Hello from Vancouver

[White Falcon]

Hi to everyone. It's nice to have this board, as I don't know anyone personally who has issues like mine.
My problem started as painful sex early in life. I had a severe yeast infection (after taking antibiotics for bronchitis) when I was 17, serious enough to be hospitalized and catheterized for 5 days.

Things have never been really right since, but pain was intermittent, and limited to intercourse some of the time. Things got slowly worse over the years. In 2000, age 37, I was finally diagnosed with vulvodynia (a wastebasket diagnosis in my opinion). Intercourse was usually painful and I couldn't wear tight pants. But I had no problems sitting, walking, or standing. Basically, as long as I didn't provoke the area, I was okay.

Three years ago, I was diagnosed with an inflammatory disease caused by systemic bacterial infection (Lyme and other co-infections, as per CDC lab results). I started long-term antibiotic therapy and quickly had a major flare-up of vaginal pain. Under this treatment protocol, this is considered a reaction that shows the immune system is killing off microbes, and it will get better. After a miserable few months, it did resolve, and things were pretty good, until the next increase and change in the antibiotic regimen. Another flare-up, and another resolution during which I had no genital pain whatsover, not even with intercourse. The third flare-up started in Sept. 2009, and has never ended. Now I'm told that I have permanent nerve pain. I can't sit at all, and standing/walking is very limited too. I'm on long-term disability, spend 90% of my time lying down, and am trying to keep a positive attitude although it really sucks. It's so embarrassing, too, as if constant pain weren't bad enough... But you guys know that.

I live in the Greater Vancouver Area, home to the first Multidisciplinary Vulvodynia Program (MVP) at Vancouver General Hospital. I think for women, PN and vulvodynia are often treated the same. When I was referred to the MVP last year, I was refused treatment because my pain is constant. They only treat provoked pain. Can you believe it? Basically, my condition is too far gone for them to help me! You would think that such a program would be for those worst affected. But no. In a way, my pain is provoked; it's just provoked by getting out of bed! So those lucky ladies who only have painful sex get treatment, but I can just suffer in total disability. I think I am going to write a letter of complaint to the Minister of Health. I went to see a physio/OT who specializes in vag pain, and her "assessment" which involved inserting finger(s) and poking around, caused me even more pain. She was the one who suggested pudendal neuralgia, as she felt that the nerve was under tension and was forming nodules. She was not able to reduce my pain, and suggested a nerve block. She also thought maybe endometriosis was possibly contributing to inflammation and putting pressure on the nerve.

So I had a CT-guided nerve block April 2010 at UBC Hospital. Horrible experience and took pain to new heights. It took about 6 months for the pain to subside to pre-block levels. Then I had a laprascopic supracervical hysterectomy and removal of endo in July 2010. The catheter to my bladder caused a new source of pain that still bothers me. But at least I don't have horrendous periods anymore. The abdominal aches and pain are much better, but pudendal/vulvar pain is unchanged.

So, thanks for reading this. I'm now starting to accept that this may be a permanent state of affairs, and am focussed on improving my functioning by accessing assistive devices, such as a reclining wheelchair and Roho cushion. I already have a zero gravity recliner and tilt table so I can type lying down. I plan to try intravenous treatments aimed at reducing inflammation, pain, and infection. I also plan to start massage therapy to reduce muscle spasms in the obturators and levator ani, etc. (No internal work!) I am thinking about trigger point injections and neural accupuncture, too. Can't find anyone locally who does botox. The wheelchair will give me access to handicapped public transit (Handy-Dart) so that I can actually get to these appointments. I'm hoping that I can improve. I'm looking forward to reading about everyone else's experiences.

[christi]

Hi White Falcon,

I'm so sorry to hear of your situation. This sucks!
I too cannot sit for long. Actually, I didn't sit at all for 10 months, hoping that would help the nerve heal. I don't know whether or not it worked, but these days I've been driving the very short 3-minute drive to a local supermarket. It's astonishing how empowering it is to do one's own grocery shopping! In the past I wouldn't have been able to stand still long enough to check out through the register, but lately I can handle it as long as the line is very short.

