Pelvic, perineum, genital and low back pain

Hello to everyone. My name is Boris, I'm from Croatia and sorry in advance if my english is bad. I joined here because I see so many sufferers about this what to call it "disease of unknown cause". Im 22 years old, and my problems started in 2011. I contracted chlamydia trachomatis and ureaplasma at that time and was treated with anti's. They did the trick, but since then, I always had some minor issues. I always had some urination and ejaculation discomfort, and sometimes when sitting on a bicycle seat. But I learned to live with it and it didn't bothered me that much. I started with bodybuilding in 2013. I was a really fit and muscular boy. Till this day, I had some problems with erections and noticed that I never had morning woods. But I could have sex when I ended with a girl, but sometimes I needed viagra because my penis didn't responded to stimulations. I also masturbated a lot during this years. But to get to the point now. In July this year, I noticed some big issues. It starter with a frequent urinations and a burning when pissing. Doctors discovered another chlamydia infection. This was treated with anti's, but after that, symtopms got so worse that I cannot live normally anymore. I went trough all kinds of test and they cannot find anything wrong with me and bacteria is not present anymore. My symptoms are so severe that I lie in my bed for days sometimes. Constant urge to urinate, burning when pissing, cannot sit for 10 minutes because sitting causes pressure, electircal like and knife like pain in the perineum, anus, penis, genitals, and worst of all, I feel all of that radiating to my lower back, abdomen, and generally in the pelvis region. I often even feel pain at the root of my penis, testicles, glans and my penis is really dead now. I have a good libido but my penis is like a foreign object attached to my body, that's how I feel and I cannot use m, penise even that I have good libido. I cannot even masturbate, and when I sometimes succeed doing it, it is more like a torture and not a comfortable feeling. Ejaculation is a nightmare, I feel so uncomfortable after that to the point that I really don't want to do it anymore and I actually have a fear of doing it in the future. My life is a misery now, my parents are trying their best to help me but but nothing seems to help for this nightmare. I consider ending my life so often and I just want to get out of this skin, and I didn't slept for a month now because of this, it kills me. I don't know what to do and it seems that anti's, physical therapies, natural remedies and all that crap doesn't seem to help. I am considering to do Ganglion of Impar blocks to my lower spine as it seems to help in 70 to 100% of cases with this kind of issues. Does anybody tried this or anything else that helped immediately? I'm only 22 and my life just startedy and this nightmare appeared. It took my life, my job, ruined my social life, ruined my relationship, ruined my passion and love for fitness and bodybuilding and ruined the meaning of being alive. To all of you who suffer from problems like this, feel free to write here, I am compasionate with all of you. I don't see a good solution for this, and I don't plan to suffer for years with this either, I'm tired mentally and physichally. I don't want to live like a zombie because of this. I feel like I'm alive, but half dead. God help us all...

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9 Replies

  • Hi Boris, firstly your english is excellent, second languages are difficult especially writing so well done and well done for putting out an honest and clear description of uour symptoms and how they are affecting you.I am reading this as part of my membership of a Rheumatoid Arthritis Forum and i certsinly am not ablr to help you with advice on your medical condition as mine are vety different and im sure the health care system and processes are very diffrrent in your country.

    However we have all experienced the fear, frustration and desperation you are obviously feeling and of course the problem of long tetm un ending pain, especialy as it appears you have no precise diagnosis. You are cery young to be going through such a bad time and i really hope you get more positive help in the very near future. I am a much older man of 56 so more than old enough to be your father but i have to say although we are supposed to get "older and wiser" all i have ever managed is the older bit. I can only tell you that having been at very low points in my life due to various happenings i have often thought i could not carry on, but you never know how strong you are until the day you find strength is the only thing left. You need help not only with your physical problems but also with how to cope with all the things you are having to deal with, pain is a very destructive thing to live with but there are ways to cope. Unfortunately the way we cope is different for everyone and i can only advise you to try anything you SAFELY can until you find something that helps you and then use that reief to keep searching and refining a "best solution" for you.

    I wish i could offer you more helpful advice than i have. When i was younger than you are now i was given something to read which i have read many many times throughout my life and it has helped me come to understand myself better. I still read it now and i have found and still do find meanings that help me in some way. If you use google or similar search engine put in DESIDERATA, I hope when you find it you can understand the english language version and maybe you can find a translation in your own language. I hope this helps you some. The very best wishes to you. Leon.

  • Thank you Leon. This is the hardest time in my life. I'm afraid that this will last for years and I'm not even married and I don't have a job anymore and I am afraid of being alone in the future without any help and support, and that would definetly kill me. Thank you again for your support and kind words.

