Health Organization for Pudendal Education

Like so many others, my story is long and complex. I do not want to cut it short as a part I take out might relate to someone or maybe had a similar experience. Prior to August of 2006 I was an active mother of two teenagers, running from one sporting event to another, happily married, running a household and loving my job. My life was as close to perfect as it could possibly be. I was truly happy and loving life. If someone would’ve told me what was about to happen over the next seven years, I would not have believed it possible.

My symptoms first started in August 2006 when I was sitting at my son’s soccer game. I noticed I had some vulvar vaginal burning. After a few days I went to my family doctor and they treated me for a bladder infection however my culture ended up coming back negative. The burning didn’t go away so I went to my gynecologist. He did several tests, all coming back negative, but ultimately he decided to treat me for a bacterial infection. Each course of vaginal ointment made the burning worse. I had vulvar vaginal burning, swelling, extremely inflamed, sex was difficult and I wasn’t able to sit without discomfort. My gynecologist, of almost 16 years, retired a few months after my symptoms began so for about fourteen month I went to multiple doctors, each using multiple treatments with no success of relieving my pain. I tried a low oxalate diet and all natural medicines as well, all without success.

In October 2007, I was referred to Dr. Andrew Goldstein. Although I live in Pennsylvania and his office was in Maryland, I didn’t hesitate because I was desperate for pain relief. He diagnosed me with vulvar vestibulitis. I went to physical therapy, used topical ointments and received injections. All treatments were unsuccessful in relieving my vulvar vaginal burning. In January 2009, Dr. Goldstein performed a vulvar vestibulectomy with vaginal advancement at Johns Hopkin Hospital in Baltimore. Afterwards my burning increased significantly. The only way I can describe my burning is by telling you to hold a match to your skin and then you’ll begin to feel the burning I feel constantly. I thought it was just from the surgery and I would begin to feel better, but it didn’t and I also now had occasional rectal pain. It continued to get worse until I was unable to sit at all, sex was impossible, I wasn’t sleeping because of the pain, working was difficult, my whole life no longer the resembled the life I had just a few short years prior. Every aspect of my life had been severely affected. A few months after my surgery, Dr. Goldstein said I had defects as a result of his surgery and would need to have a revision to fix the defects. I was devastated at the thought of going through the surgery again, but at the time I felt like I didn’t have a choice. He’s the medical professional telling me he can make me better so you just say ok especially when you are desperate to have pain relief. However, before moving forward with the revision we agreed I should have the hysterectomy I’d been putting off for a while. The hysterectomy was due to my period being very heavy and lasting around 2 ½ - 3 weeks out of the month. Having the hysterectomy first would ensure I didn’t have anything hindering my recovery from his revision surgery.

In June 2009, my local gynecologist performed my hysterectomy, using the Robotic DaVinci System because it would ensure no vaginal entry. Unfortunately, the hysterectomy resulted in two more additional surgeries, both involving vaginal entry as well as a laparoscopy, to locate an artery that was compromised during the original hysterectomy. I hemorrhaged twice almost dying during the last hemorrhage. They did a catheterization going in through my groin to finally find the bleeding artery and it blocked it 80% to prevent it from “bursting” again. By this time, my burning pain had evolved into worse pain than I could have ever imagined.

In March 2010, I went to Dr. Richard Marvel, located in Maryland, for another opinion regarding the vestibulitis diagnosis. He diagnosed me with pudendal neuralgia. He said fixing the “defects” from my vulvar vestibulectomy would not improve my burning pain because my pain was coming from the pudendal nerve. At this point he didn’t feel less invasive methods would help me, that surgery was what I ultimately needed, but after the terrible experience I had just had with surgeries “gone wrong”, he agreed to less invasive first. We tried numerous medications, physical therapy again, topical ointments as well as a CT Guided Nerve Block. All were unsuccessful proving his point that I needed decompression surgery.

I decided to go back to Dr. Goldstein because in my mind I was afraid that not fixing the defects would hinder any effort in reducing my pain. In December 2010, Dr. Goldstein performed the revised vulvar vestibulectomy at George Washington University Hospital in Washington, D.C. Once again, the surgery did not help ease my pain. It only increased my burning pain and the rectal pain just after surgery was off the charts painful.

At this point, I felt hopeless. I was in so much pain it was hard to think straight. I was afraid to go to any doctor so for months I just continued suffering with my pain.

