See Alike in...

Alike App

Browser

jumbalya

587d

I don't have health insurance, PCP clinically diagnosed me with Endo, I'm going to see a OB/Gyn next week. My question is, did you have MRI imaging before surgery? If so, did it show anything? What stage were you diagnosed with? I'm trying to save money obviously I want surgery but full time student w/2 kids, can't afford 30k on surgery right now. don't qualify for medicaid.

Top reply
    • LyricRainn111

      582d

      I personally did not have a MRI imagining. I had a transvaginal ultrasound that revealed what they thought was an ovarian cyst, but come to find out it was Endo. I was diagnosed with Stage 2 via diagnostic laparoscopy.

    • LyricRainn111

      582d

      I personally did not have a MRI imagining. I had a transvaginal ultrasound that revealed what they thought was an ovarian cyst, but come to find out it was Endo. I was diagnosed with Stage 2 via diagnostic laparoscopy.

    • NancyDrew

      582d

      So sad just perusing through what people have written, how much these docs ro the most part have sort of been "experimenting" in us

    • 100Percent_K

      583d

      Nope, no MRI imaging before surgery. My doctors don’t believe it’ll do anything really considering endo is a surgical only diagnosis and I fit the symptoms to a T. They went in, I was misdiagnosed as stage 1 by an OBGYN in 2018 and I had a repeat surgery by a specialist in 2020 who diagnosed me appropriately with early stage 3

    • effelle

      583d

      Mine essentially said "considering you're having these issues and it wasn't anything they assumed previously, then we can essentially assume it must be Endo." MRI wasn't done on my side, and it never showed it in screenings since it was such a small area that caused all the pain.

    • Barrfamily

      583d

      I understand that I hope u feel better soon

    • Barrfamily

      583d

      Have u tried applying for Medicaid

      • jumbalya

        583d

        @Barrfamily yes, we don't meet the guidelines for it, and since I'm a full time student, we can't afford $700 health insurance each month

    • NancyDrew

      587d

      I ended up with a stage 4 diagnosis after untreated mistreated misdiagnosed Endo is been dealing with monthly vomiting nausea pelvic spasms that floored me. After having a colonoscopy endoscopy and wand ultrasound that found nothing (actually it triggered pelvic spasms at the office) I then had a very dismissive gyno look at me and ask me if I didn't think it was just gas🤔...then looked at my bloated belly and asked me if I was done with my uterus cause a hysterectomy was my solution. A GYno with no Endo belly clue or regard for the patients pain. As I was leaning forward I smiled thanked her and left her office. Second gyno little more compassionate but I don't think she had the skill set to deal with what she found when they went in. I was told my intestines had begun wrapping behind my rectum which explained the slew of GI issues and bowel obstructions etc not to mention the immense pain especially towards the "build up" I was told they found a lot every where. There were no pictures of the adhesions removed which lead me to believe she oblated instead of excised. I feel burnt and leaky. One big question I should have asked was how many excession surgeries have you done. Unfortunately I found Nancy's nook after my surgery it's an amazing resource includes great questions when you are interviewing doctors for your care. I am now on my 3rd gyno this doc was off Nancys nook list and I'm hoping I m on my road to better care now. As far as post surgery My lap was this June and I still can't sit up straight and stand for longer than 3 to 4 hours without sharp discomfort and I feel almost like what I can only like to an absesses all over my abdomen and they just keep multiplying. I found out later you can have other underlying issues like EDS that can cause healing to be really slow. Interesting how both correlate to connective tissue issues. I was placed on a slew of petroleum based pain killers, muscle relaxers that didn't even touch the pain. Recently learned other countries are finding a combo of CBD and THC actually stop Endo tissue from growing and hey it takes command over the pain without taxing your bone density or liver like the "gold standard" meds I was taking and then due to their side effects adding to. I have heard Endo being described by some like cancer that doesn't kill. Non functional on all the other meds including any form of birth control that my body wretches and they refused to absorb a girl has to work and with a clear mind. Or as close to cause we all know how the fog sets in when it really grips you. For me I've actually finally found some relief surprised but not shocked that it was something natural that worked in rhythm with my body that had the most positive affect. Taking each day as it comes while I wait for the new appointment under better care 🤞. At work my schedule has been adjusted to part time permanent due to this being a perm disability. Can't say how grateful I am for having folks at my job advocate for me more than most docs in the beginning cause when you aren't feeling great your passion becomes a chore. It's hard to think or advocate for yourself when all you are doing at times is just trying to get to the next hour and let the pain pass. A big piece of advice if at any point you feel your doctor/s are not listening remember they are providing you with a service. One they get paid very well for and the least they can do is listen and at the very least if that isn't being accomplished, Kow you can right then and there walk away. ❤️💕🙏 To everyone going through this

      • NancyDrew

        582d

        @NancyDrew Oh and yes MRI was done and showed nothing. I know when I was younger I went and tried birthontrol via planned parenthood or similar organization very temporarily cause the control caused more issues than it solved but everyone's body works different and Endo is such a complicated disease there's no one remedy/relief or for that extent know cure if a doctor claims to, run. Myth one having a baby cures Endo, hysterectomy cures Endo. Endo can be thoracic etc not just in and aroundpelvic floor. Love to all dealing with this. Not an Endo warrior, just someone like everyone else here trying to figure things out💕

      • NancyDrew

        582d

        @NancyDrew Hmm yep have family in schooling or out of schooling for med degrees and they all think it's ridiculous that you could potentially take advantage of something as benign or non psycho active like CBD but are ok with putting you on heavier sedatives. My experience is schools work for the most part even if you hold a very sensitive position. Ok with meds like Flexeril or baclofen or combo of both. The med schooling and field needs to be revamped from the ground up. I was same as you for a while I had no insurance just bearing and gritting the months as they passed. Hope you can find relief somehow

      • jumbalya

        583d

        @NancyDrew excellent advice, thanks for sharing your story, you've been through so much. You are the definition of an endo warrior! I wish I could have CBD with THC but I'm getting closer to starting dental school, and they don't want me on THC working on patients teeth ya know? My fear is that my story is thing to replicate yours. Without health insurance and limited funds, it's difficult to doctor shop.

☝ 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

Thank you! Your submission has been received!
Oops! Something went wrong while submitting the form.

Want to chat or share? Download the Alike app now and get complete access to Alike.health's unique features.

Find people who are
experiencing a similar
medical reality

100% Free
100%
Free

Download Alike for the full experience

JOIN

View All

Bupropion

night sweats

paranoid

Valium

sertraline

palpitations

Anxiety (Including GAD)

Depression

palpitations

Depression

Valium

Bupropion