My story from the bottom of the earth, literally

[kia kaha]

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

[helenlegs 11]

Hi Nicola,
I'm glad you found us. I know many here will identify with such a lot in your post. It is every expletive I know!
To get things on a better even keel pain and positivity wise, there are still things that may hopefully help you. Lifestyle adaptations like pacing activities and NOT sitting (guess you know that one too well already) trying different medications (cymbalta, pregabalin etc) maybe finding a physio who could help.
You are still at the early stages of finding out about pn and the knowledge and help on this site is immense, which is just as well because it is a rather complex condition to diagnose, even if there was someone medical in your country who was pn aware. Many here have self diagnosed initially.
Even when you are confident it is PN it leads to the question of pn vs pne and where along the path of the nerve any problem may be. I find it all rather interesting (sad but it keeps me occupied, like you I am unemploy/ed/able)
I know that you must feel desperate that there is no one available to help especially when your own doctor doesn't seem to be listening (snap) but doctors have been known to travel so I wouldn't give up totally on that one. That is how I got my diagnosis from Dr Filler and I know that American Dr Hal Martin travelled to Brazil to do surgery on 3 guys.I would look at the list of Doctors on the home page and e mail/contact as many as you can with your symptoms and problems, it's a long shot but just being pro-active always helps (me anyway).
Take care,
Helen.

[Violet M]

Hi Nicola,

If you are as good at photography as you are at writing you must be awesome! Did you take the photo that you are using in your avatar? Stunning!

You've probably read by now that pudendal neuropathy can be triggered by an injury and I'm wondering if your two falls strained your pelvic ligaments and caused some SI joint dysfunction with pelvic misalignment. When this happens there can be an impingement on nerves in the pelvis that could be causing your symptoms. That's exactly what happened to me although my problem occurred slowly over the course of several months of weightlifting causing injury to the ligaments.

Sounds like your docs have their head in the sand. Not sure a continence advisor is what you need because typically they have you do biofeedback and pelvic floor strengthening exercises and that can actually make you worse if you have PN. I wonder if there are any continence physiotherapists who would be interested in learning from Sherin Jarvis (in Australia) how to treat people with PN - or at least how to diagnose it. Surely you are not the only one in your area suffering from PN-type symptoms so maybe it would be worth asking.

Violet

[carolynm]

Nicola,

I'm stuggling right now as well, so at least we are in this together! I've been traveling 3.5 hrs each way twice in 2 weeks now with my 2 and 1 year old in the backseat to see physicians or PT's who are PN aware. Husband doesn't understand or even ask me how I'm doing anymore. It can feel lonely. This site has been a godsend.

Nice to meet you
cari

[kia kaha]

Thank you for your replies.

Helen:
Definitely have gone down the path of pacing, to the point where the only way not to exacerbate symptoms is to just kick back on the sofa all day.
Those meds look scarey! after having the suicidal side effect of the gabapentin, and also having a severe reaction to sleeping tablets, I'm apprehensive about taking such strong meds. At the moment I take tramadol with panadol, which is useless. I react to Amatryptilene and Nortriptylene as well.

Physio: last year was sent to hospital physio who gave me pelvic core strengtheners, which really flared up symptoms.
Just stopped 6 months of private Physio with oesteopath, physio and massage as I was still getting worse. They told me not to come back.

I have also tried:
Chinese Herbs and Acupuncture (3 months)
Crainal Sacral Therapy
Neurolink Therapy
Reiki & Magnified Healing
Meditation, only thing that helps
I will take a look at the docs on the home page: I have been advised to email the Sydney doctor and try for a phone consult.

Violet:

Yes, my avatar, thats one of my photos, surfers at my local beach break at blackhead.
I have a surf blog And galleries of my art and photos. (I took the links out, as this post came up in a google search of me a friend told me)
My heart aches to paint again, and to roam the beaches and rocks and take photos, I love where I live, it is stunning scenery.

