Looking for advice

[sgrandy]

Well, I'm not sure where to start...I used to post on the old pudendal.info forum under the same username but I haven't posted in over a year but I read periodically to keep up with what was going on in the community. My problem is unusual in that my pain starts primarily in the sacrum and I do not have pain all the time despite having this problem in one variation or another for the past 5 years (I'm 27 so for the majority of the years of my life that are supposed to be "carefree"). I can go for periods of time with absolutely no pain and I feel just like a "normal" person, living a normal life and not giving much of a thought to pain. The last pain-free episode I had was from September 2009 to March 2010...I had gone back to school and was sitting *a lot* but this didn't present a problem for me at all. I had a mini-flare in March that lasted a week and I then returned to "normal" until August of this year. Ever since then I've had a couple of mini-flares but nothing that phased me or held me back from doing what I wanted to do. I am now in another flare after being pain-free and despite the fact that this is not the worst pain I have been in (not even close), I find this very distressing to the point where I have been crying off and on all day.

Sometimes my flares consist only of a bit of sacral pain/pressure with no involvement of the rest of the pelvic area where as at other points in time, the pain spreads from the sacrum and I feel soreness/pressure vaginally, mostly on the left-side. There is no burning and generally no sharp pains to speak of. This can sometimes involve a pulled muscle feeling the back of my thighs (or just one thigh, depending!). During my "flares", I feel better with a full bowel and it almost seems like I feel the sacral pain more once my bowel has been emptied. The sacral pain can lead to mild bladder discomfort (feeling like my bladder hasn't totally emptied but I combat this by drinking a lot of water and this seems to help). I am still able to have sex with my husband during flares as it isn't unbearable but obviously, not ideal either. I sometimes also have a clunking feeling in my sacrum if I bear down. Apparently, it was seen in an x-ray that my SI joints are "narrowed" and something about my tailbone being turned at a slightly odd angle (no history of falls, childbirth etc). I have "tender" points all over my hips, thighs and lower back that are present even when I am not having a "flare" or sacral/pelvic symptoms. However, you actually have to press or touch the tender points to illicit any pain and my husband can identify them when he gives me a massage. I can't say that sitting necessarily makes a flare worse but it doesn't feel "normal" as it does when I am not in a flare.

Anyway, I just don't quite understand what my particular problem is and I don't know what to do about it. It is really disheartening to go for long periods with no pain and thinking that maybe *this* time the pain is gone for good...just to have it return again and I can't always identify a trigger. My husband and I are planning on starting a family early next year and I just don't know what pregnancy is going to be like for me(I have zero plans to have a vaginal birth...it will be elective c-section all the way). I currently take 10 mgs of Elival regardless of whether I am symptom-free (I also have some fibromyalgia-type symptoms that this medication controls) and I do not take any pain medications at all. I don't use a cushion for sitting and typically don't restrict my activities with the exception of certain types of exercise (I will walk on a treadmill, walk outside or use an elliptical gently only).

Can anyone give me any insight as to this condition? What should I do?? It is really hard to feel motivated to pursue something when the pain isn't always there. I know I am lucky compared to some people but I worry that one day I will have a flare and it won't go away or that I will become totally disabled during pregnancy and so on. Anyway, enough with the whining!

Thanks.
Stephanie

[helenlegs 11]

The pulled muscle feeling at the back of your thigh could be sciatica. Mostly this is S1/L5 involvement but sometimes from pelvic entrapment ie. piriformis syndrome (PS). The fact that you don't have pain all of the time may be that the muscle isn't always spasmed. Prolonged periods of sitting can induce a flare up . You Tube PS to see if you relate to the symptoms.
I have PS and PN from entrapments at the sciatic notch and do have siatica including the tight back of thigh feeling, although unlike you, I am much more comfortable with an empty bowel. (The movement itself is often uncomfortable ) I can also relate to pain from the sacrum to hip as this is where the piriformis muscle is situated.
If PS is symptomatic there are a lot of stretches and massage techniques that can help and even cure, especially if you suffer sporadically. You Tube them and give them a go.Fingers crossed.
Hopefully this is helpful and the answer to your problems, but if not this forum and the people here will always be able to help and offer great advice.
Take care
Helen

[sgrandy]

Thanks, Helen! There could very well be a pirformis syndrome component to my problem. I have had sciatica on and off since I was about 17 years old and we have a history of it in our family. I'm really wondering how my the PN might factor into this? I guess I just find it odd that my symptoms remit and relapse over and over again and have for 5 years. I wouldn't say that my problem has gotten worse at all, in fact, over the years it has gotten better and I have more time without pain than I did at the beginning. It is also interesting that sometimes I will just have sacral pain with no involvement from the rest of the pelvis and yet, sometimes, my pelvis is involved and I have more typical PN symptoms.

