Hello to everyone I haven't got round to reading many posts yet but will.
I had a colonoscopy yesterday under g. a. the day before I had gangalion impar injection (pain management).
I have seen at least five gynies
two neourosurgeons three colorectal surgeons three general surgeans and two urologists.
five mri scans five ct scans two nuclear scans ultrasound by the dozen and transdermol vaginal scan also barium enema. laparoscopy and defecating protogram. Hope I haven't bored you ..I am on a lot of medication and prior to three years ago I was very fir diving in the red sea and maldives. Then, one morning I felt a lump art the back of the clitoris but inside the vagina. This lump has proggressed to dropping into the vagina after ten mins of standing it is very painful to stay standing the only pain releif is to lie down. I think I read on here someone who had a lump at the back of clitoris. So the bottom line my friends is...what I can Feel cannot be seen how much more suffering can I take.? please any advice wecome
from little mo
am I the only one in the world with these symptoms?
Re: am I the only one in the world with these symptoms?
Hello mo - no, you're not the only one, not by a very long way. There is a whole forum full of people here who know exactly what you are talking about! The feeling of having a foreign body somewhere inside - in various places - is very common indeed with PN. You can feel it - it hurts! - but it just isn't there in reality. It is difficult to get your head round this one, but it really is the nerve playing tricks.
Many people here have also had your experience of multiple diagnostic procedures, and visits to many different doctors without any real diagnosis.
I suggest that you have a good read through the information linked to the home page of this site - 'Goto home page' in red at the top of this page, and every page. There is a wealth of information there, all of it is good and all of it is useful.
Once your pain is recognised as being neuropathic, then you will find that the whole tenor of pain management changes. Neuropathic pain does not respond to most 'normal' pain meds, the approach needs to be completely different.
Sometimes it helps to know that you are not alone.
(Edited for clarity)
Many people here have also had your experience of multiple diagnostic procedures, and visits to many different doctors without any real diagnosis.
I suggest that you have a good read through the information linked to the home page of this site - 'Goto home page' in red at the top of this page, and every page. There is a wealth of information there, all of it is good and all of it is useful.
Once your pain is recognised as being neuropathic, then you will find that the whole tenor of pain management changes. Neuropathic pain does not respond to most 'normal' pain meds, the approach needs to be completely different.
Sometimes it helps to know that you are not alone.
(Edited for clarity)
Re: am I the only one in the world with these symptoms?
Thank you calluna...so would I be barking up the right tree (excuse the pun) by turning to a neuorosurgeon? I have read that it is a mrn needed rather than mri would that be right? I am so grateful you answered thanks again.
love from Sue
little mo
love from Sue
little mo
Re: am I the only one in the world with these symptoms?
I'm sorry to have to ask another question even though I read the articles and I'm afraid I fit into the catergories mentioned but what I'm confused about is I feel this thing drop it drops into the vagina actually drops is that what others say as well? not all the way down but enough for discomfort and pain
I can wiggle this thing is it still a nerve ?
what pain control is there? I take pregablin now that doesn't do a thing for the pain but it isn't easy to stop it ...I tried and couldn't move a muscle in bed for two days then I took the meds and some energy came back is this usual? gosh I've got so many questions.
I'm going mad as my life has almost been taken over with pain and deppression so any support is such good news thank you so very much I never perspired before now it's bucket loads.again thank you
little mo Sorry I also forgot to mention extreme pain in the groins.
I can wiggle this thing is it still a nerve ?
what pain control is there? I take pregablin now that doesn't do a thing for the pain but it isn't easy to stop it ...I tried and couldn't move a muscle in bed for two days then I took the meds and some energy came back is this usual? gosh I've got so many questions.
I'm going mad as my life has almost been taken over with pain and deppression so any support is such good news thank you so very much I never perspired before now it's bucket loads.again thank you
little mo Sorry I also forgot to mention extreme pain in the groins.
Re: am I the only one in the world with these symptoms?
The best doctor to see if you have PN, is one who specialises in PN. I don't know whereabouts in the world you are, but if you look on the forums you will find lots of info on choosing a doctor. I am not sure what you mean by an mrn - actually I am also not sure what you mean by a 'nuclear scan' which you mentioned in your first post - what are these things?would I be barking up the right tree (excuse the pun) by turning to a neuorosurgeon? I have read that it is a mrn needed rather than mri would that be right?
