I've been having pain in the rectum for the past 10 months... I have pain with bowel movements, and burning sitting pain after sitting for more than 20 minutes. I have been seeing a pelvic floor physical therapist for 8 months and have had Botox injections into the pelvic floor since my doctor insisted that my tight muscles were causing the pain. My muscles are relaxed but my internal sphincter remains tight (my latest diagnosis)... According to several doctors and my pt, it is not a nerve problem... I don't know where else to turn, I feel hopeless. I am 35 and a mother of two children (5 year old & 10 month old).. Can't imagine living the rest of my life with this burning sitting pain...
Chronic anal pain : I've been having... - Pelvic Pain Suppo...
Chronic anal pain
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Alyssa5
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I have the same symptoms as you. For three years now I cannot sit without agony. The only help is ice pack and donut pillow, medication. I have pudental neuralgia, entrapped nerve in rectal-anal site. Burning and pain constant after three years. Have been to many ( wrong) doctors till I found this out at pain management. Believe me I know how you feel! I am going to start pudental nerve blocks this month. I will have to have one every six weeks till I have four of them. It may help, it may not, but I have no other options! When I stand up it feels like my butt is going to fall out! I never had children. I had prolapsed uterus removed ( thinking that was the problem) but it was not. Hope this might help! Bless you!
trishj46
I had a csection and a tubal ligation... Got constipated had a fissure and then this anal pain has not gone away. Don't know if my problem is the muscles (pelvic floor dysfuction) or the nerves.. There's no way to really diagnose pn/ pne until they open you up.
How did you make 3 years with this pain always rectal pain can't sit lay or stand without pain about too loose my mind
It is now 10 years for me Cherie---I did just about everything too. Only in this last year did I get some relief from compounded suppositories of gabepentin & lidocaine insertedrectally as needed by doctors orders! Check it out! There are different meds that can be used compounded and inserted rectally. Good Luck! Let me know how you make out!!
I have mesh placed for a rectal prolapse, and have had this pain for 10 1/2 years. I have been forced off of a cold turkey of alprazolam and I have quit smoking, and I am about to l go crazy with pain. I feel so sorry that all of us are going through this, prayers and hugs.
@ alyssa, look, your doctors are not helping you right now..burning pain ought to be nerve pain for sure.
Persuade them to give you amitriptyline of another tricyclic antidepressant before it's too late...I mean, if they don't know what's wrong with you then they MUST GIVE YOU PAIN KILLERS
Alyssa5• in reply to
I've asked and my chronic pain specialist did not want the drugs to constipate me... I just got Botox injected again yesterday so I hope in about a week or so, the pain decreases..
Hi
You need to find out what it is but it sounds like Pudental nerve trouble. Take tramodol for the pain but first Clonazopam a Muscle relaxant/Anti anxiety pill. That should provide an indication then look up Sacral nerve implants they work and can be easily removed if they do not. Do not go down the nerve block injection route, they work for some but not others and can make things worse. You will need more and more if they work and ultimately you may become incontinent.
Take heart that you are not alone there are many many others with pelvic pain for one reason or another and in every case the diagnosis is unclear with therefore no prognosis and very little understanding, regrettably due to ignorance, from the medical profession who were never taught about it in the first place. Educate them then they may help and stop telling you it is all in your head!!
I am thinking of getting a second opinion... But the evaluation is $260... Which is a lot during this time if year.
burning pain can also be caused by tight muscles...
I've had only the option of sacral nerve root stimulators from my current pain specialist. I see this as too invasive and my PT thinks so as well. So I have been referred to another pain specialist for a second opinion. My PT recommended this other pain specialist.
Sacral nerve root stimulators are a $40,000 device. You can only imagine how much $$ they make fitting these. Food for thought.
Yes I think you should definitely get a second opinion before you decide to try the sacral nerve stimulator.
Baclofen seems to be working. The first time in like ever when using the therawand I was able to release the trigger point in my pelvic floor, to the point when I palpitated it again, it just wasn't there/tender.
With all the massage in the past I have never been able to release it like that before.
It might be worth a go.
Is baclofen taken orally?
