Not my week at all. Might go get another cat.

[pixie95]

Hello ladies 👋🏼

I have spent the last 2 nights in hospital again, for something different this time, which made me laugh, because in turn it revealed more about my endometriosis than actually seeing the endometriosis team!

We didn’t know if I had gallstones or something like that, very severe pain in the top of my stomach and re deferred pain into my shoulder and chest. So I got sent back into a&e, emergency gynie (because hey, if you have endometriosis, it must be something to do with that!) and then I ended up on the surgical ward.

After being poked and prodded, scans and x-rays, I have been told I have sever gastritis, kidneys stones, inflamed bowel, gasses and fluids here there and everywhere, I’ve already have one burst cyst, and I’ve got another huge cyst on my ovary, and the endometriosis is doing the usual spreading like wild fire.

2 days without food and I was begging them to let me go home to my kitty’s. They agreed reluctantly as long as I took omeprazole with me, rest and not do much, and as soon as I start to feel any sort of pain return, I call an ambulance. They said they will send a ct scan appointment out in the post as they want to check everything out as they is so much going on.

I’m now home, feeling as weak as a duckling, and my depression is at its worst. I’m 22, I don’t understand why my body seems to be in such a mess, and there saying between the endometriosis and stress, that’s where it’s all coming from! I can’t stop either one of those!

We’re at the point now that we’re having to get a wheelchair for me, as I can’t even go and do my food shop, has anyone else got to this point? Because you know when you something feel like your the only one in the world like it, but realistically you know your not? 😫

Things where meant to be getting better but they just seem to be getting worse by the minute. All I seem to do right now is cry.

I just need to get it off my chest in a place where endo people understand, thank you for listening to me moan my arse or again people, means a lot you lovely lot xxxxxxxx

[SarahMia227]

I'm so sorry you're going through all of that. We're similar in age - I'm 23, and although my endo isn't nearly as severe as yours, I get that feeling of being alone all the time. I think it's especially true for young women, because while there are lots of women with endo around our age, I think a lot of them haven't been diagnosed yet. I hope you feel better soon xx

[pixie95 in reply to SarahMia227]

There are more young women being diagnosed with it, and it’s so difficult to cope with, because it changes your life completely, which is why I guess we feel so alone! So it’s so nice sometimes to just talk to other people here, people who understand. I just hope the undiagnosed women get the help they need when they need it. Thank you Hun xxxxxx

[Starry]

Oh hun that's so much to go through at your age. I made it to 43 before it completely took hold so had a slow burner tumor, though looking back I just suffered symptoms in silence for decades gradually deteriorating.

I'm not quite wheelchair bound but I've found it life changing these last 18 months . Even after excision, extensive vaginal repair, deep bowel shave and adhesions removed I have been left with esophagitis, severe cfs and fibro symptoms that show no signs of going anywhere.

It's bizarre how it affects the gut too isn't it. After months of agony with reflux esophagitis I now have all sorts of food intolerances and can't eat processed food, onions, garlic, nuts, fruit, refined sugar, dairy, gluten, acid food, the list is endless.

I hope you are feeling a bit better now you are at home again xxx

[pixie95 in reply to Starry]

The thing is you probably had it when you were 20 but you just didn’t know what it was because it wasn’t a known thing back then! It’s such a strange disease! I’m already dairy intolerant, and I have been for 5 years now, and it does make make me wonder if it has something to do with the endo! I’m thinking of cutting out other foods to see if it helps ease everything else going on, I might just give it a month or so test and see how I go. Thank you so much for your reply xxxxxxxx

[Starry in reply to pixie95]

Totally. My consultant reckons I had it from birth. I used to go faint and slide down the walls on periods at school and was told to 'just deal with it, everyone else does' by the school nurse.

I think it affects us all differently but for what it's worth I found culturell probiotics quite good, supposedly it's an immune boosting strain.

I've tried endo diet, organic, low Fodmap, and most recently the Dr Aviv low acid diet for the esophagitis. I probably sound like a crazy earth mother hippy now but I can barely cook and have just been forced down this route. Gluten free I think is helping and there's a bit of emerging science on that but it's really hard to say as I've cut back on so much. Sugar probably has more to answer for than I'd like to admit either. A recent reintroduction that my body definitely doesn't seem to like any more.

Any time, and stay in touch xx

[pixie95 in reply to Starry]

Thank you so much for your insight! I think trying the gluten free way first will be my first step. I will have a research into those probiotics! Advice like this really helps, thank you so much xxxx

[Starry in reply to pixie95]

If you're suffering gastritis, and on omeprazole, I found oats, banana and melon all lifesavers when I couldn't manage any other foods. In the early days I ate a lot of parsnip turmeric and carrot and ginger soups, both anti inflammatory apparently. The low acid Aviv diet principles was not too hard to adapt for my intolerances and did finally help me get my reflux under control (which for me fodmap and PPIs didn't) , so possibly also worth checking out (written by a proper consultant, not to be confused with acid-alkalizing diet which is not supported by science) . I also read a couple books by a lady surgeon called Kaufman which gave pretty much the same advice.

Take care xx