I am new to this site but hope I can get some help and also input some help to others.
Six years ago I had a Sacro Spinus Fixation (they hitch the uterus to the sacro spinus ligament). Immediately I came round I knew something was wrong as I felt as if my pelvic area was on fire. I was eventually diagnosed with having bilateral pudendal nerve entrapment. I then had four nerve blocks (two deep into the Alcocks Canal) which did nothing. I went on to have the right nerve traced and a ligament cut to make a man made channel in the hope the nerve would free up. Then a total hysterectomy, first off undoing the SSF. Then the left nerve traced etc. Finally a bladder repair.
I was getting along just fine, walking my dogs every day and came off the Lyrica. This lasted for about 6 months and then the pain started creeping back on the left bringing me up to date and the last few weeks have not been good. I take homeopathic remedies as body does not like regular medicine and have tried acupuncture. I am in England and the Doctor who did the traces has retired and to my knowledge no-one has taken over. I am seeing the Pain Management Consultant in a few weeks and have so many questions for him! Has anyone experienced this and can anyone share with me what technique is best - I have looked at Dr Robert and Dr Beco's sites. I have been told that the transgluteal approach which I had exposes the nerve to the air and fibrous tissue can grow back over the nerve at a later date entraping it once more, alternatively I may have had more than one entrapment in the first place. I feel so down as it looked at one point in time that I would never be completely free of pain but could lead a more "normal" life, but the pain has now returned!
Six years down the line!
Re: Six years down the line!
Oh Jane, what a rollercoaster ride you've been on! Welcome to HOPE. Hopefully you can get some answers on this site and some advice about caregivers from others in England. Have you checked out the "Doctors" page?
I'm really sorry that the pain has returned after all your treatments. What was your original surgery intended to address?
Wishing you a better day today than yesterday.
I'm really sorry that the pain has returned after all your treatments. What was your original surgery intended to address?
Wishing you a better day today than yesterday.
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
Re: Six years down the line!
Thank you for your support Lernica. No I have not been on the "Doctors" site - will do. My initial op was for a prolapsed uterus (anyone out there do not have this SSF op). I wish you well too.
Re: Six years down the line!
Hi Jane, welcome to the forum!
I too am in the UK, England to be more specific, and there are several others from the UK here on the boards as well. I am sorry that this has happened to you.
I too woke up after prolapse surgery with PN, except that in my case an area was completely numb and the feeling came back over 2 - 3 weeks, it came back as pain and has been with me ever since. My surgery was to repair a complex vault prolapse (I had a hyst about 15 years ago for uterine prolapse, without SSF) using quite a lot of mesh and it involved spinal fixation as well - I was told it was not the usual sacrospinous fixation but 'much higher up'.
Here in the UK there are two consultants with a special interest in PN issues, there is Dr Andrew Baranowski who is in London, and Dr Gareth Greenslade who is based at Frenchay Hospital, Bristol. Dr Greenslade and his team have been trained in France at the Clinic in Nantes. If you have a look on the home pages of this site (top of every page, red writing) there is some information there about doctors, and a lot of other useful stuff too. So maybe you could consider seeing either Dr G or Dr B, depending on whereabouts you live in the UK.
I have been attending my local Pain Clinic, who have been very supportive, but we reached the point where there didn't seem to be anything else they could do for me. So with their agreement (and at my suggestion) I've been to see Dr Greenslade through the NHS, as I am not far from Bristol. He says that in my case the thing to do is to try and free up the nerve, nothing else is really addressing the problem, and he's referred me to a surgeon - Mr Dixon, also based at Frenchay. I am still waiting for an appointment. After that he says he would consider a neurostimulator, which would be fitted by neurosurgeons again based at Frenchay. I'm hoping that we don't get that far, that is a big step to take.
I am getting along alright at the moment, I too walk my dog every day (just one cocker spaniel pup, in my case) but only on the flat, I have discovered that walking uphill is seriously painful. Good thing that the canal towpath is not far away! Also I have a cushion that I have found very helpful indeed (Togu Air Active Cushion from Amazon, pricy unfortunately) and I don't sit without it.
I am interested to hear that you are taking homoepathic remedies, what are you taking at the moment?
And I too have tried acupuncture which did seem to help, however we discovered that the sessions needed to be ongoing otherwise the improvement didn't last. I had quite a lot of sessions through the Pain Clinic, but paying for more sessions privately is not possible on our budget. I now use acupressure needles which I can place myself.