In October 2011, I found Dr. Robert Echenberg in Bethlehem, PA. He confirmed my diagnosis of Pudendal Neuralgia and also diagnosed me with Interstitial Cystitis. He started me on oral medications, topical ointments, pudendal nerve blocks and bladder instillations. The bladder instillations were successful. However after months of pudendal nerve blocks, with no relief, he referred me to Dr. Mark Conway for a surgery. In July 2012, I had the Transgluteal Approach Pudendal Nerve Decompression Surgery.

It has been a very long road. I am almost nine months out from surgery in July 2012 and I still have an unbearable amount of vulvar burning pain. Unfortunately, after surgery I now have tailbone/SI Joint pain. Dr. Echenberg and my physical therapist referred me to Dr. Jean Santo of Advanced Pain Care Management for my tailbone/SI Joint pain. She ordered an MRI. The results showed inflammation and arthritis in my SI Joints. She said it is extremely rare for someone my age (I’m 41 years old) to have arthritis in the SI Joints. Dr. Santo performed an SC Joint injection in March. It made my tailbone completely numb, but my pudendal burning pain and SI Joint pain hindered me from enjoying the numb feeling of my tailbone. I am scheduled for SI Joint injections in April.

Dr. Santo recognized the complexity of my condition for which I am extremely grateful. She asked if I was familiar with intrathecal pain pumps and I immediately told her yes as it was the number one question on my list to ask her. She felt given my condition, all that I had been through and all of the medication I’m taking yet still in a tremendous amount of pain, that I was a good candidate for an intrathecal pain pump. She personally called a specialist at Hershey Medical Center to discuss my condition so I now have an appointment with Dr. Gordin at Hershey in April. I am being cautiously optimistic. I have learned a lot over the years and one is to listen to your gut when it’s telling you something. I did not always do so. I immediately trusted Dr. Santo and feel this new door has been opened for a reason so I am going to follow it. It feels right to me.

The life I lead right now is not living. I am unable to sit at all. I only leave our house for doctor appointments as it’s very painful to ride in a vehicle. I must lie in the back seat when traveling. I am unable to walk any distance and need the assistance of a cane to do so. I haven’t been able to work since May 2012. I am unable to attend any of my son’s school or sporting events. My everyday life has been severely altered. I think of all the things I took for granted for so many years and I miss all of those things terribly.

I am no longer searching for a cure, but I continue searching for something that will provide me with some pain relief. I would be so happy just to be able to walk around the block. I’d love to go out to eat with my family. I’d love to lie down at night and just fall asleep. I’d love to wake up feeling healthy. I want to have functionality back in my life. I was finally approved for social security disability after being denied the first time. I had an attorney for the appeal. It was difficult to accept the fact I needed disability, but the reality is I am disabled. This condition has affected not only me, but my family as well. I would be dishonest if I didn’t say I have days when I feel like all hope is lost, when I am blinded with pain and unable to move without crying. Regardless, I continue to have hope.

I thought it might be helpful to list all of the things I have tried and/or currently use(d) in case anyone has a question about any.

• Vulvar Vestibuletomy’s (original, plus revision)
• Hysterectomy (resulted in two additional surgeries and a catheterization to block bleeding artery)
• Emotional Therapist to help deal living life with chronic pain
• CT Guided Nerve Block
• Muscle Activation Technique
• Acupuncture
• Meditation
• White noise/Soothing Sounds
• Pudendal Nerve Blocks
• Trigger Point Injections
• Bladder Instillations
• Colonoscopy
• PN Decompression Surgery
• Oral Medication: Oxycontin, Percocet, Ultram, Neurontin, Elmiron, Hydroxyzine HCL, Klonopin, Ambien, Linzess, Senna, Prelief, Nortriptyline (no longer taking it)
• Topical Medications
• Physical Therapy
• Aquatics Therapy
• MRI
• SC Joint Injection
• SI Joint Injections

I’d also like to mention that prior to the onset of my condition I rarely took any type of medication. I didn’t even like taking an aspirin unless absolutely necessary. I had both of my children without any type of medication. I only mention this to let everyone know how high of a tolerance to pain I had. It still amazes me when I look at the amount of medications I take, treatments as well as surgeries and their inability to ease my pain on a regular basis.

I wish I had been diagnosed correctly from the start and maybe things would be different for me now. However, I’ve learned not to dwell on the past. I cannot change my choices so I must move forward with hope of one day finding a treatment that will help ease my pain. I am looking forward to meeting with Dr. Gordin to see if I am, in fact, a candidate for an intrathecal pain pump.

Thank you to all of you for bearing with me through my long story. I am so thankful to Pudendal Hope. Although I only recently registered, I’ve been following for quite a while now. Pain is a very lonely, dark place but Pudendal Hope truly brings hope during those times.

