Ischial bursa

[Barre]

Hello all ,

As mentioned I have been suffering from these weird random symptoms in the nether regions. Some days are better than others. There is a tender spot near my ischial bursa, the inner buttock more towards my anus, a deep aching pain that feels very tender when I press it , the muscle also seem to cramp up when sitting on a hard surface and it feels swollen sometimes, not sure how to describe it.

-some weird sensitivity in my perineum that often gets aggravated by sitting, hard chairs seem to be a big n
-sciatica like symptoms that actually got a lot better after 2 weeks and dry needling.
-intermittent from day to day discomfort in anus and general perianal region, like a sore feeling.

Been to a neurologist, gastroenterologist and a proctologist, rectal exam revealed some minor inflammation and small tears along the lining of my anus, doc gave me colloidal silver suppos to help heal these, so far no lunch however.

He also palpated the pudendal nerve I think through the rectum at three and nine o clock, but did it quite roughly in my opinion and I was in serious penile pain and discomfort for days, upon palpation there was no pain or discomfort however and he told me that when the nerve is entrapped people jump from the table when he presses there from the pain. He concluded that pn was very unlikely but possible. Anitis or radiating from my lower back was a possibility that he tough was more likely but this does not really seem to match my overall symptoms however.

My PT thinks it's from muscle tension and that most cases of pn related issues are transient and improve with time and treatment, only the very bad cases who got serious entrapments or extensive damage are on forums because the majority who get better don't feel the need to go on forums, so the doom and gloom gives off the wrong impression.
Not sure how accurate this statement is however.

Anyway, this Thursday I have an appointment with Katleen Jottard je is suppose to be an expert on on related issues, so hopefully I will get some clear answers there. I suspect TMS has a huge part in this as well.

[April]

Hi Barre,

Your symptoms sound like pn to me. When doctors have pressed on my pn nerve internally, it was never that painful, but I did get a flare later on (e.g., burning that started earlier in the day and/or burning that was more extreme than usual). But, I did (and still do to some extent) have extreme tenderness at the ischial spine. It sounds like you have that? If so, that can be indicative of pn.

In some people the muscle problems create the pn pain, and it sounds like that's what your pt is hypothesizing? That's possible, but it's also possible that your pn pain is creating muscle tension. So, it can be hard to know what's causing what. But, it's great that you're going to a pelvic pt. That can be especially useful if the primary problem is muscular. If you can eliminate your muscle tension with pt, and you still have pn, it's likely that the cause of the pn pain is not muscular. You mentioned TMS. What is that?

Good luck at your appointment. Keep us posted.

April

[Barre]

TMS is tension myositis syndrome, or the mind body syndrome as it is called now.

It's abit floaty but backed up by science apparently.

The funny thing is that prior to getting more outspoken and serious symptoms I was obsessed for a few weeks that I had PN, starting to read about the condition and symptoms and than later I actually got symptoms, they come and go but it definitely seems to match PN.

Anyway, not sure if this can play a role but it does not seem far fetched that the mind and brain can play tricks on us.

Also pretty sceptical about the expert because even when I get a diagnosis there is not much they can do besides prescribing PT and/or meds in my opinion and hope for the best.

[Violet M]

Hi Barre,

I agree with April that it's kind of hard to tell whether it's an inflamed, possibly entrapped nerve that's causing the muscles to tense up or whether it's the muscles in spasm impinging on the nerve. Initially I had mild toothache-like pain but I was an exercise freak and I kept exercising not realizing it was related, so it progressed. I don't remember having "jump off the table" pain when they pressed on the ischial spine but I had tenderness. Internal PT or exams caused major flare-ups a few hours afterward that sometimes lasted a week. That's why I decided to quit internal PT. I think that if PT is helping, it makes sense to continue it but if it's making you worse, it doesn't make sense to continue it.

I think neuroplasticity is a real thing but I don't think everything they try to call TMS is really TMS and mindbody therapy doesn't work for everyone. It did nothing for me. Also, mild pain can lead to more severe pain if it causes you to tense up your muscles. Which is why it makes sense to try PT before heading straight to surgery, just in case PT will calm down the muscles.

Good luck with your visit to Kathleen Jottard. I would be interested to hear what she thinks.

Violet

[Barre]

Been to Katleen Jottard,

She strongly suspects it might be pudendal neuralgia based on the duration, location and nature of my symptoms. But off course the diagnosis as Violet said, between irritation or entrapment is impossible to make.

