Health Organization for Pudendal Education

MY PAIN JOURNEY

I always had very painful periods and ovulation. When I ovulated on my left side I would feel a lot of full abdomen pressure and it would radiate down my leg to my knee. My first baby weighed 8lbs 13oz and was posterior. My labor was 36 housr long and she was delivered with forceps with a broken collar bone.

Around 1983, I slid down a flight of steps on my bottom and hit the cement floor hard onto my tail bone fracturing it. I have had several flare-ups since the fall.

About 10 years ago I fell onto a slippery floor at a grocery store. My left leg went out in front of me and my Rt leg behind me. I landed on my Lt ischael tuberosity. I saw a chiropractor for back and hip pain and didn’t work for 6 weeks.

For about 13 years I was a road warrior for my job so drove a lot. I remember always sitting on a neck pillow to relieve the pain in my tail bone and sit bone.

6 years ago I had surgery for thoracic outlet syndrome. It was about this time that I really started to notice that the burning on the Lt sit bone got much worse after prolonged sitting. After my recovery, I started working as a home health nurse, so again I was in and out of my car a lot and sitting a lot in people’s homes. It was around this time that I really got into exercising. The pain was there, but it didn’t debilitate me. I also experiencd severe Lt sciatica pain and therapy which lasted about 3 months. I had carpal tunnel surgery in 2009.

In April 2011, I became a foot care nurse. I am able to stand while caring for my patient’s feet. I developed plantar fasciitis. Standing on a padded mat and therapy have helped that. In November 2012, I joined Curves. The end of January I notice that the burning was getting much worse. At this time I was sitting more at work due to more paperwork. In February 2013 I saw a PA who ordered physical therapy for me. It lasted 2 weeks with no improvement. I had a Lt hip xray (normal) and a Lt hip MRI. The MRI showed I had a labral tear and tendonitis/bursitis in the hamstring area. I saw an orthopedic doc who did a cortisone injection in the hamstring area. It last about a day. Acutally the pain is worse; it feels like a horse kicked me in the butt and I have a very deep ache &stabbing pains up to the vagina/groin area. The burning pain is 8-9/10 when I sit. I called the ortho doc back and he told me to consult with a pain dr. I did and he told me he would do epidural block at L4-5 and started me on Butrans pain patch at 5mcg, that wasn’t enough so took Tylenol #4 for breakthrough pain. After the epidural, the pain was relieved for a couple of days, then returned. My TENS and ice work really well.

The ortho doctor wanted me to have another MRI with contrast. At this time I decided to get another ortho consult. I am now having stabbing pains, like electrical shocks in the groin with aching down my leg. Lying down now also causes me pain. I can get to sleep if I prop a pillow under my leg, apply ice to the butt and a heat pack to the front groin. Hubby bought me Bose head phones for my birthday and I fall asleep listening to Spa music. Once I get to sleep I can usually sleep through the night, but it often takes me a while to get the pain under control.

Had the 2nd ortho opinion and he says I do not need an MRI w/contrast. He also doesn’t think it is an ortho problem and wants me to see a qynecologist. I had a transvaginal ultrasound and it is normal. He increased the Butrans patch to 10 mcg which has helped a lot. I have an appt with GYN on Tuesday May 28.

Some of my other symptoms include leaking of urine; sometimes it takes me forever to start voiding, like I just can’t force it out. I also have burning with urination. I do not have a UTI. I have been constipated for years; frequently have to assist the BM. I have a lot of pain with and after intercourse. It feels like I have a knife stabbing me and a lot of burning. I can't stand to have underwear or clothes touching the burning area. Actually would love to go naked, but doubt that would work out very well.

At this point I’m not sure that the GYN will be able to help me or believe me. I am not willing to do a lot of unnecessary tests to rule out GYN problems. I want an MRI that will be able to see if the pudendal nerve is compressed. I am willing to try pudendal nerve blocks to see if they help with the diagnosis. I have already tried PT, so know it only makes it worse. Botox is not an option because I don’t think insurance will pay for it. When I do have to sit I sit on a neck pillow or a small child’s round swim ring.

My life has changed so much in the past 4 months. I go to work, stand most of the day, but when I sit I have pain. I don’t like how I feel on the Brutrans pain patch, but it works. As the day goes on I continue to have worsening pain. By the time I get home, all I can do is lay down. Going out for dinner, movie, concert, ball game, hiking, etc are all out. I cry at the drop of a hat, so know I am frustrated and depressed. I don’t like who I’ve become.

Any suggestions where I should to start to rule out PNE? I live in Colorado.

Welcome - so sorry to hear all the struggles. A few suggestions from our patterns seen before: see a PT that know PN/PNE (mine and others were diagnosed with PNE by PT and there is a list on the homepage for you to find one in your state), the pudendal nerve blocks do help with diagnosis, and some people had an MRI from Dr Potter in NY that showed the compression( I had an MRN rather than MRI but it did not show PNE). since others had some or all pain resolvedby fixing labral hip tear you may what to fix that first. Other possible problems are hernia and tarvlov cysts. Best of ,uck and the more experienced people will write in to guide you most of what I said was from earlier guidance to others. Hang in there and the faqs on the home has a lot of info and medicines that can help with the pain until you get this sorted out.
Janet

Had an appointment with a GYN doc today. She told me there are no nerves in the area where I am having pain (where I sit up close to my vagina). She thinks I have what "she" had once...semitendinosis and wants me to her therapist to rule this out. I'm afraid to go because I still think I have nerve involvement. The 2 ortho consults I had said it wasn't the hamstring. I feel like I'm in a revolving door. Where do I go from here?

