New from Melbourne - need urgent help!!!!

[lynette]

Thanks, got your details,
chat soon.

[catherine a]

HI Lynete,

I too have traveled from Perth to seek treatment with Prof. Vancaillie. He's the director of the Women's Health & Research Institure of Australia. His team are leading the way with chronic pelvic pain and endometriosis. You can apply to your state health dept. for travel costs and accommodation to go to the PN clinic in Sydney. Like you, many of us from other states couldn't find an answer to our problem and we got financial assistance to travel to Sydney for treatment. The best advice I can offer is to ask for a referral to see Prof. Vancaillie and get in touch with your health dept.

These depts. are quite often difficult to deal with but don't take no for an answer. It's called interstate patient transfer and the Royal Hosp. for Women in Randwick is the first and only clinic specialising in chronic pelvic pain. Like most of us, you've been passed from doctor to doctor for many years now and this condtion is a very difficult one to treat and most doctors won't admit that they don't know much about PN. People with PN can have some of the symptoms like you do or they can have all of the symptoms. For me, I had all of the symptoms. Take your meds. as prescribed but the best chance you have is to make an appointment with Prof. Vancaillie. There is a waiting list if you see him on Medicare but if you have private health insurance you might be able to see him at the Prince of Wales hospital.

Have a look here http://www.whria.com.au/page.aspx?docid=170 the phone number is at the top of the page if you want to call for information. It took me a very long time to get on top of this pain but I'm doing much better thanks to the few doctors we have here in Australia who are putting the effort into this.

Catherine

[lynette]

Hi Catherine,
thanks for the info, i don't have private health cover and im on a disability pension so i may qualify for travel assistance. Its very frustrating as you know, i don't have endo anymore as i had it removed 10yrs ago when i had my hysto, but i do have extensive adhesions, but i still think that after my urethral dilutation, pain and other symptoms became worse. When i asked my pain specialist if nerves could have been damaged, he say's no, of course he wouldn't say maybe as specialists don't go against other specialist. What medication are you taking Catherine? have you had endep in the past? This is my first week on my new dose of 20mg, i had a couple of good day's, but i can feel bladder and pelvic pain starting again. How long does it take when going up in dosage to be effective?
Glad to hear that you are feeling better and i hope it continues to improve.
thanks again,
lynette

[catherine a]

I did take Endep initially and it didn't ever help my pain. It did however help me cope better in as much as it made me calm down. After 3 years of pain medicine and anti-depressants it was decided that no amount of medication was going to help as my pudendal nerve was so severely trapped. As for your specialist telling you that nerves cannot be damaged, we have all been given this same answer Lynette. It's only because of this website that the Womens Health Research Institute is now looking "outside the square" so to speak and doing something about it. Most doctors don't know anything about the Pudendal nerve being irritated, damaged or trapped. That's the reason people with this type of pain are being given such a run around.

I was at a Pelvic Pain conference recently in Sydney and was pleased to see the auditorium full to capacity. All thanks to Prof. Vancaillie and his team. They are truly the first and only clinic in Australia to really understand our problem. Would be good advice for you to make enquiries and go see Prof. V. He will see you under the Medicare scheme, but you need to talk to them by phone or email. There are 3 of us here in Perth who ended up going to Sydney as we absolutely wasted time, money and effort trying to find an answer to our problem. Each and every doctor we saw couldn't help.

Endep will usually take a few months to be effective. Stick with it. Some people find this type of medication really helps but you'll only know if you stick with it. I found it made me very drowsy and I had to get back to work. I find having a job for a few hours helps to distract from pain. I take Lyrica 25mg per day but at one time I was taking 300mg per day. I've managed to get that down slowly over the past 4 years. No medication ever helped my pain. Only Botox and PNE surgery helped me in the end. It's taken me 7 years to get on top of all this. Hang in there Lynette, help is available but my advice is to focus on the few doctors we have in Australia who treat this condition. Ask the clinic in Sydney if they now have any specialists in Melbourne who are working with them re: Chronic Pelvic Pain.

[lynette]

Thanks Catherine,
im now just a week on my new dose of 20mg endep, i think its starting to take the edge off, hope i don't end up putting on too much weight as that will only cause more pressure on my pelvis. Some people i have spoken to say that they never gained weight at low levels of endep, others say they did.

