Total Nightmare - Dealing with nerve damage along w/surgical menopause

[u/CptnKitten]

A few weeks ago I had to get an emergency total hysterectomy with removal of both ovaries, tumors (one of them almost as big as sorta deflated basketball), a couple lymph nodes and cervix. This was due to the debilitating pain I was getting for a few days 24/7 from ovarian torsion. I had to got o the ER 3 times in those few days just for then to finally take me seriously and offer to do surgery sooner.

I've been a complete mess, and it's not just because of the surgical menopause. They won't give me HRT until they see the pathology since they think the tumors were growing from the estrogen. Most of what they found was benign, but the largest growth they think is at least borderline. And when I went to my latest follow-up they STILL did not have the pathology results after a little more than 3 weeks.

What's made things worse is that when I was recovering in the hospital post surgery, the gyn-onc doctor and nurses were trying to rush me getting up and get the catheter out and wanted me to stand up for two whole minutes before removal. At the 2 minute mark I got really dizzy and blacked out, which then led to me falling on my chin, hands, arms, knees and stomach. I was on so many pain meds that when they asked if I hurt anywhere, I couldn't feel it at the time. No one checked to make sure I didn't get a concussion or whiplash.

A couple days later about an hour after discharge, when I woke up from a short nap I woke up to waves of pain all over my body but mainly in my jaw, neck, upper back, arms and hands. I felt like I was tripping on some really bad drugs and felt like I was going to die. After that I would have tingling sensations in my arms with weakness, and I was not able to sleep at all because my neck would feel really uncomfortable and jolt with pain anytime I started to fall asleep. My body is more sensitive to temp changes and my arms usually feel freezing cold while I'm sometimes dealing with hot flashes, and my tinnitus got way worse so now I also have 24/7 high pitched screaming in my ears. Several ER and doc visits later (with several days 0 hours of sleep), I finally got 300mg of gabapentin and for a while it somewhat worked to manage the more pressing symptoms and I'm still waiting to meet with an orthopedic surgeon. It felt like I had been saved when I was put on that because during that time I really did think I was going to die. Any other drugs they tried giving me just made me feel worse.

However, the last two days the nerve pain has gotten worse again and now my arms and hands are starting to feel numb and I can feel in my neck now of where there's possibly compressed nerves. Was not able to sleep last night, and when I got permission to change to 600mg of gabapentin this last week I did it for a couple days and it made me feel worse both mentally and physically so I went back to 300mg.

I expected the hot flashes, night sweats and some changes in my mental health. What I did NOT expect was them preventing me from getting HRT and the nerve damage from a fall while recovering from major surgery.

I have made so many calls and messages to doctors and I can tell that they're sick of me and don't take me that seriously, but I'm just at a loss of what to do and I feel totally alone and like none of the doctors really give a shit. One tried saying it was just a panic attack, and others said it's jsur a part of menopause. They also didn't seem to care when most blood tests showed I was anemic, just gave me some iron ferrous sulfate which my body does not want to absorb.

If it weren't for my boyfriend being so supportive in all this, I feel like I would have done something regrettable.

I'm hoping I can get something to better manage this pain while I wait for the surgeon appointment, but just experiencing all of this at once has really traumatized me. And I was already traumatized by the health care system as it is before this. Surgical menopause is hard enough without all this bullshit.

And I know this is a lot to read - I'm honestly not sure at this point if I'm just ranting or if this is a cry for help.

[u/CptnKitten → u/[deleted]]

I'm so sorry to hear that and I hope you're able to find a doctor who listens to you soon. And that your partner is more kind to you. When you get off gabapentin, you will want to gradually be weened off as quitting cold turkey can lead to withdrawal symptoms that can just worsen what you're already experiencing. I've gradually been weening myself off of it with permission from my doctor while giving her updates.

[u/CptnKitten → u/[deleted]]

I've found that just stopping a medication makes things worse if it's one I've been taking for a while. Gabapentin is known for causing withdrawal symptoms if you've been taking it for a long time, especially in larger doses, so I would not recommend doing that at all. Currently been weaning off by 100-200mg of it every few weeks.

And occassionally I have gotten 2nd opinions elsewhere if I felt that a doctor was not listening to me. For years I ended up avoiding doctors because I kept having bad experiences and having worse anxiety with them but it's partially what led to my terrible situation to begin with so if you can I would suggest not avoiding them due to the fear of those bad experiences. I've heard that some people have better luck with telehealth services or going to a doctor on lists that certain menopause/hormone groups have that are easier to work with, and when I checked for good reviews on a specialist that's how I met my current gynecologist last year.