RSD and Hysterectomy
 

Hi Everyone! :p

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! :wink:

Thanks
x Kate

Hi 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

Hi Kate,
 

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

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...:hug:

Hi Dianna

I totally understand how you feel. It is a very hard decision.

Here's how it was with me-

When my rsd first started, Bailey was almost three and Olivia was 7 months old. It started in Nov 2000 and I was diagnosed in March 01. After a bit of playing around with medications for a few months I was able to keep my pain levels in check. My rsd at that point only affected my right arm (up to t-shirt sleeve level) and my right hand.

At one appt with my pain dr in mid 2001, we asked what would happen if the meds no longer helped (I was only on tramal at that point). He said the next stop would be methadone, and once we go down that road, it would be unlikely I could go back to no medications in order to fall pregnant. So we made the decision to stop the tramal right then and try and have another baby. It was probably a very naive decision, but we felt it was "now or never" and we desperately wanted more than two kids, so we went for it!

Thankfully I fell pregnant within a couple of months and although the pain levels were high at first, by about the 10 week mark they'd eased right off and I basically had a "remission" of symptoms for the whole pregnancy- only having pain again in the last couple of weeks as the fluid levels caused problems and little Mr went 10 days overdue :mad: He was born in June 2002.

The pain came back within a couple of hours of his birth so I decided to bottlefeed so I could go back on my meds and be a better mother to the three kids. I adapted everything so I could do it all with just my left arm/hand and had plenty of help at home. But I did have some movement and strength in my hand- I could do buttons up and scoop formula and dry him after a bath etc.

But we thought that would be it, as my rsd got worse over time and we both had to accept that even if we wanted four kids (we're both from four kid families) that it wasn't for us and to be glad we had three beautiful kids.

Jump forward to 2004 and 2005 and thanks to successful ketamine infusions, I started having good periods of time without any pain, so the whole baby option was possible again. We decided after my second infusion to try for a baby- if it happened it happened, if it didn't then it wasn't meant to be. I fell pregnant with Hannah when I was in my sixth month of pain relief (highest pain levels were about 4/10 only every now and then, mostly I had nothing).

Amazingly I got 10 months of pain relief from that infusion, but it all came crashing down when I injured my right leg and the rsd spread there, and reignited my arm, too. After that the pain was a nightmare and I was stuck on little to no meds!

Although I don't regret having Hannah at all, if I would have known going into the pregnancy that I would have the rsd travel to my leg, I wouldn't have gone through with it. And also for me, if I had rsd in both hands, I wouldn't have had any more babies. It's just too hard. The physical logistics are draining. You can look after a baby one handed, but try changing the bum of a toddler that doesn't want to be changed and you've only got one arm to hold them still and change them at the same time! The newborn stage isn't so bad, its the big wriggling toddler that pushes your skills!

But of course this is just my experience and opinion for myself, that I wouldn't do it with my rsd in more than one limb. Everyone is different and everyone's rsd is different.

It's also worth noting that my husband has been home as full time carer for me and the kids since Dayne was about nine months old, as I just couldn't do it on my own. So although I could sit and feed Hannah her bottle etc, its very hard to move a baby here and there when you can't walk without crutches. I had to rely on Matt to do all of the physical things, even just getting her in and out of the cot. Although I was clever and fixed a stroller drink holder to my crutch so I could carry a bottle from the kitchen :wink:

But I think having Hannah and Dayne has been a huge ego boost for me, if you know what I mean! It's like sticking your fingers up at rsd and saying "ha ha I did it regardless of you!" lol :D and the joy I get from my kids is amazing. They are my motivation to keep going. I don't regret having them at all, its hard but its soooo worth it! And my older girls are very happy kids. They help out a lot, but that's just in their nature, it's not because they HAVE to help.

If it wasn't for the ketamine success I wouldn't have had Hannah. And we did talk about it a lot with my pain dr before it happened, and he worked with my Ob dr in regards to the birth etc (I had a c/section), so there's a lot to weigh up and consider before deciding which way to go.

I hope I've answered some of your questions. Of course everyone is different, you need to work out if you can manage without your meds, or if your meds are safe during pregnancy as not everyone gets a remission of symptoms during the pregnancy, and you need to make sure your hubby is totally with you on this, as the chances are they'll be doing a lot of the work while you're pregnant and afterwards.

I hope you do go for it, a few members here have had babies post-rsd and they're all very proud of themselves for doing it, and will probably come in here and tell you their experiences. There's also another recent thread on this so try searching for that and see what others have posted there.

Good luck!

x Kate

Hi Kate,

I was supposed to have a Hyst 2 years ago, but put it off bc somthing just told me to wait adn try and have at least one kid of my own..but time is running out... any ways.. MY PM doc told me in order to keep my RSD at my current level was to have an epidural for the anesthisia. Bc the epidural blocks the pain signals from reaching the brain and in that way it will not trigger the RSD to spread or get worse. My OB said i can have both the epidural and general anesthisia if i didnt want to be awake during the procedure, but i could also be awake and be less groggy afterwards and get outta the hosp sooner too!!

say hi to the kids for my , the little one is getting sooo big!! time flys!!