If you are getting something physically dropping into the vagina, which you can actually touch, then I don't understand why the doctors cannot see it. The feeling of having something inside, that is common with PN, but something physically dropping down into the vagina sounds more like a prolapse. Is it something physically present, or is it something that you feel as if it is there?
Pregabalin is one of the meds used to help with neuropathic pain, and it certainly isn't something that you should just stop taking. If it isn't helping, and your doctor says you are on the highest dose that you can take, and you are not feeling any help from it, then perhaps it is time to come off it. You should be talking with your doctor about this, and taking the dose down slowly under her supervision.
Have a read on the main part of the website here about the different choices for treatment, it is useful stuff to know about. I know it is a lot to read, but it is worth it, I promise.
Re: am I the only one in the world with these symptoms?
Hello Calluna
It is very kind of you to answer my questions I am so grateful'
A nuclear scan is with injection contrast The purpose is to track the dye and at that time they wanted to rule out gall bladder ,which they did. The injection leaves metalic taste in mouth and makes it feel as if one has wet themself.
I live in Kent south east England two mins from sea ...large house large garden and equally large two dogs.
At a later time I will tell the story of how after 35 yrs on my own by choice I met my partner of seven yrs together .
An M R N I believe is the same as M R I but the N stands for neuropathy ...enables to look more into nerves and tissue.This week I had a Colonoscopy under G a. all that was found was scattered diveticulam disease and no sign of acut pathology. I seem to think that the reason for this procedure was lost as when I asked about a connection with the prolapse I was given some blank looks and the response was a little strange that I had asked such a question.
As I say, I have suffered this for three yrs had a hysterectomy in between think it was a womb prolapse instead it made things worse.
Yes you are right that the doctors and all imaging does not show this bulge that I feel and can wiggle which makes my vagina at times so sore any bath gel sends me flying with burning .
I have a problem with gp surgery. My registered doctor three yrs ago at the time I was so deppressed vulnerable and confused with my problem of a lump at the back of the clitoris, told me he was concerned at how many times I was at the surgery....(it isn't always easy to get gp of choice if they have a day off). I was so upset at his coldness that I sobbed in my car for an hour in the car park and vowed I wouldn't see him again and didn't.
I saw instead a gp who was interested in alternative methods...but our relationship as patient and doc ended when he telephoned my house some five weeks ago.
I tried so hard not to cry as the gas engineer was fixing the heater as no hot water for five days.
This gp who I trusted and liked told me he could no longer offer care as he is troubled by me going behind his back!!It was three weeks before that when he told me he was no longer looking for a cause and would not sanction any more scans.
He stopped looking for a cause but did that mean I had to? I was on a life threatening level of garberpentin and didn't know, nobody to guide me with amounts.
I had turned to a telephone number given me by Pain management but they were unable to help and suggested I went to gp ...It was true when I told them that he didn't want to discuss my problem as I had specialists and I couldn't talk to him about pain in this area because he says I have pain management.
This was put onto a letter and sent to my gp (the one I liked) the bit about I couldn't talk to my gp about pain didn't go down to well with him.
Now all the gps in surgery are a little stand offish with me. Also I am absolutly convinced half of consultants letters have not been read, I am pro active and I have seemingly been my own case manager but I am exhausted now....I had a gangalion impar injection this week but that didn't stop the pain of this drop into the vagina.I am sorry this is so long and hope it makes sense. I would like to thank you again for caring love from
sue
little mo
xx
It is very kind of you to answer my questions I am so grateful'
A nuclear scan is with injection contrast The purpose is to track the dye and at that time they wanted to rule out gall bladder ,which they did. The injection leaves metalic taste in mouth and makes it feel as if one has wet themself.
I live in Kent south east England two mins from sea ...large house large garden and equally large two dogs.
At a later time I will tell the story of how after 35 yrs on my own by choice I met my partner of seven yrs together .
An M R N I believe is the same as M R I but the N stands for neuropathy ...enables to look more into nerves and tissue.This week I had a Colonoscopy under G a. all that was found was scattered diveticulam disease and no sign of acut pathology. I seem to think that the reason for this procedure was lost as when I asked about a connection with the prolapse I was given some blank looks and the response was a little strange that I had asked such a question.
As I say, I have suffered this for three yrs had a hysterectomy in between think it was a womb prolapse instead it made things worse.
Yes you are right that the doctors and all imaging does not show this bulge that I feel and can wiggle which makes my vagina at times so sore any bath gel sends me flying with burning .