I wonder if I have something wrong with my sacrum and sometimes it get so irritated that the nerves also become irritated? I'm not sure what this problem might be. My husband wants me to go for another MRI as the last one I had the doctor ordered it for my ovaries/uterus which I have absolutely NO problem with what-so-ever and I didn't find out until the last minute so had it anyway even though it seemed useless. I'm actually considering getting the 3T MRI with Dr. Potter in NYC. I would have to pay for it out of pocket as I'm Canadian and so don't have insurance that will cover procedures in the States (well, that isn't entirely true...several Canadians have had their PNE surgery paid for after getting special funding from the government but I'm not going to any great lengths for something that I can pay for myself)but it would be an excuse to go to NYC (always wanted to go!)and it might be a bit more "revealing" than a regular MRI that I could get here for free. Anyway, it is just one thing I'm considering at this stage.

Does anyone have an opinion as to PN involvement?

Stephanie

[helenlegs 11]

If your sciatic nerve is compressed at the sciatic notch because of PS, the pudendal nerve could well be involved at that point aswell. This is what is happening in my case anyway.
I would say that the best thing you could do is have the Hollis potter 3T scan. Hopefully it will pinpoint where the entrapment(s) is/are and you can decide on a course of action from that point. Plus it is such a good excuse to see New York! ! I have to settle for Bristol over here
Have you followed the posts on here about the fantastic in depth scan report she provides ? She does seem to be totally switched on to our problems.
Good luck with it.
Helen

[sgrandy]

I'm definitely considering going for the 3T...especially after reading the indepth thread about it! I honestly don't know if I have alignment issues or what but I do know that I am thankful for the times without pain and that I can still do most of the things I want to do most of the time. I'm also thankful for my husband who has been unfailingly supportive of me as well.

NYC sure is an expensive place to visit though! I envy you for living in England, Helen...it is a beautiful place. My dad is from England and I went there in 2000 to visit my grandparents and extended family and have always wanted to go back. We had planned to go back this past September but decided it was an expense we couldn't afford because we're building a house here and that is expensive enough on its own!

Stephanie

[sgrandy]

I should also mention that a few days prior to this flare, I had been lifting and moving boxes of up to 40 pounds (or maybe more...the 40 is just an estimate). I didn't feel anything at the time but I have a feeling that this is what caused the current flare.

Stephanie

[Violet M]

Stephanie, you say you had an x-ray that showed some SI joint issues. Have you been evaluated by an experienced pelvic physical therapist -- someone who can check for misalignment, joint dysfunction, etc? HerMajesty has posted quite a bit on this forum regarding the Hesch method and how much it helped her. When you have musculoskeletal abnormalities there can be a resulting impingement on the pudendal nerve as well as the sciatic nerve. Sometimes the joints and ligaments themselves can be painful. It can take an experienced PT to pinpoint exactly what your problem is.

[HerMajesty]

Hi Violet, here I am!
sgrandy I was away when you posted and just found this...I had pelvic joint dysfunction and this was put back in place using Hesch method, www.heschmanualtherapy.com . As everyone who has been around this board for awhile knows, I started to work with Jerry Hesch after he helped me and started a nonprofit to disseminate Hesch Method, so I always state that as a disclaimer when sharing about this. But you do sound like me, somebody who might have joint dysfunction underlying the PN. A lot ofpeople have other issues, such as scar tissue entrapments, with would hopefully show up on 3T or MTN and require decompression surgery. But for me, I am scar tissue free and had traction and pressure on the nerve from displacement of the pelvic joints. Often you can see this in posture - I had one leg an inch and a half longer than the other for 25 years and did not know this as I compensated unconsciously by standing with one hip stuck out to the side. Other people noticed but chalked it up to "attitude" as I am a loud Jersey girl (no longer there, but born and raised).
While Violet is right that of course you need the pelvis assessed by a PT with experience not just in soft tissue work but in assessing the bony pelvis, you might be surprised at how easy it is to tell that you are malaligned...just walk down a long hall and back a few times and have your husband really WATCH - like me you might be noticeably uneven at hips, shoulders, etc but it doesn't really register with anybody.
Anyhow as to how this can happen with no trauma: My pelvis initially got messed up from a gait abnormality. It worsened after the birth of my 2nd child but I am not sure if that was due to childbirth or gait...I was very heavy during that pregnancy AND walked 2 miles per day after she was born to take off the weight, so the 2nd injury could have happened at any time since my new symptoms came on gradually after the birth. The gait issue I have is due to Morton's toe, a short 1st metatarsal. It is a very common genetic foot malformation BUT it is even more common in pelvic pain populations. It is very easy to correct the gait problem but I was unaware...and of course if this is your problem as well, correcting the gait problem would not correct prior damage - you would still need to have the pelvis manipulated back into place. I had my pelvis corrected and then rigged my shoes to correct my gait, and the pelvis has stayed in place for 11 months now. Here is a page on how to tell if you have morton's toe - the book explains how to rig your shoes to correct it; or I could just explain it to you if you do have the problem, it is easy to fix. Here is the link: http://whyyoureallyhurt.com/home/#tp Read it carefully - your 2nd toe DOES NOT have to be longer than your 1st to have Morton's toe - you have to look directly at the metatarsals and somewhere on the page it explains how.
If you don't have this or another gait issue, your guess is as good as mine how your S-I went out with no trauma. Worst case scenario is a connective tissue disorder, which makes your joints hypermobile and very prone to injury - you can read up on this if you think it applies. Clue is extreme flexibility.
Hope some of this was helpful in looking at your "big picture"