Health Organization for Pudendal Education

I see many posts in the past with no recent updates on how they are doing or what is going on. I see people have persevered for years. I don’t think I will be able to afford or get the surgery. Do people stop coming because of despair? I hope suicide is not the final solution. My faith says suicide condemns me to hell. Violet?

Some people get well and move on. Some people struggle for years. There are no easy answers and each person copes differently. I always tell people to please not consider suicide because typically they haven't tried all of their options for getting well. You owe it to yourself to at least try the available treatment options. And often there are new remedies coming available thanks to the doctors who are trying to treat us.

I'm not sure where you live but I think typically the European doctors are more affordable for surgery than in the US. But if possible, there are probably other things you would want to try before surgery because surgery isn't without risks.

Violet

Violet, I’m in Delaware. So far Dr. Conway who accepts insurance seems to be my best option at this point along with a listed PT an hour from me. I am not really in that much “pain”, unless burning counts?

I haven't been on in a few years mostly because I got well enough to work, and my job has been taking all of my time. My pudendal pain is probably from tight muscles but I never got a definite answer. My regimen consists of taking a small dose of methadone a few times per day, sitting in a certain chair whenever I sit (aeron), and sleeping with the Comfort-U pillow whenever I'm in bed. That's it. I work about 60-70 hours a week now.

Hi, I am new here. What is the chair you are referring to? Aeron? TY

Testudo wrote: ↑Tue Nov 10, 2020 5:14 am Violet, I’m in Delaware. So far Dr. Conway who accepts insurance seems to be my best option at this point along with a listed PT an hour from me. I am not really in that much “pain”, unless burning counts?

I consider burning to be pain. I think most people would. But there is mild burning or there is intense burning. What would you say your pain level is - out of 10?

Violet

I understand… many people leave with a blindside and don’t post updates. How do you make a post on here ? Or do I need to get verified? I’m a new account and I’ve been looking on the website for half an hour and there is no option to make a post. How do I post ?

Chistian, it looks like you just posted in this thread, so your account is already activated on the forum. If you want to start a new topic/thread, then you can go to the "Board Index" which you can see near the upper left of the forum. Then choose a section of the forum you want to start a topic in, such as the Welcome Center section of the forum. Click on that section, then click on New Topic in the upper left, give your topic a title, type your message, and click submit at the bottom.

Violet

Testudo wrote: ↑Mon Nov 09, 2020 8:30 pm I see many posts in the past with no recent updates on how they are doing or what is going on. I see people have persevered for years. I don’t think I will be able to afford or get the surgery. Do people stop coming because of despair? I hope suicide is not the final solution. My faith says suicide condemns me to hell. Violet?

Many of us have had our quality of life reduced to less than zero due to chronic severe pain. However, surgery outside of the EU can be very difficult to access an/or afford. Diagnostic difficulties, gas lighting, poor medical care/indecision and misinformation about surgical risk often heighten despair.

My perspective is that everyone deserves to be pain free and free of restrictions. Anyone battling this disease, must be willing to try all options before considering suicide. I must say that if you are in the uk, surgery is very difficult/almost impossible so expect one hell of a fight.

Surgery gave me hope and unlike most, it was a very easy decision to make

Testudo wrote: ↑Mon Nov 09, 2020 8:30 pm My faith says suicide condemns me to hell. Violet?

I guess I never really responded to that question, but I was thinking about it after re-reading your post and these are my thoughts -- but I could be wrong. Only God knows your heart. For me, I went through some horrendous symptoms and there was a time I did not want to live. But I chose to pursue all options and instead of ending things, try to put my energy into helping as many other people as possible. With that said, I could never judge someone else if they are unable to continue going because I'm not in their shoes and there may be people who suffer even more than I did who don't have any options left. So, that is a question you would need to take to God and He will show you what to do. I pray often for everyone who comes to this forum that God will help them figure out what to do and give them healing and strength.

Haven't heard from you in awhile, Testudo. I hope you are doing OK.

BTW, I have a different view of hell than most people. I will post it in the spiritual section of the forum.

eraser wrote: ↑Wed Sep 23, 2026 12:16 am My perspective is that everyone deserves to be pain free and free of restrictions. Anyone battling this disease, must be willing to try all options before considering suicide. I must say that if you are in the uk, surgery is very difficult/almost impossible so expect one hell of a fight.

Surgery gave me hope and unlike most, it was a very easy decision to make

Well said, Eraser.