I do hope that things improve for you soon, it is miserable when things seem to be going backwards again.
I too am in the UK, England to be more specific, and there are several others from the UK here on the boards as well. I am sorry that this has happened to you.
I too woke up after prolapse surgery with PN, except that in my case an area was completely numb and the feeling came back over 2 - 3 weeks, it came back as pain and has been with me ever since. My surgery was to repair a complex vault prolapse (I had a hyst about 15 years ago for uterine prolapse, without SSF) using quite a lot of mesh and it involved spinal fixation as well - I was told it was not the usual sacrospinous fixation but 'much higher up'.
Here in the UK there are two consultants with a special interest in PN issues, there is Dr Andrew Baranowski who is in London, and Dr Gareth Greenslade who is based at Frenchay Hospital, Bristol. Dr Greenslade and his team have been trained in France at the Clinic in Nantes. If you have a look on the home pages of this site (top of every page, red writing) there is some information there about doctors, and a lot of other useful stuff too. So maybe you could consider seeing either Dr G or Dr B, depending on whereabouts you live in the UK.
I have been attending my local Pain Clinic, who have been very supportive, but we reached the point where there didn't seem to be anything else they could do for me. So with their agreement (and at my suggestion) I've been to see Dr Greenslade through the NHS, as I am not far from Bristol. He says that in my case the thing to do is to try and free up the nerve, nothing else is really addressing the problem, and he's referred me to a surgeon - Mr Dixon, also based at Frenchay. I am still waiting for an appointment. After that he says he would consider a neurostimulator, which would be fitted by neurosurgeons again based at Frenchay. I'm hoping that we don't get that far, that is a big step to take.
I am getting along alright at the moment, I too walk my dog every day (just one cocker spaniel pup, in my case) but only on the flat, I have discovered that walking uphill is seriously painful. Good thing that the canal towpath is not far away! Also I have a cushion that I have found very helpful indeed (Togu Air Active Cushion from Amazon, pricy unfortunately) and I don't sit without it.
I am interested to hear that you are taking homoepathic remedies, what are you taking at the moment?
And I too have tried acupuncture which did seem to help, however we discovered that the sessions needed to be ongoing otherwise the improvement didn't last. I had quite a lot of sessions through the Pain Clinic, but paying for more sessions privately is not possible on our budget. I now use acupressure needles which I can place myself.
I do hope that things improve for you soon, it is miserable when things seem to be going backwards again.
Re: Six years down the line!
Hi Calluna, Thank you for replying to me, I have had more back up in the last hour than in the last six years!
I am actually under Dr Baronowski, he is the Neurologist i first saw who diagnosed PNe and said at the time that I would be lucky to get back 60% of my life - what a shock! He implemented the four nerve blocks and I am due to see him at the beginning of June, albeit he is not a surgeon, he is in charge of the Pain Management Clinic in London.
Is Dr Greenslade a Surgeon? You speak of going for surgery - is that likely to be in England? My surgery x 2 was done by Professor Carlstedt at the London Hospital of Neurology and to my knowledge there is no-one taking over from him.
I am wondering what the next step will be after I have spoken to Dr B or alternatively I have to make a decision to go abroad and have more surgery - I don't want to go there but I really don't know of what else could "work".
I am actually under Dr Baronowski, he is the Neurologist i first saw who diagnosed PNe and said at the time that I would be lucky to get back 60% of my life - what a shock! He implemented the four nerve blocks and I am due to see him at the beginning of June, albeit he is not a surgeon, he is in charge of the Pain Management Clinic in London.
Is Dr Greenslade a Surgeon? You speak of going for surgery - is that likely to be in England? My surgery x 2 was done by Professor Carlstedt at the London Hospital of Neurology and to my knowledge there is no-one taking over from him.
I am wondering what the next step will be after I have spoken to Dr B or alternatively I have to make a decision to go abroad and have more surgery - I don't want to go there but I really don't know of what else could "work".
Re: Six years down the line!
Professor Carlstedt has retired?? That will be a shock to many who have (and continue) to be treated by him. See this recent thread: http://www.pudendalhope.info/forum/view ... t&start=10
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
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shawnmellis
- Posts: 227
- Joined: Sat Dec 04, 2010 8:42 pm
- Location: Concord, NC USA
- Contact:
Re: Six years down the line!