I have a problem with gp surgery. My registered doctor three yrs ago at the time I was so deppressed vulnerable and confused with my problem of a lump at the back of the clitoris, told me he was concerned at how many times I was at the surgery....(it isn't always easy to get gp of choice if they have a day off). I was so upset at his coldness that I sobbed in my car for an hour in the car park and vowed I wouldn't see him again and didn't.
I saw instead a gp who was interested in alternative methods...but our relationship as patient and doc ended when he telephoned my house some five weeks ago.
I tried so hard not to cry as the gas engineer was fixing the heater as no hot water for five days.
This gp who I trusted and liked told me he could no longer offer care as he is troubled by me going behind his back!!It was three weeks before that when he told me he was no longer looking for a cause and would not sanction any more scans.
He stopped looking for a cause but did that mean I had to? I was on a life threatening level of garberpentin and didn't know, nobody to guide me with amounts.
I had turned to a telephone number given me by Pain management but they were unable to help and suggested I went to gp ...It was true when I told them that he didn't want to discuss my problem as I had specialists and I couldn't talk to him about pain in this area because he says I have pain management.
This was put onto a letter and sent to my gp (the one I liked) the bit about I couldn't talk to my gp about pain didn't go down to well with him.
Now all the gps in surgery are a little stand offish with me. Also I am absolutly convinced half of consultants letters have not been read, I am pro active and I have seemingly been my own case manager but I am exhausted now....I had a gangalion impar injection this week but that didn't stop the pain of this drop into the vagina.I am sorry this is so long and hope it makes sense. I would like to thank you again for caring love from
sue
little mo
xx
Re: am I the only one in the world with these symptoms?
Hello again mo - I am sorry to hear that you are feeling so bad at the moment, I hope that things do soon improve for you.
I will go through your post point by point - it will make this post a bit long but hopefully it will be clearer to read. And also hopefully others will come in on this as well!
Scans are not used to diagnose prolapses like this. Often a prolapse is only apparent when the person is standing up. You should be seeing a gynaecologist if prolapse is suspected, and the examination there may include a pelvic examination done whilst you are standing up.
Prolapses can be very uncomfortable indeed. Don't use bath gel or talcum powder after the bath or shower, anything along those lines may make you very sore and is best avoided.
If I could make a suggestion - please don't think this is criticism - your description of this problem as 'a lump at the back of the clitoris' gives a rather different expectation. A 'lump' implies something which is solid like a cyst or a growth. And 'at the back of the clitoris' implies that it is not in the vagina, that it is located directly behind the clitoris, between the clitoris and the rest of your body.
And oh dear, you really do need to have a GP - sounds as if you are not on anyone's list at the moment, have I got this right?
I will go through your post point by point - it will make this post a bit long but hopefully it will be clearer to read. And also hopefully others will come in on this as well!
This is the use of contrast dye to make things clearer on a scan. I know that they use this particular one with a CT scan, because I've had it myself.A nuclear scan is with injection contrast The purpose is to track the dye and at that time they wanted to rule out gall bladder ,which they did. The injection leaves metalic taste in mouth and makes it feel as if one has wet themself.
I haven't come across this. Anyone else?An M R N I believe is the same as M R I but the N stands for neuropathy ...enables to look more into nerves and tissue.
Remember that the person doing the procedure isn't necessarily going to be completely up on all your diagnoses etc. Mine was done by another C-R consultant, not the one who'd been looking after me. They will invariably not want to discuss things right then.This week I had a Colonoscopy under G a. all that was found was scattered diveticulam disease and no sign of acut pathology. I seem to think that the reason for this procedure was lost as when I asked about a connection with the prolapse I was given some blank looks and the response was a little strange that I had asked such a question.
Just because you have had a hysterectomy doesn't mean that you can't still have a prolapse - the remains of the vagina can fall down, this is called a vault prolapse. There can still be cystocele and rectocele and other things along those lines. If you have a bulge in the vagina, this may be a prolapse.As I say, I have suffered this for three yrs had a hysterectomy in between think it was a womb prolapse instead it made things worse.
Yes you are right that the doctors and all imaging does not show this bulge that I feel and can wiggle which makes my vagina at times so sore any bath gel sends me flying with burning .
Scans are not used to diagnose prolapses like this. Often a prolapse is only apparent when the person is standing up. You should be seeing a gynaecologist if prolapse is suspected, and the examination there may include a pelvic examination done whilst you are standing up.
