Hi,
Apologies for the intimate nature of my post but after having been practically abandoned by Drs I feel that the internet is my last resort (if this is too intimate i will edit/delete). Females may not wish to read on as it perhaps doesn't really apply and it might disgust you a bit! Also apologies for the explanation of medications that im sure many of you are aware of, I have posted this on other sites that need background information on the medication I was given. Im 31 and have been suffering from IBD for the last 10 years (chron, colitis and illietus) and this prostatitis/chronic pelvic pain syndrome/interstitial cystitis for the last year.
Im looking for some advice from sufferers of this condition. Unfortunately for the last year i have been suffering from a lot of testicle pain (a feeling just like being kicked in the balls) as well as pain around the waistband/bladder (a winding sort of feeling) and occasionally a sort of sore/stinging feeling in the creases where my legs join the pelvis.
This has been an extremely difficult time and have struggled to walk for the first 4-5 months, it is extremely distressing. Sometimes I feel a bit better but standing for around 10-15minutes or longer will bring on the winding pain. A brief background on myself, I have suffered from Crohn's and ulctrative colitis for the last 10 years which are diseases that effect that bowel and illieum, symptoms of this are frequent bowel movements and ulceration of the intestinal lining (much like a mouth ulcer but along the intestinal tract is how it was explained to me) Unfortunately I did not respond to the lesser treatment as my condition was deemed mild to severe and after the usual immunosuppressive and steroid treatment I was put on a drug called infliximab (or remicade which was the brand I was given) This is when my problems with cpps/prostatitis/epididymitis/interstitial cystitis started.
Infliximab is quite a powerful drug (industrial I believe is the word they use in my referral letters!) and its aim is to lower the immune response in the body as Crohn's/colitis is thought to be an autoimmune disease where the body attacks itself. While it worked extremely well for me unfortunately it would appear that it came at a cost and I have now developed this condition possibly as a result of this (but equally it could be coincidental) The drug is administered as an IV every 8 weeks and shortly after my first infusion I started to have minor problems like tonsillitis and athletes foot and other minor virus’ and infections which I had never experienced before.
My episode with cpps/epidiymitis/prostatitis/interstitial cystitis started with a mild pain in my testicle (right side) and developed into a much stronger pain. I visited my gp and was given a two week course of ciprofloxacin and an ultrasound a few weeks later, by this time my pain had almost gone and I felt back to normal. I have had epidiymitis previously and it went away after a few weeks. The ultrasound confirmed I was recovering from this and she said it was almost back to normal. I had about a week of feeling fine and went to have my 8 weekly infusion at the hospital of infliximab, that evening the pain returned in the same place and I have been struggling ever since. I was given a prescription for ofloxacin and completed 3 weeks of that but the pain remained. I was referred to a urologist who I have drastically lost faith in, initially I felt he was competent and he explained my problem to me in a way that i could understand but was surprised that when i returned in 4 weeks that i was still in a lot of pain and having problems walking. He ordered a cystoscopy and hydrodistention in addition to an mri and diagnosed interstitial cystitis as he said my bladder at first appeared normal but was inflamed when stretched. I have had no problems with urinary frequency or urgency. This was the route he decided to take and advised me to have bladder instillations, how this will help the pain in my testicles I do not know but i was so desperate I went along with it. The nurse tried to catheterize me but it was far too painful due to the inflammation and said she would not forcibly restrain someone for it. He now says there is nothing more he can do and has referred me to some specialist of which there is an 8 month waiting list. I paid to see the specialist privately as I was in such discomfort and he seemed baffled as to why I had been diagnosed with interstitial cystitis if I was not complaining of any urinary problems. His advice was that this is not interstitial cystitis and referred me to two other Drs, a specialist testicle dr and an immunologist.
So here I am at the moment feeling very let down by the nhs and in a lot of pain some days (luckily I have a pain medication prescription for my Crohn's/colitis otherwise I would not have been offered any pain relief at all) But they don’t really work for the kicked in the balls type of pain I frequently get. If you have read this far I would like to thank you very much and if you can offer any input on my situation it would be greatly appreciated, I hate using the internet for medical issues as it is usually a minefield but I really feel I have no other option at this point. I have stopped the inflixmab infusions now but still take an oral immunosuppressant (azathioprine 50mg) as well as other Crohn's medication (mesalazine).
I have read ‘headache in the pelvis’ and do an hours worth of stretching/physio a day as my GP believes it is prostatitis (non bacterial due to the antibiotics having little effect also my bladder shows no sign of infection) My diet is already quite strict due to Crohn's but recently I have cut out sugar as well as there seems to be some theory behind prostatitis being related to candida/fungal. My questions are can excessive straining when going to the bathroom/frequent bowel movements cause this? Does anyone believe the fungal infection of the prostate theory(I have read several articles on the effect infliximab can have on fungal infections)? Should I ask for a urine/semen/prostatic fluid test (I have not had any)? I have had a prostate exam where he said it was very inflamed.
Thanks for reading and anyone who has experienced anything similar I would GREATLY appreciate your input.
