In Need of Guidance

[heidiloft]

Hi everyone,I am so grateful to have found this forum. After a year of unending pain, visits to the emerge and doctors shaking their heads,my dear husband made a bed in the back of our SUV and we drove from our home in Merrickville,Ontario to New Hampshire to see Dr. MARK Conway who confirmed that I was suffering from pudendalneuralgia. Treatment options in Canada are minimal.I am now trying to get in and have some nerve blocks done but the wait can be quite long.I am taking Lyrica, norritryptiline and have a fentanyl patch to control the pain and allow me to function.The medications are helping with the pain but sadly cause severe constipation. I just ordered a special seat for the car which will hopefully allow me to sit and drive which is a must as we live in the country.I am desperate to get well but fear that my lovely ,full life with my daughters and husband will never be the same.Since the more conservative treatments are not readily available here I am wondering if surgery should be a serious consideration.I would be so grateful for any wisdom and guidance from those who have been on the journey for some time now.Your insight would be most appreciated.Blessings,Lise.

[chrissy]

Hello I am new to this too but ive been living with the pain for around 16 months now and just got my diagnosis so im afraid im not much help but didnt want to read and run. Maybe we can help each other?
Im in the uk and I have a referral to a pain clinic where I am going to get injections to stop the pain. Is there anything like this where you are?
I take duloxetine 60mg which helps a lot with some of my symptoms but not the coccyx pain unfortunately I am going to my gp tomorrow to try to get some more meds lol.
I have had accupuncture which helped a little bit. I wouldnt say it would be worth travelling a long way for though.
I would have the surgery straight away if I knew it would be successful as I too have kids and am (was) a very active person.
I think the main thing is to try to stsy positive and believe there is a light at the end of the tunnel xx

[sgrandy]

I don't know normally post here anymore but I saw that you are from Merrickville! I live in Ottawa but grew up in Oxford Mills. Anyway, have you had an assessment with a physical therapist to assess your pelvic floor? There is a fantastic lady named Caroline Allen in Ottawa who is PN aware and who treated me for pelvic floor dysfunction. She is amazing. Also, have you been referred to the Wasser Pain Clinic to see Dr. Allan Gordon? He is one of the few PN aware doctors in Canada (Toronto). He confirmed my diagnosis of pelvic floor issues and is equipped to treat with nerve blocks etc. I haven't needed to see him again but it it would be worth a referral if you haven't been referred already. I'm sorry you're going through this...I understand how distressing it is especially when you live in a location that doesn't have a lot available to treat more complicated conditions. You can email me at stephanie.grandy@gmail.com if you have any questions about what I have written here. As I say, I rarely check in here anymore and just happened to on a whim so email is a better way to reach me if you want to.

[chrissy]

Hi Lise I got your private message but your message on here didnt seem to appear?! Try and post it again x

[heidiloft]

Hi Chrissy I am not quite sure what message you received so I will post again.Apologies if this is a repeat.I was so excited when you said you lived in the U.K as my husband and I lived in North Yorkshire in the late eighties.We lived near Richmond and used to go exploring in the dales and always enjoyed going out for tea ...very fond memories indeed .Nothing quite like the English countryside....so lovely.I am so sorry to hear that you too are suffering with pudendalneuralgia. It has totally changed my life.I went from being an active busy wife and mom to being bedridden and confined to our bedroom day after day.It is really only because of my paiin patch that I am at least able to function although I tire rather quickly.My poor husband has really been doing everything around the house as well as a very denanding job.It sounds like you will be going for what we call "nerve blocks" here at home.I am waiting to get in to have a series of them done but the wait times here at home are very long.I too would have the surgery if I was assured it would be successful..It is not available in Canada so I would have to go to the states.It would be very costly.Does the N H S cover yours?What was the name of the medication you found helpful...I too have an appt with my family doctor coming up so I will mention it to her.You are right Chrissy that we must hang on to our faith and hope as we are on this very arduous journey.Coming to a place of acceptance is hard isn't it.Some days I wake up feeling stronger than others.My youngest daughter has special needs and wonders as we all do when the old mommy who was well is coming back.I am going to try some physical therapy which is supposed to help the pelvic floor.I hope it will be fruitful..I also have coccyx pain...a very tender spot.Have not really found anything that helps that either.Will you keep me posted on how you are after your injections for the pain?I will pray that it provides some relief.Blessings from across the pond,Lisexo

[sgrandy]

Did you see my message above? OHIP has been known to cover the cost of the surgery. Several Canadians have had it paid for. That is another reason why Dr. Gordon is a good person to see as he has helped people fill out the forms to have it covered and he is the only "expert" in Canada. It is good to try some conservative treatment before you go into surgery. Surgery is not a quick fix or a fix at all in some cases which is why starting conservatively is best. There are definitely people who can help in this Province. I hope you are able to get the help you need to return to your former life.

[chrissy]

Yorkshire! Not too far from me just other side of the pennines in Merseyside.
Im on Duloxetine 60mg it started to make a difference to the vaginal discomfort as soon as I went on to 60mg and then another jump forward after six months. The side effects are not great but thst only lasts a week or so.
I went to my gp today and she also put me on Gabapentin for the coccyx pain I will let you know how that goes.
She also referred me straight to the specialist which will be covered by nhs yeah but a loooonnng wait!
Let me know what you decide to do xx