Health Organization for Pudendal Education

Hi all,

I wanted to start by thanking the team for the hardwork and dedication that goes into this website and all the members for sharing their stories and experiences. It was through this website that I was able to find some very helpful doctors.

I apologize in advance if this is a bit of a jumble. So far it has been 7 years living with PN. My symptoms started after a traumatic childbirth with complications - which also left me with a case of Post Traumatic Stress Disorder. I'm currently at a point where I'm feeling really low and isolated (again).

I've never been able to return to work full time - always putting in part time hour or less. I have had many times during flares in the past where I had to go down to something ridiculous like 2 hours a week - but due to the recent flare my healthcare team has had me go off work completely and has suggested I don't return at all to the line of work I was doing as it exacerbates my PTSD symptoms - which in turn exacerbate my PN symptoms. Prior to my injury I loved my job and I still have phenomenal coworkers and I'm feeling a deep sense of grief.

I've tried botox, pelvic physio, nerve blocks, too many medications to count, osteopathy, sex therapy, yoga therapy, and chiropractic care. Some have helped - some haven't - but I'm at the point where I am so sick of medical/rehab appointments. In the past seven years I have not gone longer than 2 weeks without some kind of appointment. I'm back in an intensive bit of appointments due to the current flare up. I desperately want a life outside of med/rehab appointments and pain.

I do have a doctor right now who is working to find a solution...but the process has been so slow moving and I'm feeling really frustrated. I think he fails to understand that the months of time in between appointments (due to scheduling on the hospital's side) are months and months of life that I'm losing to pain and depression.

Anyhow - long story short I could really use some hope right now - hence why I'm here

Hi Tara,

Welcome to the forum. I feel for you having to give up your job as I know having a job you love can really help your psyche. I remember too when I was going through treatment how it just became overwhelming trying to go to all of the appointments and then feeling like it was forever if I had to wait for an appointment. I can really relate to your emotions.

So, which treatments do you feel were helpful to you and what are your treatment options in Canada right now? It's really an individual choice as to whether you want to pursue conservative treatments or more aggressive treatments but there are still a number of treatment options you can try. Have you had a chance to talk with your doctor about how agonizing it is to wait so long for treatments? It may be his hands are tied if there just aren't enough healthcare providers to keep up with the demand but maybe he could help expedite your treatment. I don't know if you would able to travel to the US for more timely treatment.

There was a time I thought I would never get better so I know how hopeless it feels, but eventually with the right treatments I did get much better and I know so many other people who have gotten better too. So I think there is hope for you if you can just find the right treatment. Please stay strong and keep fighting. You are your own best advocate and you can do this.

Violet

Hi Violet - Thank you for your response.

In terms of "alternative" methods I'd say yoga therapy was key. Unfortunately with the work situation I don't have the funds for it right now - but I have my binder of homework that I previously used so I'm going to break that out and re-visit it.

In terms of more traditional medical treatments Tramadol and Cessamet were amazing for the pain - but the side effects weren't tolerable.

I had a consultation with Dr. Conway and he recommended Decompression surgery - but the downtime just isn't doable for me/my family right now.

I have another appointment with Dr. Lemos coming up - he didn't really get into it at our last appointment - but was saying something about a catheter to deliver a continuous nerve block - I'm wondering if this the intrathecal pain pump?

I think I'm at the point where I'm ready to try something more aggressive..I really really really want to work again.

From what I understand the doctors hands are tied regarding scheduling - and he has sped things up when he had the opportunity to.

Thank you for sharing your story - it helps to know you've been where I am and have managed to start living again!

Hi Tara,

I'm not sure what type of catheter he is referring to. It could be a temporary epidural or intrathecal pain pump but it could also be a temporary catheter near the peripheral pudendal nerve that delivers anesthetic to that area. Some doctors use them to decrease pain temporarily after surgery. Can't remember -- Dr. Bautrant might have described it in his publication.

Violet

Hi Tara,

That does sound difficult. And it sounds like you've done a lot experimenting with treatments and drugs. I was pleased last year when I finally broke down and decided to experiment with medications in the hopes of becoming more functional (for me that meant going without ice, which was damaging my skin and difficult to maintain), and I'm grateful I did that, because they do allow me to be highly functional. It's not a great long term solution (I'm worried about my memory), but for now it's given me hope. I've found that the combination of tramadol (just 50 mg a day), nortriptyline, gabapentin (I was on Gralise (extended release version of gabapentin), but my insurance company is making me test the much cheaper gabapentin right now), and torlterodine (for bladder frequency) has worked fairly well. Each person probably has to experiment a little with different medications, but if you feel like you haven't exhausted all your options, you could do a little experimenting in the hopes of gaining more functionality while you figure out what treatments to consider.

Thanks for posting and keep us updated.

April

Violet M wrote: Dr. Bautrant might have described it in his publication.

Bautrant describes a tunnelized catheter into alcock's canal to deliver analgesia post-op. It's in the following article under post-surgery follow-up.

http://www.pudendalhope.info/sites/defa ... utrant.pdf

I think some of Dr. Hibner's patients have had a similar catheter placed for delivery of analgesic medication post-op.

Violet

Hello,
Newbie here from Nepal...

Welcome to the forum Neosphere..from beautiful Nepal
It takes a while to read all the feeds and find all the info you may need, but I am sure
you will be blessed by the site and all the amazing members that reach out to help.
Just saying HELLO back
Sadie

Hi, Tara. I
just posted a few minutes ago after a few years away. I've had PN for 5 years. Your journey sounds so familiar. I'm amazed. I too am reaching out. Life is too hard to do on your own. Although I know I'm loved by friends and family, there seems to necessarily be an aloneness in debilitating chronic pain.

Thanks for reaching out. Keep the faith.

Warm regards,
faithwalker

Too funny faithwalker - I just posted on your thread

As for an update here - I had a meeting with one of my specialists - the current plan sounds like an intrathecal pump I think? He said they are looking at laproscopically placing a catheter by the pudendal nerve and then hooking it up to a pain pump. They are still trying to work out the plan and funding issues as the device is prohibitively expensive and not covered by our provincial health insurance. I'll be sure to update once I know more about the plan and any feedback about the outcome if it goes ahead.