Anal Pain
Anal Pain
Hello everybody. I have decided to ask for your help again. I was on this site last year after being diagnosed with"Vulvodynia"(just a label). I seemed to manage a normal life on Amitriptyline although I knew my pelvic floor muscles were sore and tight. I have been suffering with constipation . I began to feel sore in the anus a couple of months ago and I discovered a tear and sentinel pile. Have tried doctors creams but no luck. It has become increasingly painful, stingy, burny and feels like I am sitting on glass. I am seeing a colorectal specialist on Wednesday but I feel the tear may have healed and it could be PN instead. Of course my anxiety has shot up again. I have a certain tightness in the area which I can feel when I sretch. My groin feels sore too. Had a lot of pain today upped my Amitriptyline, tried co-codamol but it isn't really helping. What does everybody do for pain relief in this area and if the specialist doesn't find anything any suggestions what I should do next? I'm in the U.K . Thank you. Gosh this is horrible, trying to hold it altogether. Edwina
Re: Anal Pain
Hi Edwina
Think i replied to some of your other posts a long while ago. You are a lady after my own heart. I now too consider anything as "just a label".
I used Amitriptyline then Nortriptyline for a long time - it really did very little for pain relief. The Amitriptyline itself is no doubt making you constipated.I have now been off any drugs for 18 months. All the vulva burning pain and muscle tightness is there everyday and it seems to go back to my anus at times. If you can come off the Amitriptyline it may help the constipation. With me it was purely personal choice not medical advise to not carry on with the drugs.
I don't know what to suggest re the colorectal consultant. If you have a pile he may suggest having it removed. I for one wouldn't want anyone "going in" down there now in case more nerves are affected.
Knowledge of this type of pain is so limited in the UK.
With Best Wishes
Rosemary x
Think i replied to some of your other posts a long while ago. You are a lady after my own heart. I now too consider anything as "just a label".
I used Amitriptyline then Nortriptyline for a long time - it really did very little for pain relief. The Amitriptyline itself is no doubt making you constipated.I have now been off any drugs for 18 months. All the vulva burning pain and muscle tightness is there everyday and it seems to go back to my anus at times. If you can come off the Amitriptyline it may help the constipation. With me it was purely personal choice not medical advise to not carry on with the drugs.
I don't know what to suggest re the colorectal consultant. If you have a pile he may suggest having it removed. I for one wouldn't want anyone "going in" down there now in case more nerves are affected.
Knowledge of this type of pain is so limited in the UK.
With Best Wishes
Rosemary x
Re: Anal Pain
Thanks Rosemary. Yes been thinking about the internal exam, mmm could be a wrong move but guess I'll just have to see what he says.It's so frustrating over here, so hard to find anybody knowledgeable and how it would be nice to be looked at as a whole person instead of seperate parts. Hope you are o.k. Yes nice to hear from you again. Edwina x
Re: Anal Pain
Hi Edwina
Not sure if you have been on this forum for some time but there is now a UK pelvic pain Facebook Closed forum at
https://www.facebook.com/groups/1614073482191502/ where you might find some comfort and more information. It was started by a lady called Bertie/Badger on here.There is a thread running on here about it too which i can't find at the moment. Maybe someone else may know about the UK group who is on here also.
I am not a member as i am not at ease with using Facebook generally. I withdrew from it after getting overwhelmed by it some time ago.
A certain specialist may not be looking at you as a whole person but i grew after time not to expect more. You have build your own jigsaw puzzle with it all which includes help of others on forums.
Distraction is a big help to me.
Take Care
Rosemary x
Not sure if you have been on this forum for some time but there is now a UK pelvic pain Facebook Closed forum at
https://www.facebook.com/groups/1614073482191502/ where you might find some comfort and more information. It was started by a lady called Bertie/Badger on here.There is a thread running on here about it too which i can't find at the moment. Maybe someone else may know about the UK group who is on here also.
I am not a member as i am not at ease with using Facebook generally. I withdrew from it after getting overwhelmed by it some time ago.
