so this is a fairly small community compared to a lot of communities but I love that it is so specific! #GenitoPelvicPain tells me that you all have done your research and/or have finally got with a good doctor that’s narrowing down the source of your pain. It was so frustrating for me for years to deal with pelvic pain in a very specific spot on my left groin with no diagnosis other than #InterstitialCystitis which to me felt like a catch all #Diagnosis because it never made sense why my pain was only on my left side, not in my bladder actually, even though I did have the awful symptom of frequent urination. I also did feel burning but it was inside me, on my left side, and not when I peed. I tried all the usual prescribed painful invasive treatments for #ic but nothing helped. opioid pain medication and #heatpads and #hotbaths were my only relief. I didn’t stop trying to help myself even though I had a diagnosis finally, because like I said- that diagnosis just didn’t seem to fit me. Anyway, I will save the deets of my story for comments later if anyone has questions but the point I wanted to share with this group was that if you r having any genito-pelvic pain, try looking into the nerves in that area (wherever you’re pain is located). just start googling and search google images to try to find a pic of the nerve distribution in the pelvic area. that’s where I started. I was able to diagnose myself when I finally found a good diagram that clearly showed the course of the #genitofemoral nerve. it runs very closely with the #ilioinguinal nerves. The distribution of the genitofemoral nerve happened to be the EXACT distribution of my pain on my left side. skipping ahead again- I finally found a gyno doc who was able to write a script for me to see an #interventionalradiologist who then used a simple ultrasound on me and right there on the spot saw my problem & a #damagedgenitofemoralnerve . 2 appointments later I finally got the privilege of getting #genitofemoralnerveblock which is an injection of phenol right into your pain spot. Immediately I had complete relief after years of suffering & being #bedbound aLOT. Now the blocks don’t last forever but mine lasted a good 9 months before my pain came back full force so I am in the process of getting booked for another one as soon as they’ll schedule me. #NeverGiveUp ! I’m so glad I didn’t stop searching for answers & help even after my doctors tried to label my severe pain as #somaticpaindisorder my doc was shocked that the interventional radiologist found that #nerveinjury ,but that’s the thing- each doctor is only trained in THEIR 1 specialty. & even nerve docs did me wrong before so be strong & confident when you seek help. don’t let them inject your spinal cord with nerve blocks when your real problem might be coming from the direct spot of your pain because of a compressed or damaged #peripheralnerve . once my nerve calmed down thanks to that block, my peeing went back to normal too
I was diagnosed with #PelvicCongestionSyndrome on Jan. 7 of this year by a radiologist after an extremely painful IUD placement. Almost a year since diagnosis and I still don't have any answers. I was told shortly after my diagnosis to seek a doctor closer to my university that could help treat the PCS and seek out other things that could be causing my pain. The gynecologist I went to was terrible. She repeatedly told me that I was far too young to have PCS and it was probably all in my head anyway. That I was overly hormonal and just experiencing changes, and that it couldn't be true, since I hadn't had any kids (that is not a real thing, any of these you can have without having kids). She refused to do the laparoscopic procedure that was suggested by the other doctors until I started bringing "witnesses" to my appointments (3 months of appointments).
I was in surgery for less than 20 minutes and never got a diagnosis from it. She stated "it doesn't look like you have endometriosis, but you have adhesions and fibroids throughout your gut." She wouldn't see me after this and I can't find any record of me even having the surgery scheduled, let alone what the results were. She also refused to refer me to a doctor that specializes in these things.
Fast forward from April to now. I recently found out that this gynecologist and a couple of the doctors I saw while hospitalized this year have many malpractice suits against them. The charges? Negligence for ignoring patient diagnosis and concerns, leading to traumatic and serious health problems. Apparently my gynecologist is known for just keeping things to herself and misdiagnosing patients or completely missing the diseases to being with. Since I was still fairly new to this area when I started seeing her, I didn't know about all of this.
Now I'm worried. What if she missed my diagnosis or just lied to me because she wanted to be right? What do I do next? I can't find my records of ever even having the surgery, let alone the results. I'm frustrated and angry that this is even a possibility and I could be right back at square one.
Health Post: Long Caption/Story Below ￬
It’s been a year now. The picture on the left I have never shared with anyone prior to today. In the photo on the left I was 116 pounds with unmanaged chronic pain, working insane shift work, barely sleeping, & barely functioning. My pain got so bad I ended up so sick that I lost 56 pounds in just under 3 months!
I struggled with mental health for the first time & experienced crippling anxiety during this period of time. I lost a lot of people I cared very much about who did not understand what I was going through with my physical health & my new anxiety about my health. (I don’t blame others, it’s hard to understand at a young age unless you or someone you love has been through it).
Although a year later, things are not perfect. I am still not back to work but I’m making so much progress in learning to live with my chronic illness(es) and still be healthy and happy. I know I haven’t talked about my health much lately but with the change of seasons I feel like the three steps I’ve taken forward, I now feel like I’ve taken a step back. I’m not going to let this deter me however! Moral of this post: it gets better, it gets easier & healing is not linear or straightforward! Keep pushing 💕💪🏼
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