Help Please.. Undiagnosed and getting worse..
Posted , 6 users are following.
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 anxietyand 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 
0 likes, 23 replies
rocky31676 olivia10325
Posted
It will be tough to anyone in this forum to help unless they are undergoing the same symptoms .... so your best bet is check for any malignancies with your health care provider asap.
olivia10325 rocky31676
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craig84609 olivia10325
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You need to be tested for Crohns Disease and Lupus. You seem to have an inflammatory response going on and it is tough to figure it out as to what body systems are affected by it. It seems to me that it is a lot of things and that would be Lupus. Do you have any skin rashes of the face? You need to have a physical with complete blood work to see if you have inflammation or something else. Don't let them push you away. Get the help you need to answer your questions. I had pain and issues like you and I have Crohns Disease and possibly Lupus, but it sometimes takes years to get a diagnosis, because they have to catch it when it is flared up. They will have to do a biopsy of the colon and small bowel to catch IBD. Lupus, you need to have multiple tests done. You may have neither of them, but something is wrong.
olivia10325 craig84609
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Marina_Dee olivia10325
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When you say "painful sex" do you mean you feel very sore or is it painful when you have deep intercourse, or can you explain in your own way?. Has your partner noticed any problems or differences?
olivia10325 Marina_Dee
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Marina_Dee olivia10325
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Anyone mentioned vaginismus? Try Googling this condition. What do you mean by "skipping" periods? Do you mean you havent had any?
olivia10325 Marina_Dee
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When i started on the pill i was going through quite a depressed stage of my life and my periods sent me to rock bottom where my family and doctors feared for my life. They told me i could just skip the sugar pills and start a new packet straight after the old active pills packet was finished and so i did and have been told by a few other doctors that this was okay and so just continued to do it. It is also the first point of call with endometriosis as it stops bleeding and therefore endometrial tissue is unable to form or grow so there is no way i could have endometriosis in my opinion.
Marina_Dee olivia10325
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olivia10325 Marina_Dee
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I am due for one now and hoping the female doctor i am seeing in a week and a half is able to do it.. its been on my mind that something more serious could be up as im getting bloated very easily which has never been an issue for me and I understand these are all possible cervical cancer symptoms. I know it's unlikely but still worrying
joanne33336 olivia10325
Posted
Oh Olivia you poor love,
lt sounds like you have some inflammatory disease going on. Could be lupus, or any type of auto immune disease. I have fibromyalgia and a lot of your symptoms are like what l go through. God bless you so young to be dealing with all this and it's so hard to have a dr. listen to you at the best of times, believe me l had pain in my arm for 3 years and l got so fed up of being treated like a hypochondriac l demanded to see a specialist and it turned out that l had 3bulging discs in my neck and nerve trapped which is what was causing my pain. Please keep trying to make them listen to you, don't you give up please. You matter just as much as the next person. Don't let them gaslight you ok. Write out what is happening to you, in a timeline it may help you when you do eventually see someone. I will keep you in my prayers. xx
craig84609 joanne33336
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That is what I am thinking as well. I think she has an auto immune disorder of some type. Doctors can seem very uncaring at times. My current doctor is unwilling to even admit that I might have Crohn's Disease instead of UC. Even when getting information that could only mean Crohn's disease. I don't understand why my doctor refuses diagnose me with CD. I have all the symptoms of it, but she doesn't want a patient telling her what they have. So I am looking for a new doctor again. Don't accept what they say, if you know better. Listen to your body and find a doctor that will do the same. Mine is trying to tell my current doctor that something is going on, but she isn't listening, so time to fire her. Once you know what you are dealing with it will be a huge weight off of your shoulders. Hang in there and don't give up.
olivia10325 joanne33336
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olivia10325 craig84609
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joanne33336 olivia10325
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Yes my 21 yr old son is going through a tough time too he was injured playing rugby league someone put his boot in his back he doesn't know who it was........he has refused to go to Drs he was really bad he eventually went and had a scan which showed some damage but he still wasn't improving. He started work and had to quit due to the pain he had an MRI and has L4/5 bulging discs and trapped nerves he is waiting for surgery. They called him in last week for the op he went for his pre op saw all the Drs ect and the last one told him no he was too young and these things can resolve themselves l wish l could have been there. Poor kid he was beside himself with frustration. The irony here is the specialist said he would operate on him last year if we went private.........go figure.
l really hope and pray that you get some answers soon. You know how you feel you know when you are hurting why don't they listen???? Sometimes when a dr doesn't listen l feel like putting my fingers in my ears and saying la la la la la that would make them stop and think what are you doing that for ? Then you could reply well isn't that what you are doing to me .......not listening. Lol
olivia10325 joanne33336
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I am very sorry to hear about your son and that they wouldn't treat obvious pain and damage! It just does not make sense in my brain how doctors can turn away people due to their age! It is definitely extremely frustrating - i hope you and him are able to find someone worth your time and energy to help!
Haha - it is definitely exactly how i feel and if i could stick my fingers in my ears at this stage - i would!!
joanne33336 olivia10325
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Thought the sticking fingers in your ears would resound with you lol. Well today l went through my son's old scans he has had this injury since 2013 and he is getting worse. Tommorow l will photostat the results he has one from 2015 as well. I have wrote a letter to his specialist and will enclose the scan reports and then we will see what we will see. My son doesn't want me to complain but l am his mum and that dr. crossed the line as far as l am concerned. I just have to do this, l guess it's a mum thing. I just hope he doesn't get too mad at me for doing it. As l said in my letter pain is pain whether you are 20 or 60 yrs old it doesn't make any difference. I hope you get some one who will take you seriously feel free to use that line. Good luck l will be thinking of you.