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Healing from Surgery
Posted: Fri Sep 24, 2010 6:22 pm
by LottaNerve
Hello!
I am honored to be the first person posting in this section and am excited about this new site to help those of us with chronic pelvic pain and pudendal neuralgia and entrapment.
I have been around the block, so to speak, and had to find out much of the information through extensive research, web searches, talking to other patients, and traveling to doctors and specialists. This is after 15 years of suffering pelvic pain, 10 of those in which interstitial cystitis was the diagnosis, and exploration of pudendal neuropathy in the last 5 years, with a diagnosis of pudendal nerve entrapment after several years of conservative treatments (non-invasive, such as physical therapy, "paradoxical relaxation," botox injections in my pelvic muscles, pudendal nerve blocks, and finally - pudendal nerve entrapment surgery.
My surgery was last month, so as you can imagine, I am in the first weeks of healing, which can be a very difficult time. It is hard to know if you are doing well or not -- those with experience tell you to wait at least 4 months before deciding whether your surgery was a success or not. I am taking it day by day. I can take short walks, which is advised, but everything else is restricted to bed rest or in a special recliner that allows me to keep my leg extended. That is where I spend my evenings so I can watch programs or movies with my husband.
So - I am in a situation where I am looking for support and caring from other members who have experience with PNE surgery, but also I am here to provide information to those who are exploring surgery as an option. I know how important it is to make sure you have tried other options before the surgery, and how important it is that you know the risks and outcomes of PNE surgery before undertaking it. I was told that the success rate is roughly divided into thirds (of course it depends on which surgeon you go to, and which approach is used, and your own particular case): 1/3 of us get better (back to our former selves and lives); 1/3 of us have improvement (we are better but not completely without pain or restrictions); and 1/3 of us stay the same. I was advised that less that 1 percent get worse.
For me, these risks were worth it. I had come to the end of my rope. I was bedridden, could not walk or even stand without pain - the problem was my left side, so my left leg was losing function as well as experiencing terrible pain. It felt like a knife, or sometimes a sword, was piercing through me in my vulva area to the left of my urethra and vagina. For so many years I was told that was the result of "referred pain" from my IC bladder. Later I realized that it was the perineal branch of my left pudendal nerve. Just having a REAL diagnosis was such a relief!!! I knew in my soul that PNE was the correct diagnosis.
I will try to keep you updated on my progress as I go through the healing process and look forward to hearing your surgery stories, as well as finding friends to recover together with.
Happy healing and all my best wishes t those seeking help with pudendal pain,
Sharon
![Very Happy :D](./images/smilies/icon_e_biggrin.gif)
Re: Healing from Surgery
Posted: Fri Sep 24, 2010 6:33 pm
by LottaNerve
Oh, and the findings of my surgery were very conclusive, which was also a relief to me - they FOUND the culprit that took me down all these years! My pudendal nerve was trapped, actually adhered, or stuck, to my sacrospinous ligament near the "sacral attachment" (sacrum) by extensive scar tissue. They had to free the nerve from the ligament and ablate, or cut, the scar tissue which was essentially gluing it to the ligament. Dr. Hibner spent a lot of time, first with my sister and husband while I was in recovery, and then with me the next morning, telling us what he had found, and why it was no wonder I had been in such pain. His P.A. (physician assistant) told me at my post-op appointment that she was impressed by how much scar tissue was there and how much pain I must have been in.
These findings were so validating for me, since I had gone all these years without any validation of my pain -- doctors were always telling me my bladder had good capacity (even though I did have the IC glomerulations) or even worse, when doctors told me they could not find anything, after I had numerous MRIs, ultrasounds and even a laparoscopy to find out why I was in such pain!
Re: Healing from Surgery
Posted: Fri Sep 24, 2010 8:23 pm
by Karyn
Hi LottaNerve!
Thank you so much for posting your story. I pray for continued healing for you. Gee, maybe you should change your name to LottaScarring?!?!
![Laughing :lol:](./images/smilies/icon_lol.gif)
I haven't had surgery but don't think I'm going to be far behind you. I'm one of those who's had the 3T MRI, which seems to have picked up some pretty significant scarring, entrapping the PN. Scar tissue entrapping the PN seems to be a common denominator lately.
