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Endometriosis UK
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Feel like i always have a virus

Ive had endo since i was 11, and when i was a teenager i suffered with fatigue and horrendous period pains. My mom used to think i must be aneamic. Went on the pill at 16 and still had awful pains but was ok apart from that. Came off it at age 34 got pregnant and not been on bc since. So for the last few years i feel ill and run down 90% of the time, and been back and for to drs etc..levels checked and all fine.

Finally got diagnosed with endo in november after not being able to get pregnant and had it removed.

My question is,aside from the pain which i have under control mostly with diet changes, its the constant feeling of nausea, fatigue and just feeling crap all of the time. I can count on one hand the amount of good days i have as i notice them because they are few and far between.

My consultant referred me for a follow up with the fertillity clinic after i had my lap which im still waiting for. Does anyone else feel like crap so often it affects your whole life? And how do u deal with it? Seriously considering going back on birth control as ive really had enough of this now😓

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I wasn't diagnosed until I was 47. But yes, the constant fatigue, flu like symptoms digestive problems etc. are all part of it. I had years of doctors telling me these problems couldn't possibly be related to anything gynae related.

It seems to me that your immune system detects there's something there that shouldn't be, but for some reason can't get rid of it. So you feel like you have flu because your body is reacting as if you have an infection. I was getting blood tests from the GP that failed to recognise that I had vitamin B deficiency, something I only know because taking vitamin B helped lots. Beware that there are about 6 different B vitamins and some supplements only have some of them. Try taking a multivitamin-multimineral supplement. However, good your diet is, you may find you're lacking in something or your body isn't absorbing it.

Also look at this thread here. healthunlocked.com/endometr...

I never had the chance to have kids as I didn't have the energy for a social life. It is my greatest regret. Had I had the time again with an early diagnosis I'd have stayed on the pill permanently, or had a hysterectomy and adopted or fostered instead.

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That makes sense! Thankyou for your reply, and so sorry to hear how much this has affected your life too.

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Hello

This could of been my post.

I suffered excruciating pain, passed out, had recurring anemia from age 11, birth control helped and honestly I ended up taking birth control back to back for years so I never had a period. As soon as I came off birth control symptoms were back almost immediately. I have great admiration for the NHS but really had little success getting a diagnosis, I went privately as they found an enlarged right ovary on a scan for kidney stones from this They found endometriosis, adenomyosis, a large fibroid and a cyst diagnosed. That explains the issues ☹️

Choice was the Mirena coil or a hysterectomy, so trying the coil first,

Wishing you all the best but keep pushing for help, I guess as endometriosis is about 10% in the population , when I initially asked for help many years ago the consultant told me I have to just get on with it but no one should have too

X

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Hi enzo14, how did they know you had adeno?

I had my lap etc and due to me still having pain they suspect I may have a adeno, but only way to find out is to remove the uterus I was told x

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Hi Rachel

Initially they suspected it is on an Ultrasound, then the MRI confirmed it, it’s very diffuse through the whole lining / muscular element of the womb .

I saw a doctor specialising in imaging working with my gynaecological oncologist who took care of the cyst element too.

I was really grateful to have private health care, the diagnostic process was within days and immediate feedback, I am feeling so much better x

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Aww glad ur feeling much better.

It just goes to show the range of care/knowledge out there. I went to an NHS specialist endo centre for my op, but they said endo wouldn't show up on an ultrasound, only way to diagnose would be via lap etc and like I say the extreme of hyst to see if adeno. MRI imaging has never been mentioned. This worries me 🤔. You would think a specialist would know this right?

I am due to come off my pill after years being on it back to back to try for family, and am so worried about the pain as I am bad now, but havnt had a period in a good few years.

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Hi Rachel

Thank you

Adenomyosis will show up on MRI / can with a trained eye be recognised on US endometriosis is a lap procedure unfortunately.Adenomyosis is endo within the womb musculature, I have both☹️ They suspect the cyst was also an endometrioma as well

Might be worth seeing if you have adenomyosis as well they are known to come together

Take care I really feel for you, when I came off the pill , I had blood clots the size of half an egg, for 7 days straight and during work meetings it would be so rough I would bleed through my clothes onto chairs, very embarrassing ☹️the Original consultant basically said grin and bare it, I am pretty sure he wouldn’t 😯 wow what a difference

With my new consultant, I wish you all the best starting a family 😊😊😊

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Thank you enzo14.

I may will look into it after trying for family.

I hope we can conceive, though scans not looking +'ve.

Aww bless you, that is awful having to go through that. It's no life, they sure wouldn't put up with that!

Hope all goes ok for you too 😊

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Hi, I’m sorry you are going through this, I know it really isn’t nice.

Honestly I mostly deal with it all by being on the pill and i take it back to back for 9 weeks its literally the only way I can cope at all...I really could not cope before I started doing that even now I still get random pains and emotional etc but hey better random than constant in my opinion! I am still constantly exhausted every single day but I take vitamin b/vitamin c/vitamin d/iron/folic acid every day which do actually help a little (I started exercising more too which actually also helped with my energy levels a little bit) and it sounds crazy but i started eating pineapple eveyday which stopped me getting ill so much - it could just be in my head and that because i believe its the pineapple it works and not that it actually works if you know what i mean? But I don’t care because for me it works!

I hope you find something that makes everyday life a bit easier for you x

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It is possible you may have Hashimotos Hypothyroid going on as thats commom with Endo which is also Auto immune

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Was thinking the same thing!

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I have never even heard of that reallyfedup123, ill google it. Thankyou all for your answers, good to know its not just me. I do take a lot of suppliments and without bvits im much worse so they do help me cope but still feel like shit most days. Sick of being so tired! I wish i could just get pregnant then they can just take it all away after and get rid if the bloody thing.

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Just looked it up, no its not that, and have had thyroids checked before as they thought it may be a thyroid problem before i realised i had endo.

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Low B Vits may then be Pernicous Aneamia which masks as hypothyroid but please never accept docs telling you your thyroid is fine ...get your results and post them bcos the finer points we know but docs never do

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Thanks for the advice, i know everything has been checked so often and they always say its all fine when i phone for results. My b12 is borderline but i do take b vits every day and it helps a little. I dont think any of us can trust drs and we have to go for them for help when i know for a fact i know more about it than they do!

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Your legally entitked to copies of your results ...i honestly doubt yours are fine ...i have seen too many

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Im seeing a different dr on the 24th, and i will ask for copies of my results. In the meantime its finding something that will help to get through the day.

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You need a very full Auto antibody screen done ...AFAIK the only disease that causes constant virus like symptoms is Hashimotos hypothyroid and RA ...hence why i do not believe your doctors

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