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Help Please.. Undiagnosed and getting worse..

Posted , 6 users are following.

olivia10325
olivia10325

Hi All,

This is the first time im writing on here because i feel like im at a complete dead end. Been to endless doctors who seem to just shove me in the corner without even giving me any tests and feeling lost.

Im 19 (turning 20 soon) and the last two years my physical and mental health have been going to completely down hill. The first real problem that i had for a year before all of this started was extremely painful sex - this is still a problem and specialists i have seen wont give me any explanation expect i need to have surgery because i apparently have endometriosis- but ive been on the pill for years, have been skipping my periods and have never had a problem with sex before and have no other pain or problems in that area! So im definitely not rushing to have surgery for something i dont believe i even have! About 9 months after this- i started to develop more problems, mostly with food at the beginning, and still - most days everything makes me feel sick! And i will feel sick for hours and its not necessarily a nauseous feeling, its this weird pain under and near my belly button.. then alternating constipation and diarrhoea began to get worse and worse and i began to feel very tired and weak even after sleeping. All the other little problems i had were managable- up until the point 3 months ago, i got extremely ill. I couldnt eat, i felt sick 24/7 for 2 weeks, 8 couldnt keep food in (i was not throwing up- but the other way), i was so weak that a trip to the bathroom was a struggle. I was so unwell- I actually thought i might die, ive never felt that sick in my life. Doctor got me to do a stool sample which came back negative. I slowly slowly got better and it took a while to be able to eat normal foods again. But in light of this - pre existing but manageable symptoms became a big deal and a few new ones showed up. I am now having chronic daily headaches, nausea still, food hypersensitivity is still off and on and im not sure what the reason behind being able to eat anything one day to not be able to eat at all the next, i am constantly tired and its beginning to make me feel like an old women- not at young, fit 20 year old! I have also now got severe anxiousness - i have a phobia of throwing up and others throwing up around me and for some reason - now this is always on my mind. Ive stopped eating because im worried i might be sick (unless i buy all fresh ingredients and make the dish myself which is usually what i have been doing - but its not always possible and some days i wont eat) im getting depressed and then numbness especially if i like bend my arm, my hand will go numb, body aches, joint pain, over all weakness. Lump in throat which was the first symptom which showed up while and after i got sick, i still have painful sexual intercourse, complete loss of appetite which is definitely distributed to my anxiety and therefore weight loss, (i am under 50kg and i havent been this thin since maybe 8 years ago. And then on top of all this my hair i falling out and my skin is so dry.

I just feel so lost experiencing all this and i feel like im doing it alone. No ones understanding me and i just dont know where to go next. Im hoping someone on here can give me a clue or even having possibly suffered similar things. Im willing to listen to anything right about now..

Thanks for reading and i hope you can help sad

0 likes, 23 replies

23 Replies

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  • Purpledobermann
    Purpledobermann olivia10325

    Posted

    Hi Olivia.

    You can still have endometriosis on the pill. The pill will just help control it to some extent. And sometimes not! Get a second opinion about endometriosis to see if the second one will concur.

    Some of your symptoms are clearly root signs and some are secondary. E.g. your decreased food intake and sensitive bowel is decreasing the amount of nutrients you are receiving and absorbing so obviously this will give rise to a host of other problems like weakness, anxiety, hair loss etc. The spiralling anxiety makes it difficult to heal as well as making you more sensitive to everything. Becomes a vicious cycle. The longer this is all left to brew the harder it will be to discern the cause.

    So, back to basics - what kind of blood tests have been done since this all started to escalate? What kind of other tests except stool sample that was 'negative' - what was it negative for? What was tested?

    Have you had any imaging except the uterus? Any ultrasound of lower and upper abdomen? Liver, pancreas, gall bladder? Thyroid ultrasound and blood t3, t4 and THS levels?

    How is your iron?

    Have they checked for active inflammation at any point? CRP levels? Lymphocytes? WBC?

    If any of the above were not done when your symptoms first started escalating you need to follow up with your doctors or find a way to get you seen by new doctors.

    Because this appears to be a spiralling condition I would not be so sure it is a generalized inflammatory thing. The trigger may be something simple.

    I wish you a quick resolution. Sending best wishes.

     

    • olivia10325
      olivia10325 Purpledobermann

      Posted

      I have had none of these tests done - despite my asking and am hoping my new doctor will give me the referrals to get them.

      I have not had a blood test in 2 years, the stool sample i took the doctor defused to give me a copy of so i cannot even tell you what it was testing for expect being negative which is all i was told.

      I had my uterus done a few ago and tried again recently but due to the fact it painful the gyno stopped even though i told her - no its okay this imaging is important and then was given a referral to a professional internal ultrasound person and i could just not afford to see him - was way out my price range!

      Have had no ultrasounds of any of my abdomen or thyroid and despite asking for my thyroid hormones to be checked as it ran my family i was declined as i was 'too young'

      My iron has been low since i was a young girl so have been taking tablets for a while now for this.

      And no have never had any inflammatory tests done - i am unsure what these are..

      Everything you have said are the tests i have written down that i want to have done when i ask my new doctor. She is the one at my tafe and so im hoping will have a bigger care towards young people and not wipe me off at being too young for anything because it has been very annoying dealing with grumpy and rude doctors!

      Thankyou for your response it has just concreted the fact i need the tests i thought i needed done, done..

    • Purpledobermann
      Purpledobermann olivia10325

      Posted

      This is very disturbing. There is no excuse for witholding basic blood tests because you are young. It is the first thing that should have been done.

      FBC including thyroid function and liver function, iron including binding (TIBC) AND CRP is a must. Insist.

      Either at the same time or following tests they need to refer you for an ultrasound that you can afford. Ultrasound should capture full view of lower and upper abdomen. They were stungy to begin with now they may as well do their job. Something is ruining your quality of life and compromising your overall health. It may be something simple but just leaving it to see how it develops is not acceptable on account of your age.

      Bring someone older along with you if possible. This is really bad practice on your doctor's part.

       

  • Marina_Dee
    Marina_Dee olivia10325

    Posted

    Olivia,are you in US? I have been assuming you are.  
    • Marina_Dee
      Marina_Dee olivia10325

      Posted

      Dont forget that in Australia,as in UK, you are entitled to copies of your medical records. So if you think there are lots of records and you dont know what they say,it may be worth spending a few dollars [about 33] to look at them.  Always ask the consultant for a copy of a letter which they will send to your doctor after a consultation. 
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