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New to chronic pain/any ideas?
Hello everyone! I have been sort of lurking on your forum for a little while now. Reading all of the posts, and can see that there are some people on here who have great advice! I don't know that I have a question yet, but would like to hear any input on my situation. I have been on medhelp for a few years, but only on the pregnancy and the maternal and child forums.
I have been experience pain for quite some time now, so I do believe I fall into the chronic pain patient category, unfortunately. A little background, I have had 4 pregnancies within 5 years, which have resulted in 3 beautiful little girls and one miscarriage. Unfortuntely for me, I have had 3 c-sections and a D&C. Needless to say, my body is tired! I also had a laparascopy right after my last c-section and an incisional hernia repair. I thought all was well, but now I just don't know what to do anymore.
For the past 6 months or so, I have had moderate to at times severe menstrual type cramps. No period since I'm still nursing my 15 month old. When I first started having the pain, I figured my cycle was trying to kick back in gear. Nope, not happening. Oh, I did have a tubal ligation at the time of my last birth. I have gone through all kinds of tests trying to get to the bottom of why I hurt so much all the time. I have had 2 ultrasounds, 1 ct scan and a diagnostic lap. Nothing. One ultrasound indicated I have Adenomyosis. I'm wasn't thrilled, but was glad to finally had what I thought was a diagnosis! My gyn however disagrees with the report. She said you can't get a diagnosis of Adenomyosis via ultrasound. So, just in case that is what I have, she had me get a mirena IUD. I can't even begin to describe the agony I've been in since getting it! It hasn't even been a month, and I want it out! My cramps are even worse then before, I'm spotting now and my mood swings are insane.
I also asked about medications. My Gyn really doesn't want to treat me for pain with meds. My next step with her is hysterectomy. I am pretty much maxed out on ibuprofen. She told me if I need other meds, then she would send me to a pain clinic. I feel that is a bit premature, since I don't have an "official" diagnosis yet.
Oh, I did ask my general surgeon at the time of my recent lap if it could be adhesions. He basically told me he doesn't beleive that adhesions cause pain. So when he told me everything looked fine, I haven't a clue if that means I look fine to HIM, but may still in fact have scar tissue.
I have been fortunate to have an amazing psychiatrist, who I have been seeing for 5 years or so. He has been managing my pain right now with some meds. I have some tylenol 3 and if my pain is worse I can take up to 2 vicodin per day. I don't take these at the same time obviously because I do know they both have tylenol in them. He is also trying to help me fine a new Gyn for a second opinion.
Wow, this is really long. I'm going to leave it at that for now, but if anyone has any thoughts or ideas, please let me know!
I have been experience pain for quite some time now, so I do believe I fall into the chronic pain patient category, unfortunately. A little background, I have had 4 pregnancies within 5 years, which have resulted in 3 beautiful little girls and one miscarriage. Unfortuntely for me, I have had 3 c-sections and a D&C. Needless to say, my body is tired! I also had a laparascopy right after my last c-section and an incisional hernia repair. I thought all was well, but now I just don't know what to do anymore.
For the past 6 months or so, I have had moderate to at times severe menstrual type cramps. No period since I'm still nursing my 15 month old. When I first started having the pain, I figured my cycle was trying to kick back in gear. Nope, not happening. Oh, I did have a tubal ligation at the time of my last birth. I have gone through all kinds of tests trying to get to the bottom of why I hurt so much all the time. I have had 2 ultrasounds, 1 ct scan and a diagnostic lap. Nothing. One ultrasound indicated I have Adenomyosis. I'm wasn't thrilled, but was glad to finally had what I thought was a diagnosis! My gyn however disagrees with the report. She said you can't get a diagnosis of Adenomyosis via ultrasound. So, just in case that is what I have, she had me get a mirena IUD. I can't even begin to describe the agony I've been in since getting it! It hasn't even been a month, and I want it out! My cramps are even worse then before, I'm spotting now and my mood swings are insane.
I also asked about medications. My Gyn really doesn't want to treat me for pain with meds. My next step with her is hysterectomy. I am pretty much maxed out on ibuprofen. She told me if I need other meds, then she would send me to a pain clinic. I feel that is a bit premature, since I don't have an "official" diagnosis yet.
Oh, I did ask my general surgeon at the time of my recent lap if it could be adhesions. He basically told me he doesn't beleive that adhesions cause pain. So when he told me everything looked fine, I haven't a clue if that means I look fine to HIM, but may still in fact have scar tissue.
