Possible PN?

[Jorkev89]

Hello! I was a healthy 27 year old until april of this year. I developed a quite large anal fissure as a result of chronic constipation. The fissure brought about painful muscle spasms that would subside with sitz baths and medication. After 3 months of topical ointments, the fissure would not heal on its own. My pcp referred me to a colo rectal surgeon, who suggested a lateral internal sphincterotomy. Recovery from the surgery was great and i felt very little pain, no meds necessary.. 2 weeks later, I began to feel a slight sting on the left side of my rectum. Not very deep inside, maybe a few inches above the external sphincter. I thought nothing of it and continued to do daily sitz baths to keep my muscles relaxed. About 2 month ago, the pain on my rectum intensified, and spread to my perineum. This makes sitting uncomfortable. After about a few minutes of sitting, i feel burning on perineal area and tingling/burning on the left side of rectum. My CRS reexamined me in November and concluded I was healed. However, she noted my rectum was very tight. I am currently scheduled for pelvic floor PT. Im not sure whether the surgery or the fissure are responsible for my symptoms, but im really scared that i may have PN. My symptoms have progressively worsened and I fear the worst. Im taking every precaution possible to avoid sitting and to take it easy until I see how i respond to PT. Are these symptoms consistent with PN? How in the world would I have gotten it?

[Susan1-2]

It could be muscle spasm pushing on the perineal branch. Look at Pudendalhope.org. Find the right physiotherapist on that site or call one on that site and ask for their opinion. If you don't get results from physiotherapist look up Dr. Dellon.com and read about neuromas. Chapter 12 under pain solutions. Don't waste your time with the doctors. I went through many and they don't know how to deal with it besides giving you a drug. Or they will say you need surgery again and I have heard of many failures. I almost ended up that route. Thank God I didn't. Also, scar tissue can cause problems and the physiotherapist could break up some of that. My physiotherapist could not so I went to surgery with Dr. Dellon. Don't wait and get in a pool and swim. It will take the pressure off the muscles and give you some relief but avoid the breast stroke. It will stretch the area. In my opinion the smaller the poop the less pain and spasm. Go on the SCD diet until you get it figured out. Good fats in your diet olives, coconut oil, olive oil(real stuff), fish, etc. The worse thing you can do is more fiber from Metamucil and grains. That is what most of them tell you to do and it doesn't work if you are injured or restricted. The diet may be all you need to heal. The less pressure from constipation the less muscle spasms.

The physiotherapist will determine if you have pelvic floor dysfunction. This is important.

Use olive oil before and after bowel movements to keep skin supple . This will prevent more fissures.

I had two neuromas. It took two years to get relief. On my left side the perineal branch felt like cutting glass when I walked and on my right side the perineal branch felt like a toothache I needed to pull out. Dr. Dellon buried the injured nerves in the obteratur muscle. I am on week 6 of recovery from surgery.

[Jorkev89 in reply to Susan1-2]

Thank you for the great advice. What is a neuroma? Versus a compressed nerve?

[Susan1-2 in reply to Jorkev89]

My pathology report explained two branches of the pudendal nerve had degeneration, damage, and scarring. Which is what they called neuromas.The pain started out like yours and in two years I couldn't work or function. I knew I had damage. Your body tells you what to do when you have damage. The fact that I wanted to cut open the area myself says a lot. Like a rotten tooth.

Your at the early stage. It could very well be scar tissue restricting the nerve or your muscles are disfunctional from the surgery. Either way your best bet is the physiotherapist. Make her your best friend and see her at least once or twice a week. The therapist will probably tell you this but you can have a bowel movement without putting pressure on the area so everything can heal. Sit on toilet and relax muscles and then relax again placing arms on thighs and then blow out like your blowing candles out. This is using reflexes instead of pushing when you are ready to go. I can't remember what it is called. It's probably on the internet. I am not sure what a compressed nerve is. Maybe like a nerve is compressed from high heels. Not sure about the pelvis.

[suzibal in reply to Susan1-2]

Hi, Its like you r talking about my pain, :(((

can you tell me how r u doing now?

I ve been ignored long enough by Dr , I can't take it any more. I live in Canada but i am planing to get a medical attention in USA, MI. don't know where to start.

[Debra13]

Hello my name is Debbie. Along with that website you may want to contact pudendalassociation.org I contacted them and they got back to me right away too. Hang in there. We are all here for you. Prayers and hugs. Deb❤️

[Jorkev89 in reply to Debra13]

Thank you. I found a physio in my area versed in PN and will go see her.

