Looking for Help

[Jami]

I am a 49 year old female that had a rectal bleeding problem combined with severe pain. I was able to function in the normal world except when it was acting up. I saw my doctor who sent me to two different surgeons, in two different cities and had two different colonoscopies in one year. Neither colonoscopy showed anything. The problem continued and in January of this year I went to another surgeon who found a tear in my large sphynctor muscle. He did a "Lateral Internal Sphynctorectomy". Anyone ever heard of that? They cut the large sphynctor muscle in half. They told me to expect bleeding and discharge and possible permanent incontanance. I had none of those symptoms. The rectal problem was cured. But as I came off the pain meds, I began a horrible 7 month journey into unbelievable pain. It is like the worst menstrual cramps I ever had times a thousand and I had a ful hysterectomy 9 years ago. My D.O. is convinced its all in my head (he also thought the rectal bleeding was stress). My surgeon did a Laproscopic day surgery for adhesions which turned into a long hospital stay for bowel resection after removing something called a meckle diverticulum. As I weaned off the narcotics after that surgery, the same pelvic floor, genital pain was back with full vengence. I went to a gynocologist as the surgeon's notes said he had removed what "appeared" to be live endometriosis. After 7 weeks of treatment and pain meds and having my estrogen taken from me, the original surgeon's notes were updated to include a biopsy that proved removed tissue was not endometriosis but some kind of cysts. Back on estrogen (thank goodness) taken off pain meds, I was sent away with the same horrible pain in my pelvis 24/7. I was an executive in the retail business for 25 years. I am now unemployed, I have no insurance, I have not left my house in 7 months except to doctors who won't help me. I have been searching for answers and came across your site. Every symptom you list here up to and including painful hypersensitivity fits. I took the information to my DO who assured me that the rectal surgery I had would not cause nerve damage and it was a coincidence that the pain started right after it. I cry all day, every day, in pain beginning to feel like dying is my only option. The pain is far too severe to live. I need to know if this nerve can cause this severity of pain. Can the cutting of a sphynctor muscle have caused the pain? I have had 6 pelvic surgeries in my life and have been told I have unprecidentented healing ability and high pain tolerance. I can't live with this pain.

[susibee]

Jami,

I am so sorry for what you have been through. It's awful that when we are in the most pain and the most vulnerable, we often have to be the most in charge of our own care. So, I'm glad you found this website, as it is a good source of information.

Can you say more about your pain? Where is it exactly? Is it burning, stabbing, aching, or something else? Does anything trigger it? certain movements? sitting? something else?

Also, where are you located? What medications have you tried? Are you using ice? Have you seen a PT?

I'm sorry to ask so many questions, but more details about your pain can help you decide if it sounds like pudendal neuralgia (it defnitely could be, as a result of rectal surgery, in my opinion), and it's good to know what you've tried so far as treatment.

Please hang in there!

[Jami]

My pain, as I decribed, is much like severe menstrual cramps. Constant ache below bikini line, stabbing and aching pain down vaginal cavity (would describe it as cervical pain if I had a cervix). Aching in rectum. Pain so severe I go out of my head. I live in a tiny town on the Oregon Coast. My husband and I bought our dream home here. He got ill six years ago and the same local doctors and hospitals told me his pain was from a fractured disc. I had to leave my job to take care of him as he was wasting. He died 10 days after diagnosis from pancreatic cancer, January 2006. I went back to work until this year when this pain started and could not be explained. I lived and worked with my rectal pain and bleeding for a year before they found the tear in my sphynctor muscle. The surgeon said that pain had to be unbearable. I was so excited when they found it and happy to have the surgery. But it all turned out this way. Then the exploratory surgery which turned into an unnessary bowel resection has now completely herniated so I need surgery to have that repaired. I will have no more surgery until they figure this pain out in my pelvis. There is no pain like this. The doctors have had me on as much as 80 mg per day of oxycodone. I am afraid of addiction so have been weaning off of it - down to 20 mg per day. I have also began trying something called Gabapentin - 1500 mg. per day. Takes the edge off the pain but not enough to live my life. The pain gets worse when sitting and it is agony to ride in a car. Gravity is not my friend either for long periods. I just lie down right on the floor if the pain gets bad. Feels like my insides may fall out the bottom otherwise. Most of the time it is the couch and a heating pad between my legs. I have the name of a pelvic floor PT but it is all the way in Portland (3 hour drive). I am going to a urogynocologist in Springfield next week....I finally found one. Again, a long excruciating ride. I try not to get my hopes up. The disappointment of misdiagnosis and lack of relief can sometimes make your heart die as much as the pain on the mind. Thanks for caring Susiebee

