Do You Think This is PNE?
Posted: Sun Jul 03, 2011 8:52 am
Hello everyone! I was wondering if some of you could chime in if I gave you a description of what I feel and if you could tell me if you think it is PNE or not. I am also wondering whether or not you have similar symptoms to what I will describe below that have been diagnosed by a PNE specialist. Thanks so much for taking the time to reply!
1. Feeling of constant pressure in perenium/rectal area for that last year and a half. This pressure is so horrendously irritating and aggravating that I cannot sleep without a sleeping pill and napping is out of the question. Somtimes it feels as though my organs will fall out (have been checked for a prolapse by 4 gynos apparently mine is not significant enough to cause symptoms - uterine prolapse grade 1.5).
2. If you squeeze your fist really tightly for a few seconds, that is the sensation I have up the rear end/perenial area. As you can see it is not a strong pain, just moderate but highly annoying and frustrating as it is 24/7 NEVER a break! If it is really bad it will spread to my vaginal area as well.
3. Feels the worst while lying down (any position) and sitting (especially if slouching/not sitting on sitz bones properly). While standing/walking usually don't feel it, but if I think about it I can easily feel the pressure/tightness sensation. Sensation much less while on the toilet seats. I think my Ford Edge seats (bucket) aggravate it too.
4. Feel it as soon as a wake up and open my eyes, absolutely NO relief.
5. Occasional proctia fugax pain or other mild stabbing pain around rectum - most likely related to bms.
6. Lower left quadrant stomach pain that is horrible during ovulation (up to two weeks sometimes) - possible muscle/nerve problems, or something wrong with my ovary.
7. Pulling sensation in groin area and along vaginal labia. Possibly not nerve related and more to do with osteitis pubis.
My History
April 2009 - Gave birth to my beautiful baby boy 9lbs., 10 oz. Quick pushing stage, had epidural, and episotomy (Doctor told me it was 2nd degree tears with too many
stitches to count.
May - Oct. 2009 - Several uterine/vaginal infections, possible PID. Developped bad hemmeroids/anal fissures. Felt nerve pain like a rope being tied around my clitoris.
This pain was short - lived though.
Nov. 2009 - While running on a treadmill I felt a popping sensation in my groin. I progressively got worse with each passing day and it felt like a pulled groin muscle, only
kept getting worse. After several appts. with my gyn (and being called crazy and that I should have thought more about my decision to be a mother - I will
forever grudge her for that psychological scarring), my childhood chiropractor, walk - in doctors, ER visits I was finally diagnosed
with pubic symphysis dysfunction causing an osteitis pubis reaction. My pubis symphysis upon stork exray showed a moderate seperation of 6mm in March of
2010. This was a long time since initial injury. Recent bone scan of Jan. 2011 still shows chronic inflammation of the area.
Dec. 2009 - At this point fissures were pure hell. I also developped the rectal pressure/and perenial pressure at this time.
Feb. 2010 - Negative CT of pelvis with and without contrast (except radiologist states, "Fairly prominent vascular structures seen" - yet no doctor sees significance) and
negative colonoscopy, except for presence of very small hemmeroids and 1 large anal fissure.
May 2010 - Returned to work 1/2 time after mat leave. In sooo much pain! Really frustrated with the medical system and beginning to hate doctors. The only doctor I
didn't despise was my chiropractor. Depression started. Took a one week leave from work to try pelvic floor physical therapy after my own internet research.
(Had to travel 8 hours by car). Felt some benefit, but by no means cured of the pressure. Tried to relax and untighten my rectal muscles constantly and started
a regimen of kegals prescribed by physio. Felt like the Kegals made the rectal area tighter and more pressure and it was hard to "release".
July 2010 - Returned to physio, and booked for a lateral internal sphincterectomy as the Colo rectal surgeon assured me that was the pressure I was feeling was from the
fissure and his surgery would "cure" me however he did encourage the physio because he also felt I had pelvic floor myalgia. I had been on calcium channel
blockers (nifedeprine, dialtazam) and metamucil and sitz baths for months with little relief from the fissure pain.
**** After my third physio session I developped a thrombrosed hemmeroid about an hour after therapy. Had it lanced the next day (my God the pain, can't even put it into words!) Was on strong pain killers for about a week and then realized my pressure sensation was gone. Halleluhah! TO DATE NO DOCTOR SEES THE SIGNIFICANCE IN THIS FACT.
