His and Her Health

I suffered from pn and here is the cushion I used prior to and after surgery. I took 2 kneeling pads and positioned them about 2 inches apart and then sat on them with the perineum (what's between your legs) being suspended in the air. You may have to adjust the width between the kneeling pads or books or any level surface of at least an inch thick. I was able to sit on those cushions for long periods of time, but it was annoying to take it with me everywhere. I had the surgery and that part of me is better, but I am still dealing with vestibulitis and now I have hypermobile SI joints.

Dr. Goldstein,
I seem to be responding well to topical capcaisin (11 weeks in), however, I find I am still having a burning sensation if I don't spritz off after urinating. I was told I may be sensitive to oxalates, and as a result have been avoiding oxalates as best I can for several months. The thing is, the list is huge (and includes many healthy foods), and the last time I adhered to such a strict diet (thought I had IC years ago), I became so thin my doctors worried about my health.
Does a vestibulectomy wipe out the sensitivity to oxalates, or is that something I would deal with for my entire life?


Thanks,
Kate

Niva,
I told my PT about the myofascial pain syndrome and she didn't say...yes that is what I am working on. She was working on some restrictions...but I don't think the main ones which are on the tailbone and the very tip of the pubic bone. I think that they are the main ones because they hurt more than anything ever has in my whole life when they are touched!

Botox is an interesting thing. If what I am doing now doesn't work completely I may look into it. I am actually getting injections of a homeopathic inflammatory into the painful spots by a surgeon here in town.

Thanks!

Kate

Niva,
I am working with a new chiropractor and he said that I have myofascial pelvic pain syndrome. He is also a licensed acupuncturist and he uses a different technique. I did not realize that I had these extremely sore spots on the front of my pelvis as well as the tailbone pain. I will write back and let everyone know how I am doing in a few weeks.
All of my pain started 6 hours after a car accident 5 years ago...

Kate

Niva,
I found out that I have an anal fissure and skin tag...not an external hemorrhoid. Apparently my anal sphincter is too tight. Can this cause tailbone pain? The pain in the tailbone is the worst if I have sat for a few minutes and then attempt to get up. Just staying in the sitting position and lifting myself up slightly with my arms causes major tailbone pain that lasts for about 10 seconds. Sometimes I feel like my vagina can't breathe...I know it sounds weird.
The kegel exercises used to make me feel worse but now I think that they are helping. Sitting to do a couple of the exercises can be excruciating. I have a donut cushion but it doesn't really help. My period causes me excruciating tailbone and low back pain.
I will ask the PT and the chiropractor which way they are adjusting the SI to make sure that they are not counteracting one another.

Thanks,
Kate

Hi Niva,
Thanks for your response!
The chiro is manipulating the SI joint and he has been pushing on the muscle spasm for at least 10 seconds each visit (which in the beginning was more than I could stand), I think trying to get it to release. The muscles are crunchy. Is there anything that I can do to speed the release?

I do not have an SI belt. Would that help me out?

The PT is for pelvic pain (pudendal neuralgia and vestibulitis). I had my pudendal nerve decompression surgery done with the trans-gluteal approach so I had my sacro-spinus ligaments divided according to the operative report. It looks like my nerve was transposed medially, but not laterally, and my muscle bundles were re-attached loosely (gluteus). It looks like my sacrospinous ligaments were tethering the nerve as well but it does not say in the report if those were cut or divided or dissected.

What is connective tissue manipulation? Is that massage?
I have been doing the piriformis stretch. The sacrum has to be adjusted from the right to the left each time I see the chiropractor (2-3 times per week). My PT tried to do an intrarectal release of the coccyx but said that rather than being hypo-mobile I was more hyper-mobile. She said that the pelvic floor exercises will strengthen me and keep things in place. She said that I am higher on my left side and has been giving me exercises to even me out (hips) because the side is compressed.

I did not have PT prior to surgery.

Thanks,
Kate

Here are my exercises:
seated hamstring curl
seated trunk rotation
supine trunk rotation
hip external rotation with theraband
kegels
breathing into abdomen
child's pose
half-kneel hip flexion stretch
quadriped pelvic tilt
priiformis stretch
hamstring stretch
wall slide
heel raises
leg lifts
Some ab exercises without names
walking daily

Niva,
Hi there. I have a question for you. Some backgound:
Vestibulitis

Bi-lateral Pudendal nerve decompression surgery in 2006

I have been going to PT since January, I see a chiropractor every week, I am on the estrogen/testosterone cream, I have been off the birth control pill since January, and I have gotten vaginal injections of homeopathic anti-inflammatory compounds.
I have SI joint dysfunction. Basically, my chiropractor said that I have a lot of muscle spasms going on in my back right at the sacrum...S1 or S2 and it hurts there quite badly when I attempt to sit or if I am sitting and I switch positions and when I go around a curve in a car. It feels like someone is hitting me with a baseball bat at S1 or S2...right at the top of where my butt starts. Could it be the muscle spasm? Or could it be something else that we have missed? I had a CT scan done with and without contrast and it came back normal.
The pain was lower and I was dealing with coccyx pain and severe burning on the left side of my low back (side of SI joint dysfunction), but that is gone now and it hurts higher, more center, and more like bone pain than burning pain. I also have the feeling of a front wedgie.
I also have an external hemorrhoid that is bothering me..can that cause muscle spasm and low back pain?

I appreciate your time.
Kate

I have been off the birth control pill for 6 months now, and am having major acne. It seems as if it is getting worse. The acne shows up a day or two before I start my period. Is anyone else having this issue? I haven't had this much acne since I was a teenager. Will it straighten out as my hormone's adjust?