You can get suppositories, but I am just taking the oral version. It's the only thing thats managed to release my painful internal trigger points so far. Baclofen combined with physical therapy.
Use the Baclofen to reduce the spasm. Take it for a month or so and therefore keep the rectal spasms at a reduced level.
Breaking the cycle and reducing the spasms consistently for a few months could be a game changer. Will wait and see 
Pafen.. I hope this works for you; breaking the pain cycle is the key but it is very hard to do. Now we are dealing with central sensitization (the pain is coming from the brain) no matter how much therapy, the pain will still be there so we have to focus the treatment elsewhere.
It really is working but what will be interesting is if I improve with time. Maybe it's muscle spasm but also it could be nerve damage making the muscles spasm??
I am just having a cuppa now, tea of course. Managed to get my coffee down to 1 cup a day.
My PT mentioned about the importance of taking pain medications to stop the central sensitization from occurring. Trouble is, with this condition not a lot of medications have much effect.
So far it's only been the Baclofen thats made some difference when I use the therawand in the morning. Everything is just less sensitive to palpitation within my pelvic floor.
Alyssa,
Is your pain one sided? Mine is on the left side even though my abscess was on the right side.
My pain is all over (both butt cheeks, sacral area) I feel as though its spreading. = central sensitization. I am not taking anything and I been suffering for 16 months!
Hi Alyssa I to have had this for the last 10 months it's a nightmare ! I'm seeing a physio and my pelvic floor muscles are tight , also suffering with muscle tightness in buttocks and legs , I've been doing stretches and yoga exercises and have seen some better days , over done things at weekend and suffering today ! Just want my life back . What meds are you taking I take pregab think it takes the edge off things my GP was very good prescribed them with out diagnose , I have seen consultant in London and been diagnosed with Pudendal neuralgia and Muscle Hyperalagesia just recently . This week I'm seeing a pain therapist that going to be fun ! Like you I'm a mum it's hard to function and with Xmas around the corner it's hard to have motivation . Good luck x
Many doctors are not aware of the increasing number of people who have Pudendal Nerve damage/pain. There are only 4-5 doctors in the US who deal with this. I have to travel 1500 miles to get a correct DX. But I have hope now after 3 years!!! Try to find a doc that might consider that as the issue.
Who was the doctor that correctly diagnosed you with this condition? Conway, hibner etc..
Hi I was diagoned after 3years of chronic pain by a consultant at Nottingham city hospital pain management I had MRI scan injection bladder bowel different pain killers it was a relief to find out what was causing it I am still. Under pain management although they have said there is only pain killers they can give me I also paid private for op at the spires Bristol I have only have a small improvement kind regards
I also tried the Physical therapy and it made it worse. When I saw an expert here in the US they told me that if the nerve is entrapped PT won't do any good until you can get the nerve free. Did any of you have meshes put in? Just wondering. That's where my trouble started. Even after it was taken out there is still pain. The damage has been done so now I head for surgery to release the nerve but I am hopeful at least.
The only surgery I had was a csection and a tubal ligation... I became constipated after delivering. My daughter, had a fissure and stomach issues... The rectal pain has not gone away... Doctors keep insisting that it is a muscle problem... Not a nerve.. Don't know what to believe anymore.
Have you had an X-ray? I had a tubal ligation as well. Ten years after the procedure both of my Filshie clips had migrated. One ended up in my rectum and the other made it all the way to small bowel below the neck of my bladder!
The clips distorted tissue and stretched my right pudendal nerve so that it became entrapped by my right sacrotuberous and sacrosphinous ligaments. I was in agony. My rectum was electrocuted. Those ligaments had been overused from all my athletic pursuits for 51 years and they had ‘ juxtaposed’.
PT made it way worse. After four sessions I couldn’t lie down pain free anymore. That meant I couldn’t sleep.
I sat on ice for years and I had to carry a cooler with ice packs and pain patches everywhere I went for over two years!
I had entrapment and no medicine I was given helped at all. I lost cognitive function along with my job, my ability to exercise normally, garden normally and have a quality of life.
I could no longer take care of my son ( he was an immature 17.5 year old boy ) and we had a forced disassociation. He was so depressed watching me completely deteriorate that he left our family home and went to live with friends. He became totally frightened and severely depressed and it affected his ability to study and work. We were both left traumatized.