A certain specialist may not be looking at you as a whole person but i grew after time not to expect more. You have build your own jigsaw puzzle with it all which includes help of others on forums.
Distraction is a big help to me.
Take Care
Rosemary x
Re: Anal Pain
Thanks again Rosemary, I too don't use Facebook. That's amazing that you don't take any drugs. I feel that we are really let down with chronic pain issues in this country. They give you tablets and creams and then send you off to chronic pain management. If I hadn't asked to see the physio last year they wouldn't have suggested it. I went 8 times and travelled hundreds of miles to the NHS vulvodynia clinic in Liverpool. I had read up on what to expect from a good physio session supposedly checking if your pelvic floor is in alignment your back and hips etc. To check your surrounding tissue for triggerpoints and tightness then a good internal to check for the same. No none of this was done, if I hadn't asked her she wouldn't have even done the internal....so disappointing. The physios in America seem a lot more clued up. Has anybody seen a PN aware physio in this country? Edwina x
Re: Anal Pain
Hi again Edwina
You may have to go privately to get more answers. There is Dr Ruth Jones physio in Eastleigh, Southampton who is PN aware and also Maria Elliot in London.
I saw Ruth Jones in 2014 for several sessions. She gave me a thorough internal examination, did internal work and gave me excercises etc to do at home. She was able to pinpoint trigger points and told me that the Obturator Internus muscle was tight on the bad side. I finished with her after internal work she did on me was getting too painful after sessions.I also had a 3 hour journey to get to her and her costs were £120 per hour so i had to weigh it all up. She gave me a lot more information though as to what is going on with me.She has helped people with PN.Here is a link to the clinic where Ruth works - see that she now charges £130 per hour.
http://www.eastleighosteopaths.co.uk/Tr ... /c-1-6.htm
Bertie/Badger on here saw Maria Elliot and has seen other private consultants in London after failing to get answers locally.It may be worth reading Berties old posts on here.She only changed her name to Badger after some computer glitches.
You have to be proactive i'm afraid. I saw a private pain consultant in Bristol mentioned on here but my GP would never have referred me at that point if i hadn't paid and it was 'out of area' from where i live. The consultant gave me more information and i then ended up referred back to my local pain clinic. My GP may have got me there in the end who knows ?
I am trying not taking any drugs to see if my body can finally sort this. I have throbbing, stabbing, severe itching, swelling, general burning and at time numbness but hey ho at least i know what i am basically dealing with without drugs mucking my head up and making me constipated. As i said before this is a personal decision on my part. I am very lucky that in recent years i now have two little grandchildren living nearby which are a huge incentive and distraction. My husband has also been very supportive. I do hope that you are not alone with all this.
I am not often on this forum now but just happened to catch your post when looking yesterday.
Take Care
Rosemary x
You may have to go privately to get more answers. There is Dr Ruth Jones physio in Eastleigh, Southampton who is PN aware and also Maria Elliot in London.
I saw Ruth Jones in 2014 for several sessions. She gave me a thorough internal examination, did internal work and gave me excercises etc to do at home. She was able to pinpoint trigger points and told me that the Obturator Internus muscle was tight on the bad side. I finished with her after internal work she did on me was getting too painful after sessions.I also had a 3 hour journey to get to her and her costs were £120 per hour so i had to weigh it all up. She gave me a lot more information though as to what is going on with me.She has helped people with PN.Here is a link to the clinic where Ruth works - see that she now charges £130 per hour.
http://www.eastleighosteopaths.co.uk/Tr ... /c-1-6.htm
Bertie/Badger on here saw Maria Elliot and has seen other private consultants in London after failing to get answers locally.It may be worth reading Berties old posts on here.She only changed her name to Badger after some computer glitches.
You have to be proactive i'm afraid. I saw a private pain consultant in Bristol mentioned on here but my GP would never have referred me at that point if i hadn't paid and it was 'out of area' from where i live. The consultant gave me more information and i then ended up referred back to my local pain clinic. My GP may have got me there in the end who knows ?
