Health Organization for Pudendal Education

Hi everyone!
I'm new to the forum area of the website. I have used this site for a few years now but I never got involved because no one could give me a definite diagnosis until recently.
I've been on this journey for 18 years searching for answers to what seemed at the beginning to be a simple pain issue with few other symptoms and it was intermittent. Over the years it has grown, changed, and increased into something that now controls a good part of my life. I've been to over 35 different specialists and therapists all across Canada and the U.S. and I've had almost as many different opinions over the years. I've literally tried almost everything. I'm now functioning on fentanyl patches with THC (marajuana) pills and short acting OxyContin for pain spikes, and I have a heating pad everywhere I go.

I think the hardest part has been finally trying to come to terms with my diagnosis and realize that I will never be the same and that it's likely a downhill road. I am a wife and have 3 kids ages 11, 14, and nearly 16 and they have gotten used to having a sick mom which is hard for me to watch. I can only work part time and that's only because my job is super flexible about where and when I work - I can work from home anytime, and my hours/schedule is totally flexible as long as I put in 24 hours per week. I'm thankful for that because I'm able to work at night when I can't sleep or move my work if I feel too crappy. But I feel like I'm not even a whole person anymore when I look at how much I can't do anymore.

On top of having PN, with other components like hypersensitive nervous system, pelvic floor dysfunction, chronic fatigue, and PGAD, i also have a neck/back injury from a semi that hit me two years ago. So if I wasn't already in pain then, this sure has ensured that I am.

I'm so frustrated with life. I wanna do more. I am tired of being so tired from fighting pain everyday. Heck, I'd even be happy with a pain free bowel movement at this point! (Too much info?)

How do you all cope? How's do you get out of the cycle of accept, then don't accept and do everything to fix, then fail and accept, and back again?

Welcome to the forum, Vettegirl. Sorry you have been on this journey so long. I won't try to make any treatment suggestions since you say you've tried everything already and anyway you can get lots of ideas from reading the forum and website.

When it comes to the cycle of acceptance I think there is a difference between accepting but continuing to be proactive in seeking treatments, and just plain giving up. I guess the way I coped was by doing a lot of research into what the options were and coming up with a plan on what to do next. But sometimes you have to step back and take a rest from all of the doctor's visits, treatments, etc. It is so time consuming and expensive that it can drain you physically, emotionally, and financially. I think looking at it as taking a rest rather than giving up might be a good way to look at it.

Kids are resilient and as long as they know you love them that is what counts. Even if you are in bed, your teenagers can come and talk to you which may actually mean more quality time than having a mom who is always busy doing something.

You might want to consider buprenorphine as opposed to fentanyl because you are less likely to develop a tolerance. I know someone who uses it very successfully to take away PGAD symptoms. May be worth a try for you. Oops, I wasn't going to make any treatment suggestions. Oh well....

Sending some cyber hugs your way,

Violet

Thanks Violet!

You are absolutely right about the fact that all the treatments and Doctor visits are draining and I think you are on to something by looking at it as a break instead of "I quit". I think I'm possibly too hard on myself and I didn't allow myself to take a break - so it was either go all out or when that failed - do nothing. I like the idea of a break!

Yeah, kids are resilient but I hate the fact that mine have to be so independent and self-sufficient. I've spent the last 4 days in bed with a huge pain increase and today my 15 yr old daughter made dinner (again) and my youngest came and snuggled in bed for a few minutes while she told me about her homeschool work. It works but I just don't like it. I am however incredibly thankful for the fact that my kids are capable and responsible enough to help as much as they do.

Thanks for the positive light Violet!

Hi Vettegirl,

Sorry you are having a few rough days. Your children sound lovely -- you are very blessed in that regard.

Are you homeschooling your children? I can't imagine trying to homeschool very long with PGAD and PN. I homeschooled my kids up through high school but PGAD/PNE didn't hit until my youngest was a senior.

I understand not being able to make dinner because it was a huge challenge for me to even prepare a TV dinner on many days. At least your daughter knows how to cook which is great for a 15 y/o! I'm sure there must be a lot of sadness that goes along with not being able to be in the kitchen with her though.

Take care and keep your courage up.

Violet