My days are mostly spent lying flat. But I've learned that taking a brisk walk is helpful, as long as I move fairly fast. Slow walks create too much pain. Swimming also works for me.
--Christi

[Lernica]

Welcome, White Falcon! And welcome too, Christi! I'm so sorry to hear what you've been through, and hopeful that you will find some competent medical care soon. This forum is a great resource for ideas to manage PN and pain, and to share our stories (both good and bad). Most of us have great difficulty sitting even a few minutes at a time. And for many of us (including me) walking is very painful and difficult. Together we will get through this!

Christi, would you care to tell us a little about yourself? How long have you had your symptoms, who diagnosed you with PN, and what measures have you taken (or plan to take) to relieve your pain? We all benefit a little from knowing eachothers' stories, since what worked for you might work for me!

Again, welcome to HOPE. You are among friends.

Warm regards,

Lernica

[Lernica]

I live in the Greater Vancouver Area, home to the first Multidisciplinary Vulvodynia Program (MVP) at Vancouver General Hospital. I think for women, PN and vulvodynia are often treated the same. When I was referred to the MVP last year, I was refused treatment because my pain is constant. They only treat provoked pain. Can you believe it? Basically, my condition is too far gone for them to help me! You would think that such a program would be for those worst affected. But no. In a way, my pain is provoked; it's just provoked by getting out of bed! So those lucky ladies who only have painful sex get treatment, but I can just suffer in total disability.

That's quite a story, White Falcon! And I'm sorry you've had to go on disability. I think that I too am headed in that direction.

Then I had a laprascopic supracervical hysterectomy and removal of endo in July 2010.

So did I in November 2010, in a bid to end my pelvic pain, to no avail.

What kind of pain meds have you tried? My pain doctor advocates taking pain meds to stay on your feet and upright instead of lying all day because doing the latter can provoke other problems and pain issues. Do you have any thoughts on this? So far I have been trying his approach but at the moment I'm afraid his meds aren't up to the task. Next week I'll talk to him about moving on to opiates or supplementing my meds (see below) with Elavil in a bid to reduce the pain and to "stay upright".

[Violet M]

Hello, White Falcon and welcome to the forum. I'm so sorry to hear you have to lie down most of the time but I can relate because I spent the better part of 2 years lying down. You have a great positive attitude despite all you have been through and I hope that in your search for answers you will find what works for you.

I love my roho cushion -- actually I have 2 now. The first one was 16 x 16 inches but I felt it was too bulky so the next one I ordered was a 16 x 14 and I like it much better. Measure the chair you want it to fit in before ordering and order one with a front to back measurement a little bit less than the chair -- otherwise it overhangs the chair and is uncomfortable. Also, consider the contour select because it has a dip in the coccyx area that's great if you have any tailbone area discomfort.

[wendy7]

Hello White Falcon,

It sounds like you are doing everything that you can, to get back to as normal as you can, with the pain that you have. That is great. I hope that some of the things that you have planned do help you to be able to do the things you want to do.

Take care,
Wendy

[White Falcon]

Thanks everybody for your replies and kind words. I really appreciate it.

So did I in November 2010, in a bid to end my pelvic pain, to no avail.

Lernica, I'm sorry your operation didn't help. It took about 6-8 months before I really noticed an improvement in lower abdominal pain. Now, if my dog steps on my tummy, I'm not hitting the ceiling. It's much better. But zero help with the PN.

What kind of pain meds have you tried?

