Health Organization for Pudendal Education

As I've said in previous posts I've had chronic pelvic pain for over 5 years now and recently I met a friend and she told me to look into PN as I may have it. I feel like since then things keep going down hill. I had a bilateral pudendal nerve block on 2/26 with dr chapman it did not relieve any of my vaginal pain. A couple days later my hip pain flared up (I have really bad hips. Had labral tear repair in Jan '11 but still in pain) now the pain from the hip is radiating down to my ankles. It frm yesterday I started having labia pain and the area around my cocyx (cocyx been giving mr prob for last 12-18 months) became very tender. Today I started with anus pain burning sensation and it feel like smthng stuck in there I'm going nuts! I've always been abl to sit but the past few weeks its become very painful and causes radiating pain to get worse. Walking especially doing the steps is very painful but that too only in the last few wks. To make matters worse I'm having headache/pain (unrelated to PN) that gets worse when laying down so no matter what position I'm in I'm in tons of pain. I'm taking an anti depressant muscle relaxer and tramadol but I'm miserable. I'm so scared of what's to come. I'm only 28 I can't stop living I have my whole life ahead of me!!!i spoke to both dr antlock and Conway and emailed dr dellon back and forth a few wks ago but it only made me more confused as thru each had their own opinion and diagnosis and also at that point my pain wasn't as severe. I'm really worried a this pain and stress will send me into a depression again and I can't get to that point again (I have major depression and been treating for it and I was finally doing better and now I'm peterfied I'm gonna have a relapse)
I'm not really sure what my question is but any comments will be appreciated
Thnx
Shana

Shana,
You poor thing. Hang in there we certainly do not want you going into over depression. I have seen advice to try tosort out any non- PN issues first so if there is more hip stufff that may be good to fix. Also, I had coccyx pain and the muscularskeletal doctor I see gave me some cortisone shots that helped. Hopefully others will come slong toprovide additional guidance.
Janet

Thank janetm2 I'm actually on the way home from having cortisone injections in both hips so I hope that will help. I had a double hip MRI last week and my dr called and told me everything looks fine but then I got the written report and it says there's a labral tear in both hips so I put in a call to him and I'm waiting to heàr back frm him. I saw my psychiatrist today and she feels I'm doing really well under the circumstance and she doesn't feel I'm getting depressed. She thnks I'm just remembering what its like to b so severely depressed that I'm afraid of falling again but I just need to focus on my health not my mental health.
Thanks for the support
Shana

Hi shana,
I think that I would try and concentrate on one thing at a time and as Janet has suggested looking at the hips would make sense as a good place to look at again, especially with the report you now have. As Janet also mentioned the 'hip fix' should be an easier thing to sort out. It looks like your first repair may not have worked, unfortunately. I wonder if they can see why from your scan?
The whole pelvic complexity can become mind numbingly confusing, so give yourself some time out and think 'hip'.
I would also look at pain management techniques too as it sounds as if you have a few pain problems to contend with, Something like this may give you a firmer base to be able to manage it all better.
Take care,
Helen

I guess ur right need to take one thing at a time. I'm just so sick of living with all thus craziness I want it gone already! Its getting harder and harder to work and since I'm self employed I don't get disability and can't afford to b unemployed. I have a pretty high tolerance for pain but I guess even my tolerance is nearing the end. I'm very sensitive to every thing that enters my body be it pain meds injections muscle relaxers anti depressants etc. I always react to them some I can manage the side effects but most I can't so I just learn to deal with the pain but I'm learning a to fast that I may b reaching my limit sooner than later. I'm only 28 I'm to young for this!!!!

I am sorry things are so difficult right now Shana. I sometimes feel I have so much wrong, will the doctors ever be able to help. I can't let that stop me though, and know people do get better! You are young, and that means your body is in even better shape to heal! You are a very brave woman to be taking all the steps you have already, you seem to have some really good ideas to help yourself get better.

I really hope the cortizone shots provide you with relief. I have thought about trying those in my hips, as I most likely have tears. I hope your new pains settle down soon.