Injury.. when I started at the Oesteopath February this year, I was told I had an undiagnosed/untreated sprained Sacro-illiac joint, which they spent 2 months trying to keep in place, its staying there now. So they said it was about 18 months old, which fits with the timing of the first surfing injury.
Main main pain symptom is chronic pain in my lower back area of S2-4, but now even turning my legs outward from pelvis causes electric stabbing pain inside my pelvis by the back joint (sorry dont know names), so its difficult to get out of a car, take longer strides, walk down steps even get up off sofa.

In New Zealand, I think doctors and specialists need a diploma in incompetence to practice.
My doctor now is just new, had 4 visits with her. Previous doctor whom I had for 6 years said she could do nothing, but told me to give up coffee, take up belly dancing and skateboarding.

I think continence adviser will be useless, as the bladder is just a symptom in my books.

I find that if I have a pain event, everything happens together. Lower back gets sore, then bladder tightens till it feels like a steel ball, legs go electric then painful, pelvic floor feels like Im being apple cored, my area around pubic bone goes numb and tingles.
This can be triggered by sitting, the need for a bowel movement, a pee or just lying doing nothing.

Cari:
Wow, you are committed to travel!
I'm gutted that I can't drive far. Last year I missed out on driving the 4 hours to where my daughter lives for her 21st Birthday. I cried for days.
I understand the hubby thing. Now I just don't say whatever symptoms are happening to me. Suffer in silence. I have lost most of my friends over this too. They are all active (surfers too) and if I don't go out I'm not in the social loop. I used to do big weekend surf trips around the South Island with my mates to surf comps, I so miss that. I produced a DVD called '2085ks to the beach' following our trips for a year.

kia kaha all

Nicola

[Violet M]

Nicola, you are very talented. I'm sorry about your friends deserting you. I think most of us can relate to what you are saying because people just don't know how to relate to someone in pain -- they have no clue what we are going through.

The physio treatment for PN is a specialty in itself and unfortunately, many physio's don't understand it and the treatments they give you can make you worse. If something makes you worse, you are smart to discontinue it. Physio, chiro, etc. did not work for me which is why I eventually went on to have surgery.

[helenlegs 11]

Hi Nichola,
I saw this http://www.dermnetnz.org/site-age-speci ... pment.html I know that it doesn't point to anyone in particular for treatmnet in NZ but just to say that at least some one in NZ is aware of PN, although this is a site about dermatology ??? . Sorry I am no more help than that.

[kia kaha]

thanks for the link helenlegs 11

I have sent them an email asking if they have any further info about diagnosis and treatment options in NZ.

I have rung the Sydney clinic and got some information about costs and timeframes etc.

Once I book in its about a 6 week wait for an appointment.
I have to raise the money to fly over there and pay for consult, which might take about 6 months.
In the mean time i have the appointment on 8th October with Prof Don Wilson the urogynecologist. I still have no idea if he deals with Pudendal issues, find out at the consult I guess.

I am working on a letter for sydney with symptom list and history, but its taking a bit of time.
I decided that I would get some pics of the pelvic region insides and indicate areas using photoshop that are issues, a picture is worth a thousand words. Do you think this will be helpful??

[Anne]

Hello Nicola,
did you already have the appointment with that urogyn in Dunedin? I hope that he is able to help you. I live in Germany and there is no treatment possibility for PN, too. But in other countries in europe, which is not very far, but we have to pay the treatments by ourselves.That is so bad!
I have been to NZ 20 years ago, it is such a beautiful country, did much hiking there. I also liked Dunedin very much and the "kiwis" are so friendly people.
I really do hope you will get the right treatment soon and that you can have back your active life with your family and your friends. Kia kaha!
My thoughts are with you,
Anne

[kia kaha]

Thnaks for the lovely message Anne.

I wish you all the best with your treatment.

helenlegs 11

I received a reply from the link you sent me. it said "Hi Nicola
Ask your GP for referral to the appropriate specialist in your region."

not much help.

My doctor has prescribed me Clonidine to go with my tramadol, as I am having a real struggle keeping on top of the pain.

Has anyone taken this?
Does it help?