About me

NOTE: The following was written before I had life-changing surgery on November 13, 2012 to implant an intrathecal pain pump for the management of severe chronic pain.  Now, seven months after the surgery, I am back in the mainstream of life, enjoying every minute and adventure as it comes…!!!

Endometriosis

I was a happy, healthy, active woman when the first symptoms of this nightmare called interstitial cystitis (IC) and pudendal nerve entrapment (PNE) began. I felt a sharp burning sensation in a part of my anatomy I never thought I would be writing about publicly, and assumed it would disappear as quickly as it appeared. That strategy didn’t last long. Soon I was making the round of doctors, shocked that none of them had a clue of what was wrong with me. Finally an gynecologist announced that I had “urethral syndrome” and set me up for a procedure where the delicate tube going to my bladder was stretched with graduated sizes of metal rods. Life as I knew it was over, and a new life of pain and indignity had begun.

Over the next few years, I would endure other insults to my body, still with no diagnosis. In a desperate late night search, I found Dr. Lowell Parsons, a noted IC specialist and research scientist who helped develop Elmiron, the first medication approved by the FDA for IC. Dr. Parsons was excited about a new diagnostic tool he had developed for IC – the postassium sensitivity test. Soon I was on the table with a nurse prepping me for the instillation. Owwwww!!!  (Hmmmm, let’s see what happens when we fill an angry, inflamed bladder with a strong irritant….  As you can imagine, I hit the ceiling, and we had our diagnosis!)

The only problem was, the initial knife pain signal in the left side of my pelvis was still there. It felt like I’d been stuck with a knife. Every time I asked a doctor about it I was told it was “referred pain” from my bladder… Ha! That “referred pain” ended up hurting a lot more than my bladder symptoms. It intensified and spread to my left buttock as well, sometimes running down my leg so that walking became difficult. Once again I began scouring the internet for clues, and I found out about pudendal neuralgia and pudendal nerve entrapment.

– I suffer from interstitial cystitis and pudendal nerve entrapment;

– I have had two hydrodistentions under general anesthesia, in which the bladder is distended with water until the lining cracks and bleeds. I have had bladder instillations of DMSO, heparin and lidocaine.

– I have had two failed PNE surgeries with two of the highest regarded surgeons in the field

– Before surgery, I tried acupuncture, meditation, physical therapy, relaxation therapy and meditation, neurofeedback, trigger point injections, nerve blocks and botox

– I have been going to a pain clinic for over 13 years.

– Have been on SSDI disability for several years

– I use ice packs, ice bags and my heating pad

– I cannot sit.  I cannot walk very far without terrible pain.

– I had a great career as a writer, musician, creative director of ad agency, journalist

————————————————————————————–

NOTE:  Now that I have had my intrathecal pain pump (which I named “Gertrude”) since November of 2012, my life has totally changed!

– I’m getting my groove back and enjoying life again!  (Take that, you nasty, nasty pelvic pain monster!)

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14 responses to “About me

  1. Hi,
    Very happy for you ; -)

    Do you use a crush for sitting? Their pain as improved (scale 0 to 10)?

    Their pain as improved (scale 0 to 10)? I am suffering from this disease and how I’m young, I’m only sure that I will have more time to suffer … If I can go back to work. Even put a TV in my belly!

    Thank you

  2. Hello Bruno,
    I’m sorry you are suffering. This disease is terrible.
    I do not use a cushion for sitting any more.
    I don’t notice my pain most of the time. If I am tired or I ate something too acidic, I notice some bladder pain, around 3 – 4 is a guess.
    Hope this is helpful.

  3. Hi, your description of what you’ve been thru makes me cry! I’ve had rectal pain since a colonoscopy, 15 years ago! I used a fentanyl pain patch for last 10 years, but it no longer works for me, so I think I am going to try the pain pump, with your doctor. I live in LA , so I am thankful to know there is a capable Dr. In LA to do this. I would like to e-mail you or talk to you about details. I am hopeful this can restore my life. I’ve been thru hell, as has anyone with PNE.

  4. Adele, I am so sorry to hear of the suffering you have endured for so long. The good news is you are in L.A., as Dr. Prager is one of the best pain management doctors there is. I emailed you and look forward to hearing from you!

  5. Hello,
    I’m a PN patient (post failed PNE surgery in Phoenix) who is on the most massive doses of pain meds that any of my docs has ever seen. I still have constant pain, and am planning on contacting Dr. Prager (i am getting a referral). However, I do have a couple of questions I’d like to take off line if you are wiling. If so, please email me when you have a moment.
    Thanks so much, and I’m SO very happy for how well you’re doing.

    Stacey

  6. I’m not doing very well! I’ve had rectal pain since a colonoscopy 16 years ago. I have kept pain tolerable, barely, using phentynal patch, but it’s not working well anymore. I was interested in the pump, but discouraged about trying it by my pain Dr. If physical therapy doesn’t do it for me, I’m thinking I’ll have to try surgery, but it scares me to death! Today I bought some Marijuna to see if it would help. I’ll be happy to help you with any questions you have.

  7. Adele, I would encourage you to call or contact Dr. Prager’s office – California Pain Medicine Center – on their website form.
    http://www.californiapainmedicinecenter.com/
    I have learned so much about pain and the central nervous system since I started with Dr. Prager. If you watch the videos on their site it is really an eye-opener.
    best wishes. 🙂

  8. I’m sorry, I don’t have your first name. I called Dr.Pragers office today. I’m having my records sent over. But I am concerned about the costs, since he doesn’t accept insurance. Do you mind telling me how you’ve handled this. I have Medicare & blue Anthem supplement (the best paying). Do you see him every month for medicine for your pump? Is it possible for him to set things up & another doctor put the medicine in the pump? You can email me at acasden@securakey.com if you would rather. Thanks do much for your help!
    Sincerely, Adele

  9. Hi Adele,
    I have sent you an email. My situation was very similar to yours. I had Medicare and an AARP supplement. I was fortunate to be able to make arrangements to pay. It is very expensive. The hospital (UCLA outpatient) does bill Medicare so that took care of much of the cost of the pump trial and surgery. I don’t know what kind of arrangements they can make as far as other physicians providing follow-up care. And you won’t know until having a consultation whether the pump would even be the answer for you: every situation is different. 🙂 Best wishes.

  10. Thanks for your blog! It really does give me hope. I’m glad you shared about the pain pump meds as I also have severe PN with little to no relief. I have a few “delicate” questions if you don’t mind me asking:) Can you email me when you get a chance?
    Robin

  11. Robin, thank you for your comment. It helps me to hear from you too;in fact, it is overwhelming to get replies from others out there who are suffering like I was. I will email you as soon as I finish writing this. 🙂

  12. Gary, if you read my post called “All Aboard the Ketamine Train” https://icandpne.wordpress.com/2012/02/10/all-aboard-the-ketamine-train/ it describes my experience with ketamine. I only tried it once – a 3-day infusion of 4 hours each day. I had about two days of pain-free bliss, then my bladder reacted with a HUGE flare from the ketamine itself. Ketamine is a bladder irritant – and it hurt!!! The two days were not worth it.
    If you research ketamine infusions, you’ll see the benefit is different periods for different people. Usually though, it’s no more than 3-6 months or so – different for each person. Most people have to go back for more ketamine treatment several times to know how well it will work for them.
    Best wishes.

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