Left pelvic pain help

[Inpain91]

I'm a 22 and have been suffering from Lower left pelvic pain since about April. I have has a lot of test and investigations and all have come negative. The pain is localised and I have the urge to go to the toilet. I had a pelvic and ct scan, sif flex (as they thought it might have been bowel related) urine, blood and sexual health screening and all negative. The pain come and goes as it pleased and can last to about a week. I just don't know what to do. I feel like my insides are being ripped and no pain medication seems to help. I was on contraception but stopping it didn't help. I think it may be bladed related. I don't know but it is making me live in misery as the pain is excruciating.

[Out-of-the-blue]

Hi there

I really feel for you. Sounds like you have something very similar to me but I am 8 yrs plus down the line. The nearest diagnosis I have been given is Pudendal Nerve entrapment Like you I find that NO medication works and in fact the heavy opiates just made me feel dreadful so I've given up on them all I do take one 10mg Amitryptiline at night to aid sleep My main help an an ordinary Tens machine which I have on ALL day and helps distract me from the pain. I have had one inserted in my right buttock but so far this hasn't 'hit the spot'

This pain is indescribable I know and flare ups can be dreadful

I have learnt that the only way to cope is to REST but that is not easy if you are working Reading these forums at least makes you realise you are not alone as I find most people I know just don't understand the concept of this condition

Hope things improve for you and I'm always at the end of the line if only for a chat....

[JudyRentz in reply to Out-of-the-blue]

No,psychotherapy will not help.this is a monster pain....seven years I thought I would just have to die....my pelvic specialist in Chattanooga tn saved my life with internal blocks..ALWAYS under PROPHOPHAL .....you cant bear them while awake....however the disease got worse!as is common,and the blocks stopped working.....praise GOD,I have just had pudendal entrapment surgery and we and Dr.ANtolak in Minnesota are very hopeful......you don't have to live with this nightmare,but you must find the right specialist...let me know....Judy r

[painistoomuch in reply to JudyRentz]

Hi can you tell me the name of the dr. that did your surgery and also was it done vaginally or was it done via the buttocks. I have been a PNE sufferer for 4 years 24/7. Also, can you tell me was your Dr. a neurologist as well?

Looking forward to your response. Thank you

[paulh511]

Hi there. I am not a doctor but you may find that physiotherapy can help. You may have some muscular dis function or contraction. Can you tell me what type of pain it is? Is it burning, stabbing or aching?

[Inpain91 in reply to paulh511]

It is a stabbing and aching pain. It is hard to describe

[Antione324]

Hello, I understand your pain, I've been to many of doctors over the years , many test, chiropractors , the only thing there saying it is CPP ( chronic pelvic pain) I've been searching the web and prudental nerve pain, describes all my symptoms, I'm considering a flight to CA. As of now muscle relaxer and hydro codeine taken when needed

[pizon in reply to Antione324]

I live in the states and have seen Dr. Richard Marvel in Annapolis MD he is one of the few dr.s that dose the PN surgery if you google him you can find out all you need to no...he knew what was wrong with me before he saw me (just looking at my records)...the dr. that did my surgery ( a uro gyn ) didn't have a clue as to what was wrong with me I wish I would have seen him sooner

[JudyRentz]

I'm sorry you're in pain. I have suffered so much,but,praise God, I'm on my way up........have you been to a pelvic specialist......I really can't relate to this pain....mine radiated over my lower half......let me know. JudyR. By the way , of all the meds we tried, I found zaneflex was the most effective.

[Inpain91 in reply to JudyRentz]

No I have not been to a pelvic specialist. I am not aware of any pelvic specialists in England

[JudyRentz in reply to Inpain91]

In pain. I have talked to so many sufferers in England who have found. Help....search pudendal help in your area...you could contact a world famous surgeon in France....everyone refers to him as Dr.Richard ...I don't know his full name,,,,but there certainly p specialist in England.....you don't have to live with this.....let's pray some of the other contacts on this site will answer.....Judy r

[dknees4 in reply to Inpain91]

Have you looked for a specialist under the heading "urogynocologist?" These are the doctors here in the U.S. that are most familiar with CPP. I suffered 24/7 for a year and found this info on the John Hopkins Clinic website. Fortunately there was "one" specialist where I lived. After three rounds of trigger point injections my pain dropped to a 1 on the 1 - 10 scale..!! Check around where you live to see if there is a specialist like this there. The injection pains are nothing compared to the pain you are suffering from currently. Good luck & God bless.

[PPSN_JudyB Pelvic Pain Support Netwo]

Just wondering whether there is any pattern to this pain : is it triggered by the menstrual cycle ? have you tried keeping a diary for a few weeks ? and did you have a transvaginal ultrsound scan , if so it may be worth requesting a copy of the scan report as this sounds as though it could be a cyst. You can request this from your GP surgery or the hospital where it was carried out. ( PALS can help you with obtaining this )

[Inpain91 in reply to PPSN_JudyB]

It has no pattern just comes and goes and is always on the same place. Yes it was a transvaginal and had 3 doctors look at the results and all clear.

[paulh511]

I have had burning and stabbing pain in my groin now for 2 years. I suggest that you read a book called " a headache in the pelvis" it really is a great book and helped me enormously. I have tried every medication available all to no avail. I have now found a physio who specialises in pelvic pain and it has given me some relief. I can only suggest that you try the same before trying anything more invasive. Good luck.

[paulh511 in reply to paulh511]

There is a very good pelvic pain specialist in London called Dr Andrew Baranowski.

