Hello, I'm new and quite scared

[Sel]

Hello everyone, I'm a new member of this forum and I'm a 22 year old woman.

I feel very lost right now, I've been looking online for possible causes of my pain and I'm feeling more and more scared and confused.

I'll just start by saying that I've been sedentary all my life, sitting for almost all day first at school then at my pc. In the past I did some exercise, but then fibromyalgia kicked in and I had to drop that. I have been struggling with it and chronic fatigue for the last 3 years, and I thought that was bad. I have scoliosis and probably some asymmetry of my right jaw bone. Recently I've been looking into Ehler-Danlos as it could explain some of the things that happened to me.

I can't really say when what seems PN it started, maybe 1 week ago when I started feeling aroused and swollen inside my vagina, so I tried to relief myself roughly 7-8 times over the course of 3 days. At first the orgasm helped and I didn't really pay much attention to my arousal as I've always been a bit hypersexual with recurrent thoughts about sex. Then after the last time I noticed that the orgasm couldn't relieve my arousal and I kind of panicked. I looked online of "persistent feeling of arousal" and immediatly discovered PGAD, and I panicked even more with stories of people committing suicide, chronic lifelong illness that has no decisive treatment. It seemed to be quite unknown and generally a mysterious syndrome. I cried very much for the next two days and I've been mostly lying in bed with hot packs that seemed to help for a bit.

Unfortunately I had the very bad idea of trying to stretch my muscles down there, and even if at first it kind of seemed to relieve the pressure it really worsened the pain after.
On monday after only being able to sleep 3 hours I went to see my Gynecologist who said there was nothing wrong with my vagina, uterus or ovaries. She said they were not even swollen, lubricated or dilated despite my feeling of "arousal". After the visit my pain really flared up, as she unfortunately caused me a lot of pain inside and even outside when she pressed right over my groin area on both sides. This was 3 days ago and my pain kept getting worse and worse. It is especially bad when lying down and I have very much discomfort and inability to sleep. The frequent need to urinate doesn't even bother me as much as this pain.
My pain is on the groin area, perineum, and at times the tailbone. The "arousal" feeling comes back usually when I consciously try to relax my muscles. And today I have a very painful burning sensation in those areas and over my vulva that even runs down to my inner thigh and sometimes the calf too. The pain I feel is like clenching, pulling, like someone is trying to tear my legs apart even if they are closed. It's so painful, but touching the skin doesn't cause me any pain. I haven't tried pressing because I don't want to make this worse. No position relieves this pain completely or significantly reduces it except from sitting on the toilet. My rectum is so tight I have had difficulties defecating due to my muscles refusing to relax. I'm getting very scared by the progression of my pain and I'm thinking the worst, like I severely damaged my nerve with the stretching or touching, or that I must have some kind of peripheal nerve illness as I have burning sensations that extend over the range of the pudendal nerve. I haven't been able to eat much as my appetite went away completely and I almost passed out due to dehydration.

It's only been 5 days but it's gotten so much worse so fast that I'm really having difficulties staying positive. I am really happy for the people in this forum that were able to find relief, as I've seen some of you have been suffering for years and I'm only 5 days in and already getting desperate.

Thank you to everyone who will kindly spend their time to read my post, if you have any suggestion or had a relatable experience, or even would like to offer some comforting words I would very much like to hear from you.

[janetm2]

Welcome to the forum Sel,
Oh my you have quite a bit going on but then we have seen a some others who seem to have many issues. So hard to say where to start but maybe you could find a pn-aware PT near you off our home page. They sometimes can do a better diagnosis than a dr that has no knowledge of PN and if there a muscular issues they can help. There is a pgad thread on here with info, a newsletter (I think off the homepage about pgad) and the FAQs have various info on medications, how to avoid adding to the problem with lifestyle changes, etc. Please try and focus on finding some answers that can calm your anxiety as that only makes it worse. Ice is usually helpful and also try to stay hydrated and nourished. I am so very sorry this has all started and at such a young age. Take it on day and step at a time and I hope things calm down soon. I always flare after gyne exams even with someone who understands and is a gentle as possible.
Janet

[Sel]

Thank you very much for your words, Janet.

I found a Neurologist in my country that is knowledgeable about PN and PNE who also does PT. I had an appointment scheduled for May, but somehow they called me back saying that I could go this Friday. I was in tears of joy. I really hope I can get some useful imput from him, as I know that my pelvic floor is very tight right now. It seems I have some signs of PN, but also pain that radiates outside of its range and seem to point to more nerves suffering than just the pudendal.

Is it common for the pain to not really get worse immediately upon sitting? I find I have the most relief from walking a bit and sitting on the toilet with the legs spread apart. It is really bad when I lie down or when I'm standing still for too long. In your experience is this common with only PN or PNE?

I really want to get a MRI of my spine and pelvis but my doctor refused to prescribe it, saying I am too young, even tho I was in so much pain and I could barely move from the stiffness in my hip/pubic area that I almost cried again in front of him. I will try again for sure.

