No PCOS, No Endo, What's Wrong with Me?

Posted , 3 users are following.

To make a long story short, my period has ALWAYS been irregular. Ever since I got it when I was 9, it has never been regular. It progressively got worse and by the time I was 14 I was skipping periods for 3 months at a time, then 6 months, a year, and then a year and a half.. then I would get a period and and then not have one for a great deal of time.

I went to an obgyn when I was 18 because my mother wouldn't take me to one prior. They diagnosed me with PCOS without any diagnostics run, no blood work, no scans, I wasn't losing hair or having hair in strange places, but the lack of period and the terrible feelings I got when I actually had my period were enough to have a dx ready. They threw me on birth control and tossed me out the door.

I bled for around 3 months straight after about 3 months on the pill. My period is terrible, I get n/v/d, extreme fatigue, and crippling pain. I run a fever and just shake. So they made me not take my break week and continuously cycle.

Eventually the bleeding subsided and I went to a new obgyn where they diagnosed me with endometriosis after doing ultrasounds, blood tests, and everything came back normal.

I requested a laparoscopy because they were going to give me the Lupron injection and I wanted to be sure that I had endo prior to signing up for that mess. They went in and found nothing. Absolutely nothing.

So now I'm back to square one and I may need to switch obgyn doctors again because the last time I went in they treated me very rude. I was put on physical therapy before we would do the Lupron anyways, hoping to restart my period, but the CRNP I saw at my last visit tried to blame my lack of period on gastric problems because my bowel is longer than most peoples. She had no clue what the doctor had said to me and ordered and was so rude and skeptical of everything I said that I left there so frustrated and back to square one. She said my uterus and ovaries all look fine. And I asked why I'm having these problems and she would change the subject, saying maybe it's an STD. (Strange. Don't remember having sex at 9 years old. And I have been tested for all of that at my last obgyn and she didn't believe me.)

I don't know what to do. I just want a name for what's wrong with me.

0 likes, 2 replies

2 Replies

  • Posted

    Hi bewbie,

    can I ask your age now?

    i know you started this nightmare at 9yrs. 

    im 4o now, I was diagnosed with pcos at 14  had my periods at 11 off /on heavy light/ very very painful!!was told l would never have children that I’ve ovaries the size of walnuts and snd they’re riddled with cysts” yes how horribly I was treated I’m as I’ve said older now after 21 scans of seeing for myself they were as the nice lady said but my 22 scan.. GONE. so many questions so many left unanswered. That’s me.

     I think you are best off to see your dr from the start with this. Too me from the outside looking in you’ve been told this and that been given conflicting info. Being given a diagnosis then not...I really feel for you.

     Explain that you are left extremely confused about this and this problem is not being resolved.

     It’s no good like you said to put you on the pill just to regulate your bleeding. It’s clearly not working anyway whatever they are trying too do!

     Somtimes youve got to push and ask the questions you want.

    this maybe easier said than done but it’s youre life and your future here.

    its good that the scans show no cycsts, you’re ovaries are fine. This does not mean that you don’t need answers.

     Have you had a hormone level test at all? It can show if there a rise in one more than the other. Also there a medication called Metfemnic acid it help with the pain a lot.

     

    I sorry to hear you’ve all this trouble it isn’t nice especially if you’ve been treated  horribly where the empathy there? We have to think Not everyone’s the same, try again.

    take care

    vicky🌈

     

  • Posted

    Hi, it sounds like you've been given the run around like a lot of us have. I think sometimes it's cause doctors don't want to be quick to diagnose, and I guess I can understand that.....however.....its not fair nor is it professional at all to blame you for whatever is going wrong.

    Just a suggestion, since I tried this and found some relief for a good while.....i was tested for a hormone imbalance and discovered I have thyroid issues, as well as an imbalance in estrogen, testosterone and other things. It may not be for everyone but at least read about it.... hormone therapy... research BioTe.... i can't even explain what a wonderful change i felt when i started it...i have more energy. I dont have all the anxiety I was experiencing before...its worth a try....

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