I like her. She didn’t dismiss me or try and convince me I was ‘okay’ when my body clearly is not okay. We spent an hour together.
She isn’t a gynecologist. I repeat. She isn’t a gynecologist. Dr. Hastings is a physical medicine doctor. She works with the mechanics…The bones and joints and muscles! And she said integrative medicine- ♥️
I have 6 things to do.
1. I need to find a physical therapist that can do a physical therapy mobilization of the SI joints. So, a chiropractor that can manipulate my SI joints. Honestly, after yesterday’s very simple and minimally invasive (she only touched my SI joints and I’m dying now. Ouch!) So the manipulation, while sounds like what I need: Also sounds painful. AF.
2. Hypnosis and EMDR. I have a lot of research to do on this. Dr. Hastings and I spoke about the constant fight or flight mode I feel like I’m in. And the sheer energy that PGAD brings to my body. She believes it needs be addressed on a psychiatric level. It bothers me that my body is so fucked up I have to try and retrain the system to separate pain from pleasure. And that not all stimulus should create energy. Early childhood sexual trauma looms in my brain like a big scary beast. While my mind was happy to forget, the body- the body never forgets that trauma. Honestly, I’m terrified of this. Doing this… mental poke around. I have to do a lot of research on this and it’s unlikely I’ll be signed up tomorrow.
3. Physical therapy check ups. At least monthly. It’s impossible for me to get to Melissa Buss every week, but maybe, once a month? I have to call her. If not, I have to get the husband to help me on a consistent basis and not just when I’m dying.
4. Rheumatology! Ah- she believes me. Auto immune exploration, here I come. Right after she finds me a doctor…Outside of Tucson. (Tucson Rheums are asshats!). I told her I can not doctor jump to find one that will help me or believe me… We spoke about Bechets Disease. The recurrent uveitis, mouth sores, scalp sores… she knows I need a good doctor but she recognized that what ever ‘it’ is, won’t be easy to find. She’s going to ask her community who they’d send their momma to. Then, maybe then, I’ll go.
5. Pelvic MRI- yes. I’ll finally be getting my MRI soon. She will do the special MRI where they look for signs of congestion and swelling and all the other things us PGAD suffers know about needing when we get an MRI. Of course, just any MRI won’t do for me! *wink*wink*
6. SI joint Injections. There it is. I’ll add two more injections to my treatment. Jesus.
It’ll be a flurry of activity when I get to Phoenix on the 17th. I’m not looking forward to this… I may call and cancel the bladder hydrodistension but if I do that, and the bladder flares, I’ll be screwed for three more months. I won’t do 400 units of Botox. I couldn’t walk the last time they did 400 units so I know I’ll ask for 300 units instead. Then the bilateral clitoral nerve blocks plus bilateral pudendal nerve blocks and now bilateral SI joint injections. What. The. How is this even possible or acceptable? It can’t be okay to be a human pincushion every 6 weeks for nerve blocks and every 3 months for Botox. There has to be an end goal after this.
I asked again about long term: interstims? but I don’t think she will focus there until all these other items are addressed or being processed.
Hastings wants me to consider gabapentin. Or another nerve pain medicine. We discussed being a MMJ patient and successfully getting off medication. The side effects of most I need now are worse than the supposed treatment. She promised not to make me go back on anything but wants me to consider it. More research to come.
I did talk to Dr. Hastings about the constant energy and no release and fight or flight mode being stuck in ON mode. The fact that I need something for hope. Some treatment options to hinge tomorrow on. Something to believe I’ll be okay. Otherwise, why live like this? Why live in a body that betrays you at every turn? One you can’t control. Can’t find release from. Can’t calm the energy? But-What about the pain? Fuck- I got that. I can handle the pain but the energy and hypersensitivity together are a no. Maybe, just maybe, it’s the COMBINATION of energy, hypersensitivity and the pain that are just too much to take! OR- Maybe I just can’t fucking keep it all together anymore and two mental break downs on top of constant pain in combination with the extreme hypersensitivity and unrelenting energy is just the combo to bring a giant down but here I am. Standing! Barely. But still standing.
PGAD men: Dr. Hastings is looking into permission to treat male PFD and PGAD patients.
I gave Dr. Hastings my blog. And invited her to join the Facebook group for PGAD sufferers. Not to electronically consult- just to watch. Pay attention to posts. Learn. And help recommend new PGAD sufferers to a community of like minded people.
I believe, eventually, if not after this next Botox that Dr. Hastings will take over my care. It makes sense… I don’t need Hibner’s excision surgeon skills to do Botox. He is so busy, he’s bumping procedures because women are needing him, desperate for surgery. He has to be available for excision. I’m not 100% sure I’ll be transferred to Hastings but it’s okay if I am. I say that with tears… Hibner has been my angel for a number of years. Hastings has the same potential. I believe neither will abandon me and both will team to help- no matter who manages my disease(s).
I don’t know how I feel about all this. So I’ll do my usual and start researching the pieces I need to know more about. It’ll take time to put it all together anyways.
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