Health Organization for Pudendal Education

OK, so if I do have PN, what do I have to look forward to?

I would never commit suicide, but the future looks pretty bleak, even if things stay the same...........

No more:
- Holidays because of travelling sat down and sharing foreign toilets with roomate
- Work, I am coping with a job that starts very early in the morning and requires me sat at a desk for 8-10 hours a day
- No more romance.... I am not going to feel sexual with a pain in the rectum and the urge to urinate all the time
- A constant, awkward pain that I would say is a 4 on the scale
- The need to carry embarrassing cushions with me and explain to everyone why I am sitting on one
- Exercise I enjoy so going to get fat!
- Relaxing. Even watching a film I am always conscious of the ball in my rectum or have the urge to pee.

So really, what is the point! And things are only going to worse. I might as well head off to Switzerland and ask them to put me to sleep!!!!!!

We have all been in the place you are in right now. I absolutely go through periods very often asking myself the same questions.

My advice to you is to try to focus on the things you still can enjoy that are worth living for versus the things you cannot do anymore. For me this is my son, my family, sunrises, and many other things.

There are many people who live their lives with challenges and pain. That does not mean that life is still not worth living for!

Hang in there. We are all here for support.

Merrie

I got worse and worse as long as it was acceptable to me. When the things I had to limit were unacceptable to me (could no longer drive kids to school or shop for groceries), I made it my full time job to seek help and do research, to get well.
I am not yet cured but am now able to do everything that is important to me on a daily basis, and am pretty durn comfortable. As a result, while my search for a cure is ongoing it is kind of on the back burner because a lot of things (family, work. etc) are now higher priority. So I am on a two or three year plan to either be cured or find out this is impossible and perfect the best possible palliative care regimen.
But seriously, if your quality of life has got that low the answer is to make it your full time job to get informed, get treated and get better.

Yes, we have all been in the place you are. What treatments have you had so far? I am with Hermastesy. You have to keep researching. You have to talk to doctors about what you learn. This is still so unknown with the medical community that we have to inform them of what we learn. This will help them in their search for things to help us. Also, talk to your workplace. You might be surprised how helpful they may be. I have a stand up workstation that works for me. At first I thought it would stink to stand up all day, but really there are many professions that require a person to stand all day. Those people don't even think about standing all day. Hairdressers and pharmacists stand all day. Keep looking for a pain mgmt specialist. Keep thinking that you will get well. I am over 2 years into this and am back to living a somewhat normal life. I have learned what will cause pain and what my limits are. I have to be well for my kids. I have no choice as a single mother. They need me.
Please don't give up and try to think of all your blessings. I have met so many people that do not have PN, but have some other medical condition that disrupts their life. I always think of how it could be worse and be thankful that it is not.
When I came to this forum I was down in the dumps, but things are looking up for the moment. Of course I always worry about it progressing, but right now I am just taking one day at a time. The people here are always willing to help so learn what you can from this forum and use it to help yourself.
Wishing you well,
Gracie

Thank you everyone.

I am a very pragmatic person. I understand that other people live with bad things every day and I will approach this is in a constructive, positive fashion.

I just needed to brace myself for the challenge ahead.....

J

Hi again J

I think we've all been there, where you are at the moment.

Right now you are at a low point - the management of your pain has not yet been addressed at all. This is the point that you will look back on in months to come and say - wow, things were bad then, and look at me now.

It gets better, I promise. Do go and see your GP and ask for some help with the pain. Once that is under control, things will look very different.

As everyone has said, we have all been where you are now. I personally believe that dealing with PN is as much of a mental issue as a physical one. At first all I wanted was to get my life back and stop hurting. While pursuing physical healing I realized that I needed to change my own expectations as it was not helping me. Now I have a different measure of success. One of the things that drove me insane other than the pain was that feeling of having to pee constantly. I was put on imiprimene and it has taken that down to a manageable level. Now it only flares up when I have a bowel movement which seems to get everything going at once. I am not healed yet by any means and have a long journey ahead of me. But I can tell you that spending your time researching options for yourself and forcing yourself to focus on good things in your life is time well spent.

And remember to always reach out for support. The people on this forum have been an invaluable support to me and I don't think I could have gotten through the roughest times without them.

Blessings,
Grace

J, I agree with Grace that meds can really help lower that constant need to pee feeling. I couldn't handle the side effects of imipramine but there were other drugs that worked well instead.

Hey Violet

Are you aware of any other drugs that can help with the need to pee constantly feeling? I am just wondering what other options there are as I am not sure I am going to be able to keep taking the imipimene.

Thanks
Grace

Thanks so much everyone. I hope I didn't shock anyone; I would never do anything stupid and I do tend to be positive.

My biggest nuisance are the bowel movements. I have to plan my whole day around them. Because I cannot use a public toilet I can never be more than 3-4 hours away from either my or my parents home. (I cannot use a public toilet as it takes me 20-40 minutes each time and is quite messy).

I will go 3-4 times a day. If I am constipated I will still feel a strong urge, but only pass a small amount each time. Otherwise, I will pass a large volume each time.

Every movement leaves me 'sore' and seems to trigger a spark of movement and bubbling!

Is it the same for any of you?

J