Hysterectomy - Longer Recovery Due To Pots?

[Suzanne]

I am about to have a hysterectomy in 2 weeks and am concerned that my POTS symptoms will hinder my recovery. Has anyone had the procedure and recovered in the 6-8 week period? I am especially concerned that my BP will drop in hospital and the nurses will push me to walk etc. Is this unrealistic?

Thanks for any feedback.

[pastordari]

Walking will be encouraged. They are pretty intense about this due to its decreasing the incidence of blood clots.

I would discuss your fears with your MD and have him/her alter the orders for you due to POTS.'

I had surgery a couple of years ago and did fine. Blood pressure was not as much an issue for me then as it is now.

However, they only take your bp sitting or lying in bed . .. so they don't see the large drops that occur when standing.

You may need to ask them to take your bp while standing in order for them to listen to your complaints reasonably.

My doc was great at ordering the things I needed, like longer bed rest - just like half a day - different meds, etc.

You may want to get orders for some sort of anti-anxiety med in case the meds and being in bed or the hospital kicks in the anxiety/panic attack stuff. It tends to for me. My doc's believe me now and always order valium or something prn or continuiously while I'm in the hospital.

Good luck to you.

Dari

[Sophia3]

Hi

I had a laparascopic hysterectomy last Nov. Piece of cake! The anethesiologist asked a few questioins. there was a delay outside the OR as my surgeon had to deliver a baby...when I got up to go to the bathroom, my HR shot up of course and the anesthesiologist did an EKG on me...he was surprised I just lived with and had gotten used to living with high HR.

We discussed ANS issues and he said whatever happened with my BP they could fix. Another person who has had multiple spinal surgeries reminded me the ANS is what anesthesiologist know...that's what they work on in their work.

The worst thing for me was right after surgery, they took the catheter out within hours and i could not urinate easily...THAT was the scariest but it IS THE MOST COMMON ISSUE after abdominal surgery. If I could not pass enough urine, they were going to put the catheter back in...I had to pee in a hat in the toilet for the nurses to keep an eye on. At 4am after the surgery a nurse put an ultrasound on my bladder as I was still retaining urine. So I worked thru that but it took 4 days to be able to empty my bladder in one sitting without getting back to work on getting more out. I REALLY wish the doc would've warned me about that part MORE.

I knew it was likely but when it is your bladder, IT's A BIG DANGED DEAL! I also went to the Hyster Sisters web site and they were MOST HELPFUL during the recovery time.

I had little pain except for the laparascopic gas pain and was walking around within 24 hours. If you are being cut open, I am sure the recovery is longer. However MY INSIDES were still cut up and had to heal for 8 weeks before I could do anything like heavy lifting, or vaccuuming and exercise..the little I exercise. I think the rule of thumb is do not lift anything heavier than a gallon of milk.

i wish I would've had my partial hyst 10 years ago. I DO NOT MISS THE HORRIBLE MONTHLY MESS. I kept my cervix, my choice and had good faith in my surgeon.

I wish you the best.

I am going to send my surgeon a Happy Anniversary card next month to celebrate my uterus being gone!!

[dsdmom]

I had a laparascopic hysterectomy last year (not planned) and, unfortunately, it was the catalyst to all my POTS issues. However, I had also been put through two other surgeries within weeks of the hysterectomy so I am sure my body was just completely worn down. Recovery on anything laparoscopic is better than anything "open" but don't be fooled - it is still major surgery. Some people will tell you it was easy...you may be very lucky and have this experience, but in general, have realistic expectations going in. Just know that you're going to need extra time to heal. Laparascopic surgery is STILL surgery and is still a big deal (In my previous life I worked in the OR) for your body. I am sure everything will go fine, but just go into whatever surgery you are having expecting a long recovery and then hopefully you will be pleasantly surprised if/when it's shorter!

Just do what you can in the hospital - yes, walking is good, so try to push yourself as much as you can. But don't be bullied by the nurses or anybody else. YOU know your body best.

Good luck!

[Sophia3]

Just a side note, the recovery was easy compared to some surgeries.

