Not yet diagnosed with PN

[Faith]

My story is kind of long and confusing, but I will try to share. In November 2008 I started having pain with intercourse and vulvar swelling/irritation. I found out in December '08 that I was pregnant with my first child! I went through my pregnancy with continued vulvar pain and swelling. I saw a vulvar specialist who diagnosed me with vuvlodynia related to venous distention from hormonal changes in pregnancy and felt like it would resolve post childbirth. In August '09 I had a healthy baby girl vaginally with a second degree tear. Thankfully post childbirth all my vulvodynia symptoms were gone although I had a good bit of pain with my tear site. 5 months postpartum however, I was unable to have intercourse without pain (I was still breastfeeding) and felt like my vagina was "falling down" when I tried to exercise (i was an active runner pre-pregnancy). Went back to my OBGYN who used silver nitrate to burn off scar tissue and referred me to a pelvic floor PT. The PT did manual therapy and ultrasound to break up scar tissue. Intercourse became less painful although I would have burning afterward sometimes. I no longer had the "falling down" sensation either. The PT found I had SI joint dysfunction so she mobilized my SI using what I now know is a high velocity mobilization a couple of times. I was also weaning from breastfeeding at this time. After the second time I started having intense sacral pain and burning and sitting became painful. I went to a phsyiatrist who treats pelvic pain and she diagnosed me with pelvic floor dysfunction (PFD) and said my SI joints were hypermobile and I had major core weakness. She started me on Elavil and an anti-inflammatory. I started PT with a new pelvic floor PT who was less "harsh" and although I would have flare-ups I was able to keep my pain under control as long as I didn't sit for very long. I started having feet pain though as well and no one knew why, but I think it was because I was standing so much to avoid sitting.

I decided to go to a physiatrist out of state who has written journal articles about PFD and pelvic pain.She started me on Desipramine (instead of Elavil) and Neurontin as well as Mobic. She thought I might have disc damage at L5/S1, but my MRI came back normal. She still suggested a nerve root injection at S1 because of my burning in my feet and history of vulvodynia. After the injection my symptoms really flared. I started having other joint pains (in my hands and neck and hips). My muscles in my neck/shoulders became tight and had painful knots in them all the time. The Dr. thought I was developing myofascial pain secondary to this "central nervous system" pain I have. I have had some less painful days since the injection (August 2010), but really I have been worse since then. I have particularly gotten worse the last 2 weeks. I always have flares around my period, but this time it hasn't gone away like normal. I had bloodwork done in September because I was having headaches, fatigue, and all the myofascial pain. My ANA (which tests for autoimmune disorders) was positive and my thyroid is low. I am waiting now to see a Rheumatologist and a primary doctor (i didn't have one prior to this because I was never sick). So I think I may have multiple issues. I wonder if I don't have fibromyalgia too (all because of this pelvic pain!). Sometimes I have backpain (over my SI joints), sometimes my butt and pelvic floor muscles are extremely tight, but I always have pain with sitting. And right now my sitting pain is bad at my ischial tuberosity/obturator internus area bilaterally which makes me think I have pudendal nerualgia. I am pretty thin so it feels like my "sit bones" are just digging into the chairs, and my hip bones even hurt when laying in the bed, but I don't think all of this can be because I am thin.

So my questions for you guys:

Cushions? I desperately need a way to sit at least for a few minutes every once in a while. I have tried some, but none of them take the pain away from my ischial area. I can't lay in bed all the time. Plus I have pain while I'm in bed on my hips too!

Medications I am Neurontin 600mg and Desipramine 50mg at night. Any other meds I should try or increase? Until lately I rarely had to take pain meds, but now I am in such a flare (basically I hurt all over) I need Lortab or Ultracet to make it through the day.

Doctors I really think I just have pudendal neuralgia, not a true entrapment based on my history and symptoms so I do not really want to even think about surgery at this point. I live in Kentucky and the closest PN PT is about 2 hours away, wich isn't feasible at this time. I am thinking about trying to go to one of the PN docs. Any recommendations? I am looking mostly at Dr. Antolak, Dr. Conway, Dr. Marvel, or the Houston team. Since I had such a bad flare with the S1 nerve injection I don't know that I want a PN block, so is it even worth going to these doctors? I don't know how I will even make it there because I can't sit, but I am hoping I will soon come out of this flare.

Webiste How do I list my mini history and things I've tried under my posts or update my picture/location?

Thank you for reading and thank you for this website. It has been encouraging although a little anxiety provoking at times. I try not to read too much at once. I am a strong Christian though and if it weren't for my faith I couldn't make it through each day.

Faith

[Celeste]

To add a signature line, go up to User Control Panel, click on Profile tab, and on the left click on Edit Signature. It will give you a block where you can write whatever you want it to say.

