New Mom, New PN Diagnosis, Incredibly Scared

[NewMom]

Hello Everyone,

I'm a newbie so I hope I follow all the right protocol. I posted my same message on tipna so I hope I don't offend anyone by doing that, but like all newbies, I'm really scared and looking to get as much info/guidance as possible. Thank you.

I'm 32 years old and a new mom (beautiful baby boy born 3 months ago). I had an extremely traumatic childbirth which included 5 hours of active pushing, vacuum extraciton, 3rd deg episiotomy and 2 vaginal lacerations (separate location from the episiotomy). Unfortunately I was on placed on prednisone by my rheumatologist during my pregnancy because I developed vasculitits. My delivering doctor said b/c of the prednisone, he was unable to suture up my lacerations since it made my tissues "mushy". I was hemorrhaging pretty bad so he placed an interuterine balloon to stop the bleeding (although I still needed 2 bags of blood transfusion). I was in the hospital for 9 days total to monitor my condition.

At my 6wk postpartum visit with my doctor, he couldn't figure out why I was in so much pain still as he said everything had healed up. I was crying hysterically from the pain and unable to sit, walk or stand without crying. To make a long story short, I've been referred to specialist after specialist (mostly OB/GYNs, but also to pain docs, PT, rheumatologists) before finally given the diagnosis 3 days ago of pudendal neuroapthy. Although I felt in my gut that I had PN after coming across all the symptoms during a google search a couple of weeks back. My pain is pretty much localized to my left vaginal wall where the lacerations occured. In fact when one GYN pushed on the scars, I nearly jumped out of my skin. All my specialists have been at UCLA and the best of the best, yet no one has been able to help me or really direct me on what to do next. The only info I have found helpful is from reading posts on tipna from members (which I am so grateful for).

My husband and I live in Los Angeles although since I've had my baby we've been staying with family in Orange County (about 1 hour away) since I am unable to care for my baby due to the pain. This alone has been devastating enough to me as I had been wishing for a baby for a long time. Anyway, sorry if I'm babbling - I find it hard to be coherent due to the Nucynta I am on. My current medications are Neurontin 2400mg/day and Nucynta 50mg every 6 hrs. Although at my next appt with my pain doc, I will see if there is anything else as the pain is still very bad.

I hope I included enough information about my case - I'm desperately looking for guidance from you all on what do to next as my docs have given me none. I plan on giving Dr. Sheldon Jordan a call tomorrow to make an appt although he does not accept insurance (quoted $618 for just the initial consult, not sure how much injections and such will costs). I was the breadwinner of the family but have been unable to work since my delivery. I'm terrified of draining our finances but I try to push that into the back of my mind since if I don't find a "cure" or at least make myself functional, I have no hopes of working/making money in the future.

Currently I can get my pain levels to a 5 or 4 by laying down but if I try to sit longer than a few minutes, it can very quickly reach a 9. And this is with my current meds. Nucynta works better since it is a narcotic, however I'm finding that it wears off after 1-2 hours so I will have to discuss other options with my pain doctor. I'm unable to drive at all and pretty much stay in bed most of the time. I'm incredibly terrified of my situation (as I'm sure you all were) and want nothing more than to be able to take care of my baby and take part in the joys of motherhood. And hopefully eventually go back to work to support us financially.

I'm not opposed to traveling (e.g. Houston or Phoenix or even France) if that is the best option and I'm not opposed to surgery. I want to do whatever is best and whatever will get rid of my pain as much and as permanently as possible. Thank you in advance for whatever advice you can give a really scared newbie like me. I so appreciate all of your help and apologize for the long post.

[Celeste]

Welcome, and I'm so incredibly sorry for what you're going through. It is NOT supposed to be like this.

I also got PNE from childbirth, also on the left side. I didn't have nearly as physically traumatic of a delivery as you did. I had a second degree laceration on my left side, and for a while even I thought the pain was from the injury or the repair. However my pain was deeper, closer to the bone, and any kind of insertional pressure not only made me want to scream, it would flare things up worse for a couple of days.

It's good that you've been learning about your options. None of us can tell you who is the best doctor for you to go; we all have a preference and a reason for feeling as we do. I agree that trying to get it covered under insurance is pretty important if at all possible. Some plans (Kaiser, for one) will not cover the surgery, period; that's why a lot of patients still go overseas for treatment, because even out of pocket the prices are really reasonable compared to out of pocket with the increasing number of providers in the US.

There is help available, and I'm glad that you got a lead on the nature of the problem so quickly compared to others who go years between onset and treatment.

[calluna]

Hi NewMom - I am so sorry to hear you are in such pain, it sounds as if you've had a very rough time.

With regard to the choice of a doctor - there is a lot of helpful information on the HOPE home page - here - including a list of doctors.