Amber

Hysterectomy & RSD
 

I am the president of a non-profit women's health education organization, the HERS Foundation. HERS has counseled over 850,000 women. Many of the women who contact HERS have developed RSD after hysterectomy and those women who had it prior to the surgery often found that the surgery exacerbated it. You can find information about the percentage of women with RSD who report that it is worsened, the same, or better after hysterectomy you can read the Adverse Effects Data by visiting the HERS Foundation website.

Thank you for that information. I do know someone who got RSD after her Hysterectomy but she has conquered it with a single Ketamine infusion. Hers was after the delivery of her third baby due to losing a lot of blood so she had a newborn at home.:(

I think that the chances of having a flare up will be decreased if the doctors are aware and willing to take precautions like running Ketamine or having an epidural for a couple of days after the Hysterectomy.

Cake, perhaps your surgeon might contact your Pain Management doctor to get his advice for special precautions for you.
Good luck for the future
Tayla:hug:

Ada,
I want to learn more about your pelvic pain. I have pelvic pain since 2004 due to pudendal nerve problem. I had developed RSD from IV trauma last year. I have put off surgery to release the pudendal nerve due to the RSD. However, i have been thinking about the surgey. Of course, i am very worried about the possibility of having RSD spread to the pelvic area and or getting worse. So What are you planning to do with your pelvic pain/
Numb

Re: HERS Foundation

Thanks for the link but I found nothing positive or even neutral on your website regarding hysterectomies. It is all negative, very biased and I believe it is designed to scare people away with all the "facts", even though many of these facts have been disproven in studies that are freely available to be read online. If I am wrong here than I apologise but I'm just going by what I saw and read on the website.

I have been doing a lot of research and it has taken me six months to make this decision and now I am happy that for me this is the best decision, even though I have RSD and may have complications afterwards. I started this thread to get information from other RSDers who have gone through this procedure and to get info about limiting pain etc.

Oh, and I think the word "castration" in reference to a hysterectomy is totally over the top and would offend many women. You are adding to the idea that women are not women once they have a hysterectomy. And the majority of the women who have commented on your website did not spend a lot of time researching the procedure and their options before having their hysterectomies, many of them just went with what their doctor suggested and read a panphlet they were given at their pre-op appointment. Obviously anyone who goes into this without enough study and research and testing (in regards to whether other procedures are better for them) are asking to be shocked at the results or to regret the decision later. And 50% of women had suicidal thoughts afterwards? That can't be accurate. Just within my social network I've talked with about 10 women who've had hysterectomies and ALL of them have been happy with the results since day one, so that blows your "50% have suicidal thoughts" theory

And in the time I've just spent searching your website, I am yet to find any mention of RSD before or after hysterectomies.

Thanks to everyone else who replied. :p

I should have read this stuff from The HERS foundation before I gave thanks for the article.:eek:
I do know someone who did get RSD post Hyster but I know and have looked after hundreds who did not get RSD
Cake, this article is nothing short of propaganda from a 'non-profit' organisation which needs to do a LOT more research.
'CASTRATION" what the-----:confused::confused:Most women do not have their ovaries removed unless there is a malignancy so this makes the use of this word pure scare tactic.:mad:

Although I have yet to have a Hysterectomy, I would have one in a heartbeat if it was warranted. You have made a well informed decision Cake and I am sure you will recover very well, especially if you can get your pain team involved in your pre and post op management.
Good luck for your surgery
Tayla:hug:

Thank you Tayla :hug:

My Pain Management Dr is going to be involved and will run a ketamine infusion afterwards, so hopefully that will be enough to keep the rsd at bay.

Whereabouts in Australia are you Tayla? I'm in Newcastle and am very lucky to have a great pain team here.

Take care

x Kate

Cake,
I am on the Mornington Peninsula Victoria, I am managed by Dr Murray Tavener from Frankston.
I am fortunate to have quite a choice around here or within an hours drive away. I meet at a Pain Management group that combines people from all over Melbourne, mainly Eastern and Sth Eastern suburbs and have met quite a few people (mainly women) with RSD.
Who do you see up there? One of the people from our group has come from up there and was seeing someone she did not like at all but after reading your post I don't think it can be the same person.
I think his name was Russo?
Good luck with your Hysterectomy, are you having an Abdominal one?

Tayla:hug:

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 :hug:

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

Hi Cake,
 

It sounds like you will do ok since you are having the ketamine treatments. That might help keep the RSD from going to that area.

The hospital I had mine done in didn't do blocks. They still don't. They are far behind times. I only go there if I have to since it's near me.

As I told you, they only took one of my ovaries at the first surgery and then a few years later the other one had to be taken out anyway. I went to sleep thinking the first time would do it. I just had too much wrong in there and then they leave an ovary that the Dr. said wasn't any good in the first place.

A person does what they have to do to get better. You know this is what you need and you are a very strong person and will be ok with that decision.

Ada

yeah...my hopes for it were dashed for the same reason.

i did have a vaginal delivery after my c-section, but the ob/gyn i consulted felt with my uterous being so tipped ( even made the comment on wondering how i got pregnant so many times. :wink:) and the c-section, i would probably end up still bleeding. darn huh?

are you opting for a vaginal hystorectmy or classic c-section type of insision?

sending you prayers hon. :hug:

Nah, it'll be internally done to minimise any nerve trauma :-)