Yes, please let us know how the shots go.
You'r right, it isn't fair to have to suffer this especially when young but Melioras point is also valid.
I can't remember if you have posted about how the problem came about for you shana? as I've had computer issues for the last couple of weeks and couldn't get into the Forum. If the problem had no discernible 'trauma' onset, there is a very good chance that you will make a full recovery, especially as you do have youth on your side.
Hope the shots work well for you.
Take care,
Helen

Shana,
FYI pain management does not have to be just meds. There are stress magement things like meditation and biofeedback, cognitive behavioral therapy that I am working on with a psychologist that might help you through. My best way through the early stuff was focusing on one treatment at a time then go to the next. It can be but does not have to be overwhelming. As the others said you are young and abl.e to heal easier then us 52 year olds. You are very brave and strong so far and need to feel good about the steps you have taken even when something falls short it is one thing eliminated. Let us know how you fair and know we are here for you and in one way or another have been through some of what you have and we are moving forward. I finally went with surgery and two years out still working new ways to lighten the pain, tried SI shots and with my aqua therapy having some break through pain and a tough drive leaving work so on tramadol and oxycodone next if needed but I believe both treaments are helping in a way I was able to sit longer without pain at work and I have hope things will turnaround. They better I have a 3hour meeting on Tues that I have to drive from my building. This will not stop my from a St Pattys Day dinner I plan to make! Just a delay from buying some ingredients today. Take Care
Janet

I had cortisone injections yesterday into both hips at HSS. I felt so sick afterwards, my head hurt, I was nauseous I felt like if I stood up I would faint and then later I started sweating. I called HSS and spoke to the radiologist on call, as it was after hours, and he tells me it's probably unrelated to the injections as people never complain about such a reaction and the medication that was injected is very safe. Well I googled the meds and sure enough the side effects, "though unlikely to occur" were exactly what I was experiencing. It makes sense as I'm very very sensitive to all kinds of meds and always react to some extent.

I woke up this morning with all of those side effects gone, thank God and went about my day. I was running around doing errands all day and was on my feet for hours and low and behold my hips are not hurting me. I'm still in disbelief! I was so skeptical about having any relief as I've been through lots of treatment without relief. I didn't tell my husband or anyone that my hips were just about totally pain free until a short while ago as I was afraid I'd jinx it.

I had the pudendal nerve block on 2-26 and since then I've had pain radiating from my hip down to my ankles mostly in my right leg, that pain is still there though now it starts below my hip, so from the thigh down to the ankle is causing me pain. I also started with burning around my anus and the feeling that something is stuck in there which is driving me crazy as well as labia pain that, though I've had labia pain in the past, it's been months and months since I had pain there.

Helen, in Sep 2009 I had a vestibulectom with Dr. Goldstein. Prior to surgery my only complaint was pain with contact, making sex impossible. (I had waited for marriage to have sex so I didn't know that was a problem. I was able to use tampons but since I bleed very lightly I was always using the "light days" tampons and though it was uncomfortable inserting I thought that's how it's suppose to be) A few months after surgery I started experiencing constant 24/7 vaginal and pelvic floor pain and eventually coccyx pain. My hip pain also started after surgery. The first PT I treated with after surgery, I also treated with her post surgery, would stretch my hips as part of the treatment and that's when my hips started bothering me. (My husband is convince she caused the labral tears but I'm not sure if that's possible. And I've never played sports in my life, I was always the last one chosen for the team as I'm really bad at sports so can't blame that) I had a right hip labral tear surgery in Jan 2011 with Dr. Coleman it gave me some relief but within a few months the pain was back. My latest MRI, done last week, shows tears in both hips.

Janet, you are right about other stress management things. As I suffer from depression, very serious at times though now it's fully under control, I've learned lots of techniques and stress management skills over the many years in therapy. For me the thing that I felt helped the most was DBT, dilectical behavioral therapy, I would recommend everyone be taught the skills of DBT as it's great for those going through stressful situations and great for those just living through normal day to day stress. I should really take out my DBT loose leaf and go through the skills to refresh myself on it.

As for now I'm continuing to pretend I feel ok and try to do the normal things that a 28 year old does to the best of my ability. When I didn't do that is when I fell into a major depression and that to me is much much much worse than the physical pain I feel now so I don't want that to happen.

I'm going to Dr. Chapman again Mon and possibly going to have another block done. Will keep you updated.

Thank you all for your support it, means a lot to me!
Shana

Very good news about the hip block working shana That must give you an uplift and now there are good things to report at your appointment on Monday. I don't know a great deal about labral hip tears, although we do here more and more about them and a PN connection in some people.
If it wasn't so damned painful, it would be a really interesting study, working out what's what with these pelvic anomalies.
Of course your previous surgery may be the cause of your pelvic pain now, although in the most definite surgical induced PN, the patient wakes up from the anaesthetic with this new pain, as a few people have reported on here in their own cases.
It's a case of trawling through the treatments, assessing the outcome and progressing from there, one step at a time.
Glad that you have your stress relieving procedures to rely on but I bet at the end of all this you will be able to look back and be amazed at your fortitude and bravery as Janet mentioned.

Edited to add http://www.bodyinmind.org/stress-model- ... in+Mind%29 which talks about the connection between stress relief helping chronic pain.
Take care,
Helen