For immediate help, many of us rely on ice. It is easy to discount this as it is such a simple remedy, but it really does help. If you don't have an ice pack, you can use something like a pack of frozen peas and wrap it in a teatowel, use this for no more than 10 minutes in every hour. Also, please do avoid sitting. For many of us, this has now become second nature. Lots of us have found different cushions that help, too. This is a good idea, for when you absolutely have to sit. Lifestyle changes like this have helped me more than anything.

I do hope that things improve for you soon - sometimes it can help a bit just to know that you are not alone.

[Lernica]

NewMom,

I'm very sorry to hear about everything you've been through. Like you, I had very long second (pushing) stage labours for my three kids. You are indeed fortunate to have received a quick diagnosis since it took ten years for me to obtain one. Now you can work at getting better! I am curious to hear which of the (many) specialists you saw ended up diagnosing you. One day in the future, the nightmarish last three months will be a distant memory and the only memory that will remain is that of your beautiful baby.

I have never opted for a surgical release of the pudendal nerve and so I can't give you any advice about that. I manage on medication, PT, minimizing sitting time, icing, resting, etc. But my pain is much less than yours. The one symptom we share is an inability to walk. Since my diagnosis and treatment, however, the walking is getting easier and less painful.

You must find yourself a good doctor or team of health care providers who specialize in treating all aspects of pudendal neuralgia, from medications, to PT, to surgery. The list of doctors on this website is a good start. Also, since you are taking opiates you must be careful not to get constipated, because straining will further compromise the nerve. Even though I eat a very good diet, full of fruit and veggies, I still need to take a regular dose of Lactulose to keep my stools soft. Others on the forum may have other suggestions.

You have many friends on this forum who will help you with your treatment choices and with managing your pain. Read as many topics on the forum as you can, and discuss what you've learned with your healthcare providers. You may find that you must be your own advocate to receive optimal care, or risk falling between the cracks.

You will get over this horrible phase NewMom, but it will take time. A damaged nerve takes a long time to regenerate and heal. You must be very patient in the months to come. We will always be here with you on your journey to wellness.

Warm regards,

Lernica

[NewMom]

Dear Celeste, Calluna, and Lernica,

Thank you so much for your words of encouragement and support. Reading your posts touched me and brought me to tears (although crying seems to be the main thing I do these days). I feel so alone most of the time even though I have a very loving and supportive family. Having this website and forum with people who know exactly what I'm going through has been such a big help. I'm so thankful for you all. You've helped to raise my spirits and I'm so sorry that any of us have to go through this.

Celeste - I'm so sorry your childbirth was very traumatic also. What should be the happiest times in our lives is marred by pain. I just wish to be able to hold my baby, change his diaper and feed him. The fact that you have been cured brings me so much hope and I'm very grateful that you stay on to support and give hope to other sufferers. And yes, thankfully I have PPO insurance (for how much longer I'm not sure) so I believe they will cover the surgery if/when it comes to that. I'm hoping for treatment as soon as possible while I still have health coverage. Dr. Jordan doesn't take insurance, but my out-of-network benefits said they would cover a small percentage of his fees. I'm also thankful that I got a diagnosis within months instead of years. Although it took quite a bit of persistance and research on my part and asking the doctor if my pain was from PN. I'm just amazed that so many of my specialists never even considered the diagnosis despite my classic symptoms.

Calluna - thank you for the list of doctos. I have gone over that list so many times and trying to read as many of the posts I can about people's experiences with each doctor so I can make the best decision. I just don't know exactly where to start and with what type of doctor but I guess Dr. Jordan is a good place since I've read positive posts about him. All of my OB/GYNs don't seem don't seen to know what to do so I feel like I've been passed around so many times. Currently I have no one to manage my case or to order tests.

Should I try to keep looking for an GYN who is willing to manage my case or do people have a different type of doctor that usually oversees everything? It feels like the only doctor who wants to see me on a continual basis is just my pain doc. Also, should I see about getting an MRI or CT scan of the pelvic area? It seems that patients have than done as part of care/diagnosis. Thank you for any answers you're able to give. I have tried both ice and heat packs but unfortunately I didn't notice a difference. I don't know if it's because my laceration scars are fairly deep into the vagina? And yes, since I've been diagnosed, I'm avoiding sitting as much as possible! I probably overdid it in the beginning since most doctors told me my pain would eventually go away and just resume normal activities. I can't tell you how many times doctors told me "Just give it time". Well I knew something was wrong and not normal because pain never decreased, even incrementaly.

I did purchase 2 different seat cushions - one is a foam wedge with a "U" cut out in the back and the other is the more traditional toilet seat/donut shaped one. With either I still can't seem to sit more that a few minutes though. And thank you Calluna, it does help SO much to know that I'm not alone.

