Why does laying down in bed on your back worsen symptoms?

[Violet M]

DG, you can read Hermajesty's posts on the forum if you do an advanced search in the upper right corner. She had tarlov cyst surgery. If you are having lower back pain another thing you may want to do is be checked for sacroiliac joint dysfunction.

Violet

[DakotaGirl]

Violet,
You could t be more right that SI joint it is very bad and I had an injection two years ago , but it was one of my worst ones. I do have arthritis in the si joints to and they are unstable and loose.
Odd thing was that the shot was felt In Between my legs aka crotch" area and it hurt like hell, felt like pubis symphis and pgad and peeing all rolled into one.
I don't know other than stretching and strengthening what else I can do for the si joint. I don't think the tarlov cysts are symptomatic because they have been looked at by a couple of doctors, are small and I have them in the thoracic spine also.
But who really can say. With a back that has spondylitis and stenosis and ddd, it would be hard to pin it on those cysts where there is so much worse going on. I hope to find out someday.

[Violet M]

Wow, sounds like you have a lot going on there. It's really tough to figure out what's the culprit when you have a lot of different pathologies. It becomes a matter of trying things to see what works I guess. Good luck sorting this out.

Violet

[DakotaGirl]

I know right? I'm old. I guess that's what the aging spine can do in some people. Mine started very young.
I was a gymnast through high school and part of college and the moved on to years of weight training/bodybuilding and when I couldn't do that anymore I moved on to some running and now I can barely walk.
Funny how that happens.........

[Violet M]

It's hard growing older isn't it? I can totally relate.

Violet

[tamis1966]

I also have that same issue. When I lie on my back I get burning pain at the bony portion of my tailbone that starts right after the sacrum. I also get burning pain on the skin that sits right over the tip of the tailbone. Sitting is still worse but lying on my back is a close second. Do any of you not have the worst of the pain from sitting until later? It's not exactly comfortable for me to sit, but it's usually a couple of hours later that I start having a worsening of the burning pain in my tailbone area and I also start feeling burning in my genitals and anal area. Feels kind of like a yeast infection. My PT seems to believe my pain stems from my lower back and the fact that I have a tight pelvic floor. Not sure I agree since I had an extreme worsening of symptoms along with some new ones after a hysterectomy with full repairs back in 2008. I just wish I knew who to see for some type of diagnosis. I've been doing PT for a month now without any relief whatsoever.

How does one even go about getting qn MRI of the pelvis? I have been dealing with this since 2007 and no one has ever given me one.

[Violet M]

I don't remember getting worse pain several hours after sitting but I used to get pain flares several hours or a day after exercise.

You could check with Dr. Potter's office to see if they can advise you where you might get the type of pelvic MRI that uses their special software settings.
She is listed at the following link in the New York section: https://www.pudendalhope.info/united-st ... icians/#NY
A pelvic MRI is not 100% accurate at diagnosis of what is causing the problem but it can potentially provide important information.

If your problems possibly stem from your lower back, it might be just as important or more important to get an MRI of the lumbosacral area and possibly the lumbosacral plexus if you haven't already. Can your primary care physician order that for you?

Many people with pudendal neuralgia have a tight pelvic floor. I had a tight pelvic floor that was caused by pudendal nerve entrapment. So, a diagnosis of a tight pelvic floor doesn't necessarily tell you what the underlying cause is -- what is causing it to be tight?
Have they evaluated you for SI joint dysfunction, pelvic misalignment, pelvic instability with hypermobility? Do you have tenderness at the ischial spine when the PT presses on that area?
These are all important questions to consider. Is the PT doing internal PT? If PT isn't helping after 12 sessions, I'm not sure it makes a lot of sense to continue it.

There are times if you can't get answers locally, that it can be worth it to travel for a proper diagnosis and treatment. I don't know where you live or if you are at that point yet. But it sounds like you really need a proper diagnosis still. Nerve blocks can help in determining a diagnosis. If you live in an urban area there is a good chance you could find someone who does them in your area.

Violet

[tamis1966]

Hi,

I live in Vancouver Washington. I have been to a couple of chiropractors, a couple of pelvic floor physical therapists, a couple of naturopaths and a urogynecologist. Most of which have said they think the issues might be stemming from my lower back. Possible pudendal/nerve compression issues were also mentioned by the urogyn and one of the naturopaths. One of the physical therapists seemed to think the symptoms are all the result of a hypertonic pelvic floor.

I had an MRI of my lower back done last year. Issues in a couple different areas of the spine were located. I have foraminal stenosis in my cervical spine, and bulging discs, foraminal stenosis, facet and ligamentous hypertrophy in my lumbar spine. All were listed as mild to minor with the exception of the stenosis in my cervical spine, which is moderate to severe. The facet and ligamentous hypertrophy with mild foraminal stenosis is in the lower L5-S1 areas so I'm wondering if that could be causing my issues?

I am currently seeing a new pelvic floor PT who works with people other therapists have failed to help. I have seen her twice now (she mostly does internal work on me) and I am planning on going to another 4 sessions at least. I will be having an MRN done in the next couple of weeks and will also be seeing a neuropelveologist at the end of September.

My main symptoms are low back pain (the least bothersome of all my symptoms), burning pain and tightness around the tissues of my tailbone/sacrum/left buttock area near the cleft, burning pain around and into the anus/vagina (mostly during and after sitting), occasional discomfort in the back of my thighs and sometimes down into my feet. The pain seems mostly left sided but sometimes can be felt on both sides. I can't sit or lie on my back comfortably for any length of time as the pain will continue to increase the longer I do either. The pain in the buttock/sacral area decreases significantly while standing but is immediately felt again when lying on my side. The vaginal/rectal burning doesn't improve with standing at all. Even if I don't sit at all during the day, the pattern is always the same.....worsening throughout the day, peaking around bedtime and subsiding during the night and early morning.

