Health Organization for Pudendal Education

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Hi HOPE,

There is so much I want to say to you, I just have to figure out which things are the most important. So I think I will just try to list them here because it will help me organize it better.

1. The way you are feeling is completely understandable and even expected considering what you are going through. There was a time I had no hope and I had very dark thoughts about the future. There was no joy in life because of PGAD and I did not want to live.
2. Sex was a problem and I was not the same person I used to be. I had to make a conscious choice to do things that made my husband feel good, even if I could not enjoy it myself. If your husband wants to stay together, you can still make him feel good and you can choose to have a good marriage, even if it can't be perfect. Sometimes love is a choice, not a warm fuzzy feeling or something that feels good physically. If you still love your husband and he knows it, my guess is that he would prefer to stay with you and keep your family together. Your kids really need you too -- even if you aren't in perfect health. They know if you love them, even if you can't always do everything you want to do for them.
3. You have many treatment options and it's possible you might be cured or be able to get the symptoms to a point where you can enjoy life again. It would not make sense to end your life now when there are still so many options you can try that might help you to live a decent life. I'm not saying "cure" necessarily, but there is a good chance you can have a good quality of life again. I am very glad that I kept fighting because I have a great life now. My pain is not cured and I have to be careful but my quality of life is excellent.
4. I don't know about finding the "it" that caused your PGAD. I think it might be possible. The advantage of finding the "it" is that you might be able to figure out how to fix it. So personally, I think finding the cause might not be a bad thing. But....sometimes it's a matter of trying different treatments that might eventually lead you to figure out what the "it" is. When I went into PNE surgery, I didn't know for sure that PNE was the cause of my PGAD. I had a pretty good idea that it was, but I didn't know for sure. Please keep your courage up and keep fighting. I know it's tough but I don't think you will be sorry you did.

Hugs,

Violet

Hello Hope

I really feel for what you are going through I was in that same place for a long time. I felt like my life was over and even though I still struggle, I do have a good day every once in awhile. I think you are an incredible woman to care so much about your husband. He is lucky to have a loving woman like yourself who has the concerns you do. I hope things work out in this area for you somehow.

I too lived in fear for these last eight years worried that my girlfriend would leave me due to all my limitations. Are relationship is not very good and there is not much understanding on her behalf at this point but I keep trying and we are still together. I see a psychologist every week to help me fight back the depression and it helps. I don't know if that is an option for you but I highly recommend it but find someone you feel helps you if not keep looking not all psychologist are good.

If you can try to get a second opinion and a third opinion and so on until you have tried everything. I said to my psychologist what happens when I have tried everything. He said then you try it again. That kind of stuck with me that quitting is not an option. I know how hard it is to keep fighting and the crying everyday trying to hold on to any kind of hope, wondering how did I get here. I now allow myself to feel depressed and work through the emotions. Trying to fight them back is pointless but then after a few days I would find the strength and I keep on fighting. I'm doing better than I was and so can you, hang in there ! I wish you the best and my prayer are with you. take care Joe

Thank you, Violet and Joe House for your kind words.

Violet thank you for reassurance that the way I am feeling is expected and normal. When I just had thigh pain and Vulvodynia I did make conscious choices to make my husband feel good. But, with PGAD I can't bring myself to pleasure him and know I will pay the price. My Husband says he wants to stay together, but I know this man... if we do not have sex at least twice a month he will not be able to hang in there with me for the long haul. That doesn't mean he will stop loving me, it just means he will be unhappy due to me. I realize there are treatments that can help me, however, I don't have confidence in my doctors' plan of care for me.

It is not healthy for my kids to see their mother cry all the time and break their hearts by saying I can't do XY&Z all the time. My kids know I love them but I can see my actions affecting their life. My husband is currently short handed at work and has to pick up the slack at work. So there are days he doesn't come home until midnight and works weekends as well.

Joe House thank you for sharing your experience with me. I do have a Psychiatrist and a therapist that aren't as helpful as yours Joe House. They don't understand PGAD or PNE. No matter how many times I try to explain it they make comments like " I would love to want to have orgasms all day" Or "just give in and have a lot of sex with your husband". Even though I tell them sex is painful and it causes PGAD to flare up out of control. I even gave them a copy of the HOPE news letter. I am trying to get other opinions but that is easier said than done.