Lernica - it is such a shame that it took doctors 10 years before diagnosing you correcty. I hope that you are doing okay and sorry to hear that you had to stop working. I hope that by treating in the early stages it will give me a better prognosis? Oh, and the doctor who finally gave me the official diagnosis is an OB/GYN specialist and head of the pelvic pain program at UCLA. However she attempted to give me a vaginal nerve block which did not relieve my pain at all. In fact it has increased my pain levels quite a bit and I really regret allowing her to do the injection. She wanted me to come for weekly injections if I felt relief. From what I've read from other posts, no one else has vaginal injections done and other PN sufferers have said it is best to let a neurologist do nerve blocks. Don't know if this is true, but no more vaginal injections for me! These forums are definitely helping me to make more informed decisions about my treatment and care.

And I'm totally on the same page with you regarding avoiding constipation. Since I was on such potent pain meds after delivery and currently on Nucynta, I've completely revamped my diet to include a lot of fruits and veggies and other sources of fiber. I also take Lactulose along with Colace, but Senna at night seems to work the best for me to keep me regular. Thank you for the tips though!

Finding a good doctor who is knowledgable aout PN seems to be the hardest issue. I've called so many doctors and all have heard of PN but said they weren't really qualified to treat it. So frustrating but I'm sure you all have been there! I'm really hoping Dr. Jordan will be the one who can help me.

Thank you again So, SO much for all your words of support. I can't even begin to explain how good it feels to have friends on this forum to help me not only with my medical decisions, but to help me emotionally also. My newborn son has been the only thing that has kept me going through all this pain and depression. I hope for the day where we can do normal family things like a walk in the park or a day at the zoo. I pray that day comes soon. Thank you everyone - much love to you all.

[TracyB7777]

New Mom, hang in there!! I am so encouraged that you were able to get a diagnoses so quickly. As for someone to manage your case, after 15 months I still don't really have one doctor that manages it for me. Although my DO is the one willing to, I just need the others to stay in contact with him. As for cushions, so far the only one that works for at least a little while (maybe about 20 minutes of sitting) is a Boppy. You may even already have one for your adorable young man. If you don't it may be worth picking one up. Even if it doesn't work for your sitting you may be able to set him up in it next to you on the bed to spend some quality time together. Please keep us posted. I've found this group to be fabulous support!! I don't know what I would've done without all of them over the last couple of months.

Tracy

[NewMom]

Thank you Tracy! I do have a Boppy (for my son) that I used in the beginning as a seat cushion before I got the Wedge-ease and donut cushion. I wish we both could sit for more than a few mintues though. So as of now, the bed is my best friend. I'll definitely keep you all posted since I'm pretty much confined to the house anyway! This group does seem to be quite incredible!

P.S. How do you include your medical history at the bottom of each post? I tried placing under "interests" in the profile section but not sure if it worked. Thanks!

[HerMajesty]

Dear New Mom,
I am sorry you went through all that!
Your situation seems so similar to Celeste's, I think it would be encouraging for you to read her success story here: http://www.pudendalhope.info/forum/view ... f=74&t=897
There are two things to search here for help in selecting a Doctor: 1st, search the various surgical techniques available. The terms I am aware of are TIR approach and TG approach, maybe somebody else could supply more terms. There are a lot of postings on this board about which Docs use which approach. Also, search the names of each Doctor individually; you will learn a lot about other patients' experiences with particular Docs.
All the best to you and congrats on your baby boy

[Celeste]

To put in your medical history, go to User Control Panel, go to the Profile tab, and click on Signature to get to the screen where you can add whatever is pertinent that you don't want to keep repeating.

Any time a woman has a bad delivery, it's emotionally traumatic apart from physical trauma. For some it causes post traumatic stress disorder, which is like depression but with nightmares and flashbacks, as well as intrusive thoughts. If that sounds like any part of your depression, there's a really good book called "I Can't Get Over It" which has some really helpful strategies you can do without a therapist. I went to a postpartum support group and my issue was a bit more than others were dealing with, but it was just really great to be believed that something was wrong. That sounds small, but it was just huge.

Ob-gyns really don't treat pain as a rule; once in a while there will be someone who decides to take it on, but as far as the general job description goes....no. I'm sorry that the unguided block made things worse; I had that happen, too. I'm just not a fan of those.

The CT and MRI are good for ruling out other more easily fixable problems and can be a screening prerequisite for some doctors. If you get them done and they're negative, don't feel bad. It's pretty much par for the course and helps some doctors "rule in" PNE.

[AliPasha1]

Hi Newmom,
Congrats on your new baby boy.I would highly recommend that you have 3 Tesla MRI with Dr. Hollis Potter at Hopital for Special Surgery in NYC and see what's exatly going on in your respective Pelvis.You can proceed from there whether you are a candidate for TIR or modified TG approach or whether you are having some other form of Neuropathy.Dr. Hollis Potter at Hospital for special surgery does take insurance.Her link is as follows.

http://www.pudendalhope.org/node/58#Potter


All the best,
Ali