I have a cupboard full of pills: NSAIDS (naproxen, voltaren, ibuprofen) which do nothing; as well as opiates: demerol, morphine, hydromorphone, fentanyl patch, and codeine (with and without caffeine). I find them useless. The side effects are horrible, and they do very little for my pain. To get any pain relief, I would have to take a dose that makes me stoned, nauseous, and constipated. The morphine was the worst, and I took only 5 mg. I am very sensitive to meds. Can't take any antidepressants or anticonvulsants, either. I can't get out bed in the morning if I take neurontin or elavil, they make me so stiff and groggy and hungover, even at low low doses. An icepack and rest is more useful. When I am at my wit's end with pain (aka suicidal), I take 1/2 Tylenol #3, 1 plain tylenol (325 mg), and 400 mg ibuprofen.

The very best pain medication I have is sodium oxybate (Xyrem), but it's a sleep med, so only useful at night. Xyrem has been a lifesaver for me. At least I sleep soundly without pain, so I get 8 hours relief every day! The Xyrem also makes it possible for my hubby to get close, in the minimal way you probably can relate to... If anyone's interested, I might start a Xyrem thread, as it is a topic all its own.

[White Falcon]

I love my roho cushion - consider the contour select because it has a dip in the coccyx area that's great if you have any tailbone area discomfort.

Hi Violet - I have a Roho cushion on loan to try out. The cushion is the Enhancer, which looks a lot like the Contour. It was the only one available for loan at the time, and the OT who loaned it to me didn't know much about it. She didn't even know which model it was. I saw the name on the side of it after she left. She didn't bother to adjust it for me, nor did she check the size. It's like giving someone a pair for shoes to try, but without laces and two sizes too big... The OT said that I should consult the vendor for recommendations on style, size, and adjustment. The cushion I eventually get will be part of the wheelchair order and covered by my insurance. As yet, I haven't decided if it will help or not as I haven't really been given a proper trial.

With your Contour cushion, it looks like size would not only affect which chair it fits, but also how/where the contours are supporting your bottom, right? Who helped you pick the cushion? Why did they sell you the bigger size first?

[Violet M]

The Enhancer looks like it would be just as good as the contour select -- maybe better.

A PNE friend who is a nurse recommended the contour select. An employee of a medical supply store came out and measured me for the cushion size based on the length of my upper leg but when you inflate the air pockets of the cushion it seems to be wider than the measurements.

At work I have this style of chair which is perfect because I have to have a straight back chair that doesn't recline at all. They had some in the conference room and I liked them so well I asked if I could have one of them at my desk.

office chair.jpg (25.03 KiB) Viewed 1934 times

The seat on it measures 21.5"Wx18.5"Dx18"H. The 16 W x 16 D cushion overhangs too far in the front. The 16 W x 14 D is perfect. In the 16 x 16 cushion there are 9 air pockets from side to side and 9 from front to back. In the 16 x 14 there are 9 side to side and 8 front to back. The cutout is 9 air pockets by 9 air pockets on both of my cushions.

d-contoursel.jpg (6.29 KiB) Viewed 1934 times

[christi]

Thanks for asking, Lernica!

This started January 2009 with very odd cramps in my right foot and right calf. It then moved up that leg, and after a few months into my pelvis, focused on the right. At first the docs thought I might have MS, so I went through 6 MRIs and a spinal tap, all of which were clear. Finally, a physiatrist suggested that I had PNE. I went to see Dr. Howard in Rochester, but all he could offer were steroid shots. I did two of those, CT-guided, which flared me horribly and didn't help.

During this period I was in such pain that I lost 15 lbs. and was somewhat suicidal. I saw acupuncturists, chiropracterss, PTs. They all made me worse. OK, that's the short version!

I really appreciate all the information and support in this group!

--Christi

Christi, would you care to tell us a little about yourself? How long have you had your symptoms, who diagnosed you with PN, and what measures have you taken (or plan to take) to relieve your pain? We all benefit a little from knowing eachothers' stories, since what worked for you might work for me!

Again, welcome to HOPE. You are among friends.

Warm regards,

Lernica[/quote]