Total Hysterectomy today. My history, experience, info and future edits.

Just got home a couple hours ago and want to write while it's fresh for those looking for insight. Periods started when I was 9, 8 days a month of the most painful, heavy, debilitating ​pain ever. Started getting bursting ovarian cysts in middle school and high school. Monthly pain was unbearable no matter what I tried.

This was in the 90s/early 2000s and endometriosis and PCOS were not words I ever heard or were talked about.

Started me on the pill at 17, tried both with and without the "sugar pill weeks", absolutely no change. Just 8 days of misery where I was in so much pain and insane bleeding it was just unlivable.

A friend suggested depo in my early 20s. 50/50 chance it would stop my periods completely or make me bleed non stop. I opted to give it a chance, and got lucky that my periods completely stopped. Still had some pain every month, but with no changing pads or tampons 10 times a day and not wanting to literally claw my uterus out, some pain was worth it.

But I did gain 100lbs and had a lot of hair thinning/loss.

2 years ago my primary suggested I stop the​ depo and try nexplanon instead because I had been on the depo so long, could not lost weight and was an emotional roller-coaster all the time. I again said heck let's give it try. It worked for a little over a year, but then my period came back with a vengeance. After 8 weeks of a non stop period, I said no more, has the nexplanon taken out and went back on depo the same day. Period stopped within 2 day. Back on the "it works/but its got its downside train".

I finally had enough. I was 38, never been pregnant, no children, not interested in dating or marrige after previous abusive relationships, ​​​​so I finally asked my doctor about ablation/hysterectomy.

She told me that an ablation wouldnt stop periods jusy sterilize me, and I would likely still experience pain and recurring cysts and a hysterectomy was really what I needed. She referred me to someone outside her network because she knew I was ready and she said if I tried to do it through her network (owned by Catholics) they would basically put me through a 2 year trial and even then it wouldnt be guaranteed.

I saw her referral, and he was awesome. He said I likely had endometriosis that was just never confirmed because of being on the birth control so long. He said the cysts wouldnt stop. And with a very high family history of uterine and ovarian cancer, he said he would recommend a hysterectomy and could schedule me right away. So that's what we did. Less than a 2 month wait. They also found cervical polyps during that ultrasound. Benign, but another sign it was the right thing to do.

One possible downside: if they couldn't confirm endometriosis etc, my insurance would only cover HRT for 2 years. So we ​decided on everything out, uterus, fallopian tunes, cervix, and only the ovaries if endometriosis was confirmed during surgery.

I had an ​awesome team doctors/nurses. Check in was easy, getting prepped was easy, anesthesiologist gave my some pre op anxiety meds, and then it was surgery time and lights out. Here is where it got rough. The nurse who scheduled my surgery and did all the pre op stuff with me said most women said they pain was a 3/4 when they woke up.

UTTER BULLSHIT lol. I woke up worst pain I have ever experienced, and I've been through some things. Ive also had unfortunate interactions where nurses/doctors did not believe my pain scale number or say I was over exaggerating so when they asked for my mumber, I said 4-5. Between my hyperventilating, blood pressure going nuts, tears and trembling, the nurse gave me​​ what she could, called down for another nurse to bring me to my recovery room, and I heard her sweetly whisper "she's saying a 4, but theres no way. This girl is in PAIN. Help her."

I was shocked because I had been expecting her to whisper "she crying and hammimg it up" because that had been ​some experiences before. This sweet male nurse came and got me, got me to my room and asked for my pain scale. I told him 4-5. He grabbed my hand, made me look him in the eyes and said "Tell me the truth". And through tears I said more like an 8. He looked at me again and said "I've been doing this 15 years. You're at a nine. You cant breathe. You're shaking. Your numbers are all over the place. You don't need to be afraid of being honest and I can tell you've had bad experiences in the past. This pain youre feeling is NOT okay and we are gonna fix it."

And he did. He got serious pain meds, sat with me held arm as walked me through some breathing exercises, got me water and chapstick, and got me some more anxiety meds when I found out they had taken my ovaries as well. ​Turns out they DID find endometriosis and more cervical polyps.

From the web:

"Endometriotic implants found in the cul-de-sac, bilateral uterosacral ligaments, and pelvic sidewalls indicate deep infiltrating endometriosis (DIE). This distribution involves critical retroperitoneal pelvic anatomy, frequently causing severe pelvic pain, painful intercourse, and organ adhesions."

I was both upset and relieved. Finally an explanation, frustration at not knowing this 20 years earlier, and relief that my insurance would cover HRT now, but also panicked at going through full menopause at 38. We got my pain down to an actual 2/3, I was able to pee, and my nurse stayed with me giving me a ton of book suggestions to listen to during my recovery.

So. My takeaways. Hysterectomies hurt way worse than people say they do. Don't be afraid to advocate for yourself if you are in pain because of bad prior experiences with nurses/doctors. A Hysterectomy is a MAJOR surgery and dont let anyone tell you different.

Drink lots of water/electrolytes the day before, and taking a fiber/magnesium drink the first week before surgery and when you get home will help with bowel movements. Get GasX and start it the day before and as soon as you get home. ​Cotton sheets and blankets you can easily add or move off the bed are helpful. Lots of pillows or wedges or a bed that tilts up or down (like a sleep number) is helpful. Peeing hasnt hurt, but I am still on pain meds. Which is where drinking a lot of water and having miralax or fibre or psyillum husk or magnesium is good to have on hand. Electrolytes and light meal.

I've had very little vaginal bleeding but did get myself some depends which was a really good idea. Thin and will keep from leaking on sheets. Get a bigger size so its not tight in your tummy. ​I also got some natural homeopathic stuff to help with mood/hot flashes, like Amberen, vitamin E and GABA/L-Theanine/5HTP to help with anxiety and mood. Some people recommend a peri bottle but I haven't felt need for one yet (theyre only like $6 on Amazon).

Mostly worried what my hormomes/emotions are going to be like the next few weeks, but I will make updates. Getting up and walking back forth often has helped with trapped gas and leg pain. When laying down, keeping me knees out flat on their sides with rhe soles of my feet pressed together has helped with both pressure and pain relief. A heating​​​​ pad and ice packs are both great. Just got my RX meds (bless my mom for running my errands) and they are estrogen, progesterone and another stool softener.

Honestly other than the unexpected pain when I woke up and surprise of the ovaries actually being taken out, it was not that bad of an experience. I'll updates on how things go, heal up, mood, feelings, and if theres anything I didnt/dont have that I wished I did or went and got it!

Thanks everyone!

Edit: Urinating is starting to burn/be painful, so next grocery run be will getting some extra strength Azo to see if that helps numb it.