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What was your experience being diagnosed with endometriosis?

Question: What was your experience with with being diagnosed with endometriosis and did you have doubts that you 'just had a bad pain tolerance' or you were 'being over dramatic?

I'm new here and I am currently very new to this. I am waiting to see a gynecologist to see why my periods are so bad. It's taken me over a year to be given this referral and it's been a very distressing and an emotional roller coaster so far. I keep doubting myself and pain and thinking this must just be normal but I really believe I have it and its scary.

I would love to talk to some of you and hear your stories on your diagnosis and the symptoms you had on the lead up to your diagnosis too. My boyfriend is so supportive but I hate to put my constant stress onto him and I think this would be a great way to talk people who I am possibly in a very similar situation too.

  1. Hi there - Thanks for your question & for reaching out to our community.

    I first want to share just how sorry I am that you are experiencing such pain. I can completely relate to feeling as though it was maybe all just "in my head" until I finally received my diagnosis! Personally, I was very guilty of not advocating for my health & openly discussing my pain & symptoms with my Ob/Gyn and I really wish I had sooner. I had terrible periods, back & leg pain, extreme bloating, occasional ovulation pain & bowel problems. I have had 1 Laparoscopy & currently have an IUD and am experiencing currently an improvement in my pain & symptoms. Fingers crossed this improvement continues.

    Have you received a date yet for an appointment? Let me share some resources with you that may help in your journey & in preparation for your visit.
    Downloadable Guide: 6 Signs You May Have EndometriosisHow To Prepare For A Doctor’s AppointmentHow is Endometriosis Diagnosed?What Are the Signs and Symptoms of Endometriosis?

    Know we are always here for support. Will you do us a favor & keep us posted? Sending all encouraging thoughts your way & that you get answers for the pain you are experiencing. Hugs.

    1. Hello. Thankyou so much for replying. I do have have an appointment with a gynecologist now, it is on the 24th of August.

      I have been writing all of my symptoms down and I'm taking photos of my bloating when it is at its worst to also show doctor. I wish the appointment was sooner as I've had a really bad week but im still very happy I finally have date!

      My main concern now is im worried how long this whole process could potentially take, and also I have this awful anxiety of 'what if they do the surgery and there is nothing there?'.

      1. Hi ! I know that feeling and concern. I had that and still have that even when I go to doctors appointments! After years of being told nothing is wrong, that sort of just stays in your mind. Anyways, I just wanted to check in on you and see how you last appointment ended up going. Were they able to give you any answers at all? -Kimberli (Team Member)

    2. , I wish I could hug you. I know the feeling when you are just starting the process of trying to figure out what is going on, and getting a diagnosis.

      So many doctors and even others can make you feel like it is in your head and that we are making up these symptoms and pains. Please know though, it is not. If you feel something is wrong with your body, then you fight to be listened to.

      For me, symptoms didn't really start when I first got my period. I had heavy periods and pain but it never really occurred something was wrong. I lived a pretty normal childhood, playing sports and being active. It was actually in my late 20's where I started seeing these weird symptoms. Sex became super painful, I was bleeding all month with only a few breaks, so much nausea and vomiting, horrible mood swings, dizzy spells, aches all over my body, bloat, constipation/diarrhea. It was then I knew something was off.

      I must have seen a handful of different doctors, all which ended up telling me the same thing, I was healthy and they were stumped. Unfortunately, endometriosis is typically not seen on scans or in blood work, so every time those came back crystal clear, it was so aggravating. They were missing something and I knew it.

      I finally found a gyno that would perform surgery. It was ablation surgery (which is actually the worst kind to get) but at the point I did not care, I just wanted answers. I had that same fear as you, going in, what happens if they do not find anything, then what? But after I woke from surgery the doctor was right there telling me, yep you have endo.

      At that point it was the best news I have ever heard! Confirmed I was not crazy. But because that surgery was not done with a specialist, a few months later my symptoms returned. This was all 2017. Fast forward to last December, I had excision surgery (that is the gold standard for endo) with an endo specialist, and he ended up finding way more than my previous doctor.

      So so far, 2 surgeries, birth control (to help control my cysts), and change of diet have been how I have been managing. I am certainly not better. But I am working on it.

      Please know you are not alone and you are not crazy. We are the only ones that know our bodies and when they are feeling off. And if you think yours is off, there is a pretty good chance then something is going on. I know it is stressful not knowing how long the process will take, but just keep pushing and it will happen. Reach out anytime. I know it is so nice to be able to chat with others who understand what I am dealing with. Hugs and good thoughts being sent your way. Certainly keep us posted to on how everything goes <3 -Kimberli (Team Member)

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