Since you say you aren't open to a PNE diagnosis or surgery, and you are being treated by with PT and pain meds at home...I share your feeling that there is no reason to bother with a PNE specialist. They are really for people who are at the end of their rope with getting no relief from meds or PT, who want to take a shot at surgery to see if that will relieve their pain. But if your feelings change about having PN vs PNE, they'll be there for you.

[Judith]

Faith, welcome and I hope you find some answers and support here. as for cushions, you'll find all sorts of individual answers here and we've all gone through our share. What has worked best for me, believe it or not, is I took a vinyl toilet seat and took the lid off of it and then I got a thin U shaped cushion and strapped it to that. Then, a friend sewed a little tote bag for me and that is what I used when I was real bad and I carried it around with me like a tote and then used it to sit on. I still use it to drive. Everyone is so different, but protecting the perineum and sit bones is certainly of importance. Look at the seating section and you'll find all sorts of suggestions.

Judith

[HerMajesty]

Faith,
If you look at my signature summary below you will see, S-I dysfunction was responsible for ALL my symptoms. I have residual damage after correction because my S-I was out of place fo a full 25 years. But I do suggest that you not minimize the importance of the S-I as a primary underlying cause of your condition.
If you have not already been informed of this, pregnancy hormones cause ligament laxity, for the purpose of preparing the pelvis for childbirth - thus a pregnant woman is very prone to pelvic joint injury (this is not how I was injured, but it is a common cause).
Core weakness is an overblown cause of hypermobility - quite often hypermobility is in compensation for HYPOmobility in another part of the pelvis. Correct the pelvic joint that is stuck, and the part that is hypermobile becomes normative. This is what happened to me...I was told I had a hypermobile pelvis that caused chronic anterior rotation of the ilium, which would recur every time it was corrected. This turned out to be due to a core pattern of hypomobility. I had been considering S-I fusion, but when the hypomobility was corrected it turned out, I was not hypermobile at all. Not all pelvic floor PT's have the skill to locate and correct a core pattern: PT manual therapy is a small subset of PT which is more attuned to joint manipulation.
The fatigue and headaches are likely due to kinetic compensation in the neck / cervical vertebrae. I started having migraines at the same time I got interstitial cystitis from S-I dysfunction, as a teenager. The pelvis is the kinetic center of the body, and a malposition there will lead to compensation up and down the kinetic chain. How far can you turn your head? I was so locked up in the neck, I could barely turn mine at all...it corrected spontaneously without being touched, when the pelvic joint dysfunction was corrected.
Based on the findings you described so far, I would, based on my own experiences, suggest you focus on the S-I as the central issue in your care. Imaging tests are fairly useless for joint dysfunction as it is a movement dysfunction and will not show up in still pictures. However, IF it does show up, it is likely to do so as an unusually wide symphysis pubis - if you have the films of your pelvis you might want to take a look at this (compare it to generic normal films online).

[Faith]

Her Majesty,

Are you saying you had one SI joint that was hypermobile and the other side was hypomobile? How does a PT correct a core pattern of hypomobility? My SI has been "realigned" a million times but sometimes I am back out of alignment even before the PT session is done. Did you ever have SI joint injections? So was all your sitting pain from this SI joint dysfunction and now you can sit normally again? Sometimes I have pain over the SI joints though and sometimes I don't, but I always have pain with sitting. Is that normal if SI joint dysfunction is the cause of my PN?

I can turn my head pretty much normally but sometimes when I do it "cracks" and pops a lot.

It's interesting you say that about the symphysis pubis. My xray showed a larger than normal gap, but that was taken about 8 months after having my daughter.

Judith,

Thanks for your advice. I have thought about a toilet seat because that is the only place I can sit without pain. I have looked at the seating section, but the only cushions I see recommended are the IC cushion (which I've tried something similar with no relief) and a slanted cushion (which I've tried). Surely there are other options out there. Where did you get your U-shaped cushion? I have Googled U-shaped cushion, but I can't find any. Could you possibly upload a picture of your seat? I'd really like to see it.

Celeste,

Thanks. I am not against getting a PN vs. PNE consult I just don't really know what to do. I am definitely getting towards the end of my rope (especially if I don't come out of this flare) I just know I also have SI joint problems so I don't know what kind of doctor to go to. Do you think it would be good to be evaluated by a PN doctor? Did you have a painful recovery from your surgery? Are you really 100% normal again? That's so awesome!