Aug. 2010 - Still having minor pain with bowel movements so went ahead with the LIS surgery. I will forever regret this decision. 9 days later, while having a bowel movement, the pressure/tightness/sensation returned and has not left me for a second since. The movement was difficult and I can pinpoint the exact millisecond the pain returned. Returned to work full time.
Sept. 2010 - Felt like I had a UTI so got antibiotics. Also have constant microscopic blood in urine after several samples. Elevated CRP twice as well. Later learned did not have a UTI. Saw a urologist who did a cystoscopy and told me all is well with my bladder and that some people always have microscopic blood and this can be totally normal.
Oct. - Dec. 2010 - Barely hanging on. So fed up with everything and depression is worsening with each passing day. My class was a nightmare (3 autistic children, 1 defiant with Terretz, 1 globally developmentally delayed, 1 ESL straight off the boat, and several more than two grades behing in LA and Math.) WOW. Constantly booking time off work to see doctors in the capital city (8 hours away by car or a 600 dollar flight) hoping someone somewhere might have a clue and trying physio while in city for appointments. Started noticing bowel leakage after bms (very small amount, but enough to irritate the skin)
Dec.2010 - Jan. 2010 - On the advice of my physiotherapist I tried a six week course of physio two to three times a week. My rectal area hurt so bad she was unable to do electrical stim or massage. She referred me back to the colorectal surgeon and dismissed me from therapy. Noticed rectal assymetry that was not there before!
Jan. 2011 - Huge depression. Constant crying and sense of absolute hoplessness and anger. The only thing keeping me going was my little guy and wonderful husband. A couple of good friends who also experienced chronic pain were also really supportive as well. Colo rectal surgeon thought the fissure was "superficial" and that he didn't cut the muscle enough the first time around and wanted to do it again. I told him "no" I was too scared of incontinence and I told him I was already having issues. He thought the bm leakage was odd and that the assymetry was from my muscles in spasm all the time. He convinced my husband that this was teh only way to get better and my husband in turn almost forced me to go through with it. I knew in my gut this was not the answer. I asked him about PNE and he stated I did not have it, rather pelvic floor myalgia/Levator Ani Syndrome which is brought on by anal fissures, or the anal fissures bring on Levator Ani muscle dysfunction. I asked to be referred to a pain clinic I read about on your site in Toronto, he refused and stated I needed to do the surgery. I again told him about my thrombrosed hemmy in July and how I was pain free until the fissure surgery. I told him that I thought when he froze the hemmeroid some lidocain might of got into a nerve surrounding my hemmeroid. He didn't see relevance and I don't think he really listened even though I must've repeated this to him several times during different visits. I asked about Botox and he said that would only render me incontinent.
Feb. 2011 - Anesthesized for surgery in hospital, only to wake up in severe pain and find out he did not do the surgery! He said he didn't see the fissure. However had loaded me up with lidocaine and I was black and blue. I think he gave it the "old college try" without admitting to it. I was in more pain than ever. I had a huge fissure again and a lot of bleeding. When I went to see him two days later he apologized and said he saw the fissure now.
March - Had the surgery again.....In hindsight, I think that I never did have a second fissure and that the pt hurt becasue I wasn't healed enough from the first surgery. That I developped another fissure after his lidocaine experiment is probably because of stretching me while I was sedated. However one tends to trust doctors
I feel even more betryayed and hate myself for not trusting my instincts. I have even more bowel leakage problems than before and fear it will get worse in the future. I am also angry with my husband for basically forcing me into it.
Fighting with Blue Cross as they do not feel I'm disabled. Had a very overzealous caseworker who thought I was lying and was always trying to make me feel that way. Bottom line is that none of my tests showed anything really wrong (other than my bone scan in that I was honest and said it was improving). Having a fissure certainly isn't enough to be on dissability and nothing else could be proved. Hit rock bottom. So frustrated can feel myself clenching my teeth as I'm typing this. Began having suicidal thoughts - even though I would never follow through, but just the thought of it scared me into knowing I needed anti-depresants.
