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Dealing with Unexplained Gynecological Pain

Talie

533d

I've never posted on here before but wanted to give it a shot: last night my gyno advised me to go to the ER for evaluation and workup after 5 days of off and on pain and discomfort in my lower abdomen. The pain started Thursday, as did my period, and was easily a 9/10 in terms of pain. I almost passed out. Friday I called my gyno, and they said they'd get back to me Monday. Fri was probably a 8/10. Then the pain started radiating to my back and thighs. No medications worked, heat was a Godsend temporarily. Long story short, the ER found nothing wrong and just said I was mildly constipated. But im having a hard time because everytime I would said "uterine pain" they would look at me funny, like they didnt understand what i was saying. I just keeping picturing their faces in my mind. I wasn't kept in the loop at all and didn't even know what tests they were running. I feel like I waited for 6 hours for them to tell me I'm crazy. My own gyno said there is no explanation for my pain based on the bloodwork, urine, and ultrasound. So, I guess now we just wait and see if it happens again? I feel like I'm going insane.

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13

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Generalized pain

Chronic Generalized pain

Low Back Pain

Acute lower abdominal pain

Endometriosis

Constipation

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Top reply
    • EatenByWormy

      531d

      @Talie it’s not discussed enough. Reproductive health itself is not regarded as important, or rather it’s “too private.” I disagree, because if I had known my own family medical history, I would have been more empowered to advocate for myself- not that a teenager should NEED to do that, but it would have helped. Never ever ever compare your suffering to someone else’s. They’re two completely different things. You are you. Your perception of your own body and mind are unique to you. You have lived a life that no one can claim as identical to theirs. I’ve been symptomatic since I was 16, diagnosed at 19, and I’m finally fortunate enough to be well-managed now. If I can help you with any of this, please let me know. It’s hard to go alone- you don’t know what you don’t know. 💕

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    • 100Percent_K

      530d

      Highly recommend you look into Nancy’s Nook Endometriosis Education group on FB. They have a list of vetted surgeons in each state. There are some listed for Pennsylvania already

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    • Zelda_Ziggy

      530d

      This pretty much happened to me last night!!!

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    • EatenByWormy

      533d

      OH and I forgot to mention- the size of the endo lesions has nothing to do with how much pain you experience. There’s no known reason for it. Some people could have serious endo w no symptoms, and some people have smaller areas but be in agony.

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      • Talie

        533d

        @EatenByWormy that's a really insightful comment. I've been spending time thinking "oh, people have it worse pain-wise" . I think it's also difficult bc I do have hypochondriac tendencies but this time i KNEW something was different. This is just the beginning of my journey, I guess. Thanks for responding!

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        • EatenByWormy

          531d

          @Talie it’s not discussed enough. Reproductive health itself is not regarded as important, or rather it’s “too private.” I disagree, because if I had known my own family medical history, I would have been more empowered to advocate for myself- not that a teenager should NEED to do that, but it would have helped. Never ever ever compare your suffering to someone else’s. They’re two completely different things. You are you. Your perception of your own body and mind are unique to you. You have lived a life that no one can claim as identical to theirs. I’ve been symptomatic since I was 16, diagnosed at 19, and I’m finally fortunate enough to be well-managed now. If I can help you with any of this, please let me know. It’s hard to go alone- you don’t know what you don’t know. 💕

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    • EatenByWormy

      533d

      I have 100% experienced the same level of pain and it was endo. My OB-GYN was mortified when she operated on me in 2018. If it is, there is FINALLY! a medication to treat it that isn’t birth control.

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    • amandaMarie19

      533d

      I'm so sorry you had to go through all that. I completely agree, I ended up in urgent care nine times and the ER twice for the same exact symptoms. Everyone thought it was my appendix, but when the test came back, they didn't really know what to do with me. Some nurses and doctors thought I was faking the pain for meds until I came back from an ultrasound sobbing. This really gives me deja vu, and I'm so sorry because you must be so frustrated. Especially with how much time and money you spend in the ER. But I would partner with your OB and bring up endo. It took me six months to finally be diagnosed, and although there's no true cure beyond medication, I at least finally knew what was wrong with me. I remember feeling crazy too listening to the doctors tell me I'm fine time after time and you're not crazy. You just have to speak up and put be your own advocate with what works and what doesn't. Hell, with most doctors, endo doesn't even get brought up as an option. I was told appendix, miscarriage (wasn't pregnant) and then cancer as their theories 🙄

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      • Talie

        533d

        @amandaMarie19 the worst part is I made my parents come with me so I made them sit for 6 hours for nothing, too. I have anxiety so I didn't want to go alone. Also seriously, they were like "oh you aren't pregnant!" and I was like awesome, great, thanks. I know they have to rule it out but they sounded so excited. This really helped me. Thank you for commenting.

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        • amandaMarie19

          532d

          @Talie yeah they love doing pregnancy tests..I had probably a dozen throughout the whole experience 😅 I felt the same way. My husband sat with me through every dreadful hour of ER, urgent care and doctor's trips and appointments. But even if you walk away without answers, they would still be there because they care and love you. I felt like I put him through hell with the late nights and all the worry, but he was there because he wants me to be better, just like your parents. Just hang in there, it's frustrating even after the diagnosis, but you will have periods of time that are much better ❤️

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    • jamin90

      533d

      My endo didn't show up on an ultrasound either. But my doctor went ahead with surgery. He found some little tiny spots of endo tucked behind lots of tissue. I was almost passing out before I went on birth control at 16. Then after surgery at 20 my periods have been getting better and better. Before I switched doctors my gyno looked at me crazy when I asked them to do something about me possibly having endo since my mom had it. You gotta advocate for yourself and don't stop until you get a real answer.

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      • Talie

        533d

        @jamin90 this helps a lot. Thanks for responding 💕

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    • Sd123

      533d

      Im so sorry you had that experience! Your pain and feelings are valid. I’ve never experienced that “pass out from the pain” kind of feeling before my endometriosis got bad. If it’s persistent, Dr Kanayama is an amazing endometriosis specialist in New York. I traveled from California to see him. He finds hidden endometriosis and or adenomyosis in so many women that have been ignored or dismissed by other providers. He even will find hidden lesions that we’re missed on previous laparoscopic surgery with other big name hospitals etc. Not sure where you are but he does virtual consults and he definitely changed my life.

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      • Talie

        533d

        @Sd123 cool! I'm in Pennsylvania so that's awfully far. Thanks for the response, I will look into it.

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☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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