Too many years in constant pain......

[JAT]

Hello all.

I'm not exactly new here; joined in March, 2011. I've decided to post as I feel incredibly alone, cannot tolerate the pain (both physical and psychological) any longer, and need support. In 1999 I had a laparoscopy for chronic pelvic pain. It was discovered that I had endometriosis, probably had had it for at least 20 years prior (I'm now 56). Due to the endometriosis causing adhesions, my sigmoid colon was adhered to my left ovary, which was all adhered to my left pelvic sidewall. The surgeon performed lysis of adhesions, removed all visible signs of endometriosis, and a presacral neurectomy. For approximately 3 months following this surgery - I felt great. Then, all went downhill. Note: Approximately 3 years prior to all of this I had a serious horseback riding accident; jumping lessons, horse "took the jump" too soon and "popped" the jump, as the horse was going over the jump, I flew over him and landed on my butt and hit my head... after months of what I call the "doctor-go-round" and severe pain, I was finally diagnosed with having sustained a coccygeal fracture from the accident - finally visible on special views taken via x-rays. On this note, the orthopedic surgeon indicated to me that some time in the future I might experience a whole host of problems. To add insult to injury (maybe) - perhaps 23 years earlier, my sister had kicked me in the same spot and I was unable to walk for months. Fast forward to after laparoscopic surgery (1999)... Underwent Lupron injections; which unbeknownst to me at the time... many years later learned that that drug caused reactive hypoglycemia among many other problems, had seen a urogynecologist numerous times, underwent physical therapy (no improvement), countless visits to my gynecologist, further laparoscopies, diagnosed with pelvic congestion syndrome via an invasive procedure in Radiology (special procedures), countless drugs, psychiatry (due to the "God-like" behavior of the surgeon... ummm... in his mind I guess I didn't turn out "perfect" of which he refused to come to terms with - later learned he's notorious for this... I ultimately ended up having post traumatic stress disorder), neurology, gastroenterology, rheumatology, countless CTs, MRIs (also have bulging discs, fractured L5? of unknown etiology, Tarlov cyst, osteopenia), nuclear medicine bone scans, ERCPs, upper and lower endoscopies, 2-3 hospitalizations, visits to the ER (intractable pelvic pain, vomiting, urinary frequency and/or urgency, gastrointestinal problems), I have been written off, blown off, yelled at, been "labeled/red-flagged" as a drug-seeking missile, labeled as a psych-case, lied to numerous times... the list is endless. Fast forward to present day: On a daily basis I experience horrific searing/stabbing/burning/piercing lower back pain combined with searing/stabbing/burning/piercing pelvic pain, my genitals burn, urinary urgency, retching and vomiting... God - someone please help me. All of this has taken a major toll on all aspects of my life - I don't have a life. I cannot work (I'm a medical transcriptionist having to sit for hours on end and am my husband's bookkeeper - more sitting), I cannot sleep through the night... tossing and turning - in constant pain and sick; I've tried every position imaginable, countless pillows, hot/cold "patches", moist heat, dry heat, ice packs... I've tried sitz baths, I've lost family and friends... I dread going to bed at night; on top of all of this I have what seems to be "trapped gas" and during the typical course of digestion, stool in my colon seems to irritate whatever is going on. I've just recently undergone a battery of blood draws to rule out possible rheumatological syndromes/diseases/disorders; I've lost 25 pounds, now have alopecia, paresthesias in my hands, feet, my left leg is weak and painful... results: "normal." Discussed all of above with rheumatologist and gynecologist and mentioned possibility of PN; gynecologist thinks I might be on to something... he immediately went to his office and copied an article on PN. I have an order for physical therapy and was informed by my gynecologist that "they" will be doing "different" things to me - from what I've read I now know what they'll be doing. If it weren't for the support of what few "real" doctors that I have and the support of my husband of 37 years, I wouldn't be breathing today... Does ANY of this sound familiar to ANYONE?????????? Please help me.

[carolynm]

Oh honey....I am so sorry for all of your pain. We are here to understand and listen. You ARE on to something! You may be on your way to a proper diagnosis and treatment. If I were you, I would find a pelvic pain specialist within driving distance. They will know about PN and lead you in the right direction. You also need to get good pain management from a PM Doc. Monday start making all of the necessary appts. Where are you located and I can help you research these things!!! Keep reading the posts on this website, you may want to consider getting a prescription for an MRI in NYC from Dr. Potter, the wait time is months out so if you start now you can get an appt set up to look at that pudendal nerve.

You on on your way to finding answers. we will be here to help you through the process.

cm

[calluna]

I am so sorry to hear your story, you have really had a terrible time.