  • Our fears are almost always worse than actual events. The brightest people with the sharpest imaginations always manage to paint a picture to frighten themselves and like every visit to the dentist the ouch is short term compared to the gain. We are very good at frightening ourselves especially when other hardly related things are going in the wrong direction, im not going to compare my lifr to yours because no 2 circumstances are ever the same and different things upset some more than others. I can tell you there have been quite a few times in my life when i felt i could not carry on but if nothing else i thought what would i tell someone else in a similar position, what would i advise someone who came to me for help?, in most cases i would tell them that nearly everyone who gives up on any task facing them in life finds that then when they plod over the next hill they find that the finish line was much closer than they knew and they find the strength to drag themselves to the finish line. Of couse sometimes you reach the top of the hill and you find that all you can see is the next hill, well then for now at least you know that you have to go that far before you can see or learn any more, so at that point what choice do you have?, well you can go back but that will leave you having to travel the same path again to make any progress, you can sprint forward but eventually that will mean you have used up all your energy and strength to get where you knew you could get anyway and you are still not past what you can see in front of you, there is the option to stop and rest for a while and thats not negative, that is knowing that you ARE going to move on from where you are and your catching your breath to give yourself the best chance of making the next steps count, when you decide you are ready to push on go ahead and use the clues from the sights and sounds you have seen along your journey to help you, you may see signs and not have a clue what they mean but when you go around the next corner it will become clear what the sign meant and the next time you see that sign you will know whats coming and the best way you can deal with it, but try and change something a little from what you did before unless the out come was perfect, if it wasnt change small things a little or you may find you get a better result but because you changed 2 things you dont know which worked. Albert Einstein is credited with saying the definition of stupid is to do exactly the same thing over and over again and expect a different outcome. We learn even when we dont think we do, but sometimes we just have to accept an outcome and that we will find out the "why" at a later date. Imagine trying to read a book in a dark room, you need light, well you dont have to know how electricity is generated to turn on a light switch, so throw the switch and take that as the first step toward moving forward and being able to turn a few pages and understand a little more, maybe at that point learning how electricity is generated isnt so important.

    Try and find the text i mentioned and read it, my only advice would be open the curtains or turn on the light first ;).

  • This is a really inspiring and encouraging story from you. Thank you for your time and moments for writing this. I just can't forgive myself that I am only 22 and have a abnormal health condition. My life has just about to start, and then, in just three months, I am doomed. This is the most shocking and disturbing event that happend to me since my exsistence.

  • Your life has reached a crossroads of a fork in the road, it is not what you expected and it is not what you wanted. When my friend was your age and years before i knew him his wife died in child birth and his son who survived had no optic nerves, so he had no sight or light recognition at all, until that day he had a recently married beautiful wife and a good well paid job with a company car and a nice rented home. All of it went immediately or within 1 month and he had the burden of a totally blind baby, he was 22. I cannot begin to imagine how he felt that day or the following days but there is one thing for certain he had reached a cross roads and there was no road behind him. Apart from the absolute agony he felt he had not 1 second to get used to the idea, to plan or to learn or prepare, it just happened. So he told me he couldnt work, he lost his job, his car, his home followed because he couldnt pay for it and of course his wife was gone. He had to organise and find the money for her funeral and he didnt know what to do. So i asked him what he did, he said "i fed him and changed his nappy what else could i do?", because right then it was the only thing for certain that he could do. It would take me a year to write down what happened to them since that day, but today they are both amazing people, the father, my friend David is now 54 and soon to retire, the son Simon is now 32 and he is obviously completely blind, he lives with his grandmother who is 84 but he doesnt live with her in the way you may think, he is her full time and only carer, they share a house and for the last 5 years since she had a stroke and became unable to walk or speak he has been her only care and support.

    I cannot tell you what tomorrow holds for you, or the day after, but i can tell you that at least some of it will be your choice and some of it wont, all you can do is to do the best with the things you have choices about, i will also tell you that there is not a single living being on this planet that can possibly do more than that.

  • I can't belive what stories I hear and see. This is heartbreaking... All I can say is that I will do my best. If I fail, that would be obviously my destiny. That would be a God's decision. Thank you Leon for everything, you are a true compassionate and a good man, you deserve all the best on this planet.

  • Unfortunately few of us get what we deserve if we are good and even worse the ones who are bad rarely get what they should have coming either. We can only do the very best we can with the cards we are dealt and play the hand as best we can.

  • Hi Eve. Thank you for a reply. Honestly, my condition is really a messed up one. It is like a combination of cystitis, prostatitis, pelvic pain syndrome and pudendal neuralgia, but pudendal neuralgia is excluded by last tests and my nerve is okay. So after all, I still think that I have some serious infection but it is like a hidden one and a really bad one. Every time when I give my urine samples, sperm samples and that, they cannot find any bacteria and doctors cannot help me. That is why I am so desperate and every day it seems to be worse and harder and symptoms vary troughout the day but they are 24/7 present and sometimes I cannot even move when pain starts to torture me.

  • Ask your Dr to do all the blood tests their is including HLT27 vitamin D , and vitamin b12 deficiency , it won't hurt to rule out inflammation, AS arthritis and check your prostate , ect good luck Terri

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