Ness 70's Progress Report- 2 yrs post PNE surgery

[ness70]

Hello All
Some may remember me from the last forum, but for those who don't here is a quick recap
I am a 40 yr old female living in Perth, Western Australia, so am lucky to have the support and friendship with Catherine A - which has helped me enormously with my PNE journey.
I suffered with endometriosis (which was diagnosed when I was going through infertility) and in Dec '99 underwent a laparotomy to remove invasive endo and had 1/3 of my bladder removed, 6 inches of bowel and had my uterus 'shaved' where it was stuck to the bladder. This surgery allowed me to undergo IVF safely and was very blessed to get pregnant with boy/girl twins- they were born in June '01. The caesarean took 2 hours due to the adhesions, and my recovery was hampered by pelvic pain that later was discovered to be caused by my uterus slipping between muscles and adhering to abdominal wall. (the pain so great that I was unable to lift my premature babies). My gynae told me that because of this and other factors (unable to have anymore children due to weak uterus) that a hysterectomy was the best option. I had a Total Abdo Hysterectomy when the twins were a few months old....which I thought would be the end to my pain
Pain has been part of my life since the caesar and hyster and got increasingly worse until I was admitted to hospital in July 2006 with suspected diverticulitis (bowel condition) but this just sent off the beginning of my pudendal symptoms. Started with rectal pain then vulvodynia began. After a few months I was unable to sit and the pain spread to my thighs. I did reasearch about vulvodynia causes and came across PNE so contacted my gynae and asked to see a neurologist. The neurologist started an EMG test but stopped halfway through telling me "You won't have PNE as it is extremely rare". Meanwhile my symptoms got worse and I had to give up my job-a Registered Nurse and became couch bound and on morphine 24/7 and the recipient of meals from mothers at my twins school.
While this was going on, I was seeing a physio about the vulvodynia and was told my pelvic floor muscles were in spasm so treatment concentrated on this.I had BOTOX treatment 3 times and this gave about 3months relief each time. Around this time I attended a talk at the Womens hospital given by Prof Vancaillie and Catherine A about Pudendal Nerve...I stood at the back shaking my head in disbelief-I had ALL the symptoms listed. When I next saw my physio and new Gynae I mentioned this and that afternoon was taken to hospital for a Pudendal Nerve Block-BINGO- pain relief for 6 hrs!!
My gynae could see that my pain level was a 10 and quality of life a 0...so he arranged for me to fly to Sydney for Nerve Decompression Surgery.
I had my surgery in July 2008 and was Prof Vancaillie's 9th patient. He performed the TIR approach and I went home 10days later-sore but hopeful.
Pain relief was my immediate concern so saw a pain specialist and he put me on Durogesic (Fentanyl) Patches 12mcg and then Endone (oxycodone) tablets 20mg a day...which I remain on today.
Recovery has been slow and I never thought It would take the magical 2 yrs to see results, but I know I am so much better and so glad I had the surgery. For the first year I underwent BOTOX 2 more times and tried acupuncture, dilators and physio but wasn't making much progress and remained couch bound. I got piriformis syndrome post op which made recovery painful too. I went through a lot of health professionals trying to find a way forward and I finally found the right 2 physio's this time last year (about 18mths post op).
I see a women's health physio Judith Thompson who has a Phd in Pelvic Pain (and lectures at University) and has been treating me weekly- she performs massage externally- abdo massage where she says we hold a lot of tension and then moves to my buttocks/lower back/inner thighs before massaging the perineum and then trigger point internally vaginally and sometimes rectally. She doesn't think dilators are that helpful for PNE as it flares patients to much, so each treatment is tailored to the individual and doesn't believe in having 'a Judith Thompson method' as it doesn't work for all and believes practitioners that say they use 'a method' are doing their patients a disservice.
She then put me onto another physio who I see concurrently, Prue Newnham a rehab physio who uses pilates principles to get patients out of chronic pain. She is a physio with the Australian Swim team and works getting athletes back from injury. The progress I have made is phenomenal. I am now walking every day as I understand that pain gets better with movement and lying around in a protective state was the worst thing I could have done! She has worked on my fitness, so much so that last month I was able to sit on a 4hr flight to Bali Indonesia for a week's holiday with my ever patient supportive husband. I was walking 3 hrs a day and was able to have sexual intercourse x 4 without pain....things I could only dream of a few years ago.
I am doing so well that my next goal is to get off the narcotic drugs. I am also on Neurontin (1800mg) but want to go back to work next year, just 1 shift of nursing a week...my old boss very understanding and will allow me to do a 4 hr shift if that is all I can manage.
I find I am good during the day, but come 5pm I am on the couch as I am unable to stand/sit any longer, but after I have a rest and my medication I am even able to go out to evening functions!! I do have to be careful with pacing myself as I am prone to 'over doing it' but nothing a quiet day at home can't fix. I still can get rectal or perineum pain but this is getting less and less.
But I credit my good recovery on both these physiotherapists and my GP, my PNE friends and of course my family!
Sorry for the long story, but hope some of you can find it useful in your journey
cheers Vanessa

[pianogal]

I am so happy for you! Thank you for sharing and keeping us updated!

[Griff522]

It's nice to hear about someone improving so much. Thank you for taking the time to share some good news.

[MsRivers]

Dear Ness,

Was your surgeon in France? How did you ever figure out the logistics of having surgery in a foreign country? Were your tests done here in the states? If so did their office corrdinate everything for you? It just seems overwhelming coordinating all this. You'd not want to arrive and not be able to have tests done because you lacked some sort of medical record.

[Violet M]

Ness, it's so great to hear that you are finally coming out of the woods and you can enjoy life again! I never dreamed I would be back to work but we are proof that it can happen. I hope you will continue to see even more improvements.

Violet