Much of what you mention is familiar to me. I had endo which was undiagnosed for many years, lots of us seem to have had this, who knows it may be connected in some way. Urinary urgency, yes, PN symptom. Burning genitals, horrible pelvic pain, yes PN symptoms. Retching and vomiting, stool in colon making things worse - yes to all these, in my case these are caused by diverticular disease. Currently I am eating one very small meal a day, and having a couple of protein shakes as well. It definitely helps me. Pain that feels like trapped gas, for me this has turned out to be due to diverticular as well.

I can't contemplate what it must be like for you, to have the back problems as well as PN to deal with. Horrible. And I notice that you mention Tarlov cysts, they can cause PN symptoms as well.

With regard to work, there are standing work stations available, I know that people on here have found them helpful. But that's not the main thing, is it.

The most worrying thing is that they really don't seem to have your pain under control at all, I do hope this gets sorted out very soon. Nobody should have to be in pain like yours, not in this day and age. What are they giving you for the pain at the moment? - whatever it is, it isn't enough.

Please keep posting, we are all here for you.

[JAT]

CM... oh my! From the bottom of my heart, I cannot thank you enough for responding. So - I'm not crazy?!? I reside in southeastern Wisconsin, 1 mile north of the northeastern Illinois border. We moved here 5 years ago from Illinois and all but 1 of my doctors are in Illinois (and will remain that way); the one that is here, my wonderful gynecologist, moved his practice here from Illinois about 8? years ago. On that note, countless doctors are moving their practices from Illinois to Southeastern Wisconsin due to skyrocketing malpractice insurance premiums/rates in Illinois. As for pain management, if it weren't for my primary care physician, at best I would've been institutinalized years ago. I'm on heavy-duty pain medications, a muscle relaxor (Zanaflex - prescribed by my oncologist and the only medication prescribed outside of my pcp's practice), Xanax, breakthrough pain med (Vicoprofen), and Vicodin-ES. I have have been on these medications for waaaay too long; hence being "labeled/red flagged" by other so-called physicians and I'm certain my insurance carrier as a "drug-seeker." The latter is nothing but the furthest from the truth. I do not nor have I ever "doctor shopped" for pain medications, after moving here I tried to fill my prescriptions here (Wisconsin), but was treated as though I was street junkie and therefore transferred my medications back to the pharmacy in Illinois who fully understands pain and knows that I do not abuse them. Additionally I have NEVER taken more than what is prescribed even though often it seems like I might as well be eating Rice Krispies; I have been obtaining my prescriptions from the same practice (other than the Zanaflex) for years and have followed the recommended dosage to the letter, trying as often as I can to take less. Some years ago my pcp asked me to go to a pain management specialist (brilliant pharmacologist) for a consult and possible recommendations; he is directly connected with a large teaching hospital in Chicago (Rush University). He recommended a long list of medications, one of which I was very hesitant about (Fentanyl patch)... After numerous discussions with my pcp, and knowing I had absolutely no quality of life, she prescribed the patch and everything else the pharmacologist suggested. If it weren't for the two physicians realizing I was in desperate need of their help... I wouldn't be able to function - at all. If some of the above text is discombobulated and/or repetitive - I apologize - I'm worn out. I have an order for physical therapy, but due to business activities which I can barely - if at all - keep up with, and multiple doctor visits and/or tests, I haven't been able to follow through on that - yet. I now also have a suspicious mole on my nose that needs to be looked at immediately and I'm overdue for my annual mammogram scheduled for this coming Tuesday; I was diagnosed with stage I breast cancer about 10 years ago and need to get that done as well. From what I read on your post, you're about to undergo procedures yourself, and, very soon. I wish you the very best of luck; hoping and praying you will get the relief you need.

Again - thank you so very, very much for your support and suggestions. Speaking of suggestions, I just ordered the TOGU AIRGO Active Seat Cushion, the information of which I found on this website. It's coming from Austrailia (Amazon was out of them); that item cannot arrive too soon.

Please stay in touch...

I hope and pray all goes well for you.

TT

[JAT]

Calluna - Thank you so very much for responding. I'm somewhat shocked that people are responding at all, but - quickly. I so very appreciative - you have no idea (or maybe you do).

The medications that I'm on are: Fentanyl patch (25 mcg), Vicodin ES, Vicoprofen for breakthrough pain and to keep the possible negative affects of the Vicodin - down, Zanaflex (4 mgs tabs/twice a day - muscle relaxor), Xanax for the obvious anxiety; if one's pain level is high that increases your anxiety level which in turn causes the pain medication to not work as well or not at all (vicious circle), so, that obviously works in conjunction with everything else.

