Struggling to get my doctors to take my condition seriously

Hope45

I’m looking for someone who can help me with a situation concerning my condition and not getting anywhere towards a proper diagnosis and treatment plan.

Back in 2016 I had an injury from a bad fall in which I landed down hard on my tailbone / bum. The pain did not go away with rest and my symptoms were sever pain around my underside especially upon sitting. It can be explained as sharp pins and needles type burning sensation with a numb and cold feeling in my genitals and buttocks. Of note was doing heavy weightlifting at this time and induced or aggravated this with deadlifting which had me bedridden for about 3 weeks.

I went to my gp and had a prostate check and bloods and the usual basic stuff. I got referred to a URO and he did some other testing and prescribed me antibiotics and said it sounds like prostatitis. Nothing changed only got worse as I started having incontinace problems due to not feeling like needing to go till it was too late due to numbness.

To cut a long story short, I went through about 10 other doctors and specialists and no one could work out what was going on. I got put on gabapentin for nerve pain and sent to a pelvic floor physio who conducted internal massage therapy and after about 7 sessions concluded I could possibly have pudendal neuralgia. This prompted my gp to order an MRI which came back as no entrapment. After a second MRI the same thing happened with no further action. The last doctor I seen at my old clinic said everything has Been exhausted and I will have to practice mindfulness going forward. No diagnosis was given.

This caused the breakup of my relationship of 12 years and my partner and stepson left me. After a period of years in which my mental health declined to the point of not wanting to live anymore like this as it was now effecting my mobility and needing a walking stick along with incontinace wearing pads and sever pain especially siting, and spending days in bed crying I ended up moving doctors.

The same thing is happening again. Being referred to the wrong specialists when it’s a neurologist I need as clearly stated with a quick Google search. Eventually I got a referral to one but the gp who ordered the referral said the neurologist department have declined as they said they don’t think they can do anything about my pudendal nerve symptoms. They advised another Urologist, like ive already seen around 5-6 and they could not help. It’s a nerve injury problem.

I’m going out of my mind, my life’s ruined and I can’t see a future for myself without proper treatment to help with this. Over the years I’ve bought a doughnut cushion to take the pressure of that area when sitting. I’m now using a walking stick and incontinace pads and have zero relationships, it’s really effecting my mental health.

How do I get through to my gp without being dismissed and not taken seriously? I feel threw on the scrap heap and basically gaslighted medically by the system.

There was a story on Belfast live news only 2 days ago about a young guy who explains exactly what I’m going through and he’s been passed about like a parcel. He said in his story that pudendal neuralgia isn’t a well known condition in men in the uk.

After 8 years of this ivr accepted this is going to be permanent and would just like a proper diagnosis and treatment plan to help manage the condition. I’ve done the stretch’s and on gabapentin. The pain can be debilitating and leaves me bedridden some days, but the symptoms of ice cold genitals, incontinace and erectile dysfunction makes life unbareable at times.

How do I get my gp to stop dismissing my concerns and take this serious it has literally ruined my life ?

KaliB

From what I'm reading, you've only had an MRI of your lumbar spine?

I'm not giving any medical advice, diagnosis etc but it sounds like you need an MRI of your lumbar sacral plexus. Your symptoms could fit an injury in this area and a standard MRI of your lumbar spine wouldn't cover the area that needs to be imaged to assess the possibility of a sacral plexus injury.

GPs can be difficult to deal with. My own GP did absolutely nothing to action abnormal blood results for nearly two years. It was only by chance I noticed they were very out of range and insisted on a referral to a haematologist. Which I'm glad I pushed for, as I've now been diagnosed with blood cancer.

I think you need to clearly write down your symptoms, how often they occur, what triggers them/makes them worse, what helps them. Then make a face to face appointment with your GP and got through the list and how it is having a massive impact on your quality of life. Then go from there based on the response you get

Hope45

hi, I’m really sorry to hear about your blood cancer diagnosis I can’t imagine how that has made you feel. @KaliB when I hear from others these kind of stories it makes me feel terrible to go on discussing my own problems.

The MRI was of my pelvic area and not the spine. It was to check if there was entrapment of my pudendal nerve which came back clear. They repeated the MRI again some months later with the same result.

I read online from other people’s reports that they too have had MRI scans with no entrapment but apparently pudendal neuralgia is a diagnosis through ruling everything else out type thing as there is no test that can determine the exact cause.

I’ve phoned again for another appointment at my GP and will be listing all my symptoms and how my life is effected, but I’ve already been through this with a couple GPS and specialists over these last 8 years. I’m afraid of being dismissed again because they don’t know what to do. They even sent me to pediatric doctor who said “I don’t know why they have sent you to me I’m not trained in that condition and know little about it” it’s a pass the parcel. Frustrated and feel let down, but will keep pushing.

I will mention the lumbar sacral plexus mri also just to leave no stone unturned.

Thank you

SmellyBin

@Hope45 says: 'when I hear from others these kind of stories it makes me feel terrible to go on discussing my own problems.'

Hey, everyone's problem is validated. And it sounds like you've got enough to deal with, so please don't be hard on yourself. Feeling like pass the parcel can do that to you, but you are a fellow human being - one with health problems, but you are not less.

Hang in there!

PS - if you want to fill the time while waiting for what your GP might (or might not) be able to do for you, why not check out Vidyamala Burch? She has chronic pain and written the book Minfulness for Health which have been very helpful to me. No improvement health-wise, but to help with the fishy thoughts and feeling stuck.

Hope45

thanks @SmellyBin will look into that, although when the last doctor said practice mindfulness I told him to wise up. With the symptoms I’m having and the low quality of life it’s next to impossible to find any positive feelings except being alive, which sometimes I think being dead is my only escape. Life doesn’t feel worth living anymore. My family have to do a lot to help me daily and it’s taking its toll on them too as they have there own issues and I’m more or less left behind in life lying in bed a lot and crying missing my family and stepson. I’m so unhappy about my life or existence. It’s like wake up in morning and it’s pure survival mode to get to the next day.

I’m sorry for ranting a bit and don’t want to burden anyone. I just don’t know how to move forward with this.

SmellyBin

Mindfulness is not an excuse for the world to turn their back on us, to walk away from their responsibility.

However, it taught me about interconnectedness. Imagine, when looking up at the sky - despite it being dark outside, we are all there.

Yet, not all of us dare to share what you do. About the crying and missing your family and stepson. That is not ranting, definitely not.