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Unusual Symptoms

Hi Endo-Sisters,
I have been a 'quiet user' of this site for about 3 months now. I am just reading about your experiences trying to make sense with what is going on with myself.
I am 43 years old. 5 years go, I found out that I had endo when my new husband and I tried to conceive. After 2 inseminations and 4 IVFs someone finally figured out that it might be endo that stood in the way of us having a baby. I have two daughters from my previous marriage. I had them when I was 25 and 28 years old. Did not have many problems conceiving then.
I am reading about many of your experiences with endo and I can't help by think that maybe it is all in my head. My symptoms are so much different. My periods were never painful nor heavy. Right now, my period lasts a day or two max - which is very unusual (I kind of start thinking that it is related to my age more than it is related to endo???).
I had a laparoscopy 5 year ago. I was told that it was stage 3 of endo and my bladder was covered in it (which I thought explained why I had so many bladder infections - over 5 times a year). I also noticed steady weight gain, which I was not able to get rid of with exercise nor a good diet. My life changed dramatically after the surgery. I had more energy, my weight went down, no more bladder infections. It was great. Fast forward 5 years and now I am experiencing some weird GI problems with steady weight gain (again). I have been working with a GI doctor for a while now. He can't find anything abnormal with my intestines. About 3 months ago, it finally hit me, what if endo is back and is implanting itself on my intestines? I talked to my GI doctor, but clearly the man knows nothing about the endo. Any of you ladies experience some unusual symptoms doctors can't explain?
I know my body and I know that something is off. I am tired of doctors not looking at me as the WHOLE, just some chunks related to their specialty. I scheduled an appointment with an expert in endo who I found myself. I can't believe that after my surgery nobody told me that I should be under the care of a specialist and my endo should be monitored. I seriously though that the surgery got rid of it for good.
I am so glad that I found you Ladies...

  1. Hi, You are not alone. I have very painful periods since I was twelve but it also only last about 3 days. I was not told a lot about Endometriosis after being diagnosed. Just like you I thought the surgery was going to be a cure. I was wrong 😑 But I have been doing my own research and reading the ins and outs of this stressful condition. That’s how I found this community! Just remember that nothing is all in your head! You know your body better than anyone. My heart goes out to you and I wish you all the luck on your journey.

    1. Thank you so much. Your post and kinds words mean a lot to me. I am so grateful for this community.

  2. Hi , welcome to the community! I'm so sorry that you are dealing with all of this. Especially that you weren't given the information about endo that you needed. But I'm glad you are here. You are the one living in your body, so you ARE the one who knows it the best.
    Endo can be tricky: the "classic" symptoms of period pain and pelvic pain don't affect everyone, and it may cause other problems instead. Here's an article that talks about some of the less-recognized endo symptoms, that mirror a lot of what you are describing:
    I really support your decision to see a specialist; a knowledgeable and supportive doctor can make all the difference.
    Sending best wishes for your journey. Please keep in touch to let us know how you are doing. -Audrey ( team)

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