Prolapses can be very uncomfortable indeed. Don't use bath gel or talcum powder after the bath or shower, anything along those lines may make you very sore and is best avoided.
Oh dear, not a good experience for you, to say the least.I have a problem with gp surgery. My registered doctor three yrs ago at the time I was so deppressed vulnerable and confused with my problem of a lump at the back of the clitoris, told me he was concerned at how many times I was at the surgery....(it isn't always easy to get gp of choice if they have a day off). I was so upset at his coldness that I sobbed in my car for an hour in the car park and vowed I wouldn't see him again and didn't.
If I could make a suggestion - please don't think this is criticism - your description of this problem as 'a lump at the back of the clitoris' gives a rather different expectation. A 'lump' implies something which is solid like a cyst or a growth. And 'at the back of the clitoris' implies that it is not in the vagina, that it is located directly behind the clitoris, between the clitoris and the rest of your body.
What did he mean by you going behind his back?I saw instead a gp who was interested in alternative methods...but our relationship as patient and doc ended when he telephoned my house some five weeks ago.
This gp who I trusted and liked told me he could no longer offer care as he is troubled by me going behind his back!!It was three weeks before that when he told me he was no longer looking for a cause and would not sanction any more scans.
Is the gabapentin for relief of neuropathic pain? Could I ask what dose you are on at the moment, and are there any other meds?I was on a life threatening level of garberpentin and didn't know, nobody to guide me with amounts.
And oh dear, you really do need to have a GP - sounds as if you are not on anyone's list at the moment, have I got this right?
Re: am I the only one in the world with these symptoms?
hello Calluna
Thank you again, the pain three years ago started at the back of the clitoris inside the body. I was slightly embarrased in telling urologist that it verged on a sexual arousment that had no relief..I still find that difficult to say to people. That's where it started and then it moved to where it is now when standing at the top of the vagina again inside the body. laying or sitting seems to make it retract.
Whilst I was waiting for specialists appointment or results or waiting for procedures I always wanted to be one step ahead and have the next "thing" to go to so bridging the gap ..often if my chosen gp was not in surgery I saw someone else who thought of something else and was refering me not knowing thAt my gp had put a stop on looking for a cause. Also as I had seen some specialists private I was just able to phone the secretary for an apoointment rather than wait for a refferal ..this is what he meant by going behind his back...he was obviously getting letters from consultants he knew nothing about ...I don't understand because it seems if one doesn't help themselves and not pro active that is wrong, where also if one tries to help themself and research that is wrong also, seemingly.
I still have gp to go to there are seven in the practice but none will take me on as a registered patient all saying they have enough cronic pain patients.
I am dropping down on pre gablin I was on 900 mgs now I take 125 three times a day
I am so grateful and will answer any question if anything is unclear
thanks love from moxx
Thank you again, the pain three years ago started at the back of the clitoris inside the body. I was slightly embarrased in telling urologist that it verged on a sexual arousment that had no relief..I still find that difficult to say to people. That's where it started and then it moved to where it is now when standing at the top of the vagina again inside the body. laying or sitting seems to make it retract.
Whilst I was waiting for specialists appointment or results or waiting for procedures I always wanted to be one step ahead and have the next "thing" to go to so bridging the gap ..often if my chosen gp was not in surgery I saw someone else who thought of something else and was refering me not knowing thAt my gp had put a stop on looking for a cause. Also as I had seen some specialists private I was just able to phone the secretary for an apoointment rather than wait for a refferal ..this is what he meant by going behind his back...he was obviously getting letters from consultants he knew nothing about ...I don't understand because it seems if one doesn't help themselves and not pro active that is wrong, where also if one tries to help themself and research that is wrong also, seemingly.
I still have gp to go to there are seven in the practice but none will take me on as a registered patient all saying they have enough cronic pain patients.
I am dropping down on pre gablin I was on 900 mgs now I take 125 three times a day
I am so grateful and will answer any question if anything is unclear
thanks love from moxx
Re: am I the only one in the world with these symptoms?
Hello again mo
You have run into medical etiquette problems, oh dear... So if you are not actually registered with any of the GPs then you will be seeing them on a 'visitor' basis.... not ideal, obviously. Your GP can be your best ally when you have a difficult problem to sort out.
If you are asking my advice, I would say that you should think about making amends with one of the GPs. I know it can be difficult to see the same doctor but it is worth waiting a few days to see someone, for the sake of continuity, which is very valuable. I've fallen into difficulties myself by seeing other doctors at the GP surgery.
