Update on my Endometriosis!

[Heloo85]

so! I’m now a fully fledged Christie’s patient!.. I’m under the specialist centre, not the standard centre! So ok, my Endo journey so far! I’m a complex patient with wide spread disease of very many major organs! After one major surgery 6 years ago, I was subsequently lied to by my tertiary care hospital! Left on 3 monthly consultations for 5 years while my worsening symptoms went ignored, to almost die at 35! To then get fobbed off again! To then be promised surgery, to then be left again!

So I’m now at Christie’s under the guise of a complex patient! It would appear that I have had this level of disease all my life! Hence my chronic pain and now anorexia! I don’t mean painful periods, never had one in my life, I mean chronic unrelenting pain, passing blood clots from kidney, bowel obstructions ect…

Anyway, I have had 6 tubes of blood taken from me! I look like a cancer patient! I went to die at 35 because my estrogen levels topped out! That was why I was on deaths door for nigh on a year and still not got better now! They said I should’ve never received estrogen!..

I’ve had very many things checked! Not just endocrine disorders, but non endocrine disorders for them to figure out my best management strategy! So it would appear my health problems are far worse than even I thought!

No idea if/when I’ll get my major/major surgery!

[Prettythings1]

Hope you are okay!Sounds like a very stressful experience, hopfully this hospital can give you some answers soon. Fingers crossed 🤞🤞🤞Have they given you any results at all? X

[Heloo85 in reply to Prettythings1]

Will take 6 weeks for all results to come through as I’ve had specialist blood tests! They think they have an idea what’s wrong with me, but not really said anything more! There’s no reason for me to have such high estrogen levels to have such severe disease, other than a medical one hiding! I’m not overweight, nor have I ever have been! *fat cells produce estrogen, and well I don’t have much*, ovaries and adrenals!.. I shouldn’t, on paper have such severe disease! I’m currently wasting! As in my muscle mass is depleting! So my organ function is being effected! I effectively have end stage disease!.. and it ain’t good!.. xx

[Prettythings1 in reply to Heloo85]

Hopefully it will be quicker than six weeks Theres so much to learn about it all isn't there

Giving you anything to help in the meantime xx

[Heloo85 in reply to Prettythings1]

No, I’ve been removed off all medication until they find out what’s going on! I never was really on any to be fair! I’ve had a few courses of Zoladex and the combined pill over the last 5 years, while my tertiary care hospital lied to me in order to block any further investigation and/or treatment! I’m currently in age 9/10 clothing! If I get any smaller I’ll be back in baby grows!

Everyone’s Endo will be due to different reasons! Either endocrine, lifestyle and/or environment and/or a mix of all 3! Or even other diseases! But each persons reason for their Endo will be different! And other factors will make it better or worse! Xx

[Prettythings1 in reply to Heloo85]

I had no idea you could loose weight with endo zim very much the opposite! X

[Heloo85 in reply to Prettythings1]

You will be, cuz estrogen makes you store fat, in order to increase your estrogen levels, which then feeds your Endo! Do you take fish oil? You should!

Anyway, it shouldn’t make you lose weight! While losing weight your estrogen levels manage to top out! Little to no weight should = low estrogen levels = very little to no endometriosis! Except I’m low weight = exceptionally severe endometriosis! That’s why I’m complex! Xx

[Prettythings1 in reply to Heloo85]

It is so complicated isn’t it I really hope they can help you soon xx

[E-ZEE]

No words,lot of prayers for you,stay strong xxx

[EndoCarer]

What a journey so far! Good luck for the way forward from here 💚

[Heloo85 in reply to EndoCarer]

I think I may need all the luck in the world! The last 5 years have been hard! I’m off all hormone treatments, so my symptoms are now correlating with my cycle! First estrogen rise, omg I’m wiped out! Feel like I’m dying! Second one, usually polyuria as my body is trying very hard to regulate my hormones! I’d say I have made a bit of improvement! Gained back some muscle mass, exercising and on high dose of fish oil (natural steroid), eating only foods that increase steroids and taking a multi-vitamin/mineral tablet!

I’ve 2 cysts! One at side of my cervical spine in my neck and one in my spine! I think they’ve grown! The one on my neck actually has! Prob in response to estrogen! Xx