My story from the bottom of the earth, literally
Posted: Sat Aug 27, 2011 11:59 am
Been staring at my keyboard for 5 mins wondering how to start.
Then I thought, in 5 more mins I wont be able to sit here any longer.
Which just bought me to realise I need to make something of a post here.
I joined this forum last week, and since then I have spoken on the phone to two wonderful ladies who have listened, offered experience, advice and most importantly given genuine support that I just haven't had in such a long time.
I am scared, because what they have acknowledged is that my symptoms appear to be consistent with Pudendal issues. Which I had never heard of before.
Scared why? because I have had other diagnoses offered over the years which I have clung to hoping that finally I can get treatment, relief and be able to tell friends and family that "THIS" is what is wrong with me, and why I have been unable to live my life even 5% as fully as I used to. But they come to nothing.. with a side dish of "we'll its likely that nobody will be able to find out whats wrong with you, so you had just better get used to it, and live your life accordingly".
I am not prepared to accept that.
I still hesitate to even go down this pudendal path of inquest, because I don't want to gamble with my last fibre of hope I have left, to have it come to nothing as well.
So thats my fears... I'm exhausted, broken and have lost pretty much everything I have loved doing in my life.
I'm a 42yr old female with 3 adult children.
2 1/2 years ago I had a small surfing accident, jumped off my board to shallower than I thought water and jarred heavily down my right side. Had 2 very sore days, then seemed to get better, but after another few weeks weird pains in weird places started creeping in, especially pain after sitting for any length of time. This built up over 4 months, sex became painful until one early morning I went to ED with chronic pain.. I was told to go home and have a good pooh.
My doctor suggested I might have endometriosis, so went on waiting list (have no health insurance) and 6 months later had a laporoscopy to investigate. They inserted a Mirena and told me NO endo, but possibly Adenomyosis. Waking from the surgery I was in extreme agony, but was discharged 4 hours after surgery. Two ED visits that week, things got way worse.. wanted the mirena out, but strings were too short.
3 months later got referred to pain clinic, 3 month wait got seen by them, they diagnosed me with 'central sensitisation' and prescribed gabapentin (neurontin). Had to resign from my job. Took it for 3 months in that time I became suicidal, unable to communicate and think. Pleaded to come off it, saying that the lower back and perineal pain wasn't even diminished by taking it. I'd had chronic constipation for a year. Felt like I had a full blown bladder infection all the time.. They refused to let me see another doctor or investigate any other cause. Told me to see a psychologist.
I started to see an oesteopath. I then slipped down a step and jarred myself the same way as the surfing incident. symptoms skyrocketed.. numbness and tingling and chronic pain in my lower legs and feet, cold, weakness.. Doctor after a month sent me for an MRI, suspecting a tumor on my spine. Came back that my spine was healthy, no problems.
Doc referred me to Neurologist, he sent me for MRI Head suspecting Multiple Sclerosis 4 month wait, came back fine. neurologist wouldn't see me again saying if there was a neurological condition they would have seen it in the brain MRI, nothing wrong with me.
Finally after 11 months I got the surgery to remove the Mirena, woke up again in extreme agony, smashed by it for 3 weeks. The mirena coming out 3 months ago now has made no difference in my symptoms, I thought it was causing all the pain, or it was a silicon or hormone sensitivity.
Tried to get referred to a community rehabilitation facility so I could at least find a way to start painting and/or photographing again, I have had no income for 11 months, my partner is struggling to pay the mortgage on his wage, and we can't get any government assistance. The rehab refused to see me saying I had to see more specialists, to find a diagnosis. SO *#@! FRUSTRATING!
I found this forum.. I bawled.. is this it??
Saw my doctor last week, she wasn't interested in the pudendal literature the ladies pointed me to, and has referred me to a Urogynecologist and a bladder continence adviser.. 6 month waiting list to see him.
I live in Dunedin New Zealand, nobody here (according to the forum ladies) knows anything about pudendal.
I don't have the money to fly to Sydney for investigations, we live week to week. i could sell my camera gear, which is my livlihood when i can use it, to pay for a trip, but I can't afford to gamble it on the possibility that I get another door shut in my face.