[greeneyes]

Jami,

Your story is heartbreaking and many of us can identify with your pain. You mentioned a fear of addiction. There's a difference between dependence and addiction. I have used opiate painkillers for about 15 years for chronic back pain and PN and have never become addicted. I have never experienced the "high" that drug abusers describe. I have been on about the same dosage for many years. My body has developed a dependence on the Methodone I use. This means that if I decide to get off the drug I will need to do it very slowly. The pain you describe sounds awful and it is not good for you to be in that state. It is important to get your pain under control. If opiates can do that then don't be afraid to use them. Few people who take opiates for chronic pain become addicted.

[calluna]

Hi Jami

I am so sorry to hear that things are so difficult for you and that you are in such pain.

Pain from nerves - neurogenic pain - behaves rather differently from other pain, most of the meds that we know as painkillers simply do not work. The gabapentin that you are taking is actually an anticonvulsant that also gives pain relief for neurogenic pain, it is good that it has started to take the edge off - but you need more than that. And your pain does sound like PN pain, and yes it can be this severe.

Whether or not it was caused by the rectal surgery is really beside the point and I don't know that it is going to be helpful to focus on it. People have got this condition from cycling, weightlifting, damage during surgery (like me and you), from too much sitting, from congenital abnormality, and the list goes on. It does not really matter whether it is coincidence or not.

What matters is getting your pain under control.

Gabapentin 1500mg a day - this is not a high dose, it can go up a lot more. Please go back to your doctor and let her know that it has helped a little bit, I am sure that she will increase your dosage. Have a look here - this is information from the Pain Clinic that I have attended. Scroll down a bit and you'll see where it talks about gabapentin.

There are other meds that can be added in here, probably amitriptyline would be the first one to try but there are many others. Many people get their best pain relief with a combination of anticonvulsant (like gabapentin) and antidepressant (such as amitriptyline). Tramadol is another med to consider, it is not a true opiate and has more effect on neurogenic pain. I have found the slow release version much more helpful than the immediate sort, this was suggested by the Pain Clinic I attended.

For a degree of immediate pain relief, ice is surprisingly good. A gel pack with a cover is ideal, but failing that a pack of frozen peas wrapped in a teatowel. You could give it a try.

Please don't sit at all without a special cushion. Sitting makes PN get worse. This is a major lifestyle change, but it makes a major difference. It has now become automatic for most of us on here - we avoid sitting like the plague, if we have to sit then we use a cushion that helps us. Have a read through the FAQs on the main part of this website, for more information about this. I like the Togu Air Active cushion from Amazon, you want the one that looks like two separate pads with a little bit connecting them, lots of people like IC cushions but I haven't found anywhere to buy them over here in the UK.

By the way, when you go to see your doctor, you might like to take along a copy of the HOPE fact sheet, and a copy of the Pain Scale so that she knows what you are talking about.

This pain can be brought under control, please don't give up. Please go back to your doctor as soon as you can, and ask for more help.

And please keep posting! - let us know how you get on, we are here for you.

[Laura]

Hi JAMI,

I'M also so sorry to hear about your pain. I too live in a small town on the Washington coast. I have PN and have just come back from seattle.... first visit seeing a Dr there for my pain. His name is Dr Attaman http://www.jasonattaman.com.
He helps people in chronic pain.
I agree with everyone here...don't worry about getting addicted to pain meds. You need to control the pain as best you can. PLEASE KEEP IN TOUCH. This is a very caring and helpful community.

