Looking for advice

[dlb]

Hello,
I have been reading your forum for a few months now and finally decided to send my story in hopes of some advice.
In July I began to have lower abdominal pain, with a slight feeling of getting a urinary tract infection. I went to the dr. and they checked, but said nothing showed up. A few days later it was getting worse so I went to a doctors care. They too said nothing showed up. The pain continued so I went to the hospital on a Sunday evening and they told me I had a cyst on my ovary, to see my gyno and sent me on my way. At the time I did not have a gyno (only lived in this area a couple of years and well past child bearing). My family dr. referred me to a gyno, but the appt was for a month away. He also prescribed me hydrocodone for pain. The pain persisted and kept getting worse with pain in my crotch and then running down my right leg into my foot. I went to see my family dr. again and he had another ultrasound done and told me to hang in there. When I finally got to the gyno appt. the dr. spent less than 7 minutes with me (including the exam). He said the cyst was gone, he couldn't help and was sending me to a different gyno in Nashville. Fortunately they saw me the next week and said that it still could be my right ovary, but may be neurological. The dr. agreed to talk to some colleagues and called the next day to say he had spoke with their pain urogynocolgist and she had agreed to work with him. I went to see her and she said she thought couldn't say for sure, it was either my ovary or piriformis muscle in spasm. She said removing the ovary was 50/50 to relieving my pain so I took the chance. Unfortunately it did not work. She then sent me to PT (internal). I tried that for weeks with no improvement. My PT said she had not seen a case of muscles in such spasm and no matter what she did they would not release...not even with simple relaxation techniques that she said usually will release the muscle for a minute. She was concerned that an MRI had not been done so one was scheduled. they did my lower back and pelvis with no large findings...a few small tears and degeneration which they called normal. She then set me up with an appt at the pain intervention center in their facility (this is at VAnderbilt in Nashville).
The dr. there said she could not say for sure which nerve it may be, but something was probably entrapped or it is my SI joint. She scheduled me for a pudendal nerve block which was yesterday. Needless to say once again no relief.
At this point I am so disappointed and the pain has magnified 100 times to where it was in July. They have kept me on hydrocodone and today finally added tizanadine to take at night for muscles. The only other meds I have taken is gabapentin (only because I was prescribed this for migraines a year ago. the Dr. had actually taken me off of it, but they said I could try it ...never really gave me any ideas of dosage etc.)
I am really at a loss...it has totally taken over my life....sitting is painful, riding in the car, work becomes unbearable! my only relief comes from laying down it seems, and even now that seems to be diminishing. I feel best when I first wake up, but as the day progresses I can hardly bear it.
At this point I feel like there is no hope left....the pain clinic said when I come to my next appt. (in a month) they will discuss other block ideas (obturator, Si joint and something that started with a "g"). My urogynocogist is out of town until next week...I had messaged her for ideas. She once had suggested a interventional radiologist if the pain block didn't work but I don't even know what that is. I feel like every thing I try doesn't work and then they make me wait a month to get back in to "discuss" alternatives.
I am a 44 yr old female who is and was not physically active, played no sports and had no type of accident or injury. Where did this come from and why won't it go away? I feel like someone has a huge clamp on my crotch and keeps tightening down on it....I still have pain where they removed the ovary....pain that runs down my inner thigh into the bottom of my foot and when I walk each step shoots pain.
If anyone has advice or suggestions as to what they think I should do next I would greatly appreciate it. I don't know whether to try to find another Dr. (Vanderbilt is known for being awesome...but the wait for appointments just drags this on and the pain worsens by the day).
I sleep with ice between my legs and a heating pad on my back side. I feel like my whole life has changed and I just want it back. The hopeless feeling at times is so overwhelming They tell me to avoid stress, but 2 weeks ago I found out my father has cancer and that same night my mother was driving home from the emergency room where she found out and someone threw a brick through her windshield. I flew home for a week to take care of them....my father is terminal...needless to say, stress is not avoidable at the moment.

I seem to have written a book....so sorry...desperately looking for help!

[pn_person]

sorry you are in so much pain..that is horrible

specialist tend to think only within their own specialty

if the pain management doc you have been seeing is not a neurologist, I would see a neurologist and I would definitely see a vascular surgeon since you describe pain down the inside of your leg into your foot

this is in the past now for you, but I find it remarkable that you had surgery to remove an ovary without an MRI, or CAT scan first..that sounds insane to me

anyway, others here will have advice for you too, as they are way more knowledgable regarding PN issues if that is indeed what it is

one other thing I would strongly recommend is to get on a benzodiazepine (valium, ativan, xanax, etc)..the preferred one here seem to be valium for muscle relaxation, but any would serve you well regarding your anxiety which obviously and understandably out of control

just reducing the anxiety might help your symptoms a bit..that would be fairly typical

feel better!

