirin, the gluten free soy sauce is OK. Being vegan, I am struggling at the thought of so soya too as I ate tofu and other soy based products but I'm going to give it a go but not be completely militant about it.
Hello...I just wanted to tell you that I can totally understand what you are going through. I live with the same nightmare the last 18 years. I am 39 now. I could write a whole book about the surgeries, the depression, the unbelievable pains...Also about how people cannot understand you, how they believe you ''exaggerate''....and so on...So, I will tell you nothing about these. I will only share with you what helped me, with the hope that something of all or all, may help you too. The last four years I took my health on my hands. I cut off gluten, diary, sugar and medicine, painkillers etc. I began to eat a lot of fruits and vegetables, I reduced meat a lot. I stopped eating processed foods like prepared meat products and stuff like that. In short, I stopped eating unhealthy foods. Special thanks to a fantastic herb called cat's claw, I will never stop it Of course I gave up smoking. I started exercise on a permanent basis. I cut off all the toxic situations or persons. It is hard at first and it takes a little while to see results( in the first three or four months I saw the first results and my situation is characterized as ''heavy'') BUT I guarantee you that I got better! In fact I became healthier than ever! I still have pains yes, but they surely are significantly improved, they have no relation compared to what they used to be! Really it worked! And I am soooo happy...That was my ''healing'' story. The work never stops, I keep trying, I keep searching for everything new I can use. I hope that everything will turn out good for you. A last comment: Use all the support you can get from your environment. But above all, believe in yourself, believe in your inner strength, stay calm...this is the key for every endeavor in life. Make peace with your disease, thank and congratulate yourself for withstanding all this tough situation(yes, it's extremely difficult) , love yourself deeply...
Ahh thank you, last bit actually brought tears. It’s tough and I know I’m not the only one suffering plus I have a good support network around me. However when feel endo is living/having fun and your’re like the person locked in a house peering through the window, it weighs on you.
Our did-ease is very ''painful'' in many aspects of our lives, true...but it is also our profound strength. Just think about it for a moment...how resilient you are! We are all connected in a different way, knowing that there are other women with the same situation. Some additional information : 1) if you use painkillers you could try Tramal(this is the name of the drug in my country, Greece) ,it is very strong and it kills the pain but you must have a doctor's prescription because it is categorized by its chemical substance as opioid, so it may cause some side effects. 2) I am trying to find CBD oil and I tend to use it within a month. I could inform you about the results if you like. If you do, let me know...Thank you for being a ''travel companion'' with me and with every woman who shares the same ''endo-path''... X
Yes please, I'd be interested to hear how you get on with CBD oil. I'm researching it at the moment and will probable bite the bullet and purchase it tomorrow; we could compare notes.
I have Tramadol and I absolutely hate taking it, it makes my sickness worse to the point I won't even drink fluids. I use them when I've turned into the exorcist, pinned to the bed by my own body and screaming in pain. Even then it doesn't take the pain away, it only masks it a little; enough for me to stay in one position.
Hopefully we are traveling towards something that will work for us
You placed it aptly, tramadol only ''masks the pain a little''. Personally I used it several times but the side effects were many, I was like a ''vegetable'' and only a small part of the pain faded away ,the rest of the pain stayed with me. A friend of mine use it and her exact words were these :"it kills the pain" . I suppose that the effect is different from system to system. I am waiting for the CBD oil as I've already told you, but so do you. I really think that this one will work, I really believe it. I haven't found a painkiller all these years, you know ,you take it and the pain vanishes, no. But I surely want to believe that this time it won't be a disappointment. So, yes, of course we could compare notes as you suggested, in fact that would be very encouraging for me! If you use the oil first please share with me your experience, I will do the same thing when I use it. Thank you for exchange your endo-reality with me, thank you for being here. Have a great week!
