I wish physicians would come to this site and read and truly listen to our pleas for help

We are left to our own diagnoses and research for help with our pain and suffering. I have seen so many of these posts illuminating our failed attempts at medical and psychological relief from the world of medicine. If any physicians involved in our efforts in treating this condition's horrible and nightmarish affects on millions of people's lives are reading these, please rally behind a cure or better treatment for those of us who endlessly suffer. Do not offer failed solutions to our problem in hopes of making an extra dollar. Please see us as productive and beneficial parts of society. There are millions of us who suffer from the evil grasp of this medical nightmare. We deserve to not be deemed fakers and drug seekers. We deserve to hear the truth about possible solutions to our problems. Don't tell us you can fix this nightmare by cutting on us when you know the chances of good results are so slim. I don't blame every doctor involved in pelvic pain diagnoses and treatment for their physical failed attempts at fixing our issue. However, I do blame those who blow this condition off as a failure of our mind or psyches. I do blame those doctors who arrogantly want to butcher us in order to satisfy their cravings for the dollar.

23 Replies

  • Well said, man. I couldn't put it better myself.

  • What you've said is sadly so true.  I've written to magazines but as a lone voice they haven't wanted to know.  It would be different if I could get a dozen or so people to write there stories too.  

    Really the best way for help would be a petition but you'd need a lot of signatures, not just for the people suffering but family and friends.  I know how my pain and searching and being let down in trying to get help for over 7 years has affected them.  (I have pudendal nerve entrapment). I've copied and pasted what we'd need in the uk,to start a petition:

    Only British citizens and UK residents can create or sign a petition. You get 5 people to support ... from the government. At 100,000 signatures your petition will be considered for a debate in Parliament.

    I'm sure in the US they must have the same thing.

    I can't remember what it was like to be pain free.  Unfortunately where I live in Greater London, to get a Drs appointment is really difficult.  You have to wait 3 weeks and can never see the same dr, there's no continuity, no support. I'd love to be able to talk and get advice from my GP.  I've looked at other practices in the area and they are all the same. 

    If anyone wants to write to talk about a petition, or even writing as a group to a magazine or breakfast tv show, anything to give publicity,  I'll give my email address:



  • I will be contacting you Paulyne.

  • Pauline,

    I too have written my congressman and received the usual response back. I agree we should all ban together and fight this in bigger numbers. That is the only way to initiate change. I even thought about writing Oprah. I'm still thinking about it. I'll send you an email and maybe this could be the start of getting our voices heard and making change happen. Chronic pain conditions are destroying lives. They should not be allowed to ignore us and sweep us under the rug like we don't exist. I even wrote a clinic ran by a guy who had our condition and wrote a book on it, pleading for help, and never got a response back. It is very expensive clinic in the states. Once again, showing that the medical world is all about profits, not truly helping those who are desperate and in need of serious medical help to even be able to perform daily functions and work.

  • Yes we need to be heard.  I hope you write to Oprah, how about Hillary Clinton, although guess she's a busy girl but with all the people with pelvic pain and their families and friends that adds up to a lot of people.

    Look forward to your email.

  • I sent you an email to submit

  • Your right. We have all experienced being pushed from pillar to post. There seems to be no policy or management plan for doctors to follow for pelvic nerve investigations, diagnosis and treatment options depending on the diagnosis. The only way we could help this to change is writing to your MP, or healthcare governing body with our own stories in the hope that they will realise it would be more cost effective to manage patients well and effectively and to help us be functioning in society again. I for one have become disabled due to the NHS's failure to diagnose me. ( Now five years ) When if there was a policy I could have been diagnosed within six months and a treatment plan put in place.  Now, however, my condition has become worse over the years, so I think I need surgery, but I am still waiting for a neurologist who will go the extra mile for me and order an MR Neurography of the pelvis.

  • I'd like to find out if there are any sufferers in Bromley, Kent (although comes under greater London) so we could do like you say, write to our mp.  I know I could send a lone letter but it would carry more weight with more signatures. I'm thinking of going to see dr greenslade in Bristol privately, as can't believe this slow process to get help for a proper diagnosis and I believe he's the best in the U.K. 

  • Good morning  Paulyne

    As I write I am looking at my wife now five years suffering this intolerable pain reduced to either lying in bed which is a chair with a footstool or a similar chair downstairs and that is her life spending her days looking at the television and ipad or both for pain distraction. I am her carer she can do nothing for herself except go to the loo with extreme difficulty and walk the stairs. She seldom dresses or goes out of the door and that is to the doctors on whom she has given up as they have no answer, PNE is not something they have learnt about neither have the dozens of top grade consultants we have seen, to them pain is a bit of a joke controlled by pills mainly caused by mental problems. I have spent over twenty five thousand pounds on seeking a solution but got nowhere, I would spend ten times that if needed to find a cure, life is very short and time is running out, once you get past working age doctors don't bother as you provide nothing to society that is why I pay but still to no avail, they say nothing, do nothing, then send you their bill, they have no answers, they know they don't but still take your money.

    The last time we went away was to my eldest son's wedding three years ago, my life has also had to change and now only leave my wife for the weekly shop relying on the occasional visit from relatives for social activity, seeing friends is long gone as she cannot deal with social interaction when in pain.

    The constant anxiety over the years has produced a further medical problem of GERD that cannot be resolved and now with the continous bloating food and drink are abhorent. I have to prepare all food very carefully and choose a bland diet, everything has to be diced with no herbs salt or spices, tap water and milk are the only thing she can drink and that with difficulty.