Jane,
Sorry to hear about everything you have been through. I can definitely empathize with most of what you have been through. I am sorry to hear that you are not able to tolerate medication very well. I am curious which medication you have tried and the effects on you they had. I know that homeopathic treatment can probably help you to some degree. Have you tried Tramadol or Neurontin for pain, diazepam (valiuma) for any spasms that make you feel you have to urinate frequently, or Ibuprofen for inflammation? These have helped me to some degree without any real side effects other than drowsiness. As far as homeopathic remedies, the only things that have worked for me are warm baths, avoiding sitting on your but as much as possible, avoiding walking too much, avoid driving, avoid lifting, avoid sex, eat a high in fiber diet to avoid constipation, drink enough water and fluids to prevent constipation but do not drink too much at one time or too often, in other words avoid anything that could possibly aggrivate your pelvice floor muscles and ligaments and nerves, which can cause more inflammation around the nerve or irritate it. These are the things that have helped me the most over the past year. Over time, if you do these things, it may eventually get better. Good luck in finding a good doctor in the U.K.. I am in the U.S If I were you, I'd see Dr. Bisschop in France, or somebody in France, since they seem to be the best at this stuff from what I've researched. Good luck and God Bless and praying for your health to eventually improve. Never Ever Give UP.
Shawn
Sorry to hear about everything you have been through. I can definitely empathize with most of what you have been through. I am sorry to hear that you are not able to tolerate medication very well. I am curious which medication you have tried and the effects on you they had. I know that homeopathic treatment can probably help you to some degree. Have you tried Tramadol or Neurontin for pain, diazepam (valiuma) for any spasms that make you feel you have to urinate frequently, or Ibuprofen for inflammation? These have helped me to some degree without any real side effects other than drowsiness. As far as homeopathic remedies, the only things that have worked for me are warm baths, avoiding sitting on your but as much as possible, avoiding walking too much, avoid driving, avoid lifting, avoid sex, eat a high in fiber diet to avoid constipation, drink enough water and fluids to prevent constipation but do not drink too much at one time or too often, in other words avoid anything that could possibly aggrivate your pelvice floor muscles and ligaments and nerves, which can cause more inflammation around the nerve or irritate it. These are the things that have helped me the most over the past year. Over time, if you do these things, it may eventually get better. Good luck in finding a good doctor in the U.K.. I am in the U.S If I were you, I'd see Dr. Bisschop in France, or somebody in France, since they seem to be the best at this stuff from what I've researched. Good luck and God Bless and praying for your health to eventually improve. Never Ever Give UP.
Shawn
Bringing Help Awareness Education to Patients & Doctors about PNE through Videos at http://www.YouTube.com/PudendalNerve & PudendalHope.com Please tell Dr. Oz to cover topic of PNE by going to http://www.doctoroz.com/contact Started 1/2010. Initial urinary tract infection in 1/2010. Medication: Diazepam, Tramadol. 4 nerve blocks. physical reinjury 8/2010. 7/2011 Potter MRI Varices dorsal branch 8/23/11 Diagnosis Entrapment of Dorsal Branch Dr. Lee Dellon There's Always Hope!
Re: Six years down the line!
It was like a door opening for me too, when I found this site! I had not known that there were any doctors in the UK specialising in PN, until I came here.
So you are already with Dr Baranowski, that's good! But not so good to hear that Prof Carlstedt is retiring, I wonder who is going to be working with Dr B after this? Maybe this will come up in conversation when you see him in June.
Dr Greenslade is not a surgeon, he is an anaesthesiologist and works from the Pain Management Clinic at Frenchay Hospital, he has a particular interest in PN, much like Dr Baranowski. He is a really nice man, very easy to talk to, and very kind. I have heard that usually he refers people who are candidates for PN surgery on to Mr Wong and Mr Patel who are both surgeons at Frenchay, Mr Patel is a neurosurgeon.
In my case he thinks that Mr Dixon is a more appropriate choice. Mr Dixon is a pelvic floor specialist - Dr Greenslade told me that in his opinion, Mr Dixon is one of the foremost pelvic floor surgeons in the country - and has a particular interest in doing follow-up surgery on mesh work done by other surgeons - fixing things that other people have done, that haven't turned out quite right - and that's certainly my situation! He also specialises in laparoscopic surgery. Dr Greenslade said that he would expect that Mr Dixon will have a look - laparoscopically - and try to free up the nerve if possible. There is a lot of mesh in there, this is the prime suspect. The surgery would be done at Frenchay Hospital, and Dr Greenslade says that he will probably do the anaesthesia, so he will be present.
