First Post - Anyone else with PN from Pelvis Radiation??
Posted: Sat Feb 21, 2015 11:29 pm
Hello Everyone,
This is my first post. Robin here. I’m very thankful to have found this website and forum. I’m a 46 year old professional female in Maine. Here's my story: Last year at this time (2-20-2014), I was diagnosed with anal cancer after a colonoscopy for blood in the stool. It was Stage 1 - T1 N0 M0 - not in my lymph nodes but it was an invasive cancer (squamous cell carcinoma, moderately diffuse, invasive), so they treat it the same as a Stage II anal cancer - no surgery, but I did 28 external beam radiation treatment sessions to my pelvis and 2 rounds of chemotherapy with Mitomycin and 5-FU. I had many tests and confirmed I do not have HPV or HIV. Anal cancer is very rare and I don’t have any of the risk factors. My treatments ended May 1st, 2014, but I've had this debilitating pelvic pain since then. I continued working until the end of 2014 (lying in bed with a laptop and a speakerphone for my client across the country on the West Coast). I am happy to report that two follow up surgeries have revealed no return of the cancer in my rectal/anal area (July 2014 and January 2015). I will have to follow up with my surgeon twice a year for five years to monitor (hopefully we’ll get to the point where he can do an in-office anuscope instead of surgery under general anesthesia.)
I did a lot of research in this time and my symptoms made me think I had radiation damage to the pudendal nerve (adhesion or scar tissue entrapping the nerve or just inflammation). The main reasons I thought this were my symptoms – shooting/burning pain on sitting, no pain on sitting on the toilet, pain on physical activity or bending, and an overall ache even on standing or laying. Last year my pain wasn’t always present in the early morning, but now it seems to be constant.
In addition, I have less control of my anal sphincter on bowel movements and no sexual feeling (numbness in the clitoral area). Unfortunately we delayed using a vaginal dilator to prevent the vaginal stenosis that is common with pelvic radiation and during my cancer check at end of January 2015, my surgeon found my vagina walls had fused together. He separated the fusion and I’ve had an OB-GYN referral that believes everything is fine. I now use a small dilator every other day and will eventually increase the size of the apparatus.
I have been under the care of my Oncologist MD and Radiation Oncologist MD for the last year. They keep my Primary Care doctor informed. I continue to see my Oncologist monthly and the Rad Onc doctor quarterly. I tried acupuncture, which was relaxing, but no pain relief. I underwent 60 Hyperbaric Oxygen Treatments (Oct 2014-Jan 7 2014) in the hopes that that would promote healing (growing new blood vessels) and it’s been known to heal radiation scar tissue. Unfortunately this did not relieve my pain either.
My Rad Onc doctor referred me to Pain Mgt Anesthesiologists (MDs). The Anesthesiologist at first wanted to do a hypogastric plexus block, but after an involved consult she agreed to bilateral pudendal nerve blocks and voila’ that was it! On Feb 12th, I had successful bilateral pudendal nerve blocks (through the back to the nerves by the hip bones where the sciatic nerves also reside – this was Fluoro-guided and done with Xray images). I had some of the medicine spill over to my sciatic nerves and couldn’t walk for a day, but I’m soooooo thankful to finally have the answer!
I'm now officially on disability for work as of just this last week, but that's only going to last about 4 months so we're going to do everything we can to make me better as quick as possible. (Trying to be optimistic).
So we know it's damage to the pudendal nerve. I’m confident this nerve damage is from the radiation I received last year (Feb is the 10th month of this terrible pelvic pain and not being able to sit at all). My lying in bed and working for long hours may have added to the situation unfortunately. On top of that fun, I've been sick as a dog for almost a month - had my cancer check surgery Jan 26th 2015 (which was great to hear still no cancer) but a few other problems - several ER visits and doctor visits with IV fluids. Turns out I'm seriously allergic to sulfa antibiotics and then they changed up my pain meds, had the nerve blocks, and then stopped the meds completely and now opiate withdrawals. Still pretty sick but hope it will only be another week of this. It's a helluva way to lose 20 pounds. My family and friends have been amazing and I couldn't get through this without them!
I start Physical Therapy next Tuesday with a local PT who's trained in pudendal nerve damage. It may or may not help, but I'm going to do EVERYTHING they recommend. Unfortunately I can feel when the nerve block is working (like a knot in your rectal-pelvic area) and it's most of the time (even lying in bed, always on sitting and sometimes just on standing and walking).