Anal sex or prostate massages can be a cause according to her, or at least a triggering factor.

She strongly advised I visit a pain clinic and continue doing PT to break the pain cycle as soon as possible, and she seemed pretty confident that it would go away or greatly reduce because it was caught so early.

I should avoid any triggering activities and use a special cushion to avoid pain triggers and to avoid it becoming chronic.

Basically all the stuff that knew allready lol but it gives me hope that she said that there is a good chance it could go away and it is improving.

[Barre]

My experience was underwhelming to say the least.

Firstly the assistant made the appointment on the wrong day but I could not reschedule it as I had taken a day off from work to make the one hour drive to the hospital , the doctors time was very limited. For pelvic pain issues the consultations,are longer and more extensive but that was on another day as my appointment. When I entered she apologized and said she could only take about 10 minutes per patient on this type of consultation.

She asked some brief questions and proceeded to read with a needle to press on spots around the perineal area to see if it was sensitive or numb.

When I complained about my pain in the sit bones after sitting she said that this is not related to PN? When I mentioned it could radiate as described in the literature she nodded and proceeded to say that it could be PN based on my symptoms but that the diagnosis between PNE or irritation/compression is impossible to make.

She strongly advised a pain clinic where they can make a proper diagnosis/treatment plan and use a orthopedic cushion. And that it can go away but it's important to 'break the pain cycle' , it has a strong psychological factor.

So many questions remain open however, will it get worse, can I still work, my work involves slot of sitting in the car, getting in and out. She did not seem to take it very serious in my opinion, might just be my imagination.

Seems a bit like a waste of time and I regret not being able to reschedule the appointment. Hopefully I will get more answer in the pain clinic but I won't be able to see them for at least two months.

[Barre]

My sciatica symptoms, burning pain in the hip are and left lower back, sitbone pain and muscle stiffness are almost more outspoken most of the time however than anything else.

Sometimes there is discomfort around the anus but that is easily solved with lidocaine ointment and not always present, largely some very mild pain sometimes in the tip of my penis but that is all.

My GP says this is unlikely to be PN as I should have more outspoken and typical symptoms, it's all so confusing and highly depressing, no one seems to know for sure and it's all wild guesses.

What are your thoughts on these symptoms patterns? Can it be the sciatic nerve irritating the pudendal nerve or both?

[April]

Hi Barre,

I think it sounds like pn, but it could just be that the nerve is irritated and that the pain will dissipate if you stop activities that irritate it. Many GPs (in my experience) don't know that much about pn (and that its symptoms vary quite a bit), so I wouldn't be confused by what the GP said. I think it could be useful to go to the pain clinic to see what your options are there. Is that your next step?

April

[Barre]

Yes April,

I will continue the PT sessions and the next logical step seems the pain clinic and see how that goes.

[Violet M]

My sciatica symptoms, burning pain in the hip are and left lower back, sitbone pain and muscle stiffness are almost more outspoken most of the time however than anything else.

Sometimes there is discomfort around the anus but that is easily solved with lidocaine ointment and not always present, largely some very mild pain sometimes in the tip of my penis but that is all.

My GP says this is unlikely to be PN as I should have more outspoken and typical symptoms, it's all so confusing and highly depressing, no one seems to know for sure and it's all wild guesses.

What are your thoughts on these symptoms patterns? Can it be the sciatic nerve irritating the pudendal nerve or both?

Many people with PN have more than just PN symptoms because often there is an underlying cause that is causing the PN that may also be causing other symptoms. For instance, in my case, I had pelvic instability with strained ligaments that caused pelvic misalignment and SI joint dysfunction. In addition to PN symptoms, I had piriformis spasms with burning in my left gluteal area. Meralgia paresthetica with symptoms of pain down the outer hip/thigh area is another problem some people experience. Pain in the SI joint (lower back) is another symptoms PN patients might experience. So, it's important to be evaluated by a good PT who can assess the entire pelvic area, lower back, spine, and extremities for any musculoskeletal problems that could be contributing to your symptoms. Since you are experiencing some symptoms in the distribution area of the pudendal nerve, it seems likely that the PN is irritated. But you could have other nerves irritated also. There can also be crosstalk between the nerves, and if you have pain in one area, muscles nearby can go into spasm due to the pain until your whole pelvis is a mess. That's what happened to me. I agree with your doctor that there is hope for you especially since you caught this early.

Violet