Recent diagnosis and pain

[graceep]

Hi there I've just recently been diagnosed with Endo, I'm 20 and I'm feeling very worried about what this all means and left in the dark. I just wondered if anyone could shed any light on any tips especially when it comes to managing pain, I've had chronic lower back and pelvic pain for some time now and just don't know how to ease this.

Finding this forum has helped a lot already, so thankyou in advance x

[Purplewitch18]

Hi there,

You can relieve most of, if not all of the pain but its not a quick fix and you do have to be committed to it. Diet is so important. You need to cut out cows milk and gluten, in a lot of our experiences this has been the best diet change ever! Gluten is an irritant to the bowel and causes inflammation to the gut which also aggrevates everything else in there. Always think anti infammitory to manage endo pain. Next you need suppliments. There are so many and not the same combination will work for everyone so its a case of trial and error. Magneseium about 400 mg will manage pain taken every day. I never even need paracetamol now! Also serrapaptase to break down the inflamed tissue and help your body get rid of it, evening primrose oil, vit b, d,c, and pro biotics are all very good also, and milk thistle to cleanse the liver it all helps your body balance itself. I also take maca to regulate my hormones and periods. There are many more that you may want to try if you look up recommended suppliments for endo, but serrapaptase is right up there at the top of the list. Also castor oil packs are brilliant, there are lots of youtube videos on how to do one of these.

These are all long term solutions and you will feel so much better after a couple of months of doing this. In the meantime take paracetamol and ibuprofen, i used to take 2 para and 1 ibu together and top it up with zomorph to get some relief. Heat on the painful areas and lots of rest will help in the short term.

I used to be on pain relief daily and now at worst i get a few mild cramps and rarely need to take anything other than my suppliments.

We are all here to help each other, and im sure there are some other ladies on here with more great advice. X

[Northernjsoul]

Hello there,

I'm sorry to hear of how you are feeling. I completely sympathise! I am 24 and got diagnosed only last year.

I completely agree with the below post, changing your diet is so effective! I have dramatically cut down my meat and diary intake and the pain and bloating is almost completely gone. I still have the cheeky food which I know I'm not meant to have, but this is a treat rather than a daily snack. Gluten is also a big thing, but I struggle not to eat that more than meat or diary. I don't like gluten free bread so I've nearly completely cut out bread and that makes a huge difference to me!

I also drink peppermint tea, and a lot of it! That seems to calm down my bloating and if I am sensing a big flare up.

In terms of pain, codeine and ibuprofen together helps me when I'm really bad.

I have also heard that yoga can help ease cramps, which is something I have yet to try.

I also carry a mini hot water bottle either in my car or in my drawer at work.

This may not be helpful to you but I have endo on my bowel, and it really helps to make sure that I'm not constipated. When I am constipated the pain gets much more severe.

I have a blog where I'm writing down all my experiences, it may help! jadesendojourney.wordpress.com

Feel better soon and stay strong - this is a great forum for getting tips.

[wanwood]

You will get your head around this although it’s a bit daunting at first! It’s good that you have a diagnosis. Lots of ladies with endo have completely normal lives, and have children, and you don’t have to let it define you.

When I wasn’t trying for a baby, finding the right contraceptive pill made a difference to me. Not having periods at all is best!

Taking paracetamol and ibroprofen together is a good idea when the pain is bad. Be careful about taking them constantly. Ibuprofen can give you a stomach ulcer so best to speak to a doctor about pain if you find you’re taking them every 4 hours for weeks at a time, and take an antacid with the ibuprofen.

Just a tiny word of caution about all the dietary advice you’re getting .... I know posters can only say what helps or works for them, but there is no scientific evidence for a lot of this diet advice and there are cons as well as pros to eating this way. If you cut out dairy you’re at risk of losing out on calcium, healthy bacteria in yogurt and certain cheeses etc. If you have heavy periods then cutting out meat might just make you feel more tired! Likewise I find constipation makes the pain and bloating worse, and whole wheat is a source of dietary fibre, but not the only one. Do read up on any supplements you might put in your body.

Moving around, exercising and generally being active when you can and the pain isn’t bad, is good for lower back pain in the long term.

If you’re not on hormonal contraception or treatment, menstrual cycle tracking can be helpful —for example, working out that the pain is worse around ovulation, and then taking painkillers preventatively at those times before the pain gets worse.

Some people find a TENS machine helpful?

xx

[Purplewitch18]

When cutting things out such as cows milk you get your calcium from other sources. Im actually allergic to cows milk and so get my calcium from almond milk which has added calcium, nuts and fish aswel as my suppliments. Ive had my levels checked several times and never had any lows, always bang on. All im saying is, as long as you eat well and get all you need from what you eat, cutting out things like dairy makes no difference to that.

There may not be scientific evedence but this does not mean diet doesnt cure the pain, just that there has been no study done. Thousands of women have changed their diet and are so much better for it.

It is true when they say “you are what you eat”.

I do however agree about long term painkiller use, it is no good for anyone and causes more serious problems. Its ok for the short term, but giving your body what it needs to heal itself when you can, is always the better option in my opinion. X

[Hello_324]

Hello, I was wondering how did you get diagnosed with endo if you dont mind me asking... I'm currently 18 and trying to get diagnosed for my chronic pain but because of my age the doctors tend to brush me off

[graceep in reply to Hello_324]

Hi there, I’d been getting something they called flooding so I was loosing huge amounts of blood all at once and passing out it took about a year and half of tests for me to be diagnosed

[Sarahvk95]

I got a tenns machine shortly after my diagnosis and it works wonders on my bad days! I current have an IUD fitted which is supposed to dampen the symptoms too and I dont bleed anywhere near as much now. It's just the pain that kills me off. Regular cocodamol is also a life saver on the bad days too, I try to avoid painkillers for the most part though as people have said about we would all be taking hundreds otherwise 😂 I also use the disposable heat pads under my clothes which help a lot especially when I'm at work. I'm 23 and just got diagnosed 6 months ago so it's a relief to finally have an answer but it meant living in pain for a long time with no idea why.