I am trapped in a dark place and will try to fight as much as I can.

Hope

Well, your husband is an amazing guy to want to stay together and that also says something about you. There are obviously other things he likes about you besides just sex. It sounds to me like you are a great mom. Kids are resilient and as long as they know you love them they will get through this too. Are there any grandparents or aunts and uncles nearby who can take the children part of the time?

Sorry, not meaning to get too graphic here but using hands to make him feel good instead of having regular intercourse is an option but maybe you already tried that and it still flares up the PGAD. You can get your gel ice pack, frozen water balloon to insert vaginally or frozen water bottle -- whatever works best for you, and then use some sex toys on him if it's too hard to use your hands. Sorry, I know it's tough. I've been there. Just brainstorming ideas that might help you guys stay together. The important thing for you to remember is that you have a medical condition and even though you are broken in some ways, you still have a lot to offer. I had to keep reminding myself of that.

That is dreadful what your psychiatrist/therapist said. I remember when my therapist told me that the psychiatrist wondered to her if I was a nymphomaniac. At the time it was sooooo not funny. Please don't let anyone make you feel like a freak or abnormal. You have a medical condition with a damaged nerve and you are a perfectly sane woman with many gifts and talents. You are just struggling with a pain syndrome right now. Notice I said "right now". I believe you have a very good chance of getting better with the right treatments.

Hopeitworks wrote: I don't have confidence in my doctors' plan of care for me.

Are you able to get a second opinion from another PN specialist?

Violet

Hi Violet,
No - my kids are not close to either of our parents our siblings. It is a long story! Thank you for the amazing comment about me being a great mom.
If I fool around with hubby (not intercourse) it causes PGAD to flare because I get turned on. Ice is my best friend!!!!! If we do have intercourse immediately after I have ice between my legs. I use ice throughout the day as needed. Your right I need to remind myself that he loves me and I have a medical condition. I think it is best for me to remember I have more to offer than sex. I know this obstacle effects my entire family and I have to keep telling myself I will get better.

Thank you,
Hope

I think you will get better too. You have a great attitude and you are pro-active -- all important attributes for getting better.

Violet

Thank you Violet!

Hi !
This message is to everyone!!

First, I just signed up yesterday & im so overwhelmed by all of our similarities. I don't know who to write to first!!!

My name is Bug. I have SOOOO MUCH to say !! I too had the same problems of being worried about him!!! I still had the ability to climax. Our issues were I wasn't who I was & couldn't move the way I did. It felt to him more of a staged movie scene & he was deathly afraid to hurt me so he couldn't get an erection. Long story short, My marriage failed & my husband left me for another at the very beginning of getting sick. My ex husband & I have 3 boys together .

What kills me is, my 14 year old has only known me in pain & in bed all day & night.

I SOOO don't want to discourage anyone!! What VIOLET wrote was spot on! I only wish I had known about this site long ago!

So my dear mom moved in with my kiddos & I because I could no longer care for us etc. But ... To make matters worse , within 2 weeks of my mom moving in, she was diagnosed with Brain Cancer stage 4 & died just 6 weeks later!!

All I can say is it's been a long long road! I can't even begin to express all the emotions & trying to stay strong for my boys. But the sad truth is my boys took care of my mom & I with help of hospice.

I wish I could write more about my advice... but I couldnt add anymore to what the others have said. They gave perfect advice. My fear is I'll be alone forever especially because I don't go out or date.

Please read my story and hope to get some feedback & meet others simular to myself.

Hope to hear from someone! Bug

Hi Bug,

I can't even imagine how difficult it must have been to go through all of what you have been through. Life can seem extremely cruel at times but it sounds like you have amazing boys despite all of the difficulties. There's a lot of info on this forum but hopefully you will find some of it valuable in helping you to recover.

Sometimes it's easy to give this advice or that advice but until you have walked in someone else's shoes it's impossible to say what is right for them. Often we just brainstorm ideas around here in hopes that something we suggest might end up being the right solution that helps someone get their life back.

Take care,

Violet