Health Organization for Pudendal Education

I havent posted in a while and have in the meantime tried more doctors, medications, and PT. I decided that after everything, the drug that helped the most was Hydrocodone ( Vicodin). I also take Valium in the evening after I have taken my max on the Vicodin and need some relaxing of the pelvic floor muscles. In addition, intake Ambien to sleep, usually 3/4 to one pill. As a narcotic. the Vicodin needs to be increased all the time and since it is combined with acetaminophen, one has to be careful for your liver. So I found a compounding pharmacist who makes up 30 mg tablets of plainVicodin for me. I am now up to 7 -30mg a day of the compounded and 8 a day of the 10 mg Vicodin/' acetaminophen, almost 300 mg per day! This is a huge amount. It is also not helping anymore with the pain unless I go over the amount prescribed. I saw a pain specialist who mentioned pain receptors, but didn't explain them. He just said at thisnpoint the Vicodin may be increasing the pain and suggested I see an addiction specialist or slowly taper off myself. What has happened is that I have become a very depressed person, I cry all the time, and have alienated my family. They just don't understand and don't want tomdealwith me anymore. So, in addition to the pain and the depression that causes, I have no support and my loving family has turned away from me. They are just tired of it all, and Infeel very alone. I even have a new granddaughter who I hardly see, my daughter has pulled away from me. My question is: has anyone here who has taken Vicodin experienced severe crying spells or depression tomthenpoint of despair? Are the two connected, andnisnthere any hope that if I reduce the dosage I will become more like mynold self again? Thanks anyone for your input.

So sorry your having a bad time!
We talk a lot about our various medications, all in hope our shared experiences, help one another! I'm sorry I don't have experiance of your medication? I'm a lyrica, amitriptalene , ad tramadol girl myself!
What we don't talk to much about is our relationships with family an partners? Some times we get the impression that every thing is"little house on the prairie"?? But sadly in a lot of cases it isn't! Pne is almost impossible to explain! Even to people who have had health issues themselves! Our problem isn't visible, apart when it hits hard and who feel so tiered and retched it is obvious !
When we have our hopes and plans shattered by this complaint, it isn't just us that grieves for the life we had before! It's our partners( my relationship has suffered! Like Lot of men, they only show there affection threw sex!( no he's not a monster, he's a regular bloke, no he won't leave me, we have just lost the closeness .
When we read the letters on this site( and trust me, it has kept my sanity) don't feel that every one on here is married or living with a saint! There are a lot of us I know who make our family's despair over what they can do to help us! I'm sure they love you deeply! We have just got to accept that unless you can experience this pain! It is impossible to walk in our shoes!
Keep experimenting with yours meds! There is Always something that as near as possible fits the bill!
Anne smith

Although I do not have actual experience it does sound like the depression is just a withdrawal symptom and as suggested maybe you should find someone who can help with this a different pain specialist or addict ( you certainly are not an addict in the sense of illegal just a person dealing with a horribly painful illnness). I hope you can find your way off this drug, something else to help you and get your family back. My heart goes out to you during this struggle. Janet

Hi Angie,

You might want to read Cora's previous post at this link: http://www.pudendalhope.info/forum/view ... =25&t=1656

She was having major problems with her opioid medications and switched to one call buprenorphine that doesn't completely saturate the opioid receptors in your body so you do not develop tolerance to the drug as much as with typical opioids. (It is a partial antagonist/agonist as opposed to being a full agnoist.) I recently spoke with her and the drug is still working very well. It might be something you want to consider.

Take care,

Violet

I am still learning my way round this site and funnily enough was going to try to start a post subject along the lines of PNe and close family - how it has such a knock on effect, but couldn't figure out how to start a new post - then came across this one.
Angie - I am sorry to hear you are so down, I have not taken the drugs you have so can't comment on them however, I manage quite well with homeopathic remedies and some Lyrica but do also get depressed. PNe changed my life so dramatically when I was about to retire and thought we might travel and enjoy things that we couldn't afford/have time to do before. I openly admit it made me so very angry that a doctor had actually done this to me and thereafter it was such an uphill struggle to get some help and was passed from pillar to post when I soooo didn't need it. I had 12 operations in 3.5 years and had very little support from my husband, two adult kids and in-laws, I was basically on my own and it hurt! I am now 6 years down the line but unfortunately that anger still rears its ugly head and I feel like Angie that I have pushed my husband away and my daughter warned me only last night not to push my son away. I have 3 beautiful healthy granddaughters that I love to bits and feel that they are the only ones who show me any love in return.
The lucid side of me knows how hard it is for people to understand this terrible condition cos we look ok on the outside and try to function and not complain too much but I still feel very isolated and not loved and supported in a way that I feel would help the situation so very much.
I did have some counselling that my GP set up for me for anger management but it didn't do any good, sometimes I feel that I don't know which way to turn. I am fortunate that I have some very good close friends but feel that are fed up with hearing all about it so I don't say anything now and that makes one feel more isolated and withdraw.
I can't take meds - the majority disagree with me and I tried anti-depressants and was very ill.
Wishing you all well