I’m starting on Gabapentin (Neurontin) next week once I’m feeling better to see if I can tolerate it without the side effects.
I've reached out to one of the expert surgeons in this - he's in Nashua NH (Dr. Mark Conway). I have a phone consult with him on 3/2 and hope he'll take my case and do an EMG that will show how damaged the nerve is and try to figure out which branch of it is damaged. It could be just inflamed or it could be entrapped by an adhesion (or scar tissue) from the radiation I received last year. Surgery is really last resort in my view as it doesn't have a great success rate, but if it comes to that I'd have him do the surgery.
My hope is we are able to resolve this with physical therapy, medications for nerve health/pain, and lifestyle changes (reduced sitting, learning how to even sleep without putting pressure on the nerve, etc.) I do have to be realistic though and this could be an extended amount of time to get me back to a reasonable level of pain or it could be a career ender. We're not going there yet! Right now I need to get things lined up and I'm dreading when this nerve block wears off (my Anesthesiologist/Pain Mgt Dr is ready to give me a longer acting block next time with more corticosteroids).
That's probably more than enough info for you for now!
I'm so happy to now have an explanation for my pain over the last 10 months since the radiation/chemo last year. This is a good thing. Now I have to educate my local providers on this and get a plan in place to get me better!
I do have several concerns about the future – I am a single woman and a homeowner. My work requires travel all over the US and long hours onsite for clients and a lot of sitting at computers. I cannot imagine not working, but If I am unable to work I will need to file for SSI disability for income (as noted above, my short term and long term disability are only going to last about 4 months because of a cap on the amount of coverage). I know that SSID requires a physician statement to expect this disability to last longer than 1 year. Regardless of my health, I’d like to stay in my home (my closest neighbors are all family members and this is where I need to be), but not sure if I could with no income and paying for KOBRA… but we’ll cross that bridge when we get to it.
I’ve worked in healthcare IT for the last 25 years, but it’s a real eye opener to be on the patient end of healthcare. Thankfully I’ve had excellent care throughout my cancer treatments. I’m hopeful for the future. I know many of you have spent years in pain and I’m so thankful to have doctors who listened to me and are willing to learn about PN/PNE.
Please feel free to send me a note. I’d love to know – are there others who have damage from pelvic radiation? Any other suggestions for my future research or treatment plans? I appreciate your attention
Robin
This is my first post. Robin here. I’m very thankful to have found this website and forum. I’m a 46 year old professional female in Maine. Here's my story: Last year at this time (2-20-2014), I was diagnosed with anal cancer after a colonoscopy for blood in the stool. It was Stage 1 - T1 N0 M0 - not in my lymph nodes but it was an invasive cancer (squamous cell carcinoma, moderately diffuse, invasive), so they treat it the same as a Stage II anal cancer - no surgery, but I did 28 external beam radiation treatment sessions to my pelvis and 2 rounds of chemotherapy with Mitomycin and 5-FU. I had many tests and confirmed I do not have HPV or HIV. Anal cancer is very rare and I don’t have any of the risk factors. My treatments ended May 1st, 2014, but I've had this debilitating pelvic pain since then. I continued working until the end of 2014 (lying in bed with a laptop and a speakerphone for my client across the country on the West Coast). I am happy to report that two follow up surgeries have revealed no return of the cancer in my rectal/anal area (July 2014 and January 2015). I will have to follow up with my surgeon twice a year for five years to monitor (hopefully we’ll get to the point where he can do an in-office anuscope instead of surgery under general anesthesia.)
I did a lot of research in this time and my symptoms made me think I had radiation damage to the pudendal nerve (adhesion or scar tissue entrapping the nerve or just inflammation). The main reasons I thought this were my symptoms – shooting/burning pain on sitting, no pain on sitting on the toilet, pain on physical activity or bending, and an overall ache even on standing or laying. Last year my pain wasn’t always present in the early morning, but now it seems to be constant.
In addition, I have less control of my anal sphincter on bowel movements and no sexual feeling (numbness in the clitoral area). Unfortunately we delayed using a vaginal dilator to prevent the vaginal stenosis that is common with pelvic radiation and during my cancer check at end of January 2015, my surgeon found my vagina walls had fused together. He separated the fusion and I’ve had an OB-GYN referral that believes everything is fine. I now use a small dilator every other day and will eventually increase the size of the apparatus.