[Foxwalks]

Hi there, sorry to hear you are in such pain. Reading your submission was like reading my own history. You do not say whether you are on medication. After trying various medications I am now on Gabapentine 400mg x4 times a day. At night I have 1 Nortriptyline extra. This keeps the pain at an acceptable level. I also use lactulose to make sure my bowels are not a problem. Seeing specialists is a long process as it is diagnosis by elimination of possible causes. I was eventually diagnosed with PN of the rectum. Have tried nerve blocks that have had little to no effect. With time and medication it has become possible for me to dispense with my ring cushion and find when I am concentrating on something absorbing i.e. book/ play / conversation I become aware that I have not been aware of my pain. This has been explained to me by a specialist I saw. When I had the excruciating pain of the annal fissure the nerves in my rectum learned to become over sensitive to any stimuli i.e. Bowel movement, hard chairs etc. To stop our pain we have to retrain this message response to our brains which are always on high alert which makes the pain seem more intense. Hence diverting our brain away from our constant pain by engaging it else where, slowly lessons the responses. It is not a fast process. It is working for me but I know it will take a long time. Hope you find some relief. Take care, joan

[Jorkev89 in reply to Foxwalks]

Hi Joan. My pain is not severe enough that I have required pain medication. However, I do take flexeril once in a while when pain is severe. I do agree with you that the area is likely sensitive and flared from all the trauma. My pelvic PT says that I should have good prognosis of recovery with time. I do have times where i forget about the pain when having fun or doing something relaxing. The brain is a powerful thing. Do you have any books or resources on retraining the brains pain signals?

[Foxwalks in reply to Jorkev89]

Have some books but not sure they are relevant. Will get back to you tomorrow but have my grandchildren

with me at moment. There are classes that deal with such things, but need to check the relevant terminology. Will get back to you. Regards Joan

[Foxwalks in reply to Foxwalks]

Hi there again. Have been doing some reading on the internet which somewhat turns some of what I told you about The Headache in my Pelvis. Try reading.

Seven things you should know about Pain Science/ bettermovement.org

Or the books Central Sensitization in Chronic Pain.

or

Explain Pain by David Butler & Lorimer Moseley.

They suggest that the tissues send messages to the brain about tissue damage but it is the brain that needs us to keep safe ßàfrom danger that sends the pain message back to the body. Over sending tissue damage reports to the brain causes over sensitization and too frequent pain messages back to body that are difficult to turn off. Read the articles yourself and see how you feel about these theories

Regards Joan

[Foxwalks in reply to Jorkev89]

Hi there sorry it has taken me so long to get back to you but my books were packed away while we did some decorating before Christmas. The book that I have has 2 chapters that might be relevant for you. A Headach in the Pelvis by Wise and Anderson has chapters 5 & 10 which are good at explaining how negative thinking about our pain and condition feeds into a cycle of tension,pain and anxiety.we need to change negative thinking that the pain will never go away or can not be treated.Negative thinking tends to trigger specific patterns of tension which have an impact on the body. A School of Psychology called Cognative Therapy focuses on helping anxious and depressed individual's identify negative thinking that triggers or aggrevates their condition. Learning to relax reduces muscle tension and pressure on nerves that causes our pain.

That is a very short version of the contents of these chapters.

Do not know where you are based but the writers of this book have a clinic in Santa Rosa, California that instructs in the practices described in the book. Gather it is a little expensive

Not sure if this is any help for you.

There is another book that concentrates on exercises to relax pelvic muscles called Heal Pelvic Pain by Amy Stein. Did not find this specifically helpful for Rectal Neuralgia which is what I was diagnosed with. Stress and tight muscles does increase my pain but it is the muscles of the rectum not my pelvic floor that is responsible.Both books available through Amazon.

If I can help anymore please let me know.I am based near Birmingham, England.

Take care, Joan.

[Hidden in reply to Foxwalks]

Hi. Your story is very similar to my own. I have seen numerous consultants but nobody seems to know what is wrong with me. How did you eventually get your diagnosis? I am in UK. My GP doesn't know how to help me.

[Jorkev89 in reply to Hidden]

Hello there. I dont have a diagnosis yet, but im working on getting a nerve block in the pudendal nerve both to treat and diagnose my problem. Start with finding a really good pelvic physical therapist. They can do an extensive evaluation of the pelvic floor and may be able to help point you in the right direction. The next step is to find a doctor who treats PN. You can go to a website called pudendal hope. There are a list of specialists who practice in the uk. Im not sure how i got this either. I may have had some genetic predisposition. Ive always had a tight pelvic floor and chronic constipation. The fissure was probably the straw that broke the camels back. Best of luck to you