If Dr Baranowski doesn't have someone in mind to take his surgical referrals - although I expect he will - then it might be worth your while coming down to Bristol to see Dr Greenslade.
Could you tell me more about the homeopathic remedies that you are taking? I am very interested.
And I would echo what shawnmellis says about lifestyle changes, apart from the warm baths which are a big pain trigger for me. Never sitting at all apart from on my cushion has made a big difference.
So you are already with Dr Baranowski, that's good! But not so good to hear that Prof Carlstedt is retiring, I wonder who is going to be working with Dr B after this? Maybe this will come up in conversation when you see him in June.
Dr Greenslade is not a surgeon, he is an anaesthesiologist and works from the Pain Management Clinic at Frenchay Hospital, he has a particular interest in PN, much like Dr Baranowski. He is a really nice man, very easy to talk to, and very kind. I have heard that usually he refers people who are candidates for PN surgery on to Mr Wong and Mr Patel who are both surgeons at Frenchay, Mr Patel is a neurosurgeon.
In my case he thinks that Mr Dixon is a more appropriate choice. Mr Dixon is a pelvic floor specialist - Dr Greenslade told me that in his opinion, Mr Dixon is one of the foremost pelvic floor surgeons in the country - and has a particular interest in doing follow-up surgery on mesh work done by other surgeons - fixing things that other people have done, that haven't turned out quite right - and that's certainly my situation! He also specialises in laparoscopic surgery. Dr Greenslade said that he would expect that Mr Dixon will have a look - laparoscopically - and try to free up the nerve if possible. There is a lot of mesh in there, this is the prime suspect. The surgery would be done at Frenchay Hospital, and Dr Greenslade says that he will probably do the anaesthesia, so he will be present.
If Dr Baranowski doesn't have someone in mind to take his surgical referrals - although I expect he will - then it might be worth your while coming down to Bristol to see Dr Greenslade.
Could you tell me more about the homeopathic remedies that you are taking? I am very interested.
And I would echo what shawnmellis says about lifestyle changes, apart from the warm baths which are a big pain trigger for me. Never sitting at all apart from on my cushion has made a big difference.
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helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: Six years down the line!
Hi Jane,
Sorry to hear your sad tale, especially when you have been through so much and thought you had come through it, and managing again. There are a few on this forum who have had to have 're do's' but the debate on which type of surgery to choose continues.
There havve been a few small but significant advances in surgeries but this is mainly in America and because I would be unable to take advantage of this I haven't got any precise details.
For what is available here and France, there is still Professor C (as I/m sure you know) John and Romaine on this site are the latest here to have surgery from him. John just a few weeks ago. I think he does the traditional TG approach ? ? you will know better than me.
From what I understand it depends on if your sacrotuberous ligament is involved in the entrapment. If so the TG approach seems to be the only one that will work for you. See The home page. Take all of your surgical reports in when you see Dr B and see what he says. Of course he may have them already.
Professor Carstead is still the most experienced PN surgeon in England, the Bristol team have been going for around 2-3 years but as yet we haven't had any feed back on HOPE from any surgical procedures from thier patients. The surgeons names there are Dr Wong and Patel. Dr Greenslade is the pain managment guy, and is as far as Calluna and I have got yet.
I'm not sure if there is an overall reason why PN surgery doesn't always work. Scar tissue, maybe, which would build up over the 6 months+ timescale you mentioned . Have you got problems bilaterally again? One thing worth asking is does Prof C use any Collegen nerve wrap or similar? Dr Hibner in the states does as it helps stop scar tissue forming while the nerve heals.
Take care
Helen
Sorry to hear your sad tale, especially when you have been through so much and thought you had come through it, and managing again. There are a few on this forum who have had to have 're do's' but the debate on which type of surgery to choose continues.
There havve been a few small but significant advances in surgeries but this is mainly in America and because I would be unable to take advantage of this I haven't got any precise details.
For what is available here and France, there is still Professor C (as I/m sure you know) John and Romaine on this site are the latest here to have surgery from him. John just a few weeks ago. I think he does the traditional TG approach ? ? you will know better than me.
From what I understand it depends on if your sacrotuberous ligament is involved in the entrapment. If so the TG approach seems to be the only one that will work for you. See The home page. Take all of your surgical reports in when you see Dr B and see what he says. Of course he may have them already.