If anyone has suggestions of treatments other than what I have currently had, please let me know.

Jen

I am still shaking my head Jen, your story is so very sad, especially the unnecessary procedures. This is the tragedy, people who should know about PN and not knowing!! but they are the professionals held in such high esteem, why wouldn't we trust them? . . . .any way as you mention you don't want to dwell on the past. . . .Yes your story is sad but your attitude is great ! What sort of help was the emotional therapist able to give you? Did this help?
I was going to suggest pain management like cognitive behavioral therapy, mindfulness and acceptance but this may have been what was offered by your therapist. I am just about to embark on a similar treatment (at last) but I haven't got any dates yet. I do feel that a positive attitude (ok most days) would make the cognitive and emotional help easier to take on board; that's apart from the absolute screaming necessity and desperate hope for it to help too.
I have no input about the pain pump apart from saying I think it is a good move for you at this time. I'm not sure what else there is to go for. I hope that others will give you their own thoughts on this subject. Some people here do have them and could offer advice much better than I can.
If you do go ahead with this procedure I certainly hope it will work for you. I feel so sad that you have suffered so much.
Take care,
Helen

Thank you Helen for your very kind and encouraging words. I have been checking off and on for comments. I was so afraid no one would respond just because they wouldn't know what to say. I just want to connect to not feel so alone. My days are so long and painful. It's nice to know I may have encouraging words waiting for me or even questions someone might have about a treatment I've had done.

Somedays are harder for me to overlook the unnecessary surgeries and treatments I had, but as we mentioned, I cannot turn the clock back so I have to move forward. As patients we put our trust in "world renowned" medical professionals thinking they are the answer to our prayers. In reality we must be our own advocates and speak up when we have questions especially when you have that feeling in your gut, we all know that feeling, when something doesn't feel quite right. Unfortunately I learned that the hard way. I am no longer intimidated by any title or degree. You can be kind in asking questions without being insulting, but if they can't answer your question or demean you in any way, it's time to move on.

My emotional therapist is amazing. We do a variety of different things...breathing techniques, a lot of mindfulness, talking about my feelings, how I have to be creative to get from point A to B, etc...she hears me and that is one of the most important parts. She is an integral part of my life and I'd honestly be lost without her. My husband comes along sometimes, too.

I hope you get your dates soon and let me know what you think of your therapy and if it helps.

I hope to hear some input on intrathecal pain pumps, too. I only hope everyone realizes I'm about out of options. I researched them prior to surgery, but wanted to give surgery a chance. I am thankful I had it, but cannot wait any longer for pain relief. Even though I've been in pt for almost seven months, I continue to regress. My pain is debilitating. I'm scared and feel like I need to at least see if I'm a candidate. I don't even know if insurance covers them?? I have really good insurance, thank goodness because I don't know what we'd do if we didn't?

Thank you again Helen for responding. You have made my night. I look forward to hearing from you about your therapy.

Jen

Oh, Jen, what a story, what a catalogue of medical misadventure, what unmistakable courage you show. Has anyone had any thoughts as to how you became entrapped (so often the cause is not obvious)? Remember that it's still early days in your post decompression recovery, and that your recovery is bound to be a bit rocky, given all your body was previously put through; in some cases there may even be a worsening of pain for a time. Meanwhile, try not to hurry things along: your nerve needs rest in order to settle and dampen down the pain signals it's firing off and heal (you may need to reconsider the advisability of PT). It's a slow process, and when the pain seems to be in a perpetual flare one wonders if there will ever again be a manageable day, but pain, if not tamed, can be managed. All the very best, Stephanie

Oh Jen, I don't know what to say. I had tears in my eyes reading your post.

You have been so terribly let down by so many medical professionals, who you have trusted to help you. And still you have such courage, and such a sensible attitude, and seem so grounded and positive.

First and foremost I too would echo what Helen says about pain management, specifically cognitive behavioural therapy and such things as mindfulness and acceptance. It is so worthwhile. It does not make the pain go away of course, but my goodness it helps so much with coping. I was very lucky indeed as my GP referred me to a psychologist for this, very early in this journey. This lady helped me so much. What she did for me, turned the whole thing around for me. I would recommend it unreservedly to anybody who has chronic pain.

It is indeed still early days after your decompression surgery, especially after all the other things that your body has been through. I have had a lot of surgeries along this road and it has seemed to me that after each surgery, the recovery has taken longer...