Getting tired of typing as I'm sure you are tired of reading. So basically don't know where to go from here. I don't have a supportive doctor and the only thing I can think of is to try to have physio again. Hopefully my rectum can tolerate it this time. I live in Manitoba if you know of a doctor in my province that can help please let me know.
Thanks for reading.
1. Feeling of constant pressure in perenium/rectal area for that last year and a half. This pressure is so horrendously irritating and aggravating that I cannot sleep without a sleeping pill and napping is out of the question. Somtimes it feels as though my organs will fall out (have been checked for a prolapse by 4 gynos apparently mine is not significant enough to cause symptoms - uterine prolapse grade 1.5).
2. If you squeeze your fist really tightly for a few seconds, that is the sensation I have up the rear end/perenial area. As you can see it is not a strong pain, just moderate but highly annoying and frustrating as it is 24/7 NEVER a break! If it is really bad it will spread to my vaginal area as well.
3. Feels the worst while lying down (any position) and sitting (especially if slouching/not sitting on sitz bones properly). While standing/walking usually don't feel it, but if I think about it I can easily feel the pressure/tightness sensation. Sensation much less while on the toilet seats. I think my Ford Edge seats (bucket) aggravate it too.
4. Feel it as soon as a wake up and open my eyes, absolutely NO relief.
5. Occasional proctia fugax pain or other mild stabbing pain around rectum - most likely related to bms.
6. Lower left quadrant stomach pain that is horrible during ovulation (up to two weeks sometimes) - possible muscle/nerve problems, or something wrong with my ovary.
7. Pulling sensation in groin area and along vaginal labia. Possibly not nerve related and more to do with osteitis pubis.
My History
April 2009 - Gave birth to my beautiful baby boy 9lbs., 10 oz. Quick pushing stage, had epidural, and episotomy (Doctor told me it was 2nd degree tears with too many
stitches to count.
May - Oct. 2009 - Several uterine/vaginal infections, possible PID. Developped bad hemmeroids/anal fissures. Felt nerve pain like a rope being tied around my clitoris.
This pain was short - lived though.
Nov. 2009 - While running on a treadmill I felt a popping sensation in my groin. I progressively got worse with each passing day and it felt like a pulled groin muscle, only
kept getting worse. After several appts. with my gyn (and being called crazy and that I should have thought more about my decision to be a mother - I will
forever grudge her for that psychological scarring), my childhood chiropractor, walk - in doctors, ER visits I was finally diagnosed
with pubic symphysis dysfunction causing an osteitis pubis reaction. My pubis symphysis upon stork exray showed a moderate seperation of 6mm in March of
2010. This was a long time since initial injury. Recent bone scan of Jan. 2011 still shows chronic inflammation of the area.
Dec. 2009 - At this point fissures were pure hell. I also developped the rectal pressure/and perenial pressure at this time.
Feb. 2010 - Negative CT of pelvis with and without contrast (except radiologist states, "Fairly prominent vascular structures seen" - yet no doctor sees significance) and
negative colonoscopy, except for presence of very small hemmeroids and 1 large anal fissure.
May 2010 - Returned to work 1/2 time after mat leave. In sooo much pain! Really frustrated with the medical system and beginning to hate doctors. The only doctor I
didn't despise was my chiropractor. Depression started. Took a one week leave from work to try pelvic floor physical therapy after my own internet research.
(Had to travel 8 hours by car). Felt some benefit, but by no means cured of the pressure. Tried to relax and untighten my rectal muscles constantly and started
a regimen of kegals prescribed by physio. Felt like the Kegals made the rectal area tighter and more pressure and it was hard to "release".
July 2010 - Returned to physio, and booked for a lateral internal sphincterectomy as the Colo rectal surgeon assured me that was the pressure I was feeling was from the
fissure and his surgery would "cure" me however he did encourage the physio because he also felt I had pelvic floor myalgia. I had been on calcium channel
blockers (nifedeprine, dialtazam) and metamucil and sitz baths for months with little relief from the fissure pain.
**** After my third physio session I developped a thrombrosed hemmeroid about an hour after therapy. Had it lanced the next day (my God the pain, can't even put it into words!) Was on strong pain killers for about a week and then realized my pressure sensation was gone. Halleluhah! TO DATE NO DOCTOR SEES THE SIGNIFICANCE IN THIS FACT.
