Health Organization for Pudendal Education

Faith, you come to mind because I think you have a toddler. I am raising (or at least, trying) two children, ages 2 and 1, and just wondering how you all are managing. From the look of Dr. Conway's postop instructions that someone posted, there is very restrictive lifing for 12 months. That leaves surgery out as an option for me. Any encouraging words appreciated.

cari

My children are adults now but I know one mom, even before surgery, had to hire a sitter to help during the day. I don't know what your finances are like but maybe if you could get some help, at least for the first 3-4 months you could think about surgery. If money is too tight, if you attend a church, let them know your needs maybe some of the stay at home mom's or retirees could divide up days and time slots to help you out for a while. A local school teacher I met had triplets and I know between her job and the church they provided round the clock help with the triplets and the little ones already at home for 6 months, all for free. Once you make a decision about surgery or are seriously thinking about start talking with friends, family, church, local Lion's club, girl scouts, local retirement community center, etc to see what you might be able to coordinate. Maybe think about having the surgery right at the beginning of the summer when school is out that way you could get a high school kid or college kid to come help you all summer, at least that would give you 2-3 months. Just thinking off the top of my head. I'm sure those with toddlers at home will have many other suggestions.

Hi Carolynm,

I am so sorry for your situation. It must be so hard having a 1 and 2 year old. Like Nyt my children are grown, but I live in a rural area which i moved to before pn and now regret it because you need to drive for everything. My husband is not young anymore and I worry if something happened to him how would I cope. All I'm trying to say carolynm is sometimes we worry too much about how things are going to work out if and when. Somehow they usually do.
nyt had some wonderful suggestions, I wish I had something useful to add. Are you sure you have an entrapment? If not maybe it will get better on its own, and you will not need surgery.
Please keep us posted. I have read your posts before, and knew you had little ones and I think of you often.

I had an unrelated surgery (recovery not as restrictive) when my daughter was 18 months, and my Mom came in to help me for 2 -3 weeks. I know you would need more help than that for PNE surgery but I have been concerned when I have read your comments in other threads that "surgery is not an option" because of the little ones. Find a way. The reasons I think you shouldn't wait for your kids to get older are twofold: 1st, in many cases PN symptoms get worse and worse the longer they are left untreated. At my worst I developed neurogenic bladder and couldn't walk around for more than a couple of minutes without going incontinent, but also could not wear a diaper because of PNE discomfort...once you get that bad you aren't much help to your kids no matter what their ages. 2nd, there is never really a good age. When the children get older there is often a lot of driving involved (or if you live in a very urban area, walking and escorting on public transportation). I have spent the last 4 years driving 2 hours per day because my kids' school is 1/2 hour away. That is great for the pudendal nerve (not)! This year I will be getting tarlov cyst surgery so Thank God the school just introduced a bus route and I only have to bring them around the corner. Otherwise I would have had to delay surgery an extra 6 months until summer break, and my kids would have had to spend the summer sitting home watching me recover. I had a friend who had a difficult, "surprise" 3rd pregnancy when she had 2 little ones same ages as yours, and she raided her 401-K to hire a nanny to live in for awhile. I do think you need to pull out all the stops to get this done if surgery is diagnostically indicated, couple of ideas depending on your situation:
-If you have parents or other close relatives who are willing to help but they are not close geographically, consider moving yourself and your kids in with them for your recovery period.
-If you have the savings, the credit to go into debt, or relatives willing to contribute money, discuss with your husband whether it is better to take an economic hit by having a nanny in the house or by having him take Family Medical Leave, and go for it.
I don't know the particulars of your situation but if you stop saying surgery is not an option and start saying surgery is not optional, you can probably find a way to make it work.

Thank you so much ladies...I'm in so much pain today after a 12 hr shift that I can't think rationally anymore. The pain takes over everything.
Appt with Hibner--couldn't get in until Feb 2012. MRI later this month.

love to you all
cari

carolynm wrote:Thank you so much ladies...I'm in so much pain today after a 12 hr shift that I can't think rationally anymore. The pain takes over everything.
Appt with Hibner--couldn't get in until Feb 2012. MRI later this month.

love to you all
cari

Cari,

I already mentioned a little on another thread, but I am very blessed to have my parents (and all my extended family on one side) in my current town. It's rural and healthcare is not what I'd like (or entertainment for that matter ) but we feel we cannot leave because of my family's support. Our church is a huge blessing too. I've already talked to some of the girls in my Sunday School class and was saying, I don't know what I will do if I have to have this surgery. They said they would all be there taking shifts to help us. Would it be possible to send your kiddos to preschool/daycare for like 6 months to get you on your feet? Or at least one of them? I know that would be hard probably an in-home babysitter/nanny would be preferable, but you have to take care of yourself. Her Majesty is right, PN will only get worse (if it is a true entrapment), that's why I am not playing around with this any more. I either have PNE or SI joint laxity causing my PN symptoms (which I am doubtful of because the PN symptoms started way before the SIJD issues and my symptoms are not like others I have talked to with SI laxity), but either way I am going to probably need decompression surgery or an SI joint fusion for the SI laxity (as all other conservative measures for that have failed too) which is another huge surgery. Hopefully in the next year I will have an answer to that question. We are young and we could possibly have a lot of years ahead of us so we still have a lot of time with our babies. There is hope that we could get better and enjoy their childhood/teenage years. Be able to attend sports events, travel, go on field trips, etc. That's my hope at least. Are you still working 12 hours as a nurse? Is there any way you can back off to 8's? The 12 hours is really hard...I stopped when I got really bad last fall. I only work 8's now (one day a week), but it's still really hard.