[carolynm]

dlb,

I would first and foremost take contol of this situation yourself. Be aggressive. I think you should have one doctor managing your care, preferably the urogynecologist. Can you get in to see him/her next week? Start making a list of all of your questions, including your thoughts about PN. Also, find out where your pudendal block was done anatomically. There are a few common places but that will help you with your diagnosis. An interventional radiologist performs procedures under Ct, fluroscopy, etc. and could do a good diagnostic pudendal block on you. Usually they start with the places "higher up" on the nerve, like the obturator muscle, give you a few minutes to judge your pain relief, then move to the next site of common entrapment, i.e. at the SS or ST ligaments.

Is your pain under control? The gapapentin (neurontin) is a common one for nerve pain. You can slowly titrate up to 3600 mg/day in 3-4 divided doses.

Please try to get an appt with the specialist as soon as possible so you can both figure out a plan of attack.

best of luck to you,
cari

[Violet M]

Hello dlb,

What a difficult time you have had I'm sorry you are on this desperate journey and that your parents are needing you at a time when you are struggling yourself.

Just a couple of questions --

1. Do you know where the pudendal nerve block was targeted to (what part of the nerve) and was it done through the buttocks using image guidance or was it done vaginally? The ones done vaginally aren't considered real accurate.
2. After the block, did you temporarily lose sensation in the distribution area of the pudendal nerve (the genital /rectal area)? If not, the medication may not have actually gotten to the nerve. If you did lose sensation or felt numb, was there any pain relief even for a couple of hours? The anesthetic usually only lasts a few hours.
3. Was your physical therapist trained in treating pudendal neuralgia specifically? Is there tenderness along the course of the pudendal nerve when the PT presses in that area? A good pudendal PT should be able to answer this question.

Sorry for all of the questions but the answers to these questions are important for your docs to make a diagnosis.
Many of the members of this forum have had to travel to one of the specialists listed on our website for treatment and diagnosis. We have not heard from our Tennessee members of any specialists in the Nashville area who are real experts in PNE. I'm not saying there aren't any -- we just haven't heard of them. I'll try to contact one of our Nashville members and see if she would be willing to talk to you.

Violet M

[helenlegs 11]

Hi dlb,
Having the pain you describe is difficult enough. . . so sorry to read how dreadful things have been for you.
A tight piriformis muscle can cause pudendal neuralgia and vice versa and some of the symptoms you describe make me think you have come to the right place here. We will certainly try and give you all the help you may need to make some sense of it all.
Take care,
Helen

[Violet M]

Dlb,

The docs my friend in TN sees are not in Nashville but in nearby Franklin -- Dr. Jarnagin and radiologist Jeff Landman. She does not recommend anyone in Nashville. She says that the best PT in TN is Cate Langley in Franklin. I've no idea -- I haven't been to any of them but this is who a local gal recommends. Good luck!

[dlb]

Sorry for the long delay in getting back on here. My father's condition worsened and I had to go home. He lost his battle after 10 days. I stayed home through Thanksgiving to help my mother....
While I was gone my Dr. contacted me with some suggestions...I wasn't sure if I should put the info/questions on this post or another so I made a new one under nerve blocks, but thought maybe I should add it here too...


I have had one pudendal nerve block, which did not seem to work. My Urogynocologist has said she would refer me to a orthopedic dr. or a interventional radiologist...or I can go back to the pain clinic who gave me the pudendal nerve block and have them try again/or something else.
Does anyone have any advice...I'm really not sure what to do, or if there is an advantage to one over the other. I have an appointment with the pain clinic on Thursday to discuss why the nerve block didn't work and options...I am assuming they will suggest I come back to them to try again.
Right now I am on Gabapentin, a muscle relaxer (sorry, forgot name) and hydrocodone. Seems that regardless of what I take the pain does not go away. I am also in PT.
Any advice would be appreciated.
Thanks

[carolynm]

I think once you can tell us more about where the block was done (i.e. at what level of the nerve)....we could try to point you in a direction. Be sure to ask at your next appt.

cm