Hello from Vancouver
Posted: Thu May 05, 2011 8:12 pm
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.
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.