I've been exactly where you are currently, so I really feel for you. Like you I also have multiple fibroids - the biggest of which is pedunculated (on a stalk) on the outside of my uterus and presses against my bladder (it was 4.5cm at its worst) My gynae told me that fibroids grow around 0.5cm per year - but I have proved him wrong through following the endo diet, which has shrunk all my fibroids to at least half their original size. The largest fibroid was once pressing on my bladder so hard that i constantly needed the loo and when I went running, I ending up wetting myself a bit (!). This is no longer the case thanks to cutting out inflammatory foods like red meat, wheat, dairy and coffee. And yes, I know the fibroids add fuel to the fire of endo pain - as if the endo pain isn't bad enough...?
You might want to check out castor oil packs on Google (using cold pressed organic castor oil). I get a lot of relief from them - and when used regularly they can really regress symptoms and help shrink fibroids. I also take magnesium citrate (400mg) and fish oil (high strength capsule) which I think help, and a high strength B vit drink for energy. I've also recently started taking red raspberry leaf tea which is meant to help strengthen the integrity of the uterus and I find my periods are not as heavy when I've been drinking it regularly.
I also find exercise helps - anything that improves circulation in your pelvis - eg running, swimming, pilates, yoga. They all seem to help reduce pain. The more you can do - the better - and any amount is better than none.
Thank you, my health is not going too well at the moment. My digestive system is a mess and food is not getting fully digested or passing though easily.
I’m losing weight and I have no appetite because when I eat it press on my abdomen.
In the last week i’ve probably had about 4 meals.
Un-buttered kipper avocado and cassava
Ackee and Salt fish and soup
Berries, melon, quarter seabream and salad
Smoothies have been my main source or nutrition. I know this is not a great diet but I’m not having much luck.
My appointment with the gastroenterologist has finally been booked. I know endo messes with your stomach but I’ve never had what I’m going through now and I just want to rule out anything else.
I really think you are doing the right thing by looking at your diet...I truly believe that you are what you eat and I too am in the process of looking at everything I eat and how it can affect my endometriosis. There is one thing that I haven’t seen mentioned here yet and that is Kombucha. It’s hard to describe what it is but basically it is a drink ( an ancient tea) that gets rid of all your bad bacteria and replaces it with good. I have been drinking it for around three months now and it is the ONLY thing that has had a positive effect on my periods. There is lots of info about it on Pinterest and on line but I would start with the kombucha and look into making your own too-it’s really easy! I hope that helps xx
There was an article released recently that suggested bacteria in the gut (not sure if that's the same as Leaky Gut syndrome) can make endometriosis worse. My kinesiologist often prescribes probiotics (I get them in boots and take them last thing before bed). Also castor oil packs have helped me a lot - linked with pilates for Endo. There's a lady on youtube called Jessica Valant.
Hey, I just started taking serrapeptase.It's an enzyme that clears inflammation,scarring and adhesions.I've been trying to conceive unsuccessfully for the last 7months.I went for a hsg test and my fimbriae has adhesions so there was loculated spillage.I was advised to go straight for IVF since getting pregnant could put the endometriosis in remission.I researched online and came across successful cases of women opening up their tubes with serrapeptase.Others have managed to shrink their fibroids after several weeks/months on it.You might want to Google that.My doctor suspects i have umbilical endometriosis because of the pain in my navel that coincides with my menstrual period.I have always had painful periods so i suspected it was end o even before the doctors visit.I didn't want laparoscopy because the pain is not severe.Figured once I get pregnant,it will go into remission
I had pain in my navel before my op in March which was due to endo on my intestines. I’d personally don’t want to take anymore man made medication and would rather heal myself with natural remedies.
Did you have a nodule like growth in your navel where the pain was?I don't bleed from there yet so can't really confirm for sure whether it's umbilical endo.Serrapeptase is an enzyme from silk worms and most doctors won't recommend it,most are not aware it even exists or choose not to.It's natural and mostly recommended for natural fertility and by nutritionists.I was almost giving up and resorting to IVF until I came across it.
The only things they could see on my MRI were multiple fibroids, fluid but and my organs being pushed is different directions. Due to my history with Endo it was likely it was there. When they did my laparoscopy in March it was everywhere and organs were stuck together, more server than the last time.
I still have some to be removed when the fibroids are removed next month.
