I had a pretty good visit with a urogynocologist who specializes in pelvic pain/health. She was very thorough and developed a treatment plan for me as follows:
1.) She acknowledged I am probably suffering from pudendal neuralgia. She referred me to a pain management clinic who does nerve blocks for her patients frequently. So on December 27th I will get a pudendal nerve block which will hopefully better diagnose me and possibly help my pain, but it is more likely I will also flare up after the block. Unfortunately the block is necessary to diagnose my pain. My doctor is not a fan of the surgery that is necessary to release a pudendal nerve entrapment (and neither am I at this point) so we will stick to conservative treatments until my quality of life greatly deteriorates if I do have pudendal neuralgia.
2.) I will travel the 3 hours back to their office a few times (I think the doctor wants me to go once a week for 8 weeks, but I don't know if that will be possible as I can't drive myself) for a series of treatments including:
-Bladder installations (this is a treatment they use for interstitial cystitis which I don't have, but I have some of the symptoms including urinary urgency/frequency). These symptoms have been better though the past week so i don't know if I want to do this or not. They will instill a solution of medications into my bladder that over time will hopefully help decrease my symptoms.
-Trigger point injections. I have painful "knots" in my pelvic floor and abdomen so they will inject an anesthetic into these areas.
-After the trigger point injections I will follow up with physical therapy there. A fellow sufferer of pudendal neuralgia recommended this office to be because of their PT's. I am really hoping they will be able to help me more than my current PT (who I love, but is just not extremely experienced).
-"Talk Therapy". The office has a psychiatric nurse practitioner who talks to patients about the struggles associated with living with chronic pain. I think I will try this, but I feel like if the therapist isn't a Christian they won't be able to really counsel me appropriately. But she deals with people with pelvic pain everyday, so it will be nice to talk to someone who understands my struggles a little.
I was hoping I would start these sessions in the next couple of weeks, but they cannot get me into PT until the first of the year. This is really dissappointing to me because we have met our out of pocket maximum on our insurance so any other treatments I have this year will be free. I am supposed to talk to the scheduler who coordinates these treatments the first of the week. Please pray she will be understanding and God would allow them to get me into PT at least once before the end of the year!
3.) The doctor also recommended I try a continuous birth control like Seasonique so see if I would experience less pain flares (since I usually flare around certain times of my cycle). However this birth control would be extremely expensive for us. I don't really want to add hormones to my body because they make me emotionally unstable, but if it would help my pain I would do it in a heart beat. So I am praying about this and am going to wait until after my nerve block and a couple of these other treatments first.
I am transferring back to the physical medicine and rehabilitation (physiatrist) doctor in my hometown that treats pelvic pain patients this Tuesday. I am praying this will be a good visit as I have increased my Neurontin a lot and am still suffering at times from the headaches and generalized muscle pains. Please keep me in your prayers on Tuesday. So now I will have two main doctors....the urogyocologist and the physiatrist. Thanks for caring for me, reading this blog, and your continued prayers.
I am so very sorry you are suffering with this condition, Hannah. I know the drill; I have PN myself. I was in a bad car wreck in the late 90s; I had my foot on the brake when I was hit head-on. The force slammed upward into my pelvis and loosened my ligaments. 3 years later I developed horrible pelvic pain. That was 8 years ago. I am still in pain, though I have it under control with meds. (heavy meds). I do have a life, but it's a curtailed and constrained one.
ReplyDeleteYou are fortunate that you have God and a good husband. Many others with PN are not so fortunate. I have know several individuals who have given up and committed suicide.
Don't be too scared of surgery, if it comes to that. Just be sure to go to a doctor that has a lot of experience doing pudendal nerve release surgery. There are not many. The surgery saved my lfe.
A good place for support:
http://www.pudendalhope.info/forum/viewforum.php?f=1
God Bless you. You can make it through this. Life can get better.
Chris
I don't know how to get back in touch with you Chris, but thank you for your kind words. I am actually already a member of pudendal hope and visit the site frequently (although I post under a different name). I am thankful for that support group. It is how I found out about this urogynocologist. Blessings to you.
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