[JudyRentz in reply to paulh511]

Try hydroxizine. And ,in all my illness,even over morph and opiums. I have found that Tizanidine ,only eight Mgs,eases most....sometimes I had to take 800mgs IB an clonazepam,but itwas a surprise relief ....I pray you find help! Judy r

[pauline19]

Do you feel a kind of downward pressure? When the pain is at its worst is it relieved somewhat by sitting on the toilet? I too was told there was "nothing wrong." Eventually I got referred to psych and pelvic physical therapy. I was stunned to find out that all those radiologists had missed fractures in two tiny bones in the pelvis the pubic rami and BC I had not been immobilized I now have pudendal neuralgia which feels like a sharp ripping pain going down the length of the vagina. I had CT guided nerve blocks but that didn't help. Now I have to go for something called a pudendal release done by an MD who doesn't take insurance... This has devastated me. No sex of course since this happened 18months ago. I feel like my entire life has need destroyed. When your sex organs hurt so bad that sex is impossible, it damages more than just your relations with your spouse.

[Teddiep]

Hi you sound like me. I have had lower right pain for 2years 2months, had lots of tests but nothing found. However, last week I had a camera into my bladder and had my bladder stretched but also he found my urethral tube ( to wee out of) was far too tight. On a scale of 1-4 it was a 3, 4 being the tightest. Touchwood, so far my pain and pressure has eased. I just hope so much that this is the cause of all my pain and stress for the last 2years.

Your comment on insides being ripped is how I explain mine and mega urgency for a wee and tons of after pain once I've had a wee. Good luck. X

[Htemo]

Short pelvic floor syndrome? Pelvic floor muscles spasm and the pain is intolerable plus causes bladder dysfunction. I have this. Lived with it un(mis)diagnosed off 30+ years. Mr Vic Khullar at St Mary's Paddington London has helped me with Botox to pelvic floor muscles.

[Shanellope93]

It sounds similar but different then my condition. I just want to encourage you to consider lesser invasive treatments first. I went through many maybe unnecessary surgeries I found the one that helped the most. Botox injections. Doctors are starting to use because it is helping. Saved my! Pelvic spasm can the cause of many symptoms as i know. Medications galore worth little help and surgery upon surgery, little hope. If the muscles are in spasm a whole lot of pain and other symptoms jump on. You read my story on this site see if it resonates. Don't to doctors when they tell you is in your head. Don't settle life pain and meds. Keep fighting.

[costagran]

i have been through a similar situation lasting 5 yearS.

my action plan for 2017 is

no coffee first thing in the morning.

instead make an infusion of boiling water with lemon juice,tablespoon of olive oil extra virgin and a little honey.

no alcohol.

chew food very thouroughly.

half a tablet of pancreatic enzyme with hlc at the start of my main meal.

i now believe my pain was digestion related as this lifestyle has eased my pain to the point that i can function again.

anyone out there in desperation with ibs and psychiatric diagnosis like me,

give my recipe a go for a few months.

love to hear how you get on.

[painistoomuch]

this is how my pudendal neuralgia started. It's been 4 years. My left leg from my buttocks, including labia, leg, calfto my toes are half the size and have atrophied My vaginal wall feels like there is a hot poker inside of it. The left lower quadrant of the pelvic region is sharp pain Please find a dr. that is an expert in the field of Pudendal nerve entrapment. I have constant constipation and pain in my rectum like a hot cole is in there. Pills are only a mask not a cure. I did 3 years of Pelvic Floor P/T 3 times a week. I've had back surgery. I have had multiple nerve blocks, cortizone shots, botox shots to the pelvic floor, Platlet Rich Plasma Shots and all of these have been temporary relief. I use the "S wand" wich is a therapeutic wand which gives temporary relief. I can't sleep at night and my marriage is falling apart due to my husband not understanding fully how many organs PNE affects, not to mention I am now in menopause. Also when the pain started I thought it was my cycstic ovary on the left so I had that removed along with my left falopian tube which put me in spontaneous menopause. Still this did not relieve the pain. I cry daily and have tried medication that only makes the constipation worse and again, only masks the pain. I have a 3 ring binder of years of tests done by dr.s who have no clue as to what PNE even is and God forbid a Dr admit they don't know something so they blow you off or tell you to see a shrink. There is a Pudendal Dr in AZ and one in Maryland and one in NH. There is also an Expert Euro-Gyno Dr. Kohli in the Boston area doing stem cell. Dr. Dellon in Maryland is an expert on this as well and if you are in the USA get to one of these Dr. to be diagnosed. Dr.'s are unaware of this condition and stem cell seems the way to go in my opinion. I am not a dr and this is not medical advice this is my disclaimer.

[Susan1-2]

I have identical symptoms. It all started after anal fistula surgery. I too have atrophy. I also had Pudendal Nerve Surgery with Dr Dellon and PRP with Dr. Kholi. Now I am waiting for a colostomy. I have a herniated L5/S1 and bulging L4/L5 disc. I walk 3-5 miles a day to keep the radiculopathy from getting worse. I have had numerous MRI’s. They tell me I do not have cauda equina. I have had bacterial infections in bladder, bowel, and vagina. My system is not working right.

[pizon]

I too have suffered with this in my case it was related to the pudendal nerve I found over this last 3 yrs. the only things that have helped me were 1. yoga titled your pace yoga for relive of pelvic pain 2. hops and valerian root 3 times daily (all the meds I had gotten from the dr. made me very ill and 3. a book titled how to heal pelvic pain it has a lot of stretches and messages..my left hip pain was related to my psoas muscle I hope this helps I've had all the tests and went to a pelvic pain dr. and nothing helped me but what I have listed and I also went to psychotherapy and it did help but not as much as the yoga I do at home I hope this can help you could also try acupressure I find this helpful...best of luck oh yes I also use a CBD oil Re-Live it also helps it is definitely a trial and error type of illness I have found one size dose not fit all and it will not go away over night but I am convinced it is related to the nerves in your back and or muscles I hope this helps