Help?? Dealing with Endo

[fifiboo]

Hi guys!

So I’m currently in the process of being diagnosed with endo and it is literally ruining my life. I have never been so down and have recently been feeling really depressed whenever I have a bloating/ bleeding phase? Is this normal? It’s almost as if my hormones are out to get me.

I have never really had periods due to being on the mini pill but have always been extremely bloated when I was due on. For the past 6 months I have been bleeding only dark brown and black blood when due on and it is never red? Can any one else relate to this too? As it’s just really confusing me to the point where I’m getting frustrated with myself.

I have my first consultation with my gynaecologist in December and I am SO scared that they’re going to tell me there is nothing wrong with me like every other doctor I’ve seen has done. I’ve had to pay privately for this as the doctors seem like they don’t want to know.

Does anyone have any advice on how to explain what is going on with me without sounding like I’m on crack?

Also if anyone has any tips and tricks how to deal with the pain of endo belly it would be super appreciated! I currently look 6 months pregnant and am in horrendous pain with my bloating😭 is there any specific dietary foods that may make it worse?

Thank you all in advance ❤️❤️

[Purplewitch18]

Hi hunny,

Well dietwise you should cut out gluten, dairy and sugar as they all feed endo and make it a lot worse pain and bloating wise! Drink lots of fluids, water, ginger tea, peppermint tea, i also drink brown rice protein shakes as it helps flush excess water out of your system. Avoid processed food as its full of sugar and chemicals.

The bleeding sounds typical of endo too. Mine used to be brown one month then bright red and heavy the next. There are many suppliments out there to help regulate your periods and blood flow. Personally i take maca and flaxseed oil, which are the main two for my cycle. My periods are a much better flow now, id say pretty much normal most of the time.

Also anti inflammitory foods and suppliments all help a lot. Turmeric is good, also NAC, there really are a hell of a lot so do some reading up and see if you want to add any of these in to your daily routine. Magnesium also amazing for keeping cramps at bay, but you need at least 400mg a day to have an effect. I also take milk thistle, and cbd oil for period pain when i feel a cramp coming on, which i noticed much more when i ran out of magnesium last month.

Lastly i have thrown away all the chemical crap in my house, cleaning supplies, fabric softener, cosmetics etc. I only use natural or safe products now. The toxins in these products have a massive effect on our hormones, and endo is a hormone dominant diesase. They can also cause of infertillity.

I recently posted on here because i was feeling quite poorly again with my endo, realised id run out if flaxseed so i brought some more and soon felt much better!

All of this wont promise to eliminate all the symptoms but it does make it a hell of a lot better. You will still have a bad day now and again but most days you should be able to get on with things as normal. You have to be dedicated though if you want to self improve your symptoms.

Of course you could try birth control methods that the drs will suggest, or pain management and see if that works for you.

For your appointment write down every symptom you get, also if any other women in your family have had it they take it more seriously so find out. And if you get emotional talking about it all then let the emotion out, all lets them know how its affecting your daily life and that youve had enough. I bawled my eyes out, and then got listened to more and booked in for a lap there and then. That was after a lifelong battle of getting fobbed off and misdiagnosed, but i got there in the end!

Good luck

[Sheep2016]

ooh dear, feel very sorry for you. I used to blood clots and towards the last 6+ months (before my hysterectomy), I was literally being bedridden for more than half a month, and other weeks, too drowsy to go out of house too (from too much pain killers).

Hysterectomy should be the last resort, and I was eager to do it after months of no-life. Had to even cancel a dinner appointment because symptoms were so bad.

Do have 2nd opinion and if you are very sure there is no mistake about it, I suppose there's no other choice (no sure how old you are). It is no life, when you can get out of the house.

Big hug and try to rest well.

[Lepetitellie]

It can be a difficult condition to diagnose as a lot of the symtoms we get can also be due to other conditions. Some Doctors can be a bit tunnel visioned but you must keep at the forefront of your mind that this condition is negatively impacting in your health and mental well being. Again, it doesn't mean you definately have endo but the doctor should be proactive in finding out for sure. You mentioned this is a private consult? Therefore go all out. Tell them, not ask, that you want endometriosis ruled out. Any good gny worth their salt should suggest a lapro to be sure especially if your symptoms indicate that endo could be the reason. Be assertive. This is your life, your body and your health. God I sound like a total loon. Basically you go girl! Own that appointment.

