A New Diagnosis and Game Plan

Jacqueline at the specialist

Weight Gain

I have been medically misdiagnosed…FOR YEARS.

I have been struggling with fluid retention and swelling for years as well as gaining weight.  Before we jump into this post, I want to make it very clear that I take full responsibility for gaining any weight.  Even if medically something is wrong, I know weight gain is something I am struggling with and in no way am I blaming anyone or anything for that.  Now, with that being said, there is no way to tell how much I have gained from just weight gain and how much my body gained from what is going on with my body.  We will get into that later in this post. 

I will link a post HERE if you want to read more about the fluid and swelling issues I have been having.Jacqueline on the way to see specialist

I felt something was wrong

I have felt something was wrong with my body for a long time.  I was rapidly gaining weight, felt my body become more swollen by the day and the way my body looked…I just felt something was not quite right.  This did not feel like normal weight gain.  My body did not look like normal weight gain.

I went to doctor after doctor trying to get help and to try to get some answers.  They all told me the same thing.  You are retaining a lot of fluid.  We don’t think weight loss is the answer.  You have some characteristics of Lipedema but we don’t think you have it.  I do not know how to help you…BUT try losing weight and we will go from there.

Why is weight loss the only answer?

The answer I was left with was basically weight loss will not help but lose weight anyway.  I have something wrong with my body and you don’t know what it is but all you can say is lose weight.  It did not make any sense and I did not get any help or support for what was going on.

I was shamed, put down and criticized for my body. I was told how awful it was that I gained weight after I worked so hard to lose weight.  I was told I should be ashamed of myself and that I need to find motivation again to lose weight.  During this time I was doing my best to lose weight.   I was on WW, went back on Jenny Craig, counted calories, counted macros…I did everything I could to try and lose weight and it just felt like no matter what I did, I just kept getting bigger and bigger.  I felt more uncomfortable and in more pain, daily.  The shape of my body was drastically changing and I did not know what to do.

This has been going on for years.  I was told I have characteristics of Lipedema, have a severe fluid retention problem, weight weight loss won’t help, but lose weight anyway.  Finally, I had enough and I found a specialist who specializes in Lipedema, and fluid issues and has helped several patients whose bodies looked like mine.  So I made an appointment to see him.Jacqueline at the specialist

Finally got some answers, A New Diagnosis 

This Doctor listened to me.  He heard me.  He respected me.  He took one look at my legs, the banding on my arms and the fluid all around my body and immediately diagnosed me with Lipedema.  A disease that I have been asking about for YEARS and been told for YEARS that I have characteristics of it but don’t have it.  He told me that you do not need all of the characteristics in order to have Lipedema and that a lot of doctors want to blame this on the patient being overweight and tell them to just lose weight…even though weight gain has nothing to do with it.  Hearing this made me feel relieved and heartbroken at the same time.

What did the Doctor have to say?

The doctor told me weight gain is a side effect of Lipedema.  That the weight I have been feeling like I am rapidly gaining is not real weight gain, it’s from the Lipedema.  He told me no amount of weight loss, calorie counting or restriction would have fixed this. He told me the weight gain was not my fault.  That is when I began sobbing in his office.  I have spent years hating myself.  Hating my body.  Wanting to go to drastic measures in order to lose weight.  Working so hard at weight loss.  Only to find out there was nothing that I could have done.  Once the Lipedema starts spreading in your body there is no stopping it.

Jacqueline at the specialistWhat is Lipedema?

Lipedema is when fat is distributed in an irregular way beneath your skin.  As the condition progresses, fat continues to build up and your body becomes heavier.  Over time these fat cells block the vessels of the lymphatic system and cause fluid buildup.

I will link an article HERE which goes into more detail about Lipedema if you are curious. 

What is next?

The next step for me will unfortunately be surgery.  I will need to have several procedures to break up and remove the Lipedema and help the fluid move properly.  It is now not only affecting my legs and arms but my hips, stomach, and back/ butt.  So I will need several surgeries on my whole body to help with this condition.  

The Lipedema in my body is at a pretty advanced and developed stage so it is going to take a lot of time and procedures to break up and remove the cells and get everything working properly again.  The surgeon thinks he will be removing a lot of weight from my body.  I am very anxious and scared and nervous about these procedures but I am also relieved that I finally have someone who knows what is going on with my body and that we have a game plan as to moving forward.Jacqueline at the specialist

One step at a time

I will be having surgery number one soon.  We will be starting on the front of my legs and going from there.  I will keep you posted, and updated and share this whole journey with you.  As I find out more, I will share more. Thank you for the constant love and support.  It means the world to me.  We got this! 




  • I am sorry you are experiencing this, but so happy that you have found a Dr who is knowledgeable and has a plan of action for you. Good luck with your upcoming surgery and look forward to hearing about your progress.

    Melissa W 22.06.2022
  • So proud of you for listening to your body and advocating for yourself and so glad you found a doctor who listens. Keep smiling and keep going, you got this and we are here with you

    Candice 22.06.2022
  • I wish you well and hope you get some relief. One step at a time. You got this! Cheering you on!