If doctors had not gas lighted me and if they had followed the Standard of Care, plus if they’d not hidden the clips ( to avoid a lawsuit ) I could have had them removed stat and perhaps my pudendal neuropathy would not have developed. I was not treated with respect and I was instead emotionally abused and purposely diagnosed with ‘ vulvodynia’. Nothing I said mattered. I was dismissed.
Call a lawyer if you can’t get proper treatments. Guided nerve blocks are mandatory for diagnosis and if they aren’t a source of pain relief, decompression surgery is a must. Entrapment does NOT respond to medication. All they do is sedate you anyways.
I’ve lost 13 years of my life to living in fright and flight because I was purposely misdiagnosed and left in agony. I’m not given proper treatments where I live. I did get the decompression surgery but only because I hired a registered nurse consultant to advocate for me.
The doctors where I live were incompetent, negligent and cruel. They did not help me to get my decompression surgery. They wrote misrepresentations about me and and their treatments and they lied. Complete frauds!
hi sandy15, I have the same pain, I had a mesh in back in 2012 and even though this has been removed in 2013 I continue to live with this anal pain and left side of vagina. taking pregabalin 300mg twice a day and amitriptyline. have had 2 nerve blocks and now having ct guided nerve block in jan down London. this is where all my treatment has been and the surgery to remove the mesh went well. I also had a prolapse of the rectum and I believe this is where it all started.
Hi. What kind of rectal prolapse did you have? And what surgery did you have to correct it? I have PN and am considering mesh rectopexy to sort internal rectal prolapse out, to relieve pressure on pudendal nerve. BM are very painful.,just wondering if you had this done and if it helped. Worried about having mesh put in. Thanks.
Ekeyte84• in reply to
Suebooooo, that is SO similar to what I have. Painful BM daily got nerve pain relief gabapentin but nothing is working. Awaiting anal ultrasound as all pelvic anal muscles keep spasming. I've been told surgery may be done, had internal muscle prolapse it's gone on too long. Any suggestions on what I can tell surgeon or ask at next consult?
I can only tell you of my experience really. I had a defeacating MRI which identified an rectal intersussception (prolapse). The colorectal surgeon at my local hospital new nothing about pudendal neuralgia and told me it was not connected to my pain. They do not offer surgery for internal prolapse. The PN specialist I saw said having a rectocele and pelvic floor repair operation was the wrong thing as it pushed all the prolapsed bowel up and back into an even smaller space which put pressure on the pudendal nerve. Moving all the bowel back to its normal postion should take the pressure off, therefore removed pain associated with BMs. It all makes sense, I just hope it works! I am told I am with the best surgeon though. I hope that helps. Only85% chance it will improve bowel function, but as long as I get pain relief and it is no worse than it is now I will be happy. Worried about using mesh though, but have to trust consultants, they are PN specialists.
Milkshakes• in reply to
Hi Sueboo can you share who you are seeing for consult and surgery? Feel free to private message me... Thanks!
Sueboo.... Have you had this surgery?? Any improvement??
• in reply toSuzysheep
Just got a provisional surgery date for the end of July. I will post to keep you updated afterwards. Thanks for asking. Xxx
littlelou• in reply to
Have you had your surgery? Hope your doing ok.
I have the same as you an anal intersussception for 5 years now and have finaly got an appointment with a surgeon on Thursday. Is surgery the only fix do u think. Thank you
Hi littlelou, I went for surgery but after finding and repairing an incisional hernia with bowel trapped in it (that nobody knew I had) they couldn't complete the rectopexy operation because of bowel damage. So I'm back on the waiting list for the surgery. Frustrating but couldn't be helped. Let me know how your consultation goes. Is it the solution? I don't know, will help me go to the toilet better, but pain relief is an unknown quantity! Take care.
Hi Alyssa! I am in the same boat as you 😞. Please let me know how the Botox worked and if you found anything else that helped. God bless you!!
Hi Alyssa, I understand completely what your going throw, it’s been 5 months and It’s been a nightmare, maybe we can contact each other for support and can recommend treatment
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