    So, the upshot is that I am with you for any constructive solution, fortunately I have now had my hip operation and am more mobile and my terminal cancer diagnosis is, for the moment, under control with drugs and therefore I am charging about trying to put three years into one to make up for lost time helping my gardener outside and providing much needed attention to the paintwork on the various outbuildings, this keeps me busy when I am not needed to tend to my wife, my hobbies and other interests have had to stop.

    I believe we have exchanged before and as you may remember we are in Kent, not to far from Bromley.

  • I would like to write to my mp and I would like to not just send a letter about my 7 years of pain but think it would help the cause to be able to send an email with attachments like yours too.  I would not of course dream of doing this without your permission.  If you'd be happy for me to do this, could you please copy and paste and email it to me at paulinegower@gmail.com

    I'll hopefully get a few more people to respond, even it they don't live near us, it will help the cause and I'll email him. 

  • I am sorry you have gone through so much with your wife. The suffering of this condition is felt by those at our sides too. You are a very strong person for standing by her in such a scary and worrisome time in her life. I am no longer with my family now and I can definitely tell you how much that kind of support means to a chronic sufferer. I must now face this nightmare alone and I have never been more scared and depressed in my life. I want to keep living for my son, but thoughts of whether living like this is truly living at all cross my mind daily.Every day I think about how things could have been right now if this evil condition didn't sink it's talons in me. I don't know what else to do, but try my best to get someone in a place of higher authority to listen to all of us. I'm only mid way through my life and I honestly feel like I'm already at the tail end of it because of this horrible thing I endure everyday. Life is definitely too short, but for those of us who suffer with chronic pain, sometimes life feels like it is not short enough. I tried to take my life because it was so unbearable at one point. After I started to improve, I felt some hope, and then one thing set it off again, and now I'm back to feeling lost and hopeless. This is horrendous pain and dysfunction that no one should have to endure.

  • My relationship broke down due to this condition as well. My partner of 7 years left me. She just couldn't handle the stress of this condition I think. It just seems to go on and on.....

  • Pafen,

    I fell your loss. It makes it that much harder to deal with the horrific parts of this condition when your loved ones doubt or abandon you. This morning i awoke with my condition feeling worse and now must face a long day at work with a boss who thinks I'm lying or faking it, or can just ignore the pain. He has been particularly harder on me lately, which just increases my stress and makes things worse again.

  • Berrytog, there are some closed facebook groups that might help your wife to not feel so alone with this awful condition, if you'd like to email me for them, or if you'd prefer I can give them to you on this forum.   I find laying down the most comfortable position or with my feet up leaning back.  I also find that I need to push myself to get out and about, (although I feel like I've been stuffed with two apples front and back) but going out means I try to focus on other things, other than the pain.   I wonder if your wife uses Twitter, as there's a group for pudendal nerve pain on there which might also help her.  I spend a lot of time checking out what support there is.

    Your wife is very lucky, you sound a lovely caring husband but I'm sure she must realise. I'm very lucky too, my husband understands and is supportive but I know it can't be easy for him.  He had prostate cancer 10 years ago and had taken early retirement at 52 and we were going to do so many things.  He had an operation and has regular checks ups and thankfully is well.  Then I had my operation which put an end to what we wanted to do with our early retirement.  I am determined to get awareness of this.  

  • I agree with paulyne:  to get someone to listen to us it would primarily mean we would have to get the pudendal nerve specialists ie pain management, PNE surgeons etc  to write on our behalf to ask NHS England, for a policy and procedure for the diagnosis and treatment of pelvic nerve complaints as a matter of urgency.  ( Also the equivalent  in USA or any other EU country ). it is the failure of NHS England for either not recognising that this condition requires its' own policy, or for not being aware of the fact how patients are badly managed, misdiagnosed and see many specialists and GP's  who either don't know or don't want to know about pelvic nerve disorders. This includes hospital clinicians in hospital consultant clinics and GP's  There is also a lack of education throughout the medical profession. This blase attitude is passed down to junior doctors and unfortunately medical students.  it is a drain on the NHS resources and funds to go on like this and a policy and procedure would save the NHS hundreds of thousands if not millions of pounds. It would also reduce the DWP budget relating to E&S, E&S Support Group, Personal Independence Payment ( PIP ) Also would reduce the suffering and hopelessness of people unfortunate to suffer with pelvic nerve pain all because no policy or education for doctors in place.

  • Walking4hopepn

    Check out the above on Twitter 

  • The Pelvic Pain Support Network are a charity that is working towards these goals.  There is a link to donate on the home page and an email contact address.  Judy B works so hard behind the scenes to get pelvic pain recognised and doctors educated. 

  • I am very thankful I found this site and I really appreciate the hard work put in by this charity and others behind our cause. I didn't want to come off as meaning the whole of society and the medical world when I discuss the problems we have in both communities. Unfortunately, all of us have dealt with some very real negativity on the part of those around us when it relates to our condition. It just creates this whirlwind of doubt, uncertainty, and depression about our situations.

  • A little Oprah dust might help too. Lol. Hey, when Oprah makes something happen, it usually happens. :-)

  • Please could we have updates on what has and what is being proposed by Judy B. as we could also contribute ideas and suggestions such as the on-line petition to either NHS England or Parliament.

  • Thank you suebooo.  Also, I certainly don't want to undermine the wonderful work that Judy and people like yourselves do on this forum.  I'd have been lost without it.  I really appreciate this forum.

  • Me too!  It was so wonderful to find people who understood this pain and how it affects life in general.  I have made some lovely friends on here, people who have followed the same journey.  Unless you have experienced it you can't understand it. 

  • too true..... All our stories should add up to something..... Hopefully sufferers in the future will reap the rewards from all our fights.... That is the only benefit i can realistically wish for from all the struggle i have persevered through....

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