    Angie 22.06.2022
  • Im so glad that you found a doctor that finally listened to you. It sucks that we are told to lose weight yet nobody is willing to help. Instead we are shamed and made to feel less than. I think I have the same thing,but the doctors say the same thing. Lose weight and itll resopve itself. I have 3 kids,2 who are autistic. Im always fighting for their education and services for them that when its time to fight for myself I am so exhausted that I dont. Prayers for you and I will for sure be following you on your journey.

    CVaz 22.06.2022
  • Oh Jacqueline you’ve been through so many procedures and done so much hard work, you absolutely astound me! I am a couple years into my weight loss and wow is it hard. Keep your chin up dear, but even if you can’t we will be there for you! Sending love your way xoxo

    Christina 22.06.2022
  • Praying for your upcoming surgeries and SO very grateful you finally found a doctor who was willing to listen and help. ❤️

    Kendra 22.06.2022
  • Is it true that plastic surgery can make lipidema worse? I hope this new dr can get you some relief. I believe that I have a mild case in my legs the fat very bumpy looking and they get really swollen and heavy and it sucks that most dr will just tell you to lose weight instead of trying to help people.

    Wendy 22.06.2022
  • You are amazing don’t ever forget that. Take a deep breath and let the tension goooo. You can move mountains and cross oceans…you can make the energy in the room move.. Remember you are electricity and nothing will stop you on this journey…I believe in you..many blessings and good energy sent your way..

    Melissa 22.06.2022
  • Thank you for your willingness to be so vulnerable and transparent. All the best.

    Jodie 22.06.2022
  • I too have lipedema. I have wondered for a long time if you did as well. Praying for you for strength and courage! I follow Kaztalks on Instagram. Very helpful! Take care of yourself. Much love!

    Tamera 22.06.2022
  • I have gone through 4 procedures for lipedema with this doctor (I recognize his office!) and I can help you with questions if you need. There’s also a private FB group for his patients that’s super helpful. So glad you got your correct diagnosis!

    Beck 22.06.2022
  • I’m so sorry you’re dealing with this and have been. I’m sorry that people have been mean to you beggar if this and haver ridiculed your weight gain. I do know what it’s like to have something wrong age the doctors chalk it up to not exercising (I was) and a bad diet (I ate really well). It finally took one doctor to take me seriously and find PCOS. It’s not as serious as what you’re facing but I do understand the frustration. One doctor literally rolled her eyes at me.

    Anyway, as tough as this is and I’m sure you funny want surgery but have to be thankful for answers. I hope everything goes well and you’re able to start too heal.

    Amy 22.06.2022
  • I am so happy for you.. Finally there is hope and help… I hate it involves more surgery for you because it seems like a lot of this started after your surgery. The one thing that cannot be denied is that we have to be our own advocates. No one else is going to do it for us. We know our bodies better than any doctor and yet they refuse to listen to us mostly because of the weight. If you ever need a shoulder I’m here. Girl you are an inspiration.

    Denise Jo Garner 22.06.2022
  • Thank you for sharing! I suspect that I have it also and not sure where to begin in getting the diagnosis.

    Michelle 22.06.2022
  • Love you sweet friend. Sooooo happy this day has finally come. You deserve correct answers and possible solutions…..other than “go home and lose weight”. So hopeful ☺️

    Tammy Lindenmeyer 22.06.2022
    • You are truly a very brave woman! I wish I could just give you a big hug. YOU are really the only person who knows your body. I’m so glad you persevered until you got the true answer about what was going on with your body. By speaking up and teaching others about this condition, you very well may be helping countless other women who are in the midst of this same journey somewhere else in the world! Stay strong and know we’ve got your back! ❤❤

      Janina Laird 24.06.2022
  • Since lipidemia is a medical diagnosis will the surgeries be covered by your insurance?

    Kristine 22.06.2022
  • Praying this helps you so you begin to feel better

    Rita Salcido 22.06.2022
  • I’m so glad you have a diagnosis, and my heart breaks for past you, misdiagnosed unfairly. Was the doctor able to address the fact that at a time you did manage to change your body composition- I’m guessing that was through such intense physical & emotional labour? Or is it a case of your changes happening before the advancement of the condition? None of this really matters to me, it is more me reflecting aloud that you must have been working so much damn harder than even the gymest of gym bros- don’t let anyone underestimate your strength! The emotional toll of pushing against science? You are a champion! Is there much of a wait before you can access your surgeries? I hope they bring you a better quality of life. Sending love. If you can lose weight against this Dx, your tenacity can move mountains. Congress next?