Jane

I'm sorry for what you're going through. I can relate all to well. After I had a vestibulectomy in 2009 that caused more damage then good, which is what I believe caused my PN, I developed Major Depression, whether it was related to the pain meds I was on or because of the chronic pain, nothing helping, etc. the bottom line is I developed Major Depression which turned into severe, severe depression, self harm and suicidal thoughts and ideation. Meds can cause depression but so can chronic pain. My suggestion to you is to get help for your depressive symptoms sooner than later, as the longer you are depressed without treatment the harder it is to get it under control. Also depression, which can cause more stress and anxiety, can affect your pain so it can make you feel even worse.
Please get help!
If I can be of any help let me know,

Shana

Thank you all for your reaching out to me with your kind words. I'm truly sorry for all your pain and what younhave been through. Not ony do we have to deal with the pain of our condition, we have to struggled with the effects of the drugs, the hopelessness that seeps in slowly as we go from doctor to doctor( some of who actually do more hard than good ) and then we get shut out by our families, the people we expect to understand most of all. When do your loved ones stop loving you enough to keep supporting you? At first I had a lotmof support and sympathy but now I get comments like "mom, I just csnt deal with you anymore" or"I'm done with this" or " mom, you always want to make it about you" wheni start crying. I don't want to be like this, crying and depressed. I am now in my 60s and was also looking forward to a life where I could travel and enjoy my grandchildren. Thankyou Violet for pointing me towards Cora's story- I have also been considering Suboxone.Cora has a medical background and understands much of what I don't understand about how these drugs work. I find it confusing, especial Suboxone. It has helped my sister in law get off her high doses of opiates and I can see the difference in her after years where she was confined to bed with back pain. I still don't understand the whole process of opioid receptors and " brain pain" but I may travel to Michigan where she lives and see her doctor. The high dose of compounded Vicodin I'm on isn't helping unless I go over my dosage and then it helps for a few hours. Each time i increase it, I feel better, and I do this in order to get through a family party aso I csn be pleasant company. But as all of you know, who are on narcotics, they always need to be upped to stayed effective. And I don't want to stay on this never ending cycle. I also see how it has changed me to a different person, seeing life through the eyes of a depressed person. I had seen a good psychotherapist for years since I have had significant trauma in my past which may have contributed to tightening of the pelvic floor as a protection mechanism. But after years of therapy, I couldn't go on. each visit all I did was cry and at some point enough is enough. You hit a wall and don't go anywhere anymore. I had seen other therapists but cant stand the idea of starting over with my story so I'm done for now. I'd rather read a good book or watch a funny movie. But the hardest part of all thisnis losing oneself and losing ones famiy. Inknow they still love me but I have to put on my smiley face and be careful what I say and my tone of voice. Part of me is very angry at them that they csnt support me anymore, the woman who raised them with such love and joy. And im angry at life, that after all the things ive been through earlier, i cant enjoy these later years. But i learned recently that I cant base my happiness on others. I need to work on myself. I believe Cora is right when she says we need to be careful about how we live our lives, work on inner peace and avoid the negative aspects of society, keeping a quiet mind. Its so true that unless you have been there yourself, you just don't understand. The simple things we used to take for granted, to go to a movie or to go out for dinner and sit in a nice restaurwnt. Or to be able to play with a toddler...who can understand except all of us? I do wish you all the best, that you find a way to lower yournpain and find some happiness. Thank you for writing - I would love to hear back from you and you can always turn to me if you need support.

Angie, you might also be interested in reading lottanerve's most recent posts regarding her pain pump. Sounds like she is having amazing success with it so far.

Violet

Hi everyone. I've posted on this before and am coming to a new crossroads, which is rather scary. I have had Pudendal pain for over 5 years now, been through the gamut of doctors. PT, drugs, etc. Nothing helps. The only drugs which gave me relief were Valium and Vicodin.When this pain first started 10 mg of Valium would make it disappear completely but that soon ended, as I needed more and more of these drugs. But I am now on about 300 mg of Vicdin a day, and its really not helping the pain, in fact it is causing deep depssion, crying, I have changed so much as a person mynown family doesn't want to deal with me. . I recently saw two doctors working together, an anesthiologist, who wants to try spinal blocks, who admitted his success rate of 50/50 at best. and then i saw his associate, a pharmacologist, who told me the Vicodin was dangerously high. For instance, it would make things difficult for an anesthiologist who might need to help with an emergency situation. They both told me I need to see an addiction specialist. I believe the idea is to wean me off or down on the Vicodin using Suboxone. My siter in law had great success with the Suboxone and had come down from huge doses of opiates to just 30 mg of Vicodin a day with the Suboxone. But I've read some scary things about Suboxone and it's side effects. I know everyone is different, but I am scared of going through more anxiety, crying and depression. I would so appreciate any feedback here on Suboxone. Is there anyone out there who can share her/ his experience with me? Side effects, effectiveness etc?

Going through the crazy world of PN or PNE is so overwhelming. Doctors casually suggest and try things, and often show they don't care. We need each other to help. Thanks so much

Cora has a thread on this topic that you might find interesting:

http://www.pudendalhope.info/forum/view ... t=suboxone