[StefaniaJW]

1) As far as the appointment is concerned, remember that choosing to go privately over the NHS doesn't necessarily makes a difference. What truly makes a difference is whether the consultant is an extremely skilled and experienced endometriosis excision surgeon. If he's not, then I suggest choosing a different consultant. I know many experienced endometriosis excision surgeons working both within the NHS and privately so the fact that you can find the right care only privately is wrong assumption

2) As far as dieting and lifestyle changes go, you can revolutionize your life just by focusing on that. You need to eat a lot of fish, veggies, some fruit, nuts, seeds and wholegrains, pasture-raised eggs and grass-fed meat once a week tops. You can only drink plain water, herbal teas, green tea, water-based kefir or coconut milk.

I suggest you avoid refined carbs (pizza, pasta, bread, breadsticks, biscuits), sweets and desserts, all dairy, anything processed, industrial or fried, cured meats and red meat completely. Alcohol and smoke need to be banished completely for the rest of your life. Avoiding coffee is also helpful to some.

Avoiding nightshades (aubergine/eggplant, tomatoes, bell peppers) and potatoes is better for some people, but it depends on you.

My typical breakfast: matcha green tea almond yoghurt with pineapple and kiwi, chia seeds, coconut, fortified cornflakes OR freshly-caught salmon or pasture-raised eggs + matcha green tea + avocado

Snacks: fruit (anything in-season really) + nuts (walnuts, almonds, peanuts) + freshly squeezed grapefruit juice

Lunch: quinoa with fish (salmon, sardines, mackerel) + mixed salad (lettuce, cucumbers, carrots)

Dinner: Pasture-raised-egg frittata (if I didn't have eggs in the morning) + peas and broccoli

TRY TO HAVE 3-5 SERVINGS OR VEGGIES + 2-3 OF FRUIT PER DAY

TRY TO DRINK 8-12 GLASSES OF LIQUIDS (PLAIN WATER, HERBAL TEA OR TEA) PER DAY

As far as supplements go, try protelytic enzymes for your dark-bloodded periods (so bromelain, nattokinase, serrapeptase and such).

Digestive enzymes are great to aid digestion if your gut is upset.

Helpful for endometriosis are magnesium, vitamin B6, folate, zinc, selenium and for some, vitamin B12, vitamin D and iron. Antioxidants (vitamin C, vitamin E, pycnogenol, glutathione, astaxanthin, etc..) are great for the pain.

Epsom salt baths, castor oil packs, peppermint tea, CBD oil are great for the pain.

As far as lifestyle goes, I suggest you look into sleeping 8 to 11 hours per day depending on what you need. You need to go to sleep and wake up roughly at the same time, never go to sleep after 10.30 pm and never wake up before 7 am.

It's also preferable to avoid screens (TV, computer, phone) an hour before going to sleep (so if you go at 10 pm, you should turn everything off at 9 pm).

You also need to spend a lot of time outdoors , preferably walking, being in nature, doing yoga or swimming. I go for a 20-minute walk everyday in a park or in the woods and it's great.

As far as blood work, get your thyroid and especially vitamin D and iron levels tested. Your GP can prescribe everything

[CelestialFluff]

Hi. Sounds like you are having a really tough time. I'm 18 months in and things have got better slowly as I have worked out what works for my body.

I read a book about endometriosis which suggested changing eating habits. At first I resisted, tried painkillers, aromatherapy, acupuncture etc.

What has worked for me is a combination of painkillers (took a while to get the mix right), a plant based diet (aiming to reduce inflammation in there), yoga, not getting constipated (sorry TMI but it made a massive difference as things are all very close in there!) and I used an app called curable that helped me refocus when I was in pain.

I think what works for you will be different - may just take time to find out.

Endometriosis UK has a good consultation sheet with questions to ask yourself before the consultation and questions to ask the doctor. I found it really useful. You can access online. It helped me feel confident I had covered all areas and given the doctor the information they required.

Good luck. It will get better.... xx