[janetm2]

Sel,
Wonderful to hear you got an earlier appointment. It is really hard to tell the difference between PN and PNE, honestly the doctors are only sure when the open you up at surgery. There is a letter for doctors that we have that may help with getting the MRI although sometimes MRIs do not show anything for PN or PNE. Certainly could be enlightening for other things that are causing the symptoms. Many issues can overlap symptoms. See what the PT says that may guide your in a definite direction.
I had PNE and post surgery PN. My pain usually goes worse sitting but sometimes it is lying down or walking (especially after sitting a bit). Okay so all over the place. Toilet is usually best and lying down with bent knees. Keep us posted so we can try to help. Also remember it all effects us differently which is one reason it is hard to diagnose.
Janet

[Sel]

Yes, unfortunately I learned that there is no way to differentiate between PN and PNE, but with a MRI of my spine and pelvis I could see if the cause lies elsewhere. It seems my problems are all over the place, even my sciatic nerve is acting up and the left side of my hip/gluteus feels kind of tingly. I even discovered that the entire bottom row of my left teeth is tender to touch, but it's not the same feeling as a toothache.

It could be CS or cross talking between nerves, but I have a feel that this is due to my scoliosis and my muscles not working symmetrically. I have a leg shorter than the other which probably means my hips are not even and my posture usually tends to tip to the left side. I sometimes get cervical headaches and nausea and my shoulders are stiff. I will also try to get in contact with an osteopath that treated me in the past for tension headaches after I removed my braces with great success.

Thank you for listening to my ramblings, Janet, I appreciate it very much!

[janetm2]

I forgot about the pain I get in low back (not sciatic?) when my pelvis is out of alignment. This looks like a leg length discrepancy even though in my case that is not the case but your scoliosis would explain it.
Osteopath for relieving the headaches sound likwe a great idea. Anything you can do to solve any issue will probably help you to have some strength to tackle the others. I try to fix the things I have a better chance at finding a solution while getting the main problem researched, etc. Good luck and keep posting so we can try to help and you never know what might help others.
Janet

[Violet M]

Sel, first of all I understand your fear right now. When I first got PGAD and serious PNE pain I was scared too and could hardly eat. I went on the PGAD forum and it made me incredibly depressed and worried that I would have it the rest of my life. Just to give you some hope...there are many women who have posted on this forum who have had significant improvement in their PGAD symptoms. I'm pretty much cured from it.

I had a very difficult time sleeping also because my PGAD symptoms seemed to get worse when lying down. I found ice helpful, including balloons filled with water and inserted vaginally. You can also get gel ice packs and alternate heat and ice.

It sounds like you have several pain syndromes that may have your central nervous system already overly sensitized to the point that when any new pains come along they are amplified. I think one of your goals right now is to get all of your symptoms calmed down and then you can figure out the etiology of what is causing your symptoms and find treatment for that.

Here is a link to the newsletter that has my article on PGAD in it. http://www.pudendalhope.info/sites/defa ... ne2013.pdf
It may give you some ideas for at least helping to get your symptoms under control. You might want to print out some information from our website at pudendalhope.org to take with you to your appointment in case the physician doesn't seem to have a clue of what might be going on with you. You could first let him come to his own conclusions and then maybe bring up the possibility of having pudendal neuralgia ruled out if he doesn't know what's going on. Good luck with your appointment.

Violet

[Sel]

Thank you Violet and Janet.

Long update after so many days: I went to the appointment and the doctor diagnosed me with provoked and unprovoked vulvodynia with several trigger points inside and an involvement of the pudendal nerve due to the symptoms of PGAD I experience. He prescribed Valium and a triciclic antidepressant, and pelvic PT, which I won't be able to start until 7th of March sadly.. And unfortunately it seems I can't tolerate Valium because it makes me feel like I'm fighting to breathe.

I tried to relax as much as I could and I think that I am slightly improving without any PT yet. The burning on my thighs is gone and only occasionally I get burning feet, but I had burning feet when standing for as long as I remember even sometimes in Elementary school. My pain level is down to around 3-4 at most and sometimes I even experience brief periods of no pain or level 1. It seems my symptoms are moving around everywhere in the pubic area: sometimes the perineum, sometimes the vagina and sometimes the clit and even the groin/labia majora which is most confusing to me. However I still get that arousal feeling every once in a while and it really really scares me because I don't understand what is the best way to go about it. As I understandand it is always indicative of a suffering of the PN so I don't really think that the diagnosis of Vulvodynia is the most correct one, even though he did the Q-tip test on me. I noticed that I have a tender spot inside in my left side and my muscles are extremely hard only on that side, and it's also the side I experience pain and sciatica from, however I think I had tenderness in that spot all my life and even asked my Gynecologist about it but she thought nothing of it. I do not know if this is "Tinel sign" as I don't have enough knowledge of anatomy to understand where the pudendal nerve can be palpated.

It seems that a great deal of nerves are suffering that pass through my pelvis. Also I noticed that I don't really experience any immediate worsening of symptoms upon sitting. What really makes me immediately worse is lying down, especially on my side with my knees bent or standing up too long. I also don't get much relief from sleep because the pain is actually worse when waking up and decreases during the day as I try to relax my muscles as much as possible.