Good to know where serrapaptase derived from, I’m not trying to get pregnant but good to know for the future; I’ll also look into it to see the other benefits.
Thank you it’s an open myomectomy next; at least with the Lap I know what to expect and really don’t have fear with those. This one I’m a little on edge but the hope of haveing less pain out weighs the fear.
Hi i also take serrapaptase have been taking it since april my endomeyriosis pain is so much better my cycle has improved the pain i got during ovulation is so much better period pain so much better i started taking it due to suspected blocked tubes i had been trying to concieve for nearly a yr when i started taking it 2 months after taking it i got pregnant i did miscarry but i believe the serrrapatase helped i have also cut out dairy and soya as those encourage estrogen which is what flares up the endo i did originally do gluten free vegan but i found it too difficult and expensive
Hi Lyn84, that's great to hear it worked after only 2months.I had to change my diet because wheat and dairy would irritate my stomach which makes sense now.In the last one month since I changed my diet,I rarely get the navel pain.The nutritionist am talking to who sold me serrapeptase,I think the only guy who sells it in my country told me for it to work I need to watch my diet and avoid inflammatory foods.I've eliminated sugar too.Did you take anything else along with the serrapeptase?There is a lady in the baby centre forum who was taking serrapeptase,it opened up her tubes but it took several months to conceive she included CO-Q10 to help with egg quality and successfully got pregnant after 9months.I guess it depends how old you are as well.She was 37 at the time,so egg quality may have been an issue
I wasnt taking anything else with the serrapaptase except fertility vitamins i am now taking co enzyme q10 and also omega 3 but am struggling with the omega 3 as the tablets are very big to swallow i also lost a stone in weight to help bring down excess estrogen in my body
That's great You lost a stone.Estrogen dominance is an issue with us.It's been 3months since I started taking B Vitamins,folic and Omega and I think it's helped a lot with hormone balancing.I've run out of Omega,i think I'll get some and CO-Q10 as well.Before I would get sore breasts staring the day after ovulation till the day of AF.Now it's only like 2days before AF.What was the strength of serrapeptase you were using and how many times in a day did you take.I have the 250'000IU.One more thing which fertility vitamins were you taking with serrapeptase?
I have a major bowel op for endo last August. Unfortunately I have had worse pain since so they’re taking another look in about six months.
There is no one endo diet as it effects everyone differently, I would suggest keeping a good and symptom diary. Although that has helped me realise that there seems to be no trigger for me!
I am vegan (personal choice) and gluten free (didn’t notice a difference and it’s purely so drs will stop suggesting it)
I struggle to eat solid food consistently without obstructions so I often have smoothies and soups. I struggle with fibre so I make sure my veg is well cooked.
Whilst I was competing in sport I noticed my comp diet had me feeling better, I think this is because starchy carbs are too heavy so I try to make some meals that are protein and fats (not every meal, you still need carbs). So now I keep smooth peanut butter in my desk and mid morning and mid afternoon I have a spoonful while I make a cuppa.
It may also be worth looking into anti inflammatory foods and meals.
I also track using my fitness pal which has made me realise I am not getting enough, so I take a multi vitamin (cheap supermarket basic one) and so far my bloods have been normal so I swear they help!
Gosh our food issues are so similar, I have no triggers and I’m living off soup and smoothies as well. My food is not digesting properly and the pain when I feel it moving through different stages of my stomach then getting stuck takes your breath away.
Before my op in March I could eat a little not much but the digestive pains didn’t affect me this much; I just had the lower abdominal pain.
I have a lot of anti inflammatory ingredients in my smoothies and I also take my vitamins.
Let’s hope we improve very soon, it’s so painful, stressful, and very anti social.
You are the first person I’ve come across with this, I’ve lost 2 and a half stone since the end of March purely because I can’t eat. It’s comforting to know I’m not going mad but I would never wish this on anyone, not even my worst enemy.
My CT scan didn’t show anything I didn’t already know.
Please see your gp about seeing a dietician or getting something. I had a lot of calorie drinks.
