Hi Everyone!

I'm on the waiting list to have a hysterectomy (should be about a 2-3 month wait) and would love to hear some suggestions/advice/experiences from those that have had a hysterectomy post-RSD.

My Pain Dr has said he'll give me a ketamine infusion (awake technique) while I'm in hospital for the hyst, which is great, but it takes about 3 days to get the infusion dosage to a pain relieving level (that's if it helps at all), so I'll need to do everything I can before then to keep my rsd symptoms in check.

I've already talked to one RSDer who had her hysterectomy post-RSD and didn't have any RSD dramas, which is great news, so I'm wondering if others are the same and if not, what was done to keep your rsd at bay during the operation and recovery? I'm having it done internally, with just small cuts for the laparascope, so thankfully there'll be no big abdominal cuts to get my nerves in a tizzy fit!

Thanks
x Kate

Are they doing a total hysterectomy?

I had my hysterectomy before RSD but the idiot Dr. left me one overy which turned out to be useless also. I had to have it removed after RSD along with scar tissue and thus has set me on a long journey with pelvic pain. I have dealt with pelvic pain since 2002, then had to have more scar tissue removed in 2004 and am worse off now. I have been in bed again for 2 days with this pelvic pain and leg pain.

I don't want to chalk it up to RSD yet but I am beginning to think that is a lot of my problem. I see another Dr. Wed to see what can be done for me.

It's good that they are going to do the ketamine to help but that may be only a temporary thing. God willing it won't be for you.

I would not want to go through more surgeries after the hysterectomy so I would suggest you make sure they do the complete job or you may run into more problems later on.

You don't have to have cuts to be in a tizzy girl. My vaginal area is in one on the inside. Sorry to get so graphic but it can set off nerve pain on the inside.

Good luck with it.

Ada

Hi Ada, they're leaving the ovaries, just taking the uterus and the cervix. I'm only 30 so I'm not keen on getting my ovaries out if there's nothing wrong with them. He's going to have a look at them though, and will take them out if needed. Hopefully that won't happen, all my problems come from my uterus (including my "18 days on, 5 days off" cycle that I've had for the past two years and my mum having endometrial cancer 3 years ago) so taking that out should make my life much more bearable.

I just want to make sure we do everything possible to limit pain.

I hope this new dr can help you with your pelvic pain

x Kate

Kate,
Is that your baby??? She is absolutely adorable, but then all your kids are.

Had my hysterctomy & ovarectomy before RSD. But did have major back surgery with a 3 level fusion in 2005. They used ketamine throughtout my whole surgery & I believe that it kept RSD from going into that surgical site. My PM Doctor worked with the spine surgeon & anesthesiologist. So maybe that is a thought. It did take me longer than normal to wake up, but they did not have any concerns about that at all. I normally wake from surgeries while still in recovery & remain awake. I didn't wake from surgery until around 10pm that night & I went into surgery ar 7am in the morning. I was in surgery between 4 to 6 hours. Can't remember which. They did take me from recovery to ICU, but only due to the fact I didn't wake up. I was breathing on my own though with no problems. I was surprised it took so long to wake from them using Ketamine. They didn't tell me ahead of time it would take me longer to wake up so I do think it was a bit of a surprise to them also but when I asked the surgeon about it he said they were not worried about me. They only took me to ICU so that I would be checked on alot, not that they were concerned or anything.

Good luck sweetie. I hope it all turns out good for you.

DebbyV

I was around 36 when I started having female problems. I started in 87 with an etopic pregnancy and never got better.

My PCP was talking to me about this today. He's been with me since around 91. By the time I found him I had had over 4 years of pelvic pain and no Drs. could find the answers. He tried to take me back in time to remember what I had gone through when I first came to him. He can remember a hell of a lot more then I can.

He's going to get the girls to go through my 4 part file and redo it and put the procedures that have been done on me in one area so he can try and help figure out what I am dealing with. He thinks I have had RSD all of this time in my lower half from the waist down. According to the procedures that were done on me at the U of C back then it's possible. They just didn't diagnose me or give me the diagnoses. He might be right about this.

I was surprised he still had my files. I thought after 7 years they got rid of them. I'm glad he hasn't.

I hope your hysterectomy goes ok. It's good that he is going to make sure that your ovaries are in good working order. I know you'd hate to lose it all but man, it would be better then them having to go back in again and again at any age.


Ada

My problem after my very early hysterectomy was adhesions. That is like you, I had an overy left in too. Only thing is, they cut me,removed my adhesions around 4 times, took the overy and again adhesions. You need this really checked out! It is VERY painful! lots of staples too, going straight down my tummy! Anyway, look into seeing if you have adhesions in there! ~Love, Diane.. Oh, they are using laser surgery now for this.

[COLOR="Blue"]Hi Kate!
Girl, you hang onto your overies as much as possible! You need these as, you do not want the problems of early menapause. If their bad, by all means, please do get them removed. I am no doctor, but as I was being wheeled down to surgery, a beautiful older nurse wispered in my ear and said, honey, don't let them remove your overies if they don't need too. And she went on to tell me, I could even function(NOt go into early menapause, even with one or a chunk of one(Of my overie-overies. Just ask lots of question's for your doc. first,write them down, so ya don't forget!! Good luck and I will be praying hard for you!! ~Love, DesiCOLOR]

hi cake

i'm not sure if this would be an option with your rsd, but have you looked into ablation?

here is link from webmd about it:
http://women.webmd.com/endometrial-ablation-16200

it's just the lining that is removed. no more bleeding.

there are many other sites that give more information.

Thanks Curious, but we've looked into that and its not really an option for me, partly because I have a tilted uterus and also because of my c-section scar- they've looked at the scar on the inside of the uterus and it's apparently not good enough for them to burn off 5mms of the uterus lining- too risky apparently. And when 50% of people end up either needing it done again or still needing a hysterectomy later, there wasn't much point in putiing myself through two procedures. Plus my mum had cancer of the uterus (endometrial cancer) a few years ago that luckily they caught early, so all in all this is the best way to go. Take the darn thing out! lol

I just want to make sure if we're going to do it, we're going to do it right and not take any chances with rsd pain etc!

Thanks for the thoughts



x Kate

Hello ladies.

I have been on and off this site for a while...I started with neck injury, then TOS and ended up with RSD. I am so glad to see others who have had babies post RSD. I have been wanting to have another child for the past three years. However, it has been three painful years and it looks like it's going to continue.

My question is...how did you decide to get pregnant AFTER being diagnosed with RSD. I have two boys, 5 and 3. I think I am still looking at this like, 'It's never gonna get better, just worse' How could I raise another baby if I can barely tie my kids shoes! But what about my other two kids? Will they suffer more because I decided to have another baby? Will they resent me later for bringing another life into this world when I am already so sick? I'm so lost.

Can anyone offer me thoughts on making this decision? I need a hug, and some help...