I do have a diverticulum - transverse colon. For some reason, and I try on a daily basis to try and figure this out, but the trapped gas (lower) seems to aggravate the back, pelvic, and genital area pain that I described earlier.

Bowel movements: Sometimes the action itself (or lack thereof) either worsens the pain or lessens it. I dread going to the bathroom. From years of being constipated however, I have had to strain to the point I thought I would stroke-out as often have the sensation that my colon has not emptied completely and drives me insane; hence - straining which I know has made matters worse. With that being said; I do my best to NOT strain and take whatever concoction I can up with. On that note, I have found that Triphala (herbals) seem to do the trick - I've been taking that for years... 3 capsules at bedtime. Laxatives are a last resort. Since taking the Triphala, I rarely have the need for a laxative, of which I use Fleet suppositories which generally work within a few minutes.

Question: Regarding bowel movements - has anyone noticed and/or tried leaning backwards on the toilet and/or squatting to "stimulate" peristalsis and subsequent bowel movement/s. That has worked for me many, many times. If you "Google" toilet and sitting... you'll get a number of hits indicating that sitting is actually totally wrong for producing a more comfortable bowel movement. Just my 2 cents on that note.

Again - thank you so very much for responding.

TT.

P,S. I just read about a seat cushion on this site; The TOGU AIRGO Active Seat Cushion which I just ordered; unfortunately Amazon is out of them and had to order from Australia. I'm hoping that will help.

[calluna]

Hello TT - you'll find this is a very supportive and helpful forum. I've had a lot of help and support here myself in the past, it was so wonderful to know that there were people who understood and didn't think I was overstating things. There are members all over the world, different time zones, you see - I'm in the UK - and you'll find more people looking in later on, I'm sure. There are many people on here who are much more knowledgeable and with more experience than me.

Wow, coincidence about the diverticular issue! - well I guess you know what that is all about, and I know how that feels too, I can tell you!

Couple of things you've just mentioned - lots of us find that bowel movements are a major pain trigger, so you're not alone there. Also getting constipated is a big no-no with PN, it makes it worse, pressure on the nerve you see. So you're not alone there either. Just what we want, isn't it, with diverticular problems going on, which send us either one way or the other....!

Take what you need to, in order to keep things moving. Absolutely no straining, it puts pressure on the nerve and may even contribute to PN. Movicol/Miralax is good stuff. They use it on the stroke wards, it is safe for long term use. Please be very careful not to take too much fibre, stuff like Fibogel can really make things worse if the constipation is of long standing. Triphala I haven't come across, but you might want to think about changing it around if you've been on it for some years - that's a long time. Squatting - yup, know about that. Only problem is, squatting is horribly painful. But if it works for you, and it doesn't hurt - well, do what you need to do!

That seat cushion is just so good. I have one - actually we have two, and one lives in the car. I avoid sitting like the plague - as should you - and only sit with that cushion. I hope it helps you too!

Your list of pain meds - one thing stands out a mile. You are not on any meds for neuropathic pain - it doesn't respond to normal pain meds. So there's something where there is a lot of room for improvement. Have a look on the main website here, lots of info. I've been trying different things for 2 years now, lyrica (pregabalin) is a magic pill as far as I am concerned, nothing else has come close. It is pricy, unfortunately, so they'll probably want you to try gabapentin first - that's good too, for lots of people it works like magic. And amitriptyline or nortriptyline are both good too.

Getting late here, I shall be on again in the morning! Hope you have a better night, tonight.

[JAT]

Hi Calluna.

For the first time I can actually say that I'm smiling, and for that, I thank you and this group. I'm thanking my lucky stars that I discovered this group of wonderful people. I've been "lost in the shuffle" for so long - very lonely when people, be it physicians, family, or friends who cannot relate and/or write you off as a psych case.

I believe it was one of your posts which I just happened to have "landed on" via Google in which I read about the cushion. I purchased one yesterday and I'm anxiously awaiting its arrival. Unfortunately they're currently not available in this country (USA) - its coming from Australia. So on that note - thank you - I cannot wait to try it. I will say it was tempting to order more than one, but thought that if it didn't help I'd be throwing our money away, so, I decided to play it safe.

Sitting: Very problematic. I'm a medical transcriptionist - have been for over 30 years, and you sit for hours on end. Additionally I'm business partners with my husband (bookkeeper) - more hours sitting. So - I'm praying that that cushion helps.

