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In Need of Support

Hi,

I am currently seeking a support system when it comes to my endometriosis. It's excruciatingly painful lately and as far as birth control goes nothing seems to work. I've been on 3-4 different birth control pills and now I'm on the depo shot. The depo shot helped for maybe 2 months before I was right back to where I started bent over tied to a heating pad trying not to vomit. I'm in hell for at minimum 2 weeks out of the month feeling like my insides are being squeezed by barbed wire.
The 1st time I went to an OBGYN I had a transvaginal ultrasound where they found nothing and told me it was psychosomatic due to my history of sexual assault. Needless to say that this has affected me psychologically and I have struggled to not only go to an OBGYN for fear of being told that my pain was purely psychological but I struggle with being touched still as well. I recently found my biological family about a year ago and discovered that my oldest sister, biological mother, and aunt all have been diagnosed with endometriosis. My sister finally was able to have a hysterectomy after she had 3 children, and after multiple ablations. In all honesty I want a hysterectomy so I no longer have to live like this, but I know the reality is that no surgeon would perform that immediately on a 21 year old. The pain is just too much some days and I struggle to hold it together. After yesterday and almost throwing up in the bathroom at work, I asked for the name of my coworkers sister's surgeon and I'm finally reaching out for help again from a surgeon yesterday and I'm scared for not only what they might find but that the doctor may not even be able to help me. I KNOW that this kind of pain isn't all in my head and I'm tied to my heating pad right now as I'm writing this. I feel as though I not only need support but advice for the consultation I will have with the surgeon, not only what to expect but advice. I'm starting to feel like this may be my last hope for a "normal life" and any advice would be greatly appreciated.

  1. I am so sorry you've experienced sexual assault and now you have to deal with your doctors dismissing you. It's unbelievable that this still happens. Your pain symptoms sound very similar to the ones I had in my late teens and 20s. I got diagnosed with endo at 24 after I met with a surgeon who'd operated on a friend of mine. He scheduled a laparoscopy after our first consultation β€” after other OB-GYNs just put me on ineffective birth control. In my late 30s, when my symptoms returned, I had to seek out an endometriosis specialist because my OB-GYN gave me the whole "just take antidepressants" thing. In both situations, my worst pain was coming from gobs of scar tissue. Surgery and pelvic floor physical therapy helped me feel better.

    Endo runs in families. So that should raise some alarm bells for doctors. My advice is to seek out someone who performs endo surgeries regularly. They'll know that an exploratory surgery is the only way to diagnose you. A pelvic floor physical therapist can also be a good resource. They'll help you learn to relax your body and pelvic floor. Most know how much sexual trauma can affect you.

    You can search -- www.icarebetter.com -- for an endo specialist. But I'll leave these articles with you in case they're helpful:

    (https://endometriosis.net/clinical/diagnostic-process)

    (https://endometriosis.net/living/find-doctor-specialist)

    - Keri (team member)

    1. I just wanted to chime in and also express how sorry I am that you have experienced sexual assault and now medical gaslighting. And I second 's words that I can't believe that it still happens. Keri gave you some really great advice and some awesome articles to check out. I wanted to reiterate that you have an entire community of support here for you that believes you, hears you, and understands you. It can be really frustrating sometimes to get the treatment you deserve and oftentimes, for endo warriors, means fighting for it and putting a lot of energy out there to get it done, so we're here for you for support, to give you some extra love and strength, and to be here if you just need to vent about how crappy it can all be sometimes. We got your back here. Just wanted to share that and share some love your way. Please keep us posted on how everything is going. Sending lots of love, Kayleigh, Endometriosis.net team πŸ’›πŸ’›πŸ’›

      1. I'm so sorry to hear your story of sexual assault compounded by this doctor not taking you seriously. Having a pelvic exam or ultrasound is uncomfortable at best, harder when you're in pain, and harder still with an experience of assault. An endo surgeon sounds like a good next step; you can also ask if that doctor has experience with Trauma-Informed Care, a practice to try to avoid re-traumatizing people who have been through sexual trauma. You can meet with the surgeon first (keep your clothes on), and only proceed to an exam if you feel comfortable enough. And if it helps, take someone with you to support you for the appointment.
        The links point

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