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Undiagnosed and reaching out

Hello. My name is Lauren. Im currently undiagnosed with endo but wanted to reach out and see if anyone else has struggled with some of my symptoms.


As a teenager I was textbook endo or adeno but was told it normal for periods to hurt. However, my cramping was so bad at times I thought I would black out. I had severe pain that raidated into both sides of my back hips and upper legs. I had nausea, diarrhea, and often felt "fluish" like I had a low grade temp. The worst of my pain was always when my period started and within a day or two I felt totally fine. I would have IBS symptoms most days in the form of diarrhea but it wasn't super painful. I also had super heavy periods with lots of clots. I was also super irregular. Would have one long period then go 2 mos without one. I ultimately learned to live with it. You just hope it doesn't hit during an important event bc if so you know you would have to cancel.


Eventually, I was placed on depo and like magic no more periods, no more pain. It was magical. I was on depo for 4 yrs. They took me off and for some reason I did not have a period for 7 years. It was weird but honestly, no period, no pain. So I was ok with it. One doc checked my hormones and they came back normal and she said I needed an ultrasound but I never followed up. Stupid me.


Fast forward to 2 years ago. I slowly started getting my period back. At first it wasn't painful but it quickly started getting very very uncomfortable. Then the event that has changed my life. I went on a camping trip with a friend, she started and suddenly and way off date, I started. That night I began having severe pelvic burning. It was irritating my bladder and causing clitorial pain. I thought I had a UTI. At first all my cultures came back negative. Then I suddenly got 4 utis back to back, culture confirmed. I took abx and got on d mannose and they cleared. However, the burning pain and throbbing cont.


I was tested for IC, not it. I was tested for resistant UTI and that wasnt it. Eventually, they nerve blocked my pudendal nerve and it helped tremendously. So I got diagnosed with pudendal neuralgia. Here's the kicker I had zero risk factors for developing it: have an active job so dont sit for a long time, dont cycle or ride horses, no pregnancies/birthing, no previous surgeries. Even the doc was stumped as to why I developed it. And I've had terrible throbbing, burning pain off and on ever since and def my period makes it worse. I feel like there is something pulling on the back of my vagina and rectum. I get shooting pains in my left leg. My bladder is very irritable and the left side of my vagina, very very deep throbs. I have suddenly went from diarrhea everyday to feeling constipated. I get stabbing, breath taking pains in my rectum and pelvic, mostly left sided.


But here's the weird part. I do not get the same horrific cramping I use to have. My periods are more regular but I feel super sick like I have the flu and my pelvic girdle burns so bad when Im on my period and never fully goes away once I'm off. I feel so fatigued jist getting out of bed and going to work is a monumental task.


I am doing pelvic PT which temporizes the situation but 2 yrs later hasnt even come close to solving the problem. I am on gabapentin and aleve which barely takes the edge off. I feel something is terribly wrong with me. I use to be a college athlete, would hike mountains, was vibrant. Now walking is hard and irritates my pelvis and I feel like a shell of my former self. Like what is going on???


I feel like a sinking ship and want to know if any endo sufferer on here has had a similiar experience? If so , did anything help. Pls help.... I know this was long. Thank you if you made this far.


Lauren

  1. My goodness Lauren. This was so hard to read and my heart is completely going out to you, especially about you reaching out when you were younger and hearing "painful periods are normal." They are not and it's so upsetting that that was/is something young kids hear. You have surely gone through quite a lot and I just want to give you the biggest hug. You mentioned in the very beginning that you are currently undiagnosed and I'm curious, have you tried going to an endo specialist? Is that an option for you? While we cannot give medical advice as we are not medical professionals, I can include a few articles to read while we wait for others to chime in.


    https://endometriosis.net/diagnosis

    https://endometriosis.net/symptoms/bowel-bladder-problem

    https://endometriosis.net/living/different-pain



    I really hope these links help in the meantime while we wait for others to chime in. I'll be thinking of you and sending healing, low pain wishes your way. 💛 Kayleigh, Endometriosis.net Team

    1. Thank you Kayleigh. I appreciate the kind words.



      1. I just had a case review with a specialist in New York. They reached out and want to speak with me in detail and run some tests. Fingers crossed there is something that can be helped or at least more efficiently treated. Please keep your fingers crossed

        1. our fingers and toes are crossed! That definitely sounds like a great first step to better treatment. Do keep us posted on how it all goes. We truly hope you find exactly what you need <3 Sending big hugs. -Kimberli (team member)

      2. I am keeping EVERY finger crossed for you!!!! 🤞 I am sending nothing but good vibes and well wishes your way. And yes, just like said, please keep us posted on how it all goes! Thinking of you! - Kayleigh, Endometriosis.net team

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