I'm in full agreement with you with respect to my medications - hence for one, my current path/journey. Thus far within the last month I've been to my rheumatologist, had a great deal of blood drawn to rule out autoimmune disorders/syndromes/diseases. Those lab results are negative - thank goodness. Next step is physical therapy - ugh. Been down that road before, but not with this possible diagnosis - so - we'll see. In the meantime, I've got a disturbing looking mole on my nose and have an appointment to get that looked into plus the alopecia, and, my yearly mammogram of which I'm bit concerned about. I've had stage I breast cancer (10 years ago) and there's a problem that I'm a bit concerned about on the contralateral breast, so that appointment is looming over my head. I'm trying to keep my head up and be hopeful... one step and one day at a time. Hopefully at some point in the not too distant future, and I'm sure once I go through the PT, different medications will be addressed. My rheumatologist had asked me if I had ever tried a certain drug - unfortunately I don't recall what that drug was that he mentioned, however, my answer was no. So we'll see.

Regarding the constipation - part of my problem is that I also have reactive hypoglycemia and, I'm a bit of a type "A" personality, i.e., I ignore my hunger which is a huge no! no! So - if one doesn't eat, or eats very little - passage is a bit "interesting" to begin with; I'm adding insult to injury (no pun intended). Ever since I had my initial laparoscopy which entailed "taking/tearing down" the adhesions and freeing up my sigmoid colon from my left ovary and left pelvic sidewall, any time there is any amount of stool in that area I feel as though I'm about to jump out of my skin. I was informed many years ago that I probably have nerve damage to that area as a possible result of surgery and/or adhesions, and/or endometriosis. With that being said, I unfortunately have done a great deal of straining and a number of other things, and again, adding insult to injury. The triphala has been very, very helpful in that regard... here's a link for those that might be interested in learning a bit about it: http://en.wikipedia.org/wiki/Triphala. For those that may want to try it - note: it can be a little difficult to find. With that being said, your best bet is a reputable health food store. If they don't have it or don't have knowledge of this product, inquire; they should be able to obtain it for you.

Thank you so very much for all of your information, comments, and support. On that note, I'm a bit too needy at this point in time and I imagine I may seem/sound selfish... If I'm coming off as a selfish individual - I apologize. I would much rather be on the other side of the coin in which I can offer support, information, et cetera. Unfortunately I'm not there yet... on the flipside however, as I continue to read and post I imagine there will be some things that I will be able to contribute.

Again - thank you!

Well... I'm off to work - hi ho, hi ho. God help me get through 8.5 hours of sitting!

Wishing all of you the most pain-free day feasible...

[JAT]

Calluna... I forgot to ask something: Regarding the retching, vomiting... have you found anything that helps you in that regard? Also, I have one diverticula located in my transverse colon; my gastroenterologist never mentioned anything about whether or not that would or could cause nausea, retching, and/or vomiting. Any comment? Many years ago I was also diagnosed as having a sliding hiatal hernia; interestingly though, since that time I've had numerous upper endoscopies and that hasn't been mentioned since which I find odd. Just curious.

Okay - have to get ready for a painfully long night of work... (3:30 p.m. to 11:00 p.m.) - OUCH!

[calluna]

Well, its good to hear that you're smiling! You aren't alone, you know, there are lots of us. We're just not living near each other, that's all.

I wonder why Amazon stopped selling that cushion. It was donstore on this forum who originally recommended it, and I know he is in the US. I bought it on his recommendation and I have not been disappointed. But lifestyle changes are really important, using a cushion is just part of the whole deal. You still need to avoid sitting as much as you can. Maybe you could work standing up? Have a look in the Seating and Physical Lifestyle Changes section, there are some threads there that I'd think might be of help to you. Truly, even with the cushion, you cannot sit all day.

It is really pretty important that the issue of your pain is addressed sooner rather than later - if the pain goes on for too long, then the pain gate gets 'stuck'. Please don't leave it until after you've been through PT.

And no, you don't come across as selfish, not at all. Having PN is so difficult, especially at the beginning. And all of us have days when we get down.

Re the nausea etc, the only thing I've found that helps is ginger. I take a small piece of crystallised ginger and eat it very slowly, in tiny bites. Also, hot weak tea with no milk is nice. I've got quite a few diverticula, they are a right nuisance. I get nausea often when I start to eat, and when the pain is bad, sometimes I think it is because of the pain... hard to tell. It started with the first bout of diverticulitis and it has not really gone away. Anyway, ginger is good!

Hope your day goes well!

[Laura]

Hi Jat,

So very sorry for your condition & everything you have had to deal with. I'm new to PN and this website so I don't have a lot of knowledge to share with you. One thing I can tell you though is there are a lot of knowledgeable and empathic group of folks here. Calluna is one of them! I have to agree with her about not sitting. You have to find away around it. I can't imagine sitting as long as you do.
So funny but I have diverticulosis too and have had many infections from it. In fact I think that it might been a contributing factor plus a few years of chronic constipation.
Please don't feel alone.