12 years of suffering. I need guidance

[zizo]

Hello
The problems started right after I had a hemorrhoids surgery 12 years ago. I started feeling pain when sitting, more on the left side. I also started having urination problems: More frequent urinations and more difficult to urinate. Also every night I wake up from sleep to urinate. Doctors didn't know what I had. A doctor tried to inject a liquid inside my penis to see if the urethra is fine. He could see where the special liquid is going by looking at an imaging machine. On his first attempt the liquid couldn't go past the external urethral sphincter (which controls the urination). So he pumped the liquid harder the next time and I shouted from pain. He said my urethral sphincter is tensed which is why I felt pain and why only little liquid passed through the sphincter. He told me this happened because I was stressed. But I wasn't. I was completely relaxed during the test. So I started investigating online and found out the a spasmed sphincter is a possible symptom of pudendal neuralgia and it does cause frequent unration. The neuralgia also explains the pain while sitting.
I live in a third-world country. There are no pelvic specialists here. I always dreamed that one day I will be able to visit the US or Europe where I can be examined by specialists. But 12 years went by without the realization of this dream. The symptoms are still the same just like 12 years ago. Why am I writing this now?. Because there's another disaster on the way: I need to do another hemorrhoids surgery. And I am scared. I have been terribly suffering from these new hemorrhoids for two years. I didn't do the surgery out of fear that my pudendal problems might get worse since that it was the first surgery that set off the pudendal issues. I am also scared that I might not be able to urinate the day of the surgery since that on the day of the surgery 12 years ago it took me 10 hours after the surgery to finally be able to urinate. A catheter can solve this problem, but my sphincter is always tense. It might be impossible for a catheter to be able to go through without injuring the sphincter. So I am not doing the surgery for two reasons: My pudendal issues might become worse. And I might have to be catheterized which can lead to an injury.

Please do you know any specialist who's willing to listen to my problem and provide suggestions? I don't have a strong passport so I can't travel to first world countries where such specialists reside. So the only option I have is an online correspondence with a specialist.
Plz help if you can.

[Violet M]

Hello Zizo,

I'm not sure who to suggest but what you could do is email some of the doctors and PT's listed on our website at http://www.pudendalhope.info/node/54 and http://www.pudendalhope.info/node/16. Some of the doctors and PT's have their email listed. I'm not sure what country you are in but you could ask some of these doctors or PT's if they know of anyone in your country who treats people with pelvic pain. People like Stephanie Prendergast from the US or Maeve Whelan in Ireland teach PT's from other countries around the world and they may be able to tell you if someone from your country took their class. Peter Dornan in Australia is also very knowledgeable.

Violet

[Violet M]

Hi Zizo,

Did you ever have that second hemorrhoid surgery? If you have surgeons in your country, maybe you could get one of them interested in learning how to treat pudendal neuralgia. I'm sorry, this must be very hard for you.

How do you know for sure what you have is hemorrhoids? Has your doctor visualized them? The anal sphincter is innervated by the pudendal nerve and could cause pain in the same area.

Violet

[zizo]

Hello Violet. Thank you for your feedback. No I didn't have the surgery. I still suffer from the hemorrhoids. I know I have hemorrhoids because they get enlarged. Plus the pudendal pain I feel while sitting is at a different place. Sitting on a toilet is painful so the pain site is where the buttocks meet the toilet seat. I have emailed many doctors who are listed on this site. Most of them didn't respond. On of those who responded, Dr. Fitza, said that I surely don't have pudendal Neuralgia. He said I have levator uni syndrome. I had a paid video call with Dr. Amod who's listed on this site. He's the only doctor on the lists who offers online consultations. He said he cannot diagnose me without examining me. The worst thing this condition has done to me is that it made me unable to have a necessary hemorrhoids surgery. It's hugely impacting my life. I would have had the surgery six years ago if it wasn't for my fear of the pudendal problem getting worse. I got used to my pudendal issue. It's not as bad as some people have it. I can sit on a non-hard surface for an hour or two. Urination difficulty isn't bad enough to make me take medications to ease urination. I am worried if I have the surgery that my pudendal problem will become much worse because my pudendal problem was started in the first place by a hemorrhoids surgery.

[zizo]

I have read that muscle relaxants can be a treatment for levator uni syndrome but I couldn't try it because all muscle relaxants can cause urinary retention. I already have urination difficulty due to my spasmed external urethral sphincter. In case I became unable to urinate and went to ER I am worried the catheter can injure my sphincter because it's spasmed. In the liquid injection test I had 16 years ago, most of the liquid that was injected in a second try with great force, most of it couldn't go through my sphincter. Only very small amount went through. How can a catheter go through then?
It's just a disaster. I am thinking of taking a low dose of a muscle relaxant while at the same time taking tamsolusin as a precaution in case of urinary retention.
I envy you guys that you live in first world countries or can travel to them. I just wish I can see a specialist for once in my life.

[Violet M]

Hi Zizo,

I'm sorry to hear you didn't get more responses back from the doctors. Do you have access to any physical therapists in your country who can evaluate the levator muscles? The thing I am wondering is if it's a problem with the pudendal nerve, it's possible it could be causing spasm of the levator muscles and causing you to have levator ani muscle spasms. That's what happened to me. Sometimes it's hard to figure out whether it's the nerve causing the muscles to spasm, or the muscles causing the nerve to be irritated. But if it's the muscles that are the primary problem, hopefully the medication will help relax the muscles and that will relieve the nerve irritation. Maybe it's worth trying the medications you mentioned to at least see if they help and if not, you could discontinue them and try something else?

Violet