I am trying not taking any drugs to see if my body can finally sort this. I have throbbing, stabbing, severe itching, swelling, general burning and at time numbness but hey ho at least i know what i am basically dealing with without drugs mucking my head up and making me constipated. As i said before this is a personal decision on my part. I am very lucky that in recent years i now have two little grandchildren living nearby which are a huge incentive and distraction. My husband has also been very supportive. I do hope that you are not alone with all this.
I am not often on this forum now but just happened to catch your post when looking yesterday.
Take Care
Rosemary x
Re: Anal Pain
Hi Rosemary thanks again. Did Dr Ruth Jones eliminate your trigger points manually or by injection? How many times did you see her? I'm afraid I am basically alone apart from my 87 yr old dad whom I don't want to burden too much. Edwina x
Re: Anal Pain
Hi Edwina
Ruth Jones did not inject trigger points she was manually trying to release them. I don't know where you live but it may be worth seeing her for a thorough assessment and she may be able to help you. She did not release anything in my case. I can't remember but think i went to her about 6 times probably not enough but i had had enough by then. On a lighter note if you go to her and you are passing that way there is a lovely fish and chip shop near one of the car parks off the shopping street in Bridport where we used to go on our way home.Something to look forward to.
Before i got to Ruth i had had a steroid injection done transvaginally at the ischial spine level done at my local pain clinic.This was done by a gynaecologist who was working with the pain consultant i saw. This was NHS. Afraid that only made things worse. I personally now don't recommend an injection.
I also had acupuncture done at the pain clinic. I had to ask for it but that didn't help either
I am very sorry that you are on your own with this. I hope that i am being of some help but everyone is different so what hasn't worked for me may work for you.I am 61 now and if anything changes for me i will consider it a bonus.
Rosemary x
Ruth Jones did not inject trigger points she was manually trying to release them. I don't know where you live but it may be worth seeing her for a thorough assessment and she may be able to help you. She did not release anything in my case. I can't remember but think i went to her about 6 times probably not enough but i had had enough by then. On a lighter note if you go to her and you are passing that way there is a lovely fish and chip shop near one of the car parks off the shopping street in Bridport where we used to go on our way home.Something to look forward to.
Before i got to Ruth i had had a steroid injection done transvaginally at the ischial spine level done at my local pain clinic.This was done by a gynaecologist who was working with the pain consultant i saw. This was NHS. Afraid that only made things worse. I personally now don't recommend an injection.
I also had acupuncture done at the pain clinic. I had to ask for it but that didn't help either
I am very sorry that you are on your own with this. I hope that i am being of some help but everyone is different so what hasn't worked for me may work for you.I am 61 now and if anything changes for me i will consider it a bonus.
Rosemary x
Re: Anal Pain
If possible, patients should try to live without psychiatric drugs, that means without antidepressants, neuroleptics and anti-epileptics.
The medicine claims now that antidepressants and anti-epileptic drugs would relieve pain. In my opinion this is not right.
A short example:
A few weeks ago a friend of mine suffered from a slipped disc with terrible pain. So he had to go to the hospital, waiting for surgery. They gave him a lot of pain medications because he couldn't barely move. After three or four days he began to mumble, had problems finding words and swallowed syllables of words. Sometimes I thought, it is the heavy pain medication. When he went home again his mumbling was so strong that I began to get worried. I asked him about the medication list. I new the pain medications (Novalgin, Tilidin), and then he said Lyrica (Pregabelin). I was shocked and told him that this was an anti-epileptic drug with terrible side effects. After two days taking Lyrica no more, he no longer mumbled, although he still had to take Novalgin and Tilidin. It was clearly the anti-epileptic drug that had driven his brain into a state of not being able to speak in a clear way.
Two weeks ago I went to a trauma ambulance of my University Hospital. This ambulance is a part of a great psychatric clinic, and as I could see there also was a division of psychosomatic medicine. For me I was at the right place because in my oppinion we are suffering from a psychosomatic disorder, I emphazise that is my oppinion.
