Edit: I WAS CURED AFTER 22 YEARS! I had a vestibulectomy Dec. 2016. The recovery was easier for me than having sex ever was. It took about 5 weeks. I have included my recovery photos. Look for the blogpost "I'm Cured!"
I’m a great woman with a pissed-off vulva. I have “primary vestibulitis." Most people are uncomfortable discussing their genital pain in public. Well, I’m not…so, welcome to my blog! There aren’t definitive answers in medical literature to explain the pain cycle of pelvic pain and how to heal it - yet. My hope is that my 21-year obsession to find help for myself will make your experience shorter, easier, and less painful. P.S. Recently "vestibulitis" has been renamed to "vestibulodynia."
Pudendal Nerve Entrapment as a Cause
The main symptom of pudendal neuralgia (PN) and pudendal nerve entrapment (PNE) is pain in one or more of the areas innervated by the pudendal nerve or one of its branches. These areas include the rectum, anus, urethra, perineum, and genital area. In women this includes the clitoris, mons pubis, vulva, lower 1/3 of the vagina, and labia. In men this includes the penis and scrotum. But often pain is referred to nearby areas in the pelvis. The symptoms can start suddenly or develop slowly over time. Typically pain gets worse as the day progresses and is worse with sitting. The pain can be on one or both sides and in any of the areas innervated by the pudendal nerve, depending on which nerve fibers and which nerve branches are affected. The skin in these areas may be hypersensitive to touch or pressure (hyperesthesia or allodynia).
Possible symptoms include burning, numbness, increased sensitivity, electric shock or stabbing pain, knife-like or aching pain, feeling of a lump or foreign body in the vagina or rectum, twisting or pinching, abnormal temperature sensations, constipation, pain and straining with bowel movements, straining or burning when urinating, painful intercourse, and sexual dysfunction – including uncomfortable arousal or the opposite problem, decreased sensation.
It is not uncommon for PN to be accompanied by musculoskeletal pain in other parts of the pelvis such as the sacroiliac joint, piriformis muscle, or coccyx. It is usually very difficult to distinguish between PN and pelvic floor dysfunction because they are frequently seen together. Some people refer to this condition as pelvic myoneuropathy which suggests both a neural and muscular component involving tense muscles in the pelvic floor.
Some tests can be used to help diagnose PN/PNE, as described in the diagnosis section. However a large part of diagnosis relies on systematic study of the symptoms. This page is aimed at helping patients and doctors determine the strong possibility of PN/PNE from study of symptoms alone. History is also a factor in the diagnosis so it is important to consider possible causes as well as symptoms.
It can be frightening for the newcomer to read all of these symptoms and can lead to self rationalization that his/her condition cannot be such because it is not so bad at the moment. Remember that most people do not have all the classic symptoms and for most of them the problem started with a small amount of discomfort. Nerves can react in a variety of ways before complaining. So pain may not be the first symptom.
Without treatment, over time there may be a progressive worsening of symptoms starting with a small amount of perineal discomfort that develops into a chronic and constant state of pain that does not decrease even when standing or lying down.
Possible Causes of PN
Pudendal neuralgia can be caused by inflammation of the nerve or by mechanical damage/trauma to the nerve. Sometimes the pain develops slowly and is almost imperceptible at first, sometimes preceded by paresthesia in the area innervated by the pudendal nerve. Paresthesia is a “pins and needles” sensation or a feeling of prickling, numbness, and tingling.
Many people however recall one event in particular as the beginning of their symptoms. Some recall the feeling of a lightning electrical shock after a bad move. Some people report their symptoms started after direct shock like a fall on the buttock or a car accident. Pelvic surgery such as a hysterectomy triggers pudendal neuralgia in some cases even though the nerve was not touched directly. Sometimes there is direct trauma to the nerve during pelvic surgery either from retractors or misplaced sutures. One theory is that the nerve can undergo a stretch injury if the body is in a certain position for a long period of time during surgery. Sometimes women develop pudendal nerve pain immediately following childbirth and while often this eventually subsides, for some women the pain does not go away. Women with severe endometriosis may develop scarring or inflammation if the endometriosis settles on the nerve.