I have my cancer check up and scan soon, so between my pelvic pain and going for tests every 3mths regarding my cancer i feel like i should donate my body to science lol

thanks again,
lynette

[shelleys bling]

Wondering if some one can help me.
Hi I have been under Urologist Dr Hannah Krouse in Brisbane for over two years now. I have moved away to the country 12 hours away. Hannah put me on Endep for Cronic cystitis. I had already had 2 bladder distensions , this did not help. After a tripple prolapes and bladder sling operation she put me on Endep, After some playing around with dossages I have been pain free apart from the occasional day. My life feels normal again. I have been taking 1- 50mg tablet at night. I however find that in this time I have put on 14kgs. no amount of excercise or lack of food helps. I am a small eatter anyway, always been active and a size 10 -60kgs, I now find I'm struggling to fit into size 12/14s and weigh 74kgs and my feet swell up. I went on line to see what the side effects for endep are and found that excessive weight gain that cant be controlled is one, also fluid, another symptom. Endep does work well for me. I have tried decressing it and even going off it altogether as advised by my Doctor, but found that The symptoms came straight back. I need to go on something else but dont know what. Something that wont make me put weight on. Ps I have been going to the gym for the past 1 1/2 years.
Some adive from others with this problem would be good.
I do have many allergies.

[calluna]

Hi shelleys bling, and welcome to the forum!

There seem to be quite a few of us here struggling with weight gain as a side effect of various drugs. (Including me!)

I have just looked up Endep, this is amitriptyline, right? And yes you are right, amitriptyline can cause weight gain. Luckily there is an alternative, this is nortriptyline. I am sorry, I don't know what the trade name is in Australia. Nortriptyline works much the same as amitriptyline, but it has much less side effects. (They always try amitriptyline first as it is cheaper.)

If you still have problems with nortriptyline, then there are other drugs to try after that - gabapentin probably next on the list, then pregabalin (Lyrica) - but nortriptyline is definitely the one that you should try now, as you have had such good pain relief with amitriptyline and these two drugs work in the same way.

To help with weight control, it is a good idea to watch how much carbs you are having. Restricting starchy foods can really help.

Please let us know how you get on!


By the way, if you would like to post in the Welcome section, I am sure that you'll get some more responses!

[lynette]

Hi shelleys bling and welcome.

I have just gone up from 15mg to 20mg endep a couple of weeks ago and am just starting to feel some pain relief although i still have the dry mouth and constipation is always a problem with this drug for me, but i hope that will ease in another few weeks. I'm also concerned about weight gain and i have put on a few kg's during the 18mths, but i also cant exercise due to pelvic pain which is from extensive pelvic adhesions and i also suspect that nerves were damaged after i had a urethral dilutation for frequency and bladder fullness pain with no infection.
My symptoms became worse within days of this and then over the past 3yrs have progressed to vaginal pain, back pain, bladder and urethral pain.

I agree with calluna, i will be trying nortriptyline if my weight continues, but on the info i read weight gain was still possible, but i don't think as much as endep. It does seem to have effect of keeping some people awake, where endep is more sedating. I have also had tests for I.C, urodynamics, c.t. and ultrasounds seen 2 uros, tried pelvic floor therapy, but didn't have any tight spots and made pain worse for weeks after treatment. I sometimes think its worse when you don't know for sure whats causing the pain, and it seem there are alot of specialists guessing. Did you find you had weight gain when you were under 50mg, or only once you reached that level?

I do hope that you can find some pain relief, i find walking, standing or sitting worse for me, laying down with a heat pack helps, but you can only do that for so long. 20mins is about all i can walk when pain is at its peak and today is one of those day's. I'm also dealing with cancer, so that doesn't help even though im a positive person and have had treatment, there is always the 3mth checkups and scans which is always at the back of your mind.

Lets know if you decide to try the nortript and how it works for you,
take care,
lynette

[mystical2100]

Hey same boat here.... 5 years or longer cronic pelvic pain seen doctors galore and they dis charge me drives me nuts had one GP giving me Valium which i found only thing took anixerty down with this condition. been thru the ringer i don't think could of gotten a problem that effected me as much as this one i don't work i barely live. always grumpy frustrated, depressed. seen all kinds doctors all kinds of test nerve pundal nerve tests,camera into bladder,up other end resting tone kind of tests... and yeah No Diagnosis so not only i gotta live with this i gotta be made out 2 be a faker in society i gather lol!!! yeah right i moved from Melbourne too NSW and saw new GP she has prescribed Endep 25mg problem is i give up cus no matter what i do it hurts. over the course i've been given that many drugs from GP's even stuff for biopolar which i clearly never got diagnosed i just wanna know how do people have faith in a system that continues 2 fail you.. all i seem 2 do is sit around wait wait wait wait wait as my life ticks over i'm only 25 years old and had this since about 20 or younger honest 2 truth had a gut full this stuff better work cus i'm over it all lol

[helenlegs 11]

Hi mystical2100,
Welcome. As you must have gathered from this thread, and your own experiences, pelvic nerve pain is an especially difficult problem to diagnose. Have you looked at the home pages here? they are packed with good info and may point you in a better direction and hopefully get you sorted. What symptoms do you have?
Hope that we can help.
Take care,
Helen