I think that there are perhaps still meds that you haven't tried yet. If I have interpreted your post correctly then you have tried gabapentin/Neurontin without getting good pain relief and are no longer taking it, but you have not yet tried pregabalin/Lyrica. I too did not get good pain relief with gabapentin. But I'm currently getting very good results with pregabalin in combination with topiramate as you'll see in my signature. But we are all different though, some of us get good results from one medication and others from another. And I may not have interpreted your post correctly so if I have been stupid and got it wrong then please forgive me and ignore this bit!

By the way - does an ice pack give you any relief at all, either over the vulvar area? or over the sacral area? Just a thought. For many of us it is our first and best help. Although not very convenient. (I find that at first it hurts, over the vulvar area - grit one's teeth type hurting - but then it all gradually goes numb, and numbness is bliss...)

I too think that the pain pump can only be a good move for you. I think that you have had far more pain that anybody should have to deal with, already.

Wishing you a better future.

Stephanie,
Thank you very much for your words of encouragement. I just wrote an entire post to you and it disappeared?? So here I go again. If the other shows up, sorry..tried to write in this about the same as the original.

I broke my tailbone in '96 and also fell a couple of times on ice after that, landing directly on my tailbone. The medical professionals have said most likely between my tailbone fracture, falls and vaginal surgeries, all most likely played a part in it.

You are not the first to question whether pt is a good idea or not at this time. I am going to talk to my pain management doctors (currently have two with another to be added in April) about the possibility of just needing to rest my body. Dr. Echenberg is encouraging pt because his concern is I've lost so much mobility he doesn't want me to lose more. I love my pt so I know if I need to take a break, she'll be there for me when/if the time rolls around again. Honestly, I could be a pt after all of the years I've been going. They should just give me my certificate....need to keep some humor in my life. (Haven't figured out how to use the "funny faces" but I will...I have lots of time on my hands). I am also in aquatics pt right now, too. Yeah, I need to address this.

I know Dr. Conway told me it would take around two years to see if my nerve would heal and begin to function properly. It's very difficult when the pain is so intense to remember that, though. I do not have many tolerable days, but when I do I soak it all in. My tolerable days do not give me much functionality, only allow me to rest more comfortably. One of my biggest issues is all of the meds going in my body yet not receiving much pain relief, if any, which is why I'm interested in consulting about a pain pump. Assuming it would work, the medicine would go directly to the source as opposed to all through my body. Only time will tell, but that is the story of my life...waiting.

I noticed in your signature you had surgery. I would really like to ask you some questions, but if you would rather not post on the board, you could pm me. I see that you did not have any improvement and you still cannot sit. Are you able to walk any distance or stand for any length of time? How much functionality do you have in your life? What do you do for pain management? Are you reliant on everyone, as I am, or can you manage ok on your own....for example, drive a car?

I look forward to hearing from you.

Take Care,
Jen

Calluna,

Thank you for taking the time to post and give me words of encouragement. It's amazing what that can do for one's spirits. I have to completely agree with you and Helen. I do have a therapist (not sure if you read that in my post to Helen) and she is amazing. Mindfulness and acceptance is part of the journey. She has helped me tremendously. I'd be lost without her. You are correct, though, mindfulness and even acceptance do not take your pain away, it only helps you deal with it a little better. Saying that though, I'd would by lying if I didn't tell you I have days when I just cry and beg for some relief. I think it 's only human, but I put it out there so if anyone is reading they know that I do have meltdowns and they can be big one's especially when my pain is at it worst. I live minute to minute, hour to hour and then day by day. I have learned you can accept things for what they are, but it doesn't mean have to like it or give up hoping for something better.

Ice is my very best friend. I couldn't manage without it. I should have put that in my story because it's a huge part of my life. I even bought a case of those ice packs you sqeeze to make cold for trips to the doctors. They don't last very long and aren't as good as my cold packs I use here at home, but they help.

I actually do take neurontin. The only medicine I listed that I do not take is Nortriptyline. I think it may be time to re-evaluate my medication especially the neurontin to see if there is something better suited for me. I agree, what works for one may not work for another. I do not like the side effects of neurontin, but I just try to deal them the best I can. I am familiar with Lyrica as it's like the "new version" of neurontin (at least that is what one of my doctors said) and it's in the anti-convulsant family, too. I am not familiar with Topiramate. I looked it up and noticed it's in the ant-convulsant family too, but also mentions a lot about weight loss? Is that to counteract the possible weight gain Lyrica causes? I'm just not familiar with it, but I'm assuming it's very safe to take two anti-convulants as you are taking both? I am so happy for you that it is giving you relief. I wrote both names down to talk to my pain management doctors about. Thank you very much for the suggestion. I do not like the amount of pills I am putting in my body, but I wouldn't be as upset about it if I was feeling as though they were helping me. Obviously my pain medicine is helping at times to give me some ease from that awful burning pain, but I would hope there would be something to allow me regain just a little of my life back..hence my reasoning for consulting about the pain pump.