I REALIZE it is still MAJOR surgery and that was DRILLED in my head. I acted and rested accordingly but honestly, I RARELY go out PERIOD so just rested like I always do.

HOWEVEr the docs office said some women feel so good after lap hyst, they go SHOPPING in a couple days and then call the office complaining they feel rotten. Duh. The BODY IS STILL HEALING INSIDE even with minimal EXTERNAL wounds.

I was not downplaying that at all and thought I made that clear in my earlier post. I was just expecting the worse and it was good.

For me the worst part was the diet and bowel cleaning prep before the surgery. The surgeon insist on clean bowel since it is so close to uterus. But I had a good surgeon and I think that makes all the difference in the world.

The nurse for him had worked for my late brother in law 17 years and she LOVES my surgeon so I took that under advisement as well. It took me 9 months to DECIDE on the hyst after having it explained to me in the spring and I was leaning toward an ablation. But did not like the SOUND of that deal.

Also, I KEPT my ovaries. Yanking them out can cause issues. I do not want to take estrogen so chose to keep mine and hope my body goes into menopause soon so I no longer have PMS or food cravings like chocolate.

[dsdmom]

Sophia,

I was not trying to say you were being insensitive - I just mean that I have heard people say that it was "so easy I went shopping the next day" (like you said) but in reality, it IS a big deal and those people just don't tell you that they actually didn't feel that great. So the rest of us are left thinking that there's something wrong with us when we don't feel good enough to go shopping the next day!

Suzanne, regardless of the type you have, just take it easy!!!

[Sophia3]

dsmom

I NEVER feel like going shopping and do well to get food from the grocery on quick runs!!

But still, I did great with the anesthesia and was expecting groggy and junk. I was lucky as it agreed with me and even put me in a good mood for three days. Then it was back to my usual brain fog that can be HORRIBLE some days.

Still, even if healthy, I can not imagine going shopping because I am aware of human anatomy and the shock the body goes thru and healing takes energy!!

Whether or not recovery is long for somebody depends on the individual as well. though when I had dental surgery a few years back I felt DREADFUL after waking up. Also I always warn that years ago I used to get sick and vomit after surgery and they give you stuff for that now as well.

SO NICE to wake up and not be sick!! Just tell the anesthesiologist as much as you can. If you have had reactions in the past, let them KNOW.

[ellen]

Suzanne- I had a total abdominal hysterectomy a few years ago and it was a PIECE OF CAKE. Maybe because I was so worried that I prepared so well. My PCP told me to take double dose of florinef that morning, so my bp was higher than usual.

I told the OR nurses I had POTS, and sure enough, my bp dropped when they gave me the IV. No problem, they lowered my head, gave me oxygen, and I came back to normal.

After the surgery, I asked the nurse if I could get up as soon as I got into my room, because I knew I would be made to walk anyway. My positive attitude made them cautious- instead of encouraging me to push myself, they wanted me to wait! (I also told them I have POTS).

Except for the catheter problem that Sophia mentioned, (urinating did not come easy!) recovery was simple. Be sure to eat (drink) the salty broth, tomato juice etc. Good luck, I hope you have as smooth a recovery as I did. The bonus is no more monthly period, no cramps, no PMS- no PROBLEMS!

[morgan617]

Suzanne, I had a hyst in 1986, long before they were laprosopic. I kept my ovaries, as I was 31 and felt I was too young to lose them. They found them covered in endometriosis, so that wasn't a great choice on my part, since I continued to have discomfort from that, but other than that, it was fine.

I was driving in 2 weeks and working full time again in 6 weeks, even though it was an abdominal surgery with the big incision. I never had the problems voiding. I was not as sick then as I am now, but I was definitely not healthy. I have never regretted my decision and wouldn't have, even if it had taken me longer to heal. It was so worth how much better I felt in the long run. Any doctor should tell you that it actually takes the body 6 months to totally heal, whether a surgery is laproscopic or wide open, and everyone heals at different rates.