Lexy,
I have pudendal neuralgia and vestibulitis and sacral pain and tailbone pain. I had pudendal nerve decompression in 2006.
Has anyone suggested the spinal cord stimulation to you? What about POPPS syndrome? I know what you mean about being thin. It's hard to eat when you are in pain all of the time. I had a doctor tell me today that if I was heavier I wouldn't have so much pain, then I asked him why when I was 20 pounds heavier the pain was still there? He was speechless.
One thing that I have found that helps is something called a tens unit. It distracts the brain from the pain by sending a tiny electric shock to the skin. It is not painful, and it helps some of my pains.
The Spinal cord stimulation may help with the bladder issues as well. There is some extremely promising work with that. Feel free to email me. My email address is listed. Where do you live?

Cheeky,
That would be fantastic! Please do keep me informed. My email address in my profile. I am just at a loss and feeling hopeless.
The best of luck to you:)

Kate

DanielleBAN,
You got me. I don't know. I'm so confused. I'm wondering the same things....how do you know if there are too many nerve endings or if the problem stems from elsewhere. Then, I am wondering, is it just still my pudendal nerve acting up or is it another nerve or not a nerve...then why the heck does my tail bone hurt?

Cheeky,
Thanks for the information. Is Dr. Goldestein your doctor? That's who I was thinking about seeing. If so, you had said you did not respond to creams and medications...what was the cause of your vestibulodynia?

So after the testosterone/estrogen cream, pelvic floor rehabilitation, removal of irritants, stopping of birth control pills, and the taking of anti-convulsants and anti-depressants among various other years worth of treatments.....the skin looks much better in the vestibule (in response to the testosterone/estrogen cream), but the burning pain remains and the entrance to the vagina still hurts.
What now? Does that mean the pain is nerve related and if so, why don't the anti-convulsants and anti-depressants work? I have been taking them for years.

Please help.

DaneilleBAN,
Hey thanks.

Kate

I had bilateral pudendal nerve decompression surgery. My major complaints were burning in the urethra and a burning, pinching sensation on the left side of the labia majora. I felt good in the morning usually and then by the evening I felt terrible. Sitting made the pain worse and or occur. Also, I had to urinate tons and sometimes it burned when I did.
I diagnosed myself....here's what you can try. This may or may not tell you anything. Make yourself a PN suspension cushion. You can sit on two same height books...spread an inch or inch and a half apart so that there is no pressure on the perineum. When I tried that I noticed improvement.
Although now I am dealing with this pesky sacral pain and vestibulitis burning.

Hope this helps:)

There are some really great doctor's out there that do not take insurance that are specialists in treating Vestibulitis....anyone know what the cost is of a vestibulectomy? From diagnosis to surgery? A rough figure?
I have insurance, but I would not know how to go about getting something like that authorized and then how to submit the claim for payment?

I have vestibulitis and had pudendal nerve release surgery two years ago...I also have tailbone pain. It even hurts to touch my tailbone....anyone out there have this?

Thanks.

I have been diagnosed with vestibulitis. I have been in pain for years. I am going through whatever non-invasive treatments there are, while still trying to find a local doctor (I was diagnosed by one not so local, and one that I found out later has had some malpractice suits). Some of the best vulva doctors do not accept insurance. How do you find the skilled surgeons and doctors that do take insurance? I understand that you can file with your insurance company the amounts you were charged afterward, but the thing is when you see a doctor who accepts insurance, things are re-rated to a negotiated (lower) rate before you are doled out your share to pay. Anyone had a vestibulectomy by one of the vulva experts that did not accept insurance know about what it ended up costing you?

Thanks in advance to anyone who has any information to share.

npm,
I was diagnosed for pudendal neuralgia and had surgery two years ago...has a specialist in that field ruled pudendal neuralgia out? There are specific tests. The reason I ask is because you seem to be having that foreign body sensation...something is in there and its not. That may be nerve pain. I had burning and pain in the left and right side of my labia along with other areas...it's now this darn vestibulitis! Anyway, my surgery revealed that basically...I really needed the surgery.

I found a nurse near my home that has been called an expert in vestibulitis by one obgyn...so I set up an appointment and am hoping it will go well. Thanks for the information and the support.

Thanks that is a good idea. It is hard to think straight sometimes.

Hi there. I am new to this forum and finding myself extremely frustrated and unsure what to do next. I was diagnosed with pudendal neuralgia and vulvodynia 3 years ago and had pudendal decompression surgery two years ago. Before that I was diagnosed with IC and now recently I have been diagnosed with vestibulitis by a different doctor. He told me to spritz off with water after urinating and to apply premarin cream twice daily. Also, my allergist found out that I am slightly allergic to yeast so they actually put me on diflucan twice a week.
Now I am wondering if I should be off my OCs which I have been taking for 9 years. The problem is that pads hurt and you can forget a tampon. I also feel a ton of burning in the vestibule and vagina when I have a period or when I am going to have one soon or when I just finished one. I have long heavy periods that come quite frequently when I am not on the pill. I started my period at age 9 and have a family history of uterine fibroids (my mom and all my aunts...resulted in hysterectomy's). I had a hormone level blood test and the doctor said that my estrogen level was low but within a normal low for someone who is taking the pill. Every time I go on the pill or off the pill (those few days) I feel better.
I have a hard time distinguishing what pain is coming from what condition, but now am wondering if a lot of the pain I blamed on my pudendal nerve was actually the vulvar vestibulitis? How do I find a good doctor to treat vulvar Vestibulitis?
I feel like a big mess and am so tired every day I can't see straight. Please help someone...if you can.