    Corinne 22.06.2022
  • I’m so grad you trusted your intuition and kept searching for answers. You knew your body and as healthy as you have been eating and exercising everyday, it just didn’t make sense. You are so strong and we are here for you every step of the way! You got this! Love you.❤️

    Teresa Pidolski 23.06.2022
  • I have the same! Me they told me they discovered the disease only 4-5 yrs ago and they don’t know much about it yet. It’s some kinds of immunity disease like diabetes. You get born with it but in some cases it will be triggered and you get it. Other ppl have it in their body too but it will never “wake up” only 2 million cases known so far in the whole world. (Sorry for my poor English, I’m in Belgium!! Good luck with the treatment! Here they still swear with a fist, proteins and a lot of fishoiled products!! I will follow your journey and tell my doc every detail!!! You got this my friend!!!! SUCCES!!!!

    Catherine 23.06.2022
  • Thank goodness you finally know, I’m glad your doctor has a plan for you. I to have lipedema I was just diagnosed about two years ago I have it in my legs only but they’ve never given me a plan. they just suggested lymphedema therapy/massage praying for your quick relief.

    Trina Torres 23.06.2022
  • I am so happy that you finally have an answer and are on a path to help out the condition. I was laid up in the hospital for almost a full week when I went out of town last week. I was mystery girl to all of the doctors because they couldn’t pinpoint why I was in so much pain. They finally found a blood clot on a lung X-ray they decided to do on the last day before releasing me and put me on blood thinners. I was so relieved to have a solid answer because they were just going to release me and keep running blood tests and follow-up with me in 2 weeks kind of thing. Cheers to the great doctors that listen and are persistent in finding answers and solutions! Hope the surgeries help and don’t have too painful of a recovery.

    Jenn Huffman 23.06.2022
  • Awww Jacqueline. This makes me cry both sad tears and happy tears for you. I am so glad you finally found your diagnosis. I am so sorry that you had to go through so much just to get here. I have been following you for a very long time and you have always been and continue to be so inspirational, uplifting, honest, real and so true to yourself. Thank you for sharing your journey. I cannot wait to watch you tackle this next obstacle and kick it in the butt. 🙂 <3

    Brenda 23.06.2022
  • What type of doctor did you go to for your Lipodema?

    Laura 23.06.2022
  • I am so happy for you that youve finally gotten a diagnosis. Its an absolute disgrace to the medical community that you suffered with lipodema for so many years without a proper diagnosis simply bc of your weight despite so many obvious symptoms AND inquiries to your physicians specitically about the disease. We know our bodies better than anyone and Im glad you listened to you gut. Youre so strong and although the situation is scary, I have faith youre going to make it through and the best is yet to come.

    Rachel 23.06.2022
  • Hello Jacqueline,
    Thank you for sharing all of your stories. I am sending you good healing vibes. Yes surgery is so scary and when It is recommended by a medical professional then it must be a positive. I am so glad that you got some real answers and listening questions to your body is an important part of life. I wish you all the best in this journey of healing and healthy living.

    Allison Hetzel 23.06.2022
  • You have been an inspiration to me for years. I am so happy and angry for you at the same time. You earned your diagnosis by forcing the establishment to recognize you as the expert. You know yourself. I am trying to get any doctor to help me and it feels like I am screaming in an empt room and no one can hear. Thank you for giving us all a voice

    Angela Diyarza 23.06.2022
  • I am so happy that you finally have answers. You are so amazing and strong. Keep your head up, you will be healed before you know it.

    Patricia Moreland 23.06.2022
  • I think it’s great that you finally received a diagnosis and have a plan in place. However, you shouldn’t count on lipo to remove all of the diseased fat and think that you will be skinny overnight and the lipedema will be “cured”. Lipedema is incurable and will be with you the rest of your life. The fat will find its way back to your body if you don’t eat healthily and avoid “inflammatory” foods like sugar, simple carbs and highly refined foods. It’s also important to exercise and move. I wish you the best of luck on your long journey ahead.

    Tina 23.06.2022
  • You are awesome ! You can do this! Sending prayers and hugs on this journey ahead. Stay strong

    Vivian 24.06.2022
  • Pray healing over it… let God work his magic

    Natalie NAVARRO 25.06.2022
  • Dear Jacqueline, prayers for a successful surgery. Thank you for sharing your story. You have been through so much…Love and prayers, Susan

    Susan Swanson 29.06.2022
  • I am so glad you finally found a doctor who LISTENED. I wish you healing through your procedures.

    I was 60 when I finally got the correct diagnosis- Rheumatoid Arthritis. Like you, the drs I saw said the same thing – lose weight. Hard to lose weight when my body just hurt. 18 months of trying RA med combinations & I have been in remission for 4 years.

    I wish this for you! You are a blessing to so many on IG!

    Joan 03.07.2022
  • You got this! Wishing peace during this upcoming time. Little by little you’ll get better.

    Mariela 03.07.2022
  • I have been following your story for a few years now. I’m so happy you have finally gotten some answers/help. I pray your surgeries give you the relief you need. ♥️

    Susan Zick 03.07.2022
  • You have been through soooo much…physically and mentally. You are brave, strong and a testimony to all of us who have been watching you struggle. I hope that these procedure give you relief and your healing is quick and complete! I curse those who speak against you and make you feel bad. Sending you light and love

    Sandi 03.07.2022

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