I had endo on the left side of my bowel and right side (higher up) my pain was on the left and I had it removed last year. I have Gained some weight and appetite. Now I get hungry but then obstructed lol
It’s funny I saw my GP and they didn’t offer anything apart from Movie Prep to help me go and some form of energy drink.
I’ve declined both and will stick with the smoothies, soups, vitamins and senna pods. I’m just tired of putting synthetic drugs in my body now, I did everything they asked and no change so sticking with this for the time being.
1. If you are still in agony after the operation, I'm afraid those who performed the surgery were not endo specialists with plenty of experience. Yes, you will go back to being in pain after surgery (unless you take Visanne since day 1) but only after a year or so, when adhesions reform again. If you're in pain after surgery it's because either they didn't perform excision surgery on every adhesion and cyst (which means they don't have enough expertise and experience) or because you've developed adhesions consequently to the cutting during surgery, which endo specialists know women can get and therefore use extra special care when cutting to go in.
2. If you have a vitamin D deficiency, the treatment shall be simple. I took 25.000 UI once a month for four months. Don't take pills because they cannot contain that many UI. Your GP or gynecologist should prescribe the treatment, taking supplements won't be enough.
3. Before taking anything, you need to restore gut health. I took digestive enzymes and probiotics for three months, along with a strict diet, before seeing improvements. You need to treat the leaky gut first (endofound.org/is-there-a-li... before taking supplements otherwise your gut won't be able to absorbe all those precious nutrients.
4. The top vitamins and minerals necessary to all women with endo are: VITAMIN B6, FOLIC ACID, MAGNESIUM, SELENIUM, ZINC and sometimes vitamin E (which should not be taken everyday because it's a fat-soluble vitamin). Vitamin B2, vitamin B12 might also be needed. Omega 3 and turmeric are also helpful in reducing inflammation.
Choose grapefruit seed extract over vitamin C to strengthen the immune system when the flu season starts.
5. As far as foods are concerned:
NO-NOs: coffee, alcohol, anything with preservatives or any other term that sounds suspicious. Industrial meat and cow's dairy. Sugar in general and anything industrial.
REDUCE: choose wholegrains over refined ones and try to reduce wheat. Go for rice, quinoa, corn, potatoes instead of wheat. A tiny piece of extra-dark chocolate (at least 70% cocoa) a day is ok.
YES: fresh, organic in-season veggies and fruit, omega-3-rich fish (caught mackerel, sardines and salmon for example), legumes (lentils/chickpeas/peas and beans are ok too),
nuts and seeds (peanuts, walnuts and chia seeds), matcha green tea. Free-range eggs are ok (5 a week is good), goat's/donkey's/sheep's dairy is good if those are pastured and grass-fed animals, only pastured and grass-fed meat once or twice a week. Bone broth is excellent. Fermented food are excellent too (e.g. kefir or goat's yoghurt).
This is pretty much what I do (almost completely pain-free for two years, no surgery nor hormones). I do however encourage you to try with the hormones first, especially with Visanne, which can help immensely
Thanks for your post, my surgery involved excision surgery with a specialist however it’s not complete yet I have another surgery to go next month for the rest and removal of multiple fibroids.
I was on probiotics with a meat, dairy, sugar, soya, and gluten free diet and I am still on this diet without the probiotics. I eat fish and I don’t drink alcohol or caffeine and my vitamin are pretty much the same as you’ve mentioned. I’ve not heard of Visanne and will look into it but if it’s a hormone replacement like prostap I won’t be taking it due to the symptoms I get.
My diet has helped me immensely (I'm basically always pain-free but still have fatigue from time to time -I also suffer from Hashimoto's though). Yes, Visanne is a progesterone-only pill designed to treat endo so if you don't want to take it because you cannot stand birth control I understand. I always advise against a diet that's completely meat-free or dairy-free. You need meat and dairy, but the animals need to be grass-fed and pastured. Also, keep taking zinc and glutamine for the leaky gut and look into prebiotics and not just probiotics. Let me know how you're doing!
Yes, whenever I feel the estrogens kicking in! It's amazing if you get severe PMS, breast tenderness, water retention and estrogen dominance in general
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