I have been fortunate to have an amazing psychiatrist, who I have been seeing for 5 years or so. He has been managing my pain right now with some meds. I have some tylenol 3 and if my pain is worse I can take up to 2 vicodin per day. I don't take these at the same time obviously because I do know they both have tylenol in them. He is also trying to help me fine a new Gyn for a second opinion.
Wow, this is really long. I'm going to leave it at that for now, but if anyone has any thoughts or ideas, please let me know!
Ok, I spoke to my sister in law last night about all of this. She is a nurse, so I do trust her opinion, and she actually works in oncology so obviously with people who have major pain. She told me that I am wrong about the extended release meds. That they have a much easier time weaning people off of those then the short acting meds. The long acting ones have a steady release of med instead of the up and down you get from the short acting ones. Does this sound correct? Maybe I'm afraid of the longer acting meds for no good reason after all.
Thank you everyone for your responses and insight. I am still building up the courage to call a new gyne that I found through my insurance. They only deal with gyn problems, they do not deal with obstetrics, which is good I think. My doctor is great, but she deals mostly with pregnancy. I still feel as though I am "cheating" on her in a way for seeking a second opinion. I do trust her, but get the sense that she just does not have the time to be finding answers for me. If I do truely need a hysterectomy in order to be pain free, I am ok with that. I just want to make sure I know everything I need to know before making that decision. I mean, it is yet another abdominal surgery, so I would hate to make things even worse in hopes of making it better. At the same time, something has got to give. I can not live like this anymore. There are days I can barely walk the pain is so bad, and just getting out of bed is an effort. Its not fair to my children, my husband or myself.
Jaybay, you gave me a lot to think about. I will request the surgeons report, it will probably be something I will need anyways for a new doctor to look over. As far as pain management doctors, I am sort of scared to go that route. My psych has told me that if the pain meds he gave me don't work well enough that I may need to go on a longer acting med for the time being. I'm sort of scared of that, as I was reading on her a day or so ago and someone mentioned that those were considered hard drugs. The way my doctor explained it was that it would be just a low dose of something that is extended release, which may cover my pain better with less pills. I can't find the post or 2 that I saw people talking about it now. Anyhow, if it is considered a hardcore drug, I'm not sure I would want to deal that right now.
Anyway, thank you all for the help! I will keep posting as I start finding my way with my doctors!
Jaybay, you gave me a lot to think about. I will request the surgeons report, it will probably be something I will need anyways for a new doctor to look over. As far as pain management doctors, I am sort of scared to go that route. My psych has told me that if the pain meds he gave me don't work well enough that I may need to go on a longer acting med for the time being. I'm sort of scared of that, as I was reading on her a day or so ago and someone mentioned that those were considered hard drugs. The way my doctor explained it was that it would be just a low dose of something that is extended release, which may cover my pain better with less pills. I can't find the post or 2 that I saw people talking about it now. Anyhow, if it is considered a hardcore drug, I'm not sure I would want to deal that right now.
Anyway, thank you all for the help! I will keep posting as I start finding my way with my doctors!
There IS a great deal of disagreement in the medical community about adhesions and pain. The scar tissue itself has no nerves, so by itself it is not painful. What IS painful is when it pulls abdominal structures out of their normal place or interferes with the normal movement of intestines causing partial or full obstruction.
Adhesions, like endometriosis are both diagnosed and treated through laparoscopy. Not all general surgeons are great at dealing with endo implants either. Your best bet is for a gynecologist to handle it if that's the problem. The opposite is more true where adhesions are concerned. If a bowel resection is needed due to the adhesions a gyn will have to call in a general surgeon anyway. I had one surgery with both a gyn and a general surgeon for endo, adhesions and an appendectomy. Seemed like everyone and their dog had hands (and paws!) in my abdomen on that one. LOL
Your gyn is right that adenomyosis and endo (and adhesions for that matter) can't be diagnosed via ultrasound. Adenomyosis is endometriosis embedded deep in the walls of the uterus. Over time, the uterus gets big and boggy and that means lots of cramps and heavy bleeding. Nobody knew I had it until my hysterectomy when my uterus got sent to pathology. It takes a uterine biopsy to diagnose adenemyosis.
Having a hysterectomy was the hardest decision I ever had to make in my life. I tortured myself for years trying to conceive and bleeding like a stuck pig for years before I finally gave in. As it turned out, I don't miss that stupid uterus one bit and feel like a right eejit for waiting so long. LOL! It's a tough decision for a woman. I don't exactly know why - there's far worse things that could happen and HAVE happened to me for that matter. At least I got to keep my ovaries so I didn't have to deal with hormone replacement.