Professor Carstead is still the most experienced PN surgeon in England, the Bristol team have been going for around 2-3 years but as yet we haven't had any feed back on HOPE from any surgical procedures from thier patients. The surgeons names there are Dr Wong and Patel. Dr Greenslade is the pain managment guy, and is as far as Calluna and I have got yet.
I'm not sure if there is an overall reason why PN surgery doesn't always work. Scar tissue, maybe, which would build up over the 6 months+ timescale you mentioned . Have you got problems bilaterally again? One thing worth asking is does Prof C use any Collegen nerve wrap or similar? Dr Hibner in the states does as it helps stop scar tissue forming while the nerve heals.
Take care
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
Re: Six years down the line!
Calluna and Helenlegs, many thanks for your replies.
I was told that Prof Carlstedt had retired, maybe my information was not correct, I expect I can find out from Dr B in June.
With all my operations I have had to ask for a different type of anaesthetic, cos I get so sick and when I have had morphine pumped in, I get really ill and anyway morphine I was told does not treat nerve pain, which I found out to my cost!
I can not tolerate any opiates, which leaves paracetamol and ibuprofen. I do take clonezepan (half) occasionally at night if I can't sleep (I read that that was good for PNe as it relaxes the body), hence why I turned to Homeopathic remedies. I see a Homeopath once a month and she has given me Colocynth which works really well for the pain but unfortunatley does not last much longer than an hour, however I can take as many as I like. She also has helped me greatly with my mind states.
I also go to Yoga once a week which makes me feel that I am being positive about my body but do not push myself and sit out any pelvic floor exercises. I have been in touch with an American Doctor during the last five years who has been a lifeline to me and he told me never to do any "kegals". It is such a shame I cannot afford or travel to America because as you say they seem way advanced in this field. Sitting for any length of time is really bad, which I read we all suffer from but I used to walk my dogs quite a lot but never through undergrowth as it has the effect similar to walking on sand on the beach! I cannot travel too far and have opted out of the theatre, pictures and if I go out for a meal I have to find a place with soft seats (even taking a cushion)! I now have a beautiful grandaughter and now my daughter-in-law has returned to work I have her for half a day, I can't do a full day but have to say it really takes its toll on me but I so want to be a part of her life.
Dr Baronowski is a really clever man if a little abrupt and works alongside a Miss Elneil who is a wonderful lady, she is a Uro-Gynaecologist and has helped me so much and also did/does work with Prof Carlstedt, who is also brilliant but not a great conversationalist!
I have a lot of questions for Dr B in June.
My heart goes out to you all out there who suffer with this terrible pain.
I was told that Prof Carlstedt had retired, maybe my information was not correct, I expect I can find out from Dr B in June.
With all my operations I have had to ask for a different type of anaesthetic, cos I get so sick and when I have had morphine pumped in, I get really ill and anyway morphine I was told does not treat nerve pain, which I found out to my cost!
I can not tolerate any opiates, which leaves paracetamol and ibuprofen. I do take clonezepan (half) occasionally at night if I can't sleep (I read that that was good for PNe as it relaxes the body), hence why I turned to Homeopathic remedies. I see a Homeopath once a month and she has given me Colocynth which works really well for the pain but unfortunatley does not last much longer than an hour, however I can take as many as I like. She also has helped me greatly with my mind states.
I also go to Yoga once a week which makes me feel that I am being positive about my body but do not push myself and sit out any pelvic floor exercises. I have been in touch with an American Doctor during the last five years who has been a lifeline to me and he told me never to do any "kegals". It is such a shame I cannot afford or travel to America because as you say they seem way advanced in this field. Sitting for any length of time is really bad, which I read we all suffer from but I used to walk my dogs quite a lot but never through undergrowth as it has the effect similar to walking on sand on the beach! I cannot travel too far and have opted out of the theatre, pictures and if I go out for a meal I have to find a place with soft seats (even taking a cushion)! I now have a beautiful grandaughter and now my daughter-in-law has returned to work I have her for half a day, I can't do a full day but have to say it really takes its toll on me but I so want to be a part of her life.
Dr Baronowski is a really clever man if a little abrupt and works alongside a Miss Elneil who is a wonderful lady, she is a Uro-Gynaecologist and has helped me so much and also did/does work with Prof Carlstedt, who is also brilliant but not a great conversationalist!
I have a lot of questions for Dr B in June.
My heart goes out to you all out there who suffer with this terrible pain.