Apologies for the intimate nature of my post but after having been practically abandoned by Drs I feel that the internet is my last resort (if this is too intimate i will edit/delete). Females may not wish to read on as it perhaps doesn't really apply and it might disgust you a bit! Also apologies for the explanation of medications that im sure many of you are aware of, I have posted this on other sites that need background information on the medication I was given. Im 31 and have been suffering from IBD for the last 10 years (chron, colitis and illietus) and this prostatitis/chronic pelvic pain syndrome/interstitial cystitis for the last year.
Im looking for some advice from sufferers of this condition. Unfortunately for the last year i have been suffering from a lot of testicle pain (a feeling just like being kicked in the balls) as well as pain around the waistband/bladder (a winding sort of feeling) and occasionally a sort of sore/stinging feeling in the creases where my legs join the pelvis.
This has been an extremely difficult time and have struggled to walk for the first 4-5 months, it is extremely distressing. Sometimes I feel a bit better but standing for around 10-15minutes or longer will bring on the winding pain. A brief background on myself, I have suffered from Crohn's and ulctrative colitis for the last 10 years which are diseases that effect that bowel and illieum, symptoms of this are frequent bowel movements and ulceration of the intestinal lining (much like a mouth ulcer but along the intestinal tract is how it was explained to me) Unfortunately I did not respond to the lesser treatment as my condition was deemed mild to severe and after the usual immunosuppressive and steroid treatment I was put on a drug called infliximab (or remicade which was the brand I was given) This is when my problems with cpps/prostatitis/epididymitis/interstitial cystitis started.
Infliximab is quite a powerful drug (industrial I believe is the word they use in my referral letters!) and its aim is to lower the immune response in the body as Crohn's/colitis is thought to be an autoimmune disease where the body attacks itself. While it worked extremely well for me unfortunately it would appear that it came at a cost and I have now developed this condition possibly as a result of this (but equally it could be coincidental) The drug is administered as an IV every 8 weeks and shortly after my first infusion I started to have minor problems like tonsillitis and athletes foot and other minor virus’ and infections which I had never experienced before.
My episode with cpps/epidiymitis/prostatitis/interstitial cystitis started with a mild pain in my testicle (right side) and developed into a much stronger pain. I visited my gp and was given a two week course of ciprofloxacin and an ultrasound a few weeks later, by this time my pain had almost gone and I felt back to normal. I have had epidiymitis previously and it went away after a few weeks. The ultrasound confirmed I was recovering from this and she said it was almost back to normal. I had about a week of feeling fine and went to have my 8 weekly infusion at the hospital of infliximab, that evening the pain returned in the same place and I have been struggling ever since. I was given a prescription for ofloxacin and completed 3 weeks of that but the pain remained. I was referred to a urologist who I have drastically lost faith in, initially I felt he was competent and he explained my problem to me in a way that i could understand but was surprised that when i returned in 4 weeks that i was still in a lot of pain and having problems walking. He ordered a cystoscopy and hydrodistention in addition to an mri and diagnosed interstitial cystitis as he said my bladder at first appeared normal but was inflamed when stretched. I have had no problems with urinary frequency or urgency. This was the route he decided to take and advised me to have bladder instillations, how this will help the pain in my testicles I do not know but i was so desperate I went along with it. The nurse tried to catheterize me but it was far too painful due to the inflammation and said she would not forcibly restrain someone for it. He now says there is nothing more he can do and has referred me to some specialist of which there is an 8 month waiting list. I paid to see the specialist privately as I was in such discomfort and he seemed baffled as to why I had been diagnosed with interstitial cystitis if I was not complaining of any urinary problems. His advice was that this is not interstitial cystitis and referred me to two other Drs, a specialist testicle dr and an immunologist.
So here I am at the moment feeling very let down by the nhs and in a lot of pain some days (luckily I have a pain medication prescription for my Crohn's/colitis otherwise I would not have been offered any pain relief at all) But they don’t really work for the kicked in the balls type of pain I frequently get. If you have read this far I would like to thank you very much and if you can offer any input on my situation it would be greatly appreciated, I hate using the internet for medical issues as it is usually a minefield but I really feel I have no other option at this point. I have stopped the inflixmab infusions now but still take an oral immunosuppressant (azathioprine 50mg) as well as other Crohn's medication (mesalazine).
I have read ‘headache in the pelvis’ and do an hours worth of stretching/physio a day as my GP believes it is prostatitis (non bacterial due to the antibiotics having little effect also my bladder shows no sign of infection) My diet is already quite strict due to Crohn's but recently I have cut out sugar as well as there seems to be some theory behind prostatitis being related to candida/fungal. My questions are can excessive straining when going to the bathroom/frequent bowel movements cause this? Does anyone believe the fungal infection of the prostate theory(I have read several articles on the effect infliximab can have on fungal infections)? Should I ask for a urine/semen/prostatic fluid test (I have not had any)? I have had a prostate exam where he said it was very inflamed.
Thanks for reading and anyone who has experienced anything similar I would GREATLY appreciate your input.