Thank you again and I hope you continue to have relief. Your words of encouragement go a long way.

Take Care,

Jen

Hi Jen,
Thanks so much for sharing your extrondinary story with us. You certainly have been through a lot and I'm glad you've reached out to us. I echo what the others have said about admiring your courage, positive attitude and proactive approach to less pain. I'm really sorry you're still struggling after everything you've been through.
Has Dr. Conway had any comments about your continuing, burning pain?

JMIL wrote:She ordered an MRI. The results showed inflammation and arthritis in my SI Joints. She said it is extremely rare for someone my age (I’m 41 years old) to have arthritis in the SI Joints. Dr. Santo performed an SC Joint injection in March.

I too have severe SIJD and have also heard many times that it's extremely rare to have arthritis in that joint (I'm 47 years old). The thing is though, it's not "normal", arthritis that occurs with aging. It's more from the stress on the joint due to a pelvic misalignment, causing the joint to tear and leak synovial fluid, which ends up ossifying.
I wish you the very best with the pain pump and the SIJ injections. Please come back to let us know how you're doing.
Hugs,
Karyn

Karyn,
I am so blessed to have so many wonderful people respond to my post. The encouraging words are so helpful and I can't all of you enough. To answer your question about Dr. Conway and my continued burning...yes, I have spoken to him several times since surgery. He continues to tell me it's part of the process and we can only hope for a good outcome, but there aren't any guarantees. I appreciate that he calls me back promptly when I place a call to him, I only wish there was some magically way of predicting the outcome without the wait. As I've said time and time again, waiting seems to be the story of my life. Regardless, I refuse to give up hope. I accept that my life is in a place I never expected to be, but I don't like it. Does that make sense? I think I can not like something, but except it without giving up hope. Hope is never giving up on finding some type of relief so I can begin living again.

It seems we have a lot in common. Have you ever had SI Joint injections? I have my first ones on Monday. I had an SC Joint injection a few weeks ago. My tailbone was numb, but my pudendal nerve and SI Joint were wreaking havoc in me. Prior to my surgery I was unable to sit because of the extreme vaginal burning. Now even if we could ease the vaginal burnging (which hasn't happened) I still couldn't sit because I now have this awful tailbone/SI Joint pain. It seems like a vicious cycle. I get one injection or nerve block and it numbs one area, but the other two areas are causing so much pain I'm unable to reap the benefits of numbing relief of the one injection....again which is why I'm so curious about a pain pump. I need all three area numb or at least some ease to my pain. I am desperate for relief. I continue to ask, how much pain can a body take? It surprises me at times because I think it's not possible for my pain to increase and then it does, which brings me back to how much can I take and not just my body.

How is your day to day living? Did you find relief from your surgery with Dr. Conway? Are you still in pain and if so how do you manage it? Are you able to "function at a more normal" level in life? Are you able to drive, work, walk distances, stand for periods of time without significant increases to your pain? Please feel free to pm me if you do not want to post on the board. I just have so many questions for so many people on this site including you. It's like a whole new world has opened. It's been right in front of me all of this time, yet I never opened the door. Maybe this was supposed to be my time and not before, regardless, I am ever so grateful to all of you for your encouraging words.

I will continue to post updates as my appointments come along.

Take Care,
Jen

JMIL wrote: I accept that my life is in a place I never expected to be, but I don't like it. Does that make sense? I think I can not like something, but except it without giving up hope. Hope is never giving up on finding some type of relief so I can begin living again.

Yes, hon. That makes perfect sense!
I agree with you about the waiting. IMO, it's just as bad as the pain, if not worse. I'm not surprised by Dr. Conways repsonse to you. But I guess I'm concerned about all the vulvar/vestibule surgeries you've had and what role they've played with your current situation and nerve damage.
I did improve with Dr. Conways surgeries, but am still disabled due to other conditions (SIJD, Piriformis Syndrome, Tarlov Cysts, hip pain, other pelvic neuropathies, etc ...).
No, I have not had SIJ injections.

JMIL wrote:I continue to ask, how much pain can a body take? It surprises me at times because I think it's not possible for my pain to increase and then it does, which brings me back to how much can I take and not just my body.

I've also asked this very same questions many times. I have a saying: It can always be worse.