I can only imagine your relief at having a concrete reason for your pain! Thank you for being here to share your experience and to advise those of us on the cusp. Please know that we're cheering you on for a full recovery!
Warm regards,
Karyn
Re: Healing from Surgery
Posted: Sat Sep 25, 2010 4:16 am
by Violet M
Sharon, I'm curious do you or Dr. Hibner have any idea what caused all of that scarring?
Five months after surgery was when I started to feel like I could walk again without too much added pain. Are you using plenty of ice to get through these difficult days?
Re: Healing from Surgery
Posted: Mon Sep 27, 2010 10:32 am
by Romaine
Hi Everyone,
I m new to this particular site but I have been active on other pain management sites, meeting and speaking to other sufferers. The support that I have been receiving from one patient in particular has been fantastic. My name is Romaine and I have been suffering with this pain since 2007 when i slipped and fell on ince whilst on holiday in Canada. When the pain got worse, i visited doctors and various therapists in Canada and had all types of therapies done to me ranging from drugs (lyrica, neurontin, pain killers, epidurals,local botox shotsetc; reflexology, chiroprator treatments, accupuncture, accupressure,manual manipulation of my coccyx) endless you name it I tried it. Then after an epidural shot that went worng and hospitalised me for 11 days I ended up in Trinidad (where I am from originally)having my coccyx removed.
I returned to London UK in 2008 and started back with accupuncture, osteopath treatments, bowen treatment,physiotherapy, medication, medication patches, antidepressants,,again the works. Then i was diagnosed with allydonia and they tried lidocaine infusions, then ketamine infusions. following this i got tired as one of the nurses tried to imply that i was addicted to pain meds and the pain might have been in my head and stopped all medication totally showing that I wasnt addicted. I was referred to the gynacologist as well as I had some bleeding which was bnever explained and I started sleeping standing up with my ironing board as a pillow. Then I discovered pudendal nerve entrapment which seemed to fit all my symptoms. Further investiagtions took me to venezuela where the first nerve block was done..without warning as the doctor spoke limited english (:...and was done through the vagina.
This was followed up by 5 procedures done here in London with little relief. I was finally referred to professor Carlstedt and the nerve entrapment surgery done last Thursday at the Neurology National Hospital in London. this was not without problems as i was supposed to have been admitted on the 23 for surgery on the 24 and the promise of discharge on the 25th. Was actually contacted on the 22 to say that the surgery was the 23 and that i would be admitted that morning at 7 for surgery at 8 am! Realising that it was an error by the admitting people I went in as I was anxious to have this done myself especially since professor Carlstedt is the BEST in the UK. Well the surgery happened, and apart from the odd blood pressure testing, I was not told anything following the operation. the next morning when I was returning from the bathroom, the head nurse stopped me to ask what happened the night before...when I asked why she told me that I was discharged the night before....so I was lost! I explained to her aboiyt the initial mix up taking the time to explain that Professor carlstedt had said that I would have been discharged the following day! anyway she was wrong as the rest of nurses came back to advise that I would be discharged at about 9 00 am that day. At about 200 pm I was again approached by the head nurse expalining that no one was there from the team to discharge me and finally another doctor came just to discharge me...no information about what happened, what to do whether Im supposed to sit stand or stay lying down...just go to my GP for instructions. Knowing that Pudendal nerve entrapment is kind of rare here, I contacted my friend from the other forum who as part of her advice,suggested that I post here for any advice from others doing the operation. i have spent 2 hours this morning callin g every hospital and clinic connected to Professor Carlstedt and am still proaying to hear something back as I also need sick leave for my workplace...only got a form for two days, basically partially filled out as well.
So please anyone of you can advise me I would be grateful. I am still in pain, although I have lost the big grapefruit feeling in my anal region. my upper left leg is burning badly and I have this burning pulling feeling with the vulva/ anus region. I really hope that this is healing pain as I am anxious to get some relief.
So please, let me know if you can
thanks
Romaine
Re: Healing from Surgery
Posted: Tue Sep 28, 2010 6:29 am
by Violet M
Romaine, I know nothing about Dr. Carlstedt's protocol but as a general rule after surgery you need to keep the area clean and dry, avoid anything strenuous, and watch for signs of infection. For pain relief if you have nothing else use lots of ice. Try to take short walks throughout the day and don't let yourself get constipated.