Anyway thats my story, i can't believe I have sat here squirming for this long, although i am a fast typer. must get a laptop, will make things HEAPS easier.
kia kaha
(maori for stay strong)
Nicola
Then I thought, in 5 more mins I wont be able to sit here any longer.
Which just bought me to realise I need to make something of a post here.
I joined this forum last week, and since then I have spoken on the phone to two wonderful ladies who have listened, offered experience, advice and most importantly given genuine support that I just haven't had in such a long time.
I am scared, because what they have acknowledged is that my symptoms appear to be consistent with Pudendal issues. Which I had never heard of before.
Scared why? because I have had other diagnoses offered over the years which I have clung to hoping that finally I can get treatment, relief and be able to tell friends and family that "THIS" is what is wrong with me, and why I have been unable to live my life even 5% as fully as I used to. But they come to nothing.. with a side dish of "we'll its likely that nobody will be able to find out whats wrong with you, so you had just better get used to it, and live your life accordingly".
I am not prepared to accept that.
I still hesitate to even go down this pudendal path of inquest, because I don't want to gamble with my last fibre of hope I have left, to have it come to nothing as well.
So thats my fears... I'm exhausted, broken and have lost pretty much everything I have loved doing in my life.
I'm a 42yr old female with 3 adult children.
2 1/2 years ago I had a small surfing accident, jumped off my board to shallower than I thought water and jarred heavily down my right side. Had 2 very sore days, then seemed to get better, but after another few weeks weird pains in weird places started creeping in, especially pain after sitting for any length of time. This built up over 4 months, sex became painful until one early morning I went to ED with chronic pain.. I was told to go home and have a good pooh.
My doctor suggested I might have endometriosis, so went on waiting list (have no health insurance) and 6 months later had a laporoscopy to investigate. They inserted a Mirena and told me NO endo, but possibly Adenomyosis. Waking from the surgery I was in extreme agony, but was discharged 4 hours after surgery. Two ED visits that week, things got way worse.. wanted the mirena out, but strings were too short.
3 months later got referred to pain clinic, 3 month wait got seen by them, they diagnosed me with 'central sensitisation' and prescribed gabapentin (neurontin). Had to resign from my job. Took it for 3 months in that time I became suicidal, unable to communicate and think. Pleaded to come off it, saying that the lower back and perineal pain wasn't even diminished by taking it. I'd had chronic constipation for a year. Felt like I had a full blown bladder infection all the time.. They refused to let me see another doctor or investigate any other cause. Told me to see a psychologist.
I started to see an oesteopath. I then slipped down a step and jarred myself the same way as the surfing incident. symptoms skyrocketed.. numbness and tingling and chronic pain in my lower legs and feet, cold, weakness.. Doctor after a month sent me for an MRI, suspecting a tumor on my spine. Came back that my spine was healthy, no problems.
Doc referred me to Neurologist, he sent me for MRI Head suspecting Multiple Sclerosis 4 month wait, came back fine. neurologist wouldn't see me again saying if there was a neurological condition they would have seen it in the brain MRI, nothing wrong with me.
Finally after 11 months I got the surgery to remove the Mirena, woke up again in extreme agony, smashed by it for 3 weeks. The mirena coming out 3 months ago now has made no difference in my symptoms, I thought it was causing all the pain, or it was a silicon or hormone sensitivity.
Tried to get referred to a community rehabilitation facility so I could at least find a way to start painting and/or photographing again, I have had no income for 11 months, my partner is struggling to pay the mortgage on his wage, and we can't get any government assistance. The rehab refused to see me saying I had to see more specialists, to find a diagnosis. SO *#@! FRUSTRATING!
I found this forum.. I bawled.. is this it??
Saw my doctor last week, she wasn't interested in the pudendal literature the ladies pointed me to, and has referred me to a Urogynecologist and a bladder continence adviser.. 6 month waiting list to see him.
I live in Dunedin New Zealand, nobody here (according to the forum ladies) knows anything about pudendal.
I don't have the money to fly to Sydney for investigations, we live week to week. i could sell my camera gear, which is my livlihood when i can use it, to pay for a trip, but I can't afford to gamble it on the possibility that I get another door shut in my face.
Anyway thats my story, i can't believe I have sat here squirming for this long, although i am a fast typer. must get a laptop, will make things HEAPS easier.
kia kaha
(maori for stay strong)
Nicola