The thing I really don't understand is why the pain is in more areas of my pelvis and is worse in all areas than when everything initially began. I had been feeling 60-70% better over the past 6 years before the symptoms inexplicably came back in March with a vengeance. It seems to coincide with symptoms that could be attributed to my spine - temporary foot drop, pain in the bottom of my foot, tingling in my leg (all left-sided), and a massive worsening of neck pain that caused other related symptoms. I was seeing a chiropractor for nonsurgical decompression of my neck and gentle manual adjustments of my lumbar spine when the buttock/sacrum/tailbone pain returned. In the period since, my genital area has also become involved. Does any of that sound like a possible PN/PNE issue or more like a lumbar spine issue? Do you have any suggestions on what I might try next?

Sorry for the long, wordy message. I am desperate for answers as I'm sure we all are.

Tami

[tamis1966]

"Have they evaluated you for SI joint dysfunction, pelvic misalignment, pelvic instability with hypermobility? Do you have tenderness at the ischial spine when the PT presses on that area?"

I don't think anyone has done any of these things. Can my PT evaluate me for these possibilities?

[Violet M]

"Have they evaluated you for SI joint dysfunction, pelvic misalignment, pelvic instability with hypermobility? Do you have tenderness at the ischial spine when the PT presses on that area?"

I don't think anyone has done any of these things. Can my PT evaluate me for these possibilities?

A PT should be able to evaluate you for those things. I was diagnosed with hypermobility and pelvic instability by both a PT and a chiropractor. A pelvic floor PT or a urogynecologist should be able to press at the ischial spine during a pelvic exam to see if you have tenderness there. The ischial spine is not the same as the spine in your back. It is a bone that protrudes into the pelvic area that can be felt by a finger examination via the rectum or vagina. According to the Nantes Criteria, tenderness at the ischial spine can be an indication of pudendal nerve entrapment.
https://www.pudendalhope.info/wp-conten ... iteria.pdf


It can be tricky to determine whether pudendal neuralgia-type symptoms are caused by a spinal radiculopathy, by a peripheral pudendal nerve entrapment, or just tight pelvic floor muscles - or something else. Since you have additional symptoms besides just pelvic pain and your MRI shows some spinal abnormalities you have to consider the possibility of the problem originating in your spine as opposed to lower down at the peripheral pudendal nerve. The pudendal nerve comes down from sacral nerve roots 2, 3, 4. When your doctors say it is likely coming from your lower back do they mean the foraminal stenosis in the L5 S1 area possibly impinging on a nerve, or do they think there is SI joint dysfunction in your lower back, or something completely different in the lower back? If they think it is the foraminal stenosis, albeit mild, impinging on a nerve, what treatment are they suggesting? Are they suggesting any diagnostic tests they can do to determine if that is the cause? Are there any risks to the diagnostic tests? These are some questions you can ask them to help you make a decision on what to do next.

So, it sounds like you might need some more precise diagnostics before you decide on a treatment plan. If you do have tenderness at the ischial spine and if internal pelvic floor PT flares up your pain, you might want to consider a pudendal nerve block for diagnostic purposes. If you have pelvic instability, SI joint dysfunction, or hypermobility, the ligaments could be compressing the pudendal nerve primarily on one side or the other with the pain being mostly unilateral as described in the Nantes Criteria article, This could be another indication to try a pudendal nerve block for diagnostic purposes. But if none of those things are present and if your doctors are giving you a pretty clear indication with good supporting evidence that you have a nerve impingement in your spine affecting the nerve roots that feed the pelvic area, then you might want to follow their treatment suggestions. The cervical stenosis sounds more concerning than the mild L5S1 mild stenosis but I'm not sure how cervical foraminal stenosis would be causing your pelvic pain issues. Do your doctors think it is related? I can see how it would be causing your neck pain but I'm not sure how it would cause the pelvic pain. I also noticed you said the MRI showed ligamentous hypertrophy. Do they think it's possible the ligaments could be pressing on a nerve root?

If it's just tight pelvic floor muscles, you should see some improvement with pelvic floor internal PT. So one option would be to continue it a little longer and see if you improve - especially if it's not making you worse. But it seems like you are having more problems than just tight pelvic floor muscles.

Just one comment regarding chiropractors. I had one do an "adjustment" on my spine right after I asked them not to, and since that, sometimes I wake up at night with burning pain in my torso. It was bizarre -- she suddenly lifted me up to pop my back right after I told her I didn't want that done. So I am a bit leery of chiropractors. There are some people who were paralyzed by a chiropractic adjustment. I don't know how aggressive the non-surgical decompression of you neck is, but if something goes wrong with an adjustment at the cervical spine it could have potentially severe consequences. But the reality is, anything you try that is invasive has some risk involved, including diagnostic nerve blocks, so it's always a matter of weighing the risk vs. the benefit.

My initial symptoms were mild too and worsened over time to where eventually there was no comfortable position. I'm not sure why that is happening to you. My problem was I kept exercising, not realizing what the diagnosis was or what was causing it, and once I figured that out I think the nerve was already pretty irritated. Over time the pain just caused more muscles to go into spasm leading to more pain.

So, sorry for all of the brainstorming. I hope you can get the diagnosis narrowed down better so you can figure out what treatments to pursue.

Violet