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 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

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 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

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

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.

I should have read this stuff from The HERS foundation before I gave thanks for the article.
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-----Most women do not have their ovaries removed unless there is a malignancy so this makes the use of this word pure scare tactic.

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

Thank you Tayla

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