Chronic Pelvic Neuropathic Pain Bristol Clinic Dr Greenslade - advice please

Hi everyone, hope you are all having one of the good days!

I have a 3 year history of chronic pelvic pain that's complicated but to summarise:-

5 surgeries for endo, removal of ovarian dermoid cysts, ovary and adhesions/scar tissue, hysterectomy and removal of other ovary.

My latest surgery was the hyst and the surgeon was wonderful, unfortunatly I still have groin pain and also leg pain that I have been told is neuropathic pain. I have now been discharged form gynae.

I have been to the local pain management service and had 1 nerve block done which didn't do much. At my last visit it was obvious that the consultant thought I was exaggerating my pain and he didn't seem to believe that I am having lots of mobility problems as a result.

I am considering a private appointment with the clinic in Bristol run by Dr Greenslade.

When looking through other posts I can see lots of good recommendations but they all seem related to pudental nerve problems. I have been told my problem could be genito-femoral nerve or maybe ilioinguinal nerve or obturator but no-one has mentioned pudental. I actually think its a combination of maybe all 3 different nerves.

Does the clinic also deal with these other pelvic nerves or just pudental nerve? I haven't been able to work for ages so can't afford to waste money on an appointment if it is not necessary.

I have applied for DLA payments but my consultant has said he thinks my problem isn't permanent but will last years (which I think means I won't get it) so it's important both for myself and for DLA to get a correct diagnosis and likelihood of getting better.

Has anyone been to this clinic for either pudental or other pelvic nerve problems? How did you find it?

Am I right in thinking the only places in the UK that specialise in pelvic nerves are in Bristol, London or Oxford?

Thanks for reading x

43 Replies

oldestnewest
  • Dr G is a pain specialist and is familiar with neuropathic pain regardless of which nerve(s) are responsible. There are many nerves in the pelvis of which the pudendal is just one. There are many patients who have other nerve injuries such as those you mention. Hernia surgery can trigger can be a trigger for some of the other nerve problems.

    You are right that there are very few places in the UK that would recognize the above.

    Let us know how you get on

  • Thanks for the speedy reply, do you know if damage to the any of the other nerves apart from pudental can be treated by injections or an op? Thanks

  • Also, I know you aren't a doctor but you do know lots about this kind of thing, do you know if this kind of nerve pain is normally permanent if not treated? My pain consultant thinks it's from my caesarean and will last years but eventually go, I disagree with that as the pain has always been in the same place where my ovary was from when the cyst twisted, I think it's probably permanent x

  • Improvement is definitely possible but likely to take considerable time. What is permanent ? I would say that several years is pretty permanent in terms of pain.

  • Going to see Gareth Greenslade for a private consultation was the best decision I have made in the last two and a half years. He is a highly experienced pain management consultant and he really listens to you. My understanding is that he has many patients with pelvic pain.

    I suggest you go to see him and take with you some written notes to help you get the really important facts across. After my private consultation, my GP referred me to Dr Greenslade as an NHS patient. I eventually had surgery last October in Bristol carried out by one of Dr Greenslade's colleagues, with Dr Greenslade as anaesthetist.

    I was told not to expect too much for about 6 months after surgery and I almost don't want to tempt fate by saying that the past 9 days have been comparatively pain free, maybe 2 or 3/10 instead of a constant 8/10. Last weekend I found myself thinking about going out for a day. That hasn't happened since October 2011.

    I wish you all the very best and hope we may hear more positive news from you.

  • I'm very glad that you are feeling an improvement after so much pain, it much be such a relief. Can I ask, was the surgery for prudential nerve things? Also how long did you need to wait for the op please. Thanks

  • My surgery was eventually for right sided pudendal nerve decompression and also for rectal intussusception (a type pf rectal prolapse). The latter problem was found after Dr G suspected it. I had previously been seen by a consultant colorectal surgeon (at another hospital), who had missed that problem completely! I had also been found to have lots of pelvic adhesions when I had a hysterectomy 5 years ago.

    I’m 62 years old now and realise that many of the problems I have experienced may have been linked to each other and precipitated by childbirth, previous surgery, medication side effects – especially never-ending constipation from painkillers and just plain old getting older.

    I first saw Dr G privately in Nov 2012 after a self-referral. My GP then referred me to him as an NHS patient and after further tests Dr G referred me to his surgical colleague Mr Anthony Dixon, also in Bristol. I was seen in Jul 2013 at Mr Dixon’s O.P. clinic at Frenchay and the decision for surgery was made after that.

    My local Health Authority did not want to fund the pudendal nerve decompression and I would have waited at least 6 months for the other op. After a further 2 months of getting nowhere even getting on Mr D’s surgical list because of inactivity on the part of my PCT in agreeing to fund the surgery I saw Mr Dixon privately in Bristol on 13 Sep 2013 and asked how long the wait would be for the surgery if I paid. Mr D got his diary out and I had the op 3 weeks later in early October at the Spire Hospital. It was worth every penny.