I feel kind of alone because very few doctors in my area are knowledgeable about this disorder.

Violet I have questions for you if you don't mind answering. Do you think that it is possible that I experienced remission of symptoms if I had a true entrapment that made me feel pain as high as level 8 if not higher, like they were trying to tear apart my legs? Also, should I get an appointment with a Surgeon to run all the tests to palpate and check my nerve, maybe even try a nerve block as I have read that sometimes when the nerve is only inflamed/misfiring after a slight injury that they could even be curative if done soon enough. I have been suffering for less than 20 days as of now and I feel kind of pressured to get in contact with someone as soon as possible to avoid it getting worse. Also, last question: in your experience do you feel that having all the symptoms covering every area of the pudendal is indicative of a problem in the roots of the nerve, as opposed to entrapment during the course of it?

I feel like the start of my symptoms is kind of confusing: no falls as of recent, no surgeries ever, never been pregnant. It started after having many orgasms in the span of a few days, and maybe I irritated the nerve by hitting the tender spot too much and the contractions of the orgasms added to it. The only thing I can think of is being sedentary, having posture problems and having sat too long on my coccyx a few days before the symptoms started, as when I got up it ached a lot but the pain was gone in a few minutes and I can't even say that it was that event that started everything as it was not the first time I happened to experience coccyx pain after getting up.

Please forgive my extremely long post but I feel like you are the only people kind and knowledgeable enough that can provide some answers as of right now.

Sel

[Violet M]

Sel, hopefully your PT will be a able to palpate the nerve to determine if you have tenderness at the ischial spine or along the alcock's canal. They can also determine if your pelvic floor is overly tense. Whether to try a nerve block is really an individual decision along with your doctor's advice. The PN physicians say that some people have great results with nerve blocks. Over 11 years of moderating the forum, I've not heard from very many people who had good permanent results from nerve blocks and there is a slight risk of worsening symptoms after nerve blocks. I think they can be a valuable tool in establishing a diagnosis but it might be smart to try some less invasive treatment like PT first before having a series of nerve blocks.

Vulvodynia literally means pain in the vulva area. I think you probably already knew you had that going in without being told by a doctor. The real question is, "what is causing vulvodynia?" if you have it. Pudendal neuropathy can be one of the causes.

Yes, I think you can have an initial bad flare-up in symptoms that calms down over time, or you can have symptoms that develop slowly over time and get worse. Each person is different. I've known people in both categories.

In answer to your question about the problem stemming from the nerve roots or along the course of the nerve, I asked Dr. Attaman that question in and interview which is published at this link: http://www.pudendalhope.info/node/22 Scroll down to the last question in the interview. I will just go ahead and copy that part of the interview here.

Violet: Do you know of any reliable way to determine whether a patient with pain in the distribution area of the pudendal nerve has pudendal neuralgia stemming from the peripheral pudendal nerve as opposed to a spinal radiculopathy?

Dr. Attaman: Great question! Pudendal neuralgia is generally a diagnosis of exclusion.

Spinal radiculopathy will usually have imaging abnormalities on MRI. Radiculopathy is exceedingly rare in the S2-S5 nerve roots. Typical causes are Tarlov’s cysts, fracture, tumor. S2-S5 radiculopathic pain will be incompletely relieved from image-guided pudendal nerve blocks, but completely relieved from selective nerve root blocks. Sensory abnormalities are more common with sacral nerve root pathology as well.

Pudendal neuralgia is diagnosed by image guided pudendal nerve blocks. I generally do two on each affected side with a different local anesthetic each time to rule out false negatives and false positives. For one block I will use a short acting local anesthetic such as Lidocaine which typically lasts 2-4 hours. For the other I will use a long acting local anesthetic such as Bupivicaine or Ropivicaine which typically last 6-12 hours. I do not tell my patient which specific local anesthetic I am using unless they request this information. If I find >80% pain relief after each block, and the pain relief duration is concordant with the expected duration of the local anesthetic used, then I feel confident making the diagnosis of pudendal neuralgia.

MRI neurography may also be used to help rule in pudendal neuralgia. If entrapment or inflammation can clearly be seen, that helps point toward pudendal neuralgia as the problem. However, the presence of MRI neurogram abnormalities alone does not render the diagnosis of pudendal neuralgia. A pudendal nerve may be entrapped or inflamed, yet not be producing any pain at all. That is why pudendal nerve block is so critical.

Finally, pudendal nerve conduction studies can be done. However they are rarely performed and generally done so only at tertiary academic centers.

It used to be that if you made an appointment with one of the PNE surgeons and had a series of nerve blocks, that meant you were sort of headed toward surgery. I think now, many of them work with a team and focus on trying conservative treatments such as PT before even thinking surgery. So, if you are able to, it might not hurt to go ahead and see one of the PN specialists, or you could wait until after your PT appointment and see what they think. Is your PT specifically trained in treating patients with pelvic pain/pudendal neuralgia?

Violet