[HerMajesty]

Faith,
Here is the site section on seat cushions, it can be difficult to locate:
http://www.pudendalhope.info/node/45
And I took the last concept on that part of the site and modified it to make this for myself:
http://www.pudendalhope.info/forum/view ... f=22&t=116
I am fully functional including with sitting, but I still have some discomfort and would have more without meds - so I use meds (neurontin, ultram, valium), the cushion for driving, and topical capsacin to keep myself more comfortable . However like I said, we are talking in my case 24 years of uncorrected pelvic injury, from age 14 to age 38 - I think you might have considerably less residual damage, if any, if you don't live like this too long. My symptoms manifested 1st as interstitial cystitis and migraines. In the 1980's interstitial cystitis was thought to be autoimmune not biomechanical, and migraines were just something that happens, so nobody looked for joint injury.
There are many possible patterns of pelvic joint dysfunction: Even though people generally refer to it as "S-I dysfunction" there are actually 5 joints in the pelvis, 2 sacroiliac, 2 hips, 1 symphysis pubis. There are numerous patterns of dysfunction possible, as each joint can get stuck in a number of different psoitions. So it was more complicated than 1 side hypermobile and 1 side hypomobile. The findings listed on my report is as follows:

-significant depression of symphysis pubis fibrocartilage
-posterior glide fixation of the sacrum
-left upslip ilim fixation
-right downslip ilium fixation
-transverse plane pelvic, hip, and trunk (not S-I) rotation
-restriction of right hip extension
-fibular joint restriction
-core pattern of SIJ and symphysis pubis dysfunction involving anterior rotation of the right pubic bone around a superior transverse axis
-lateral left ischium, medial right, and external rotation of the left lower hemipelvis, internal rotation of the right

This is a little more complex than 1 side hypo and 1 side hyper, LOL, if it were this easy your pelvis would have been fixed a long time ago. It can get caught up in a lot of places as you can see. I never had SI injections; I got my pelvis manually assessed and manually corrected. PT Manual Therapy uses a manual assessment technique called the Spring Test; Jerry Hesch, who corrected my pelvis and whom I now work for (and I try to keep the commercialism to a minimum), uses an enhancement of this called "Springing With Awareness". This is a manual method of testing how motion applied by hand travels through the joint, to identify if the joint is physiologically stuck and if so in what direction. Pinpointing this is what is important - as you have seen through experience, there are various ways to use active manipulation or a passive force such as stretching or applying pressure, to correct a joint dysfunction - the problem is, if the entire pattern is not identified and treated in appropriate sequence, the dysfunction will just recur. So manual assessment skills are everything.
Might I suggest printing this information and giving it to your PT - she might be able to use it appropriately to research how to better treat you. These issues are discussed frequently on IOWHPT and other List Serves, these are professional message boards where practitioners exchange information.

[Griff522]

Faith, I am also looking for a diagnosis from a informed dr so I can relate. I saw a commercial this morning for this cushion and it looks interesting. Here's the website http://www.trytotalpillow.com

Hermajesty, I've been to chiropractor and a pelvic pain pt. Would they have been able to tell if I had SI problems

[HerMajesty]

Griff,
What mode of assessment did the Chiro and PT use on you? what I mean is, can you describe what they did to assess you (x-rays, watching you walk, hands-on and if so what kinds of hands on, etc?) Some Chiro's and PT's are adept at diagnosing S-I, and some are not. The one time I went to Chiro, he totally missed my S-i and instead focused on the fact that my neck was locked up. Of course my neck was locked up (I know now), in kinetic compensation to the pelvis. So he adjusted my neck, it got looser, and I wound up with a low backache for the 1st and only time in my life, as my pelvis simply compensated elsewhere. So regarding the Chiro, did he assess your pelvic region and if so how? They often rely on x-ray which is not sufficient.
My pelvic floor PT did diagnose me with S-I dysfunction based on stance, gait, and palpation of bony landmarks. This is sufficient to diagnose an assymetrical pelvic joint dysfunction, which is what I had. It is not a sufficient method to diagnose a symmetrical pelvic joint dysfunction - these do exist. Some pelvic floor PT's have an interest in assessing and treating the pelvic joints, and some do not. Some are more skilled at in than others. As I mentioned prior, the only method to diagnose a pattern of joint dysfunction without missing anything, even symmetrical dysfunction, is PT Manual Therapy spring testing. This involves manually putting a force through a joint from various angles, to assess whether or not the joint moves normatively. Here's a vid of a focused assessment on a downslip ilium, to show how it is properly diagnosed - hopefully this will shed more light than any verbal explanation I can give:
http://www.youtube.com/watch?v=nXfcccOj-XI

[Griff522]

Thanks for the video link. I wanted to see what happened after he adjusted him though.

The chiro did x-rays and did some soft tissue work. ARC is what I think it's called.

My pt did measure my range of flexibility and it was very good. But neither of them had me walk for them.

I had a pretty nasty fall on my tailbone when I was about 8 yrs old. Nothing was ever really done about it. It took me about a week before I could really walk without pain so I now wonder what kind of damage that did.

[HerMajesty]

Griff, it is a 4 part series, that one with the assessment was #2, plus the mother of the child made a video response telling the story of the boy's care, so here are all 5 videos:

part 1 http://www.youtube.com/watch?v=a0C3qFzRm6k
part 2 http://www.youtube.com/watch?v=nXfcccOj-XI
part 3 http://www.youtube.com/watch?v=WgR7BX_cgug
part 4 http://www.youtube.com/watch?v=JGQ97rZ7BBg
mom's video http://www.youtube.com/watch?v=HJ5NL01lmt0