I have been under the care of my Oncologist MD and Radiation Oncologist MD for the last year. They keep my Primary Care doctor informed. I continue to see my Oncologist monthly and the Rad Onc doctor quarterly. I tried acupuncture, which was relaxing, but no pain relief. I underwent 60 Hyperbaric Oxygen Treatments (Oct 2014-Jan 7 2014) in the hopes that that would promote healing (growing new blood vessels) and it’s been known to heal radiation scar tissue. Unfortunately this did not relieve my pain either.
My Rad Onc doctor referred me to Pain Mgt Anesthesiologists (MDs). The Anesthesiologist at first wanted to do a hypogastric plexus block, but after an involved consult she agreed to bilateral pudendal nerve blocks and voila’ that was it! On Feb 12th, I had successful bilateral pudendal nerve blocks (through the back to the nerves by the hip bones where the sciatic nerves also reside – this was Fluoro-guided and done with Xray images). I had some of the medicine spill over to my sciatic nerves and couldn’t walk for a day, but I’m soooooo thankful to finally have the answer!
I'm now officially on disability for work as of just this last week, but that's only going to last about 4 months so we're going to do everything we can to make me better as quick as possible. (Trying to be optimistic).
So we know it's damage to the pudendal nerve. I’m confident this nerve damage is from the radiation I received last year (Feb is the 10th month of this terrible pelvic pain and not being able to sit at all). My lying in bed and working for long hours may have added to the situation unfortunately. On top of that fun, I've been sick as a dog for almost a month - had my cancer check surgery Jan 26th 2015 (which was great to hear still no cancer) but a few other problems - several ER visits and doctor visits with IV fluids. Turns out I'm seriously allergic to sulfa antibiotics and then they changed up my pain meds, had the nerve blocks, and then stopped the meds completely and now opiate withdrawals. Still pretty sick but hope it will only be another week of this. It's a helluva way to lose 20 pounds. My family and friends have been amazing and I couldn't get through this without them!
I start Physical Therapy next Tuesday with a local PT who's trained in pudendal nerve damage. It may or may not help, but I'm going to do EVERYTHING they recommend. Unfortunately I can feel when the nerve block is working (like a knot in your rectal-pelvic area) and it's most of the time (even lying in bed, always on sitting and sometimes just on standing and walking).
I’m starting on Gabapentin (Neurontin) next week once I’m feeling better to see if I can tolerate it without the side effects.
I've reached out to one of the expert surgeons in this - he's in Nashua NH (Dr. Mark Conway). I have a phone consult with him on 3/2 and hope he'll take my case and do an EMG that will show how damaged the nerve is and try to figure out which branch of it is damaged. It could be just inflamed or it could be entrapped by an adhesion (or scar tissue) from the radiation I received last year. Surgery is really last resort in my view as it doesn't have a great success rate, but if it comes to that I'd have him do the surgery.
My hope is we are able to resolve this with physical therapy, medications for nerve health/pain, and lifestyle changes (reduced sitting, learning how to even sleep without putting pressure on the nerve, etc.) I do have to be realistic though and this could be an extended amount of time to get me back to a reasonable level of pain or it could be a career ender. We're not going there yet! Right now I need to get things lined up and I'm dreading when this nerve block wears off (my Anesthesiologist/Pain Mgt Dr is ready to give me a longer acting block next time with more corticosteroids).
That's probably more than enough info for you for now!
I'm so happy to now have an explanation for my pain over the last 10 months since the radiation/chemo last year. This is a good thing. Now I have to educate my local providers on this and get a plan in place to get me better!I do have several concerns about the future – I am a single woman and a homeowner. My work requires travel all over the US and long hours onsite for clients and a lot of sitting at computers. I cannot imagine not working, but If I am unable to work I will need to file for SSI disability for income (as noted above, my short term and long term disability are only going to last about 4 months because of a cap on the amount of coverage). I know that SSID requires a physician statement to expect this disability to last longer than 1 year. Regardless of my health, I’d like to stay in my home (my closest neighbors are all family members and this is where I need to be), but not sure if I could with no income and paying for KOBRA… but we’ll cross that bridge when we get to it.
I’ve worked in healthcare IT for the last 25 years, but it’s a real eye opener to be on the patient end of healthcare. Thankfully I’ve had excellent care throughout my cancer treatments. I’m hopeful for the future. I know many of you have spent years in pain and I’m so thankful to have doctors who listened to me and are willing to learn about PN/PNE.
Please feel free to send me a note. I’d love to know – are there others who have damage from pelvic radiation? Any other suggestions for my future research or treatment plans? I appreciate your attention
Robin