[Lernica]

Jami,

I'm very sorry to hear about everything you have been through. I am especially sorry to hear about your husband. You have been through an extraordinarily difficult time.

It does sound suspiciously like PN that you have. Painful sitting is a hallmark of PN. In fact, my pain doctor once told me that whenever he sees a patient in the waiting room who can't sit, he immediately suspects PN. So you may have finally found a diagnosis! With the support and guidance and information on this website and forum, you can move ahead with a treatment plan, with getting better and with getting a life back.

I agree with what everyone has said above about opiates. You may need to take them to get your pain under control. 20 mg. of oxycodone a day for someone in the pain that you are in does not sound like enough. Please do whatever you need to get your pain under control. Increasing the gabapentin sounds like a good idea too, given that it has proven to be somewhat helpful. And I do like the idea of seeing that pain management doctor. He should be able to help you. Once you get the pain under control, you can start thinking clearly about what treatment options to pursue, including possible surgery with a PN surgeon listed on this website.

If you have to drive to your medical appointments, please do not sit! Instead, if you can get someone to drive you, you should lie down in the car, either on the back seat or inclined in the front passenger seat as far back as you can. Lately my favorite position in the car has been lying on my tummy on a fully reclined front passenger seat. I have discovered that in this position I can drive for hours. It has enabled me to drive to the countryside for the first time in almost two years.

Please read through this website as thoroughly as you can and keep us posted with your progress. Please remember that you are not alone! We will always be here for you.

All my best.

[donstore]

Jami,
I can't add much to the excellent advice already given on this thread except to also urge you to do what you have to to get your pain under control. As mentioned above, dependence and addicton are quite different. A higher dose of oxycodone if it helps or methadone which many have found to be effective. Lyrica works faster and you can increase the dose faster. It is still under patent so costs your health plan more than gabapentin. I'm not a doctor but what you describes sounds like nerve damage to me especially starting right after your surgery. Doctors hate to speak ill of other doctors especiallly ones they know. Keep this in mind when evaluating their advice. Your DO sounds like a real jerk and a bad doctor. I would get another doctor that he doesn't recommend or even know if you can. There is hope but you have to find the right doctors to have a shot and that's not easy. Let us know how you're doing.

Best Wishes,

Don

[Jami]

To all responding to my cry for help, thank you. This is the first time I have ever written into any website in my life. You have all lessened the burden of feeling alone. I never imagined anyone understanding the confusion that pain can cause. I never imagined that there was chronic pain like this without a fatal diagnosis. Your advice is invaluable and the fact that I just might not be going insane is comforting. After 7 months of this pain, I have begun to lose sense of self. Last night I literally screamed for two hours, insane, grabbing at my private parts, wanting to take a knife to myself and dig for the where the pain was coming from. Do any of you have trouble pinpointing exactly where your pain eminates from? It is just "inside" my pelvis. My general DO has frightened me so badly with th evils of opiates. I finally took the oxycodone I needed but at that point it takes a long time to kick in. The gabapentin works if I stay lying down. The Oxy is what helps me sit a moment and write to you. I will let you know how my appt goes on Wednesday. I also printed the doctor information for the doctor in Seattle someone suggested here. I worked for the Bon Marche' for 23 years so lived in Seattle most of my life. Thanks again to you all. Jami

[bradley]

Jami,

I live in Oregon as well (near Springfield actually). I know you said Portland is quite a ways from you, but while I was searching for PT's (there are several in Eugene and a lot all the way up to PDX) I found that OHSU does pudendal treatments with Gynocologists. Don't know if they could help you, but check their website. I stopped looking in to it there because it was for women only.

If I find any other "local" options I will tell you. Be sure to try donut cushions or any other thing that can help during the rides and stop sitting on it for as often as you can. Your pain is much greater than mine and I can't imagine what you must be going through.

Brad