You are going to need to be very calm and rational, this is difficult when you are in pain and feel that nobody is hearing you. But hang in there, because you do need help and support, and your GP is the gateway. Offer an apology - costs nothing after all - and ask if they would please consider you as a patient again. And when you get in there again - because you will if you are calm and polite- explain very clearly exactly what the problem is now - leave the history to one side unless you are specifically asked about it.
I do wish you luck with this. Stay cool and calm and you will get there!
You mention that you are taking pregabalin (not the same thing as gabapentin!) 125mg 3 times a day at the moment, and that you were taking 900mg a day. That was a very high dose indeed, even for epilepsy the dosage does not usually go over 600mg a day - good thing you are not on such a high dose now!
You don't say whether this is for pain relief - but if it is, then it has already been recognised that your pain is neuropathic. And it is apparent that the pudendal nerve is involved, because of the location of the pain. I expect that pudendal neuralgia - PN - has been mentioned in your notes somewhere already. That describes your pain - but of course it doesn't explain what caused it.
However I really do think that at this point you will do better to stop looking for a cause and really focus on management of this pain, at least for the time being. Once the pain is under control, then you can move to see what else can be done - working with your doctor. PN can be caused by many things - including cycling, weightlifting, accidental injury - but even if you do identify the cause, that isn't going to do anything for your pain right now.
Please keep us posted!
You have run into medical etiquette problems, oh dear... So if you are not actually registered with any of the GPs then you will be seeing them on a 'visitor' basis.... not ideal, obviously. Your GP can be your best ally when you have a difficult problem to sort out.
If you are asking my advice, I would say that you should think about making amends with one of the GPs. I know it can be difficult to see the same doctor but it is worth waiting a few days to see someone, for the sake of continuity, which is very valuable. I've fallen into difficulties myself by seeing other doctors at the GP surgery.
You are going to need to be very calm and rational, this is difficult when you are in pain and feel that nobody is hearing you. But hang in there, because you do need help and support, and your GP is the gateway. Offer an apology - costs nothing after all - and ask if they would please consider you as a patient again. And when you get in there again - because you will if you are calm and polite- explain very clearly exactly what the problem is now - leave the history to one side unless you are specifically asked about it.
I do wish you luck with this. Stay cool and calm and you will get there!
You mention that you are taking pregabalin (not the same thing as gabapentin!) 125mg 3 times a day at the moment, and that you were taking 900mg a day. That was a very high dose indeed, even for epilepsy the dosage does not usually go over 600mg a day - good thing you are not on such a high dose now!
You don't say whether this is for pain relief - but if it is, then it has already been recognised that your pain is neuropathic. And it is apparent that the pudendal nerve is involved, because of the location of the pain. I expect that pudendal neuralgia - PN - has been mentioned in your notes somewhere already. That describes your pain - but of course it doesn't explain what caused it.
However I really do think that at this point you will do better to stop looking for a cause and really focus on management of this pain, at least for the time being. Once the pain is under control, then you can move to see what else can be done - working with your doctor. PN can be caused by many things - including cycling, weightlifting, accidental injury - but even if you do identify the cause, that isn't going to do anything for your pain right now.
Please keep us posted!
Re: am I the only one in the world with these symptoms?
Hello Mo,
I am so sorry you are obviously having a terrible time. You have several symptoms that sound like PN such as you have persistent sexual arousal and the feeling of a foreign body in your vagina that doctors are unable to see. You sound as if your doctors have decided that your problems are psychological. Can you go to a PN specialist without a referral? There are doctors in the UK who can help you and their names are listed on this site. BTW an MRN is a magnetic resonance neurography and I think it is supposed to be more for visualising the nerves than an MRI.
Hope you get some help soon.
I am so sorry you are obviously having a terrible time. You have several symptoms that sound like PN such as you have persistent sexual arousal and the feeling of a foreign body in your vagina that doctors are unable to see. You sound as if your doctors have decided that your problems are psychological. Can you go to a PN specialist without a referral? There are doctors in the UK who can help you and their names are listed on this site. BTW an MRN is a magnetic resonance neurography and I think it is supposed to be more for visualising the nerves than an MRI.
Hope you get some help soon.
Diagnosed with left side PN by Dr Renney, March 2010, after over 2 years of searching for help
Left TG Surgery, Dr Ansell, August 2010, failed to relieve pain
Left TG Surgery, Dr Ansell, August 2010, failed to relieve pain