Prolonged sitting at work and frequent long drives are a common cause of compression to the nerve. Sports involving repetitive hip flexion like heavy weight lifting may cause enlarged or strained ligaments or enlarged muscles that impinge on the nerve. Some young athletes have been shown to have an elongated ischial spine, a bone that protrudes into the pelvis near the pudendal nerve. Cycling is a leading favorable risk factor for the development of the condition. In the sports medicine community it is sometimes called “cyclist syndrome”.
One hypothesis suggests that people who have PN were predisposed to have it and something occurred that triggered it. Other people who are predisposed may never develop the condition if they never engage in an activity or experience an incident that triggers it. For instance, someone who is predisposed to PN may take up weightlifting and consequently develop PN while another person who is predisposed but does not weight lift will not develop PN.
Tight muscles, tendons, or enlarged ligaments can lead to constant friction on the nerve or if the pelvis is out of alignment there may be undue pressure on the nerve. For some, the pudendal nerve can follow an irregular path or they may naturally have a tight space between the ligaments at the ischial spine or in the alcock’s canal. Some doctors have seen PN run in families, with several members in successive generations developing PN. Some people tend to form excessive scar tissue and this may lead to entrapment of the nerve. Certain autoimmune or inflammatory illnesses have been linked to pudendal neuralgia.
However, sometimes the cause remains unknown.
Other Possible Symptoms
-The chief symptom is pain in the area innervated by the pudendal nerves such that sitting becomes intolerable.
-The pain may be lessened when sitting on a toilet seat or a doughnut pillow as this lessons the pressure on the pudendal nerve. Most people simply have to avoid sitting because it is impossible to find a cushion that relieves pain in all areas.
-The pain is often not immediate but delayed and continuous and stays long after one has discontinued the activity that caused the pain (stop sitting, cycling, sex...).
-Often the pain is lower in the morning upon awakening and increases throughout the day.
- There may be extreme pain or tenderness along the course of the nerve when the nerve is pressed on via the vagina or rectum.
- Pain in perineum.
- Pain after orgasm.
- Loss of sensation with difficulty achieving orgasm.
- Strange feeling of uncomfortable arousal without sexual desire.
- Intolerance to tight pants or elastic bands around the legs.
- Friction and feeling of inflammation along the course of the nerve when walking for too long or running.
- Constant pain even with standing or lying down.
- Problem with urinary retention after urination. Need to push to empty bladder. Harder to detect the feeling of urine when passing through the urethra.
- Urethral burning with or after urination
- Feeling like the bladder is never empty or feeling the need to urinate even when the bladder is empty.
- Urinary frequency.
- Pain after bowel movement. Sometimes sufferers also report pain prior to and during the bowel movement.
- Painful muscles spasms of the pelvic floor after bowel movement.
- Sexual problems. Men complain of a diminution of sensations. Pain after ejaculation is common. For women pain during and after intercourse is often reported.
-Scrotum/Testicular pain is possible. The testicle itself is innervated by another nerve however the difference in pain from scrotum/testicle can be hard to detect.
- Buttock sciatica and everything that goes with it: numbness, coldness, sizzling sensation in legs, feet, or buttock. This is more often due to a reaction of the surrounding muscles to the pain in the pelvic region. It could also be from "cross talk" of the nerves.
-Low back pain resulting from radiation of the pain.
- The symptoms can be unilateral or bilateral. If the entrapment is only on one side, the pain can also be reflected to the other side.
- Some people develop conditions such as complex regional pain syndrome and even post-traumatic stress disorder after prolonged or severe pain.
For further reading about symptoms see this article from the Nantes team of PN doctors.