    My PCT were a big problem. I hope yours will be more helpful. I am sure you will not regret going to see Gareth Greenslade. I wish you all the very best.

  • thanks, maybe I should check with the GP if I would get the funding first, I really appreciate the info though, thanks you've been a great help x

  • Sorry. You all ready answered my previous question.

  • hi, I am Dutch and having severe problems for 9 years, no one seems able to help me and to make diagnosis. Can you help me a bit where to go etc?

    thanks,

    els58

  • Are you willing to tell me what kind of surgery you were given, and possibly a little pain history? Thank you.

  • Hi Eggcustard,

    It may be PIP (new form of DLA) and ESA you want to apply for. there is a good website to help with these called Benefits and Work, also if you google 'descriptors / points for PIP / ESA' this may help with your application. Its all about point scoring. DLA used to be for a minimun of 3/6 months so that shouldn't be a problem even if it is not permanent. The key thing is supplying medical 'evidence' at the point of applying, send copies in with your form if possible.(of consultants letters etc) This really helps back up your application.

    Also, i am wondering about such a referral too. Am near to Bristol but don't have private insurance. I've got bad adhesions in the pelvic area after a sigmoid colectomy op, pain in the left pelvis more recently shooting pains which are worse on walking / sitting down. been advised best no more surgery though as adhesions bad and it can make them worse. Going to see GP next week do you think maybe referral to local hospital gynae or try for Dr Greenslade or manage with pain relief first? Any advice also welcome xx

  • Hi, thanks for replying, I have looked through the dla criteria and think it does apply to me but the problem I have is the evidence. I have a letter from my pain consultant to the GP saying I have genito-femoral nerve pain and I have included his name on the forms, but I don't think he believes the extent it affects my mobility. I have also included the GP and he knows everything that is going on. I also included the gynae but he has discharged me now and the endo side of things is under control it's the nerve thing and possibly adhesion pain causing the probs.

    From what I have read with neuropathic pain the sooner the better with diagnosis and treatment before permanent damage is done, shooting pains are definitely neuropathic pain and mine is also a very deep ache.

    When was the last time you saw a gynae? I was told by one that my scar tissue couldn't be removed but my last gyane manged to remove a lump the size of a golf ball ! With that pressing on everything as well as everything else that's happened I'm not surprised I'm damaged ! If you are close to bristol anyway and don't mind waiting you could ask your GP for a referral, I waited until I knew absolutely everything that could be done had been done from a gynae point of view, now I'm ready to move onto the next stage.

    Pressing on the right hand side of the pubic bone does cause pain but for me it isn't coming from the actual bone, it's in the tissue above it if that makes sense x

  • Hi Eggcustard, when I applied (have adhesions) I copied the consultants letters to the GP and put them in as evidence then filled in the form as to how it affects my life. I believe you can ask your GP to look through your medical file and ask to copy things from there in case you need to as well. Hope that helps. So you could put in the letter about the nerve pain and then outline yourself how it affects you in the form. So then you'd have the 'evidence' you have that iyswim... Yes I get the deep ache and more recently shooting pains. The local gynae at Bath RUH did say to refer me back in future if needed, I know it is adhesions and they won't want to remove them as been told laproscopic not a possibility due to the dense adhesions... I wonder whether to ask Gp for referral to gynae again or to Dr Greenslade...possibly both! Not sure if they'll accomodate that though. Hope you get yours sorted too xx

  • I think I included some consultants letters with the application but to be honest it was that long ago now I can't remember!! Sure I must've done.

    Its tough to decide what to do next, if I was in your position, and the local gynae had already said they won't/can't do more then maybe ask for a second opinion from a different gynae and also a referral to Dr Greenslade as well. Is worth asking the GP to see what he thinks x

  • Thanks I'll do that. All the best with your treatment x

  • Yes mr Greenslade, and ask about Botox injection into pelvic area. It just works! Sheila

  • Thanks Sheila. Do you just need one of those or repeated ones? Thanks again x

  • Also, out of interest, do any of you get pubic bone pain which worsens when you press the bone? many thanks xx

  • Yes got the pubic bone pain. Not sure if it has gone because of the operation or the excellent pain relief from the Botox injection. Too early to tell . They last 3 to 6 months. Sheila

  • I would see Dr G first. I attended a "pain management information session" at UCLH and met a couple of ladies who had had repeated pudendal blocks, in one case 8 and then been told there was nothing more they could do. They had their blocks done under sedation and were not helped by the "brusque manner" of the consultant. They are now in more pain.

    I also had a pudendal and cluneal entrapment diagnosis from Dr G and the Nantes team, but the pain consultant did not agree and said my pain was due to a "slightly" tight ob internus muscle. I did not feel confident that she seemed to dismiss the nerve blocks as a diagnosis.