Aug. 2010 - Still having minor pain with bowel movements so went ahead with the LIS surgery. I will forever regret this decision. 9 days later, while having a bowel movement, the pressure/tightness/sensation returned and has not left me for a second since. The movement was difficult and I can pinpoint the exact millisecond the pain returned. Returned to work full time.
Sept. 2010 - Felt like I had a UTI so got antibiotics. Also have constant microscopic blood in urine after several samples. Elevated CRP twice as well. Later learned did not have a UTI. Saw a urologist who did a cystoscopy and told me all is well with my bladder and that some people always have microscopic blood and this can be totally normal.
Oct. - Dec. 2010 - Barely hanging on. So fed up with everything and depression is worsening with each passing day. My class was a nightmare (3 autistic children, 1 defiant with Terretz, 1 globally developmentally delayed, 1 ESL straight off the boat, and several more than two grades behing in LA and Math.) WOW. Constantly booking time off work to see doctors in the capital city (8 hours away by car or a 600 dollar flight) hoping someone somewhere might have a clue and trying physio while in city for appointments. Started noticing bowel leakage after bms (very small amount, but enough to irritate the skin)
Dec.2010 - Jan. 2010 - On the advice of my physiotherapist I tried a six week course of physio two to three times a week. My rectal area hurt so bad she was unable to do electrical stim or massage. She referred me back to the colorectal surgeon and dismissed me from therapy. Noticed rectal assymetry that was not there before!
Jan. 2011 - Huge depression. Constant crying and sense of absolute hoplessness and anger. The only thing keeping me going was my little guy and wonderful husband. A couple of good friends who also experienced chronic pain were also really supportive as well. Colo rectal surgeon thought the fissure was "superficial" and that he didn't cut the muscle enough the first time around and wanted to do it again. I told him "no" I was too scared of incontinence and I told him I was already having issues. He thought the bm leakage was odd and that the assymetry was from my muscles in spasm all the time. He convinced my husband that this was teh only way to get better and my husband in turn almost forced me to go through with it. I knew in my gut this was not the answer. I asked him about PNE and he stated I did not have it, rather pelvic floor myalgia/Levator Ani Syndrome which is brought on by anal fissures, or the anal fissures bring on Levator Ani muscle dysfunction. I asked to be referred to a pain clinic I read about on your site in Toronto, he refused and stated I needed to do the surgery. I again told him about my thrombrosed hemmy in July and how I was pain free until the fissure surgery. I told him that I thought when he froze the hemmeroid some lidocain might of got into a nerve surrounding my hemmeroid. He didn't see relevance and I don't think he really listened even though I must've repeated this to him several times during different visits. I asked about Botox and he said that would only render me incontinent.
Feb. 2011 - Anesthesized for surgery in hospital, only to wake up in severe pain and find out he did not do the surgery! He said he didn't see the fissure. However had loaded me up with lidocaine and I was black and blue. I think he gave it the "old college try" without admitting to it. I was in more pain than ever. I had a huge fissure again and a lot of bleeding. When I went to see him two days later he apologized and said he saw the fissure now.
March - Had the surgery again.....In hindsight, I think that I never did have a second fissure and that the pt hurt becasue I wasn't healed enough from the first surgery. That I developped another fissure after his lidocaine experiment is probably because of stretching me while I was sedated. However one tends to trust doctors
I feel even more betryayed and hate myself for not trusting my instincts. I have even more bowel leakage problems than before and fear it will get worse in the future. I am also angry with my husband for basically forcing me into it. Fighting with Blue Cross as they do not feel I'm disabled. Had a very overzealous caseworker who thought I was lying and was always trying to make me feel that way. Bottom line is that none of my tests showed anything really wrong (other than my bone scan in that I was honest and said it was improving). Having a fissure certainly isn't enough to be on dissability and nothing else could be proved. Hit rock bottom. So frustrated can feel myself clenching my teeth as I'm typing this. Began having suicidal thoughts - even though I would never follow through, but just the thought of it scared me into knowing I needed anti-depresants.
Getting tired of typing as I'm sure you are tired of reading. So basically don't know where to go from here. I don't have a supportive doctor and the only thing I can think of is to try to have physio again. Hopefully my rectum can tolerate it this time. I live in Manitoba if you know of a doctor in my province that can help please let me know.
Thanks for reading.