It is well documented in scientific literature that the pudendal nerve innervates the lower third of the vagina so even if the main trunk of the nerve isn't there, pathology higher up in the main trunk can cause pain in that area. Also, the perineal branch of the pudendal nerve can cause pain near the opening of the vagina where the leg meets up with the body. But, I think it would not be a bad idea to have other potential problems such as semitendinosis ruled out, especially if the therapist is experienced in dealing with pelvic floor issues - hopefully including pudendal neuralgia.

Not sure where you live in Colorado but there are some excellent docs and PT's there who deal with PN. You can check out the list at pudendalhope.org.

When I had PNE the burning pain affected my legs. So many pelvic floor/butt muscles went into spasm I had sciatica too. I think a good PT might be able to help you sort this out a bit.

Violet

Thank you, Violet. I managed to get an appt in August in Denver with a urologist, Nel Gerig, who can help me diagnose PN. Also will be working with a physical therapist here in Colorado Springs prior to that who has knowledge of PN. Anxious to get started. Thank you for all the info and encouragement. This is a long, drawn out, frustrating process.

Hi kmerrit, welcome,
Just as sciatica which can affect all or some of the leg in the distribution of the sciatic nerve, the actual point of the problem is much higher up; usually in the lower spine (or pelvis of course ) so pudendal nerve pain can affect the whole area or just some of the area in the distribution of the pudendal nerve which includes much of the vagina as Violet mentions above. I would also get any other stuff ruled out as problematic, like semitendinosis too. However I would read up on that so that you know exactly what is involved and can therefore have your own input.
Also ask if they think that your pain could be in the distribution of the pudendal nerve or words to that effect and see what the response is. It only makes sense to talk to medics who are pudendal nerve aware if the problem may be with that nerve. If they are not pudendal nerve aware you may well be wasting your (and their) time.
Hope you get some answers soon.
Take care,
Helen

Hi kmerrit,

I wanted to let you know that so much of where you described your pain is exactly where my pain is. I had an MRI two weeks ago which was read by Dr. Potter. Her finding was, " entrapment of the inferior perineal branches of the pudendal distribution". I also have entrapment in the dorsal nerve to the clitoris, but the pain at the opening of the vagina which radiates to the ischial tuberosity and hamstring is the perineal branch I am convinced. I also had PT for hamstring tendinopathy, etc......to no avail.

I am also new to all this and am trying to navigate these difficult waters. There is hope and pain management, but I understand your frustration and anger at having to give up movies, concerts, games dinners, etc. I am still trying to find the right medication to help with the pain and I too feel like I don't know myself anymore as chronic pain definitely changes your mood and how to relate to others.

I am very encouraged and grateful for this site and all the valuable resources and voices of people who have been through this and have wonderful insights for those of us who are new.

Hang in there as you continue to search for answers. I think there are things to help us.....we just have to keep looking.....and stay positive (not always easy, I know).

I'm beginning to realize I have found some new friends who totally understand me. My 3 grandchildren are visiting me for 2 weeks and I haven't gotten to do hardly anything with them. Last night they all came up to my bed at 7 pm and we had ice cream in bed. Can anyone relate? I would love to take them to the zoo, but am afraid I will not be able to walk up all the hills and sitting down to rest isn't an option. Suppose I could go out to the SUV and lay down in the back of it.

I'm very anxious to start my therapy next week and see if the PT can help with my diagnosis. My pain is much better this week, but think I am finally getting used to the Butrans pain patch and the nortriptyline. I can finally make it through a work day, but by the time I get home I'm ready to lay down for the night.

Thanks again for the support. I'm sure I'll have many more questions.

K, maybe your PT in Colorado Springs will know a physician in your area who treats PN. I know what you mean about the patience required while you are waiting for appointments. I guess that's why we are called patients???

That's brilliant that you had ice cream in bed with your grandchildren. Part of surviving PN is learning to adapt and find ways to still enjoy life as much as possible.

Take care,

Violet

Love the ice cream in bed with your grandchildren K and the fact that you can make it through the day now. . . I do want to mention pacing as this for me anyway is a great 'tool' allowing a more functional whole day and evening. I don't necessarily meaning a lie down or finding whatever is your most comfortable position and doing nothing (although sometimes that is a fab idea)
Some easy stretches, shoulder shrugs, head and foot rotation etc or meditation, deep breathing, even drinking a glass of ice cold water, then you know you are doing something good for your whole body and taking time for you proactively.
I'm the type of person who will just keep on going then collapse and pacing my day doesn't come naturally but I know that it helps enormously.
I know when I am in major pain that it is usually simply my own fault but then some things are worth it
Yes that is the wonderful thing about HOPE we are all in this together, I too have found so many friends here, they are all a blessing
Take care all,

Helen