I think you would need more like 2 months (at least), not 2 days for recovery so I hope Dr. C will get back to you soon. Best wishes with your recovery.
Re: Healing from Surgery
Posted: Tue Sep 28, 2010 1:31 pm
by Romaine
Violet
thank you for your response. I have been trying to remain positive even though the pain is quite severe at times. But its early days yet, hoping for the best.
Romaine
Re: Healing from Surgery
Posted: Tue Sep 28, 2010 4:30 pm
by A's Mommy
Romaine,
Please keep us posted on how you are doing. I'm from the states and have never heard of your doctor, but this could be very helpful for UK patients. How long has he been doing this surgery and did he learn it in France from Bautrant?
Sincerely,
A's Mommy
Re: Healing from Surgery
Posted: Wed Sep 29, 2010 12:10 pm
by catherine a
Hello Romaine,
Like Violet said, you will need to take at least 6- 8 weeks away from work. I had to remain in France for another 2 weeks after my surgery before I was allowed to fly home to Australia.
I did not return to work for more than 3 months. Even then it was only for a few hours 3 times per week. If you wash with a Betadine wash or any antiseptic wash from the pharmacy it will help keep down infection.
The anal and vaginal area are very susceptible to infection so make sure you wash after every bowel movement. As it's painful to wash thoroughly, I found the Betadine wash to be very good.
You also need to make sure you don't get constipated. Keep taking some sort of stool softener, something gentle so you don't get stomach cramps. whatever you do, do not strain, do not push down on the rectum.
The feelings you have are very normal after surgery and will take a long time to recover. When is your next appointment with Dr. Carlstedt? You could ask Judy B if she knows of him and his PN surgery. Email her at
info@pelvicpain.org.uk
Judy may be able to tell you more about him. Prior to this doctor doing PN surgery, all PNE patients went to France so we don't know much about Dr. Carlstedt at all.
I can't believe you've been discharged from hospital with no instructions. I suppose the same happened here in Australia when the surgery was first performed. No one seemed to know what to expect. Bear in mind that some people have recovered very well in 6 months where others will take up to 3 or 4 years. Depending on how much damage is done to the Pudendal nerve. Don't lift or bend. Take your time walking etc. a little bit at a time. These nurses have absolutely no idea how much pain you're in. If only they would read our forums they might just understand a little more. Until the PN clinic was established here in Sydneyin 2008 no-one had a clue about this type of pain. The medical profession is slowly learning thanks to the few doctors who care to learn. I hope you'll see your doctor again soon. Take your meds. regularly as prescribed and take as much rest as you can get Romaine. Your going to need it. Keep in touch with us even though it's painful to sit. The people on this website have been such an inspiration to me and I don't know where my life would be without them. Take care, try and relax as much as possible. it's difficult I know, but you need to be kind to yourself.
Catherine
Re: Healing from Surgery
Posted: Wed Sep 29, 2010 9:10 pm
by Romaine
Hi Everyone,
Thank you for the feedback and words of encouragement. i must say that without the support from you guys and in particular my friend Hilary, I dont know how I would have coped. Today is day 6 following my surgery. Most of the area around the incision is burning. This is my 27th medical surgical procedure, have had lots for endometriosis, gallstones, appendix, hysterectomy and glaucoma so I was a bit taken aback with out the aftercare instructions, especially being in a first world country.
As far as I know I think that Professor Carlstedt is the only surgeon in this field in the UK. My interaction with him to date has been excellent, if only his team could be a bit more professional
![Smile :)](./images/smilies/icon_e_smile.gif)
.
After a really frustrating time, I finally managed to speak to one of his team members who advised me that I should be away from work for about 4 weeks and should try to be as normal as possible in my activities. This didnt sound right to me and the GP was not much more forthcoming as they are not really versed in this field. I was told that Professor Carlstedt would be seeing me in 10 days time so I will wait to get proper instructions then. I have had some relief from the "grapefruit" sensation so thats a plus at least. I havent tried doing much more than short walks around the house.
Still praying for the best.
Romaine