I wanted the diagnosis "trauma" because I am convinced that this pain in this sensitive part of the body is a trauma besides the terrible pain. My target was this diagnosis because in Germany with a special point number of hindrance you pay less taxes and I wanted to start a discussion and move the physicians to deal with this disorder. I was in a university hospital!! I also wanted a fMRT because traumatic stress can be seen in the brain. I am sure all PN stress can be seen in the brain.
With a lot of scientific articles of PN and PGAD and of trauma research under my arms I went to the hospital and talked to the doctor about 1 1/2 hours and most of all, I talked about my pain nobody wanted to hear until today. Time for nothing.
At the end he said: “In three to four weeks we can change your sleeping pills into antidepressants.” Why that? “Because sleeping pills make addicted. Your brain will need more and more.” First, that is not correct and second this was his main problem. He didn't understand anything, but I understand physicians more and more. Antidepressant are much more expensiv than benzodiazepines and they make addicted too and something more!
Before taking antidepressants to relieve pain you should read two books. Peter Gotzsche: “Deadly Medicines and Organised Crime: How Big Pharma Has Corrupted Healthcare" "and "Deadly Psychiatry and Organised Denial"
I don't know why body medicine has obvertaken these drugs from psychiatry and why they tell us that they relieve pain??? There only can be financial reasons.
Edwina, if you are able to live without these drugs, so do it.
The medicine claims now that antidepressants and anti-epileptic drugs would relieve pain. In my opinion this is not right.
A short example:
A few weeks ago a friend of mine suffered from a slipped disc with terrible pain. So he had to go to the hospital, waiting for surgery. They gave him a lot of pain medications because he couldn't barely move. After three or four days he began to mumble, had problems finding words and swallowed syllables of words. Sometimes I thought, it is the heavy pain medication. When he went home again his mumbling was so strong that I began to get worried. I asked him about the medication list. I new the pain medications (Novalgin, Tilidin), and then he said Lyrica (Pregabelin). I was shocked and told him that this was an anti-epileptic drug with terrible side effects. After two days taking Lyrica no more, he no longer mumbled, although he still had to take Novalgin and Tilidin. It was clearly the anti-epileptic drug that had driven his brain into a state of not being able to speak in a clear way.
Two weeks ago I went to a trauma ambulance of my University Hospital. This ambulance is a part of a great psychatric clinic, and as I could see there also was a division of psychosomatic medicine. For me I was at the right place because in my oppinion we are suffering from a psychosomatic disorder, I emphazise that is my oppinion.
I wanted the diagnosis "trauma" because I am convinced that this pain in this sensitive part of the body is a trauma besides the terrible pain. My target was this diagnosis because in Germany with a special point number of hindrance you pay less taxes and I wanted to start a discussion and move the physicians to deal with this disorder. I was in a university hospital!! I also wanted a fMRT because traumatic stress can be seen in the brain. I am sure all PN stress can be seen in the brain.
With a lot of scientific articles of PN and PGAD and of trauma research under my arms I went to the hospital and talked to the doctor about 1 1/2 hours and most of all, I talked about my pain nobody wanted to hear until today. Time for nothing.
At the end he said: “In three to four weeks we can change your sleeping pills into antidepressants.” Why that? “Because sleeping pills make addicted. Your brain will need more and more.” First, that is not correct and second this was his main problem. He didn't understand anything, but I understand physicians more and more. Antidepressant are much more expensiv than benzodiazepines and they make addicted too and something more!
Before taking antidepressants to relieve pain you should read two books. Peter Gotzsche: “Deadly Medicines and Organised Crime: How Big Pharma Has Corrupted Healthcare" "and "Deadly Psychiatry and Organised Denial"
I don't know why body medicine has obvertaken these drugs from psychiatry and why they tell us that they relieve pain??? There only can be financial reasons.
Edwina, if you are able to live without these drugs, so do it.
Re: Anal Pain
Hi Rosemary thanks again. The fish and chips sounds lovely. Unfortunately if I went it would be by train from Yorkshire so at the moment too far. I know when I try my own internal massage it usually feels worse but I think I've read it sometimes has to get worse before getting better. These are such hard choices I just wish the medical profession knew more. Edwina x