Health Organization for Pudendal Education

Hi,
I have been reading more information and I am crying and panicking about all of this today. The short version of my story is that my problem began during the last trimester of pregnancy and c-section. I had intense pelvic pain/arousal feeling that seemed to be cemented with the c-section. My chief complaint was always the arousal feeling. I was intense pain in my pelvic and clitoral area and the only thing that would relieve it for a short period of time was masturbation which took hours. After a hysterectomy which did no good I was finally diagnosed with interstitial cystitis. I thought that was the main culprit. But since then I have also been diagnosed with pelvic floor dysfunction, vulvodynia and told to no longer have intercourse with my husband because it is too painful. Just this last year I was informed about the pudendal nerve through this site and I have all of the symptoms. I went to a pain management center and he immediately thought it was probably the pudendal nerve this whole time. I had a marcaine block in Nov. and it was horrible. It was ultrasound guided but for the week after I had so much pain I thought I was going to jump off a bridge. It was like my body had been turned inside out and all of my nerves were exposed I could not even comb my hair. They did not warn me that there would be a flair up. I do not understand why if I don't self stimulate that the pain becomes excruciating to the point where I cannot walk by the end of the day. What is it about it that makes the clitoris go down and the pelvic pain go away for awhile? I hate the pgad. I have religious beliefs which make it a mortal sin to masturbate.

In the mean time I have not been able to sit down since Sept. I have had an mri and it came back unremarkable. I thought that it was an unreliable source for predicting pudendal nerve damage. I am suppose to go back for another block in 3 weeks and I am terrified.It hurt so bad. I did ask that the staff doctor do this block instead of the resident but they will not guarantee that because it is a teaching hospital. I did notice that the day after the block that I didn't have to masturbate but I don't know if it was because I was distracted that day because a friend was here to visit. I would never have been able to be distracted before however because the pain becomes too intense if I don't self stimulate. I have had to quit every job because of this.

Now I am also reading that I should be tested for lyme disease and I do not understand about the tests. One of the only things I did this past fall and spring was to slowly walk in the woods with my kids. My doctor already thinks i am a nut job for the pgad and now she thinks I am crazy because I keep telling her my body hurts all over and I have days when I can't move my right leg.

I am sorry to be rambling. I don't know where to go from here. I can't get a job and I desperately need one. I am having trouble taking care of my children and I don't know how to get help for that either. The pain center will not prescribe pain meds. I am terribly depressed and once again I apologize. My child is going to be 9 and I have not been even able to be a mother.

Sorry again, I am having a very bad hopeless day and I do not have support from my husband or family so I am hoping that someone out here understands and can help me at least understand what is happening to me. It is impossible to make friends when you cannot even come out of the house anymore.
Thank you,
KC

Kate:

I am so sorry for what you are going through. Many of us on this site can relate to your problems. Like you, I was diagnosed with vulvadynia and pelvic floor dysfunction. It is an inexact diagnosis since it doesn't tell us what is causing our pain. If you can tell us a bit more about yourself we can offer some suggestions. First, when did you problems start, what were your initial symptoms, what kinds of physicians have you seen, and what treatments have you tried? Also, tell us where you live (country, state etc.) so we can advise you on medical practitioners. There are lots of treatments you can try and some of them may help. I have been taking nortriptyline and using a lidocaine/estrogen gel at night. I am currently having a flare but until this week my pain had improved and I am hopeful that it will improve again. I hope you can find some relief soon. You have come to the right place.

Greeneyes

Kate, there is a long thread about PGAD that you might find helpful: http://www.pudendalhope.info/forum/view ... =48&t=1590

There are suggestions in that thread for meds that might help. Not sure what you have already tried but some of the meds women have found helpful are SSRI or tricyclic antidepressants, lyrica or neurontin, and tramadol which is one of the weaker narcotics and you might be able to get your doc to prescribe. Ice is also very good for some temporary relief (including frozen balloons inserted vaginally). Over-the-counter extra strength vagisil might help a bit, or lidocaine that is formulated to be inserted vaginally. Valium inserted vaginally helps some people.

I'm assuming you have been evaluated by a pelvic floor PT since you have a diagnosis of pelvic floor dysfunction? Was this person knowledgeable about pudendal neuralgia and PGAD? Was it painful when they pressed along the course of the nerve? If you have not already been evaluated for musculoskeletal misalignments and SIJD that is probably something you want to have done. Your right leg issues suggest you might have some piriformis/sciatic involvement or possibly some type of mechanical problem. Before my PNE surgery I was dragging my right leg. That is mostly cured now along with the PGAD.

Not sure what type of MRI you had but pudendal nerve entrapment does not show up on most MRI's. Sometimes 3T MRI's with special software show something but they are not 100% accurate. It is important to have the MRI though to make sure you don't have any sacral nerve root impingements.

I had a nerve block that made PGAD/pain worse and none of my nerve blocks ever took the PGAD completely away. So I would not count on any type of cure from a nerve block. Some physicians consider pudendal nerve blocks primarily diagnostic -- that is, if they improve your symptoms even for a few hours then your problems are likely pudendal nerve related. If you are considering going the surgical route you will probably have to have a series of blocks first as most surgeons require them but otherwise, we don't hear of many successes with nerve blocks as far as getting permanent relief.

Are you able to sleep at night? I found clonazepam helpful for sleep, some women like soma. I don't know where you live but if it's possible to change to a doctor that is more compassionate and willing to prescribe some meds to help get you through this that might be something to consider.

It's a long journey but with the right treatments hopefully you will be able to get a lot of your life back. Be strong for your family and keep fighting. You have options but with this illness you have to be pro-active and be your own health care advocate in finding the right physicians/treatments that work for you. That might mean traveling if you can't find any locally.

Take care,

Violet