    She has me down for a lidocaine injection into puborectalis and ob internus, followed by pain manangement. I have delayed the appt as I am not feeling confident of the approach......

  • I heard you can have cryoablation of the genito-femoral and ilioinguinal nerves or pulsed radio frequency ablation....

    I got better after 8 months on medication, I can do (almost) anything now

  • Hi,thanks for the reply, I have heard of radio frequency ablation but not cyroablation, do you mind me asking which medication please? Thanks

  • first of all, I'm only 26 and I had the pain from an infection so I think this is why the meds worked with me...lyrica and amitriptyline..although I found the amitriptyline ot be the life saver, not lyrica....

    cryoablation is something I read about on the pudendalhope forums....

  • Thanks for that, I tried lyrica and it didnt agree with me at all, I am going to try to increase the amitriptyline next, so wish me luck, I'm glad you have found something that works for you and thanks for the input xx

  • 5 days post op from Bristol pudendal nerve release. They are excellent. I had mixed pain. Doing really well. Phone Catherine , dr greenslades sec. She will talk to them for you and advise if a visit would help. I was out shopping less than 12hrs post op. Lots I can tell you. Sheila

  • Thanks, can you have a referral there with the NHS? x

  • Hi Just wondering as Frenchay is now closed, does Dr Greenslade still do NHS referrals and if so where is he now based? Many thanks xx

  • I'm not sure if Dr G has finally left Frenchay but if so he will have moved to the new Southmead NHS hospital as both Southmead and Frenchay came under the North Bristol NHS Trust. Here is a link that may help:

    nbt.nhs.uk/our-services/a-z...

    It shows his NHS secretary's telephone number.

  • Thanks Katie. I just noticed we have both had the same condition, intussusception. Apparently this is very uncommon. I've never met anyone else who had it. I had to have a sigmoid colectomy for it. Hope you are feeling better now. Not nice is it? Sarah x

  • Lots of really good info on this thread, thanks to everyone who has replied xx Dr Greenslade here I come, now just need to find the money from somewhere !!!

  • Yes very useful! I just wanted to ask does anyone else get the pain radiating from the pelvis into the hip and down the leg? Or is that just me?! x

  • Yes I did and thought it was just sciatica and arthritis. Now all gone since pudendal release and I am walking more upright. Sheila

  • Thanks for your reply and the info x

  • I had this symptoms and used a lot of ibuprofen gel and sometimes EMLA cream..if you get a smart doctor, they can give you lidocaine patches but they are very expensive

  • Thanks for your help. I also find amitryptiline helpful, and tramadol x

  • Hi again, that's exactly what I have, from what I can gather all of the pelvic nerves run behind where the ovaries are and then down the leg, because I had problems in that area the nerves are now damaged, I think!! Having spent a lot of time on the forums I have come across a few people with the same areas of pain, scarring can occur over the nerves as well. Whenever I talk about it to a new consultant they say "oh sciatic nerve" and I say no, it's down the front not the back of my leg so I think having it at the front is a bit less common that at the back, for me it's important to find out which nerves etc but for them it's all nerve pain and all treated in the same way regardless of which nerve it is, frustrating xx

  • Hi yes sounds very similar, in a way it is reassuring as I haven't been able to get much out of my GP about it. Mine is also down the front of the leg and into the hip mainly. Because I also have groin pain and around where my (c section type) scar the GP examined me and thinks I have a small hernia in that area. You know how short their appointments are now, so think she feels the pain is associated with that. I have got a letter from gynae mentioning about adhesions in the rectal and pelvic area and how they could remove them but they'd probably reform. So, I'm not any closer to a referral of any sort either back to gynae or to Mr Greenslade. Going to give it a few weeks trying with the pain med (naproxen) she has given me and if no better go back. It's tricky isn't it as sometimes there can be more than one thing going on. As me previous operations and problems have been bowel related they tend to mention that more or think it is all bowel related, even though it's all in the same area. Hope you have more luck in a referral. I have a health policy thing from Benenden Health and might try asking them if they could help. Problem is they step in if the NHS wait is over 4 weeks, and I haven't got to that stage yet. xx

  • PS If you have any good recommendations for pain meds I'd love to hear of them xx

  • PS Eggcustard could you not get a NHS referral? You could always change GP if yours is not helpful x

  • 6 days post op at Bristol. Ask for a joint appointment with mr Greenslade who is a consultant anaesthetist and pain management expert so he certainly is qualified to know where the nerves run and also with mr Dixon the surgeon. Together it is £309 and the best advice you can get. I am 50% better after 6 days of pudendal release. Sheila

  • So glad to hear that, I'm glad its been a success for you xx

  • How are you now....I am having the op in 12 days time

You may also like...