If your gyn is willing to send you to pain management, why not give it a try? A pain doc might have something to offer that will help while you try to figure out what's causing the pain.
Ask your general surgeon for a copy of the operative report. I have often discovered far more work was done by reading the report than what the surgeon actually discussed with me. Don't worry about getting any flack from the office. That's a perfectly common request. With all the abdominal work you've had done, adhesions are certainly a possibility that shouldn't be ignored. Unfortunately, like endometriosis scar tissue doesn't show up on imaging studies which makes laparscopy both a diagnositic and treatment procedure. It can be difficult to find a surgeon - gyn or general - to do surgery without some kind of test to justify it.
I really hope you feel better soon. :-)
Adhesions, like endometriosis are both diagnosed and treated through laparoscopy. Not all general surgeons are great at dealing with endo implants either. Your best bet is for a gynecologist to handle it if that's the problem. The opposite is more true where adhesions are concerned. If a bowel resection is needed due to the adhesions a gyn will have to call in a general surgeon anyway. I had one surgery with both a gyn and a general surgeon for endo, adhesions and an appendectomy. Seemed like everyone and their dog had hands (and paws!) in my abdomen on that one. LOL
Your gyn is right that adenomyosis and endo (and adhesions for that matter) can't be diagnosed via ultrasound. Adenomyosis is endometriosis embedded deep in the walls of the uterus. Over time, the uterus gets big and boggy and that means lots of cramps and heavy bleeding. Nobody knew I had it until my hysterectomy when my uterus got sent to pathology. It takes a uterine biopsy to diagnose adenemyosis.
Having a hysterectomy was the hardest decision I ever had to make in my life. I tortured myself for years trying to conceive and bleeding like a stuck pig for years before I finally gave in. As it turned out, I don't miss that stupid uterus one bit and feel like a right eejit for waiting so long. LOL! It's a tough decision for a woman. I don't exactly know why - there's far worse things that could happen and HAVE happened to me for that matter. At least I got to keep my ovaries so I didn't have to deal with hormone replacement.
If your gyn is willing to send you to pain management, why not give it a try? A pain doc might have something to offer that will help while you try to figure out what's causing the pain.
Ask your general surgeon for a copy of the operative report. I have often discovered far more work was done by reading the report than what the surgeon actually discussed with me. Don't worry about getting any flack from the office. That's a perfectly common request. With all the abdominal work you've had done, adhesions are certainly a possibility that shouldn't be ignored. Unfortunately, like endometriosis scar tissue doesn't show up on imaging studies which makes laparscopy both a diagnositic and treatment procedure. It can be difficult to find a surgeon - gyn or general - to do surgery without some kind of test to justify it.
I really hope you feel better soon. :-)
Hello Houseofgirls,
Welcome to our Pain Mangement Forum. You have your hands full with small children and coping with pain.
I absolutely agree that you should seek a second opinion. There are many possible causes for your pain that I think need to be sorted out.
I did some reading on diagnosing endometriosis. It is true that an ultrasound, can be helpful in ruling out other pelvic diseases and may suggest the presence of endometriosis in the vaginal and bladder areas. However it is apparently not definitive in diagnosing endometriosis. It takes a laparoscopy to actually visualize the entire area to be certain of a diagnosis. They also usually biopsy the suspect tissue.
I have been told by multiple physicians, including surgeons that scar tissue or adhesions can be very painful. I assume there are some disagreement on this in the medical community though I have not found it.
I hope you will continue to drop in and not just lurk. I will look forward to hearing about your search for answers. Best of luck to you.
Take Care,
~Tuck
Welcome to our Pain Mangement Forum. You have your hands full with small children and coping with pain.
I absolutely agree that you should seek a second opinion. There are many possible causes for your pain that I think need to be sorted out.
I did some reading on diagnosing endometriosis. It is true that an ultrasound, can be helpful in ruling out other pelvic diseases and may suggest the presence of endometriosis in the vaginal and bladder areas. However it is apparently not definitive in diagnosing endometriosis. It takes a laparoscopy to actually visualize the entire area to be certain of a diagnosis. They also usually biopsy the suspect tissue.
I have been told by multiple physicians, including surgeons that scar tissue or adhesions can be very painful. I assume there are some disagreement on this in the medical community though I have not found it.
I hope you will continue to drop in and not just lurk. I will look forward to hearing about your search for answers. Best of luck to you.
Take Care,
~Tuck
Welcome. There are many nice people here. I'm so sorry that you have chronic pain. I don't know anything about your diagnosis, so I can't really help, but I wanted to say "welcome."
I'm relatively new here too.
Flower
I'm relatively new here too.
Flower
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