I hope all goes smoothly for you and you perk up quickly and are back at your baseline soon. Just remember, it takes as long as it takes for each of us. Like anything else. good luck sweetie! morgan

[juliegee]

I was told I need a hysterectomy several years ago. My uterus was huge. I had a 10cm fibroid. I could barely poop or pee (sorry-gross!) I opted to do an embolization procedure. (Google uterine embolization to learn more.) My fibroid shrunk to less than 4cm within a few months. Being a potsie, I didn't have to deal with major surgery. And, best of all, I still have those parts, in case we really do need them for some unknown reason (other than babies). The procedure was pretty painless. I was sedated, but awake. I went home the next morning and was back to myself within days. Just thought I'd throw it out there as an alternative.

Julie

[pearsjon]

had mine in 2000 at age 30. had pots then and didn't know it. i had vaginal hysterectomy and did just fine. i had a baby 6 weeks prior to that. it was one of the greatest things ever. i had a little trouble "waking" up, though. now i know why,duh, pots. just did not know then. i had no prob urinating, i hate cahts and wanted it out ASAP. and wouldn't stop raising cain till they did take it out. i went within 2min. i agree with everyone to let anestheseologist know though. but i was one of those women who was up painting on a ladder 3 days later. i was sore, but able to handle it. of course even though they say pots is not progressive, i don't think i would be up that soon after surgery now. as i have been on a steady decline in symptoms for over 9yrs. i can;t do stuff now i did last year. so it is all relavent to you. just make sure everyone that comes in contact with you at hospital on day of surgery that you have pots an i think you will be fine.

[Sophia3]

WOW! no offense but I would not have gotten on a ladder THREE DAYS AFTER a major surgery. I can't get on a ladder NOW due to balance issues.

The INSIDES TAKE A LONG TIME TO HEAL as I and others have stated, especially Morgan. It's not like 'well I FELL FINE, body is normal,' My surgeon would've yelled at me if I did something like that. I called to ask if I could lie on floor and do isometric stomach exercises a couple weeks after the surgery. When the nurse called me back (left her a voice mail) the first thing she said when I answered the phone "ABSOLUTELY NOT"!! Then again, the doc or hospital did not give me SPECIFIC instructions but told me to take it EASY and no driving for a few days and no stair climbing at first, but we have none in the house.

Those internal incisions take TIME..and stepping or bending, lifting or pressing against abdomen could cause issues.

I am thankful you had no complications with your vaginal hyst but again, would ADVISE folks to REST their body. SURGERY is always a HUGE deal on the body even if we MENTALLY take it well.

Just my two coins though I have said enough on this topic.

[pearsjon]

in my defense i was only 30yrs old. i am not advocating my craziness for anyone. i am kinda of stubborn. my family would laugh at "kinda of".

YES THE BODY NEEDS REST AFTER ANY SURGERY.

i was just giving personal experience.

by the way i can't get on a ladder now either,stairs are hard.

[Suzanne]

Hi everyone, thanks for all the great feedback. I will be prepared for a slower recovery and will tell all that I have pots. At least medical profession seem to understand a bit about itl. Saw my physchiatrist yesterday and he said I will need double the time in hospital and a longer recovery due to pots and also due to ongoing battles with depression. Not sure if my surgeon will agree. I have been caught in the middle of doctors before, not nice. I am trying to focus on a positive outcome and it sounds like most of you don't regret it and your health has improved - in that department anyway. I am having trouble with my bladder now and have to self catheterise which is a right pain. I am hoping and praying that the bladder will function normally after the op. Such fun being a woman! PS: Is hanging out the clothes on the line outside too strenuous?

Thanks

[Sophia3]

Ask your doctor about hanging clothes on a clothes line..>i would say NO do not do that as bending to lift wet heavy clothes affects your INSIDE healing. Towels and jeans and stuff are HEAVY when wet. I could not even DO LAUNDRY.

Is yours a laparascopic hyst? either way, even if you do not have the outside cut, your innards are messed with.

If you are having bladder issues already, I take it your surgeon is well aware of this? Be prepared to need a catheter left in longer and to carefully measure what is coming out of you. Hospitals can put something to hang in the toilet to check this and in my case, brought a portable device to the bed to read urine left in bladder after I TRIED to empty it.

Best of luck to you far away and Down Under. Keep us update.