How do I help my friend solve her mysterious abdominal pain issue?
July 7, 2011 9:04 AM Subscribe
How do I help my friend solve her mysterious abdominal pain issue?
She's had a hysterectomy and then later an oophorectomy but continues to struggle with a lower left quadrant pain. She's had colonoscopies (in the wazoo) which have revealed nothing. She has actual lumps in her abdomen. I felt one and thought, "Uh, what is that? That is not a lipoma. There should not be a lump the size of a walnut there. And there are more of them?" Fibromyalgia is possible, but, while real, it also seems to be place to shove idiopathic-thus-far pain issues.
I am worried about her because it is affecting her work, her relationship, her parenting, her sex life, and pretty much everything. She's only thirty and has been hurting for nearly five years. She's gone from carrying weight she did not want to now being a little bony and the weight loss continues. She is out of energy to deal with this sort of thing and frequently states her exhaustion (which is obvious from her posture, gait, expression, skin color, etc.).
She has been disappointed in her last three physicians. My physician is no longer taking new patients and has not yet replied to a letter asking him for referrals to other physicians he trusts. I am fine with cheering her up and whatnot but that has not solved her ongoing problem. I have a chronic condition, know how draining continual pain is, and how much relief of just having a name for it (and being able to build attendant disease-specific coping strategies) can be. I'm usually good at identifying avenues for exploration but I'm stumped.
She's had a hysterectomy and then later an oophorectomy but continues to struggle with a lower left quadrant pain. She's had colonoscopies (in the wazoo) which have revealed nothing. She has actual lumps in her abdomen. I felt one and thought, "Uh, what is that? That is not a lipoma. There should not be a lump the size of a walnut there. And there are more of them?" Fibromyalgia is possible, but, while real, it also seems to be place to shove idiopathic-thus-far pain issues.
I am worried about her because it is affecting her work, her relationship, her parenting, her sex life, and pretty much everything. She's only thirty and has been hurting for nearly five years. She's gone from carrying weight she did not want to now being a little bony and the weight loss continues. She is out of energy to deal with this sort of thing and frequently states her exhaustion (which is obvious from her posture, gait, expression, skin color, etc.).
She has been disappointed in her last three physicians. My physician is no longer taking new patients and has not yet replied to a letter asking him for referrals to other physicians he trusts. I am fine with cheering her up and whatnot but that has not solved her ongoing problem. I have a chronic condition, know how draining continual pain is, and how much relief of just having a name for it (and being able to build attendant disease-specific coping strategies) can be. I'm usually good at identifying avenues for exploration but I'm stumped.
She should look into a MIGS (Minimally Invasive Gynecological Surgery) clinic and see someone there. A regular OB or GP is not going to be enough here. She needs someone more specialized.
I had abdominal pain for nearly a year, and it took see a really wonderful MIGS specialist to determine that maybe lidocaine patches would do the trick. A year of pain, and then three weeks after using the patches, it was gone.
If you are anywhere near Boston, the doctor I saw was truly excellent and I would be more than happy to pass her info. along to you.
posted by zizzle at 10:01 AM on July 7, 2011 [1 favorite]
I had abdominal pain for nearly a year, and it took see a really wonderful MIGS specialist to determine that maybe lidocaine patches would do the trick. A year of pain, and then three weeks after using the patches, it was gone.
If you are anywhere near Boston, the doctor I saw was truly excellent and I would be more than happy to pass her info. along to you.
posted by zizzle at 10:01 AM on July 7, 2011 [1 favorite]
Sounds like endometrosis and although unusual, fibroids. Definately go to a MIGS.
posted by stormpooper at 10:27 AM on July 7, 2011
posted by stormpooper at 10:27 AM on July 7, 2011
Response by poster: Well, she's gone through the endo bit so far. Last May, in the waiting room, the surgeon even showed me various photos of her abdomen, from the inside, from numerous angles, and she was endo-free at the time (apparently the hysterectomy and associated endo tissue removal was successful).
Can you get fibroids in the abdominal wall?
posted by adipocere at 10:30 AM on July 7, 2011
Can you get fibroids in the abdominal wall?
posted by adipocere at 10:30 AM on July 7, 2011
Can you get fibroids in the abdominal wall?
I don't know about fibroids, but I think it's possible for endometriosis to grow in the abdominal wall. I remember reading that after abdominal surgeries endometrial cells can spread to other places and grow there, causing endometriosis in weird places. This is why people who have had c-sections have an increase chance of endo after the surgery even if they've never had it before.
The thing with endometriosis is while it goes way, it can also come back.
I wouldn't rule it out.
posted by zizzle at 10:42 AM on July 7, 2011
I don't know about fibroids, but I think it's possible for endometriosis to grow in the abdominal wall. I remember reading that after abdominal surgeries endometrial cells can spread to other places and grow there, causing endometriosis in weird places. This is why people who have had c-sections have an increase chance of endo after the surgery even if they've never had it before.
The thing with endometriosis is while it goes way, it can also come back.
I wouldn't rule it out.
posted by zizzle at 10:42 AM on July 7, 2011
My father had some similar symptoms--unexplained weight loss, fatigue, pallor, lumps in the lower abdomen--and it turned out to be Non-Hodgkins Lymphoma. So don't forget to think beyond gynecology. Sounds like your friend needs an excellent internist who will take every one of her symptoms seriously. Any doctor who doesn't take that kind of weight loss very seriously is not worth a plate of beans.
Do you know any nurses? They usually know who the best doctors are, and are sometimes willing to tell you.
I don't think fibromyalgia has any likely relevance here. When a doctor offers that as a diagnosis, it's usually a way of saying they have no idea what's making you feel lousy, but if you take one of these expensive drugs maybe you'll feel a little bit better and go away. The signs and symptoms you describe sound nothing like fibromyalgia.
And please submit your address to the Nobel Committee so they can send you your Nobel Prize for Excellent Friendship. Your friend is so, so lucky to have someone who understands how exhausting it is to find the right medical help when you're feeling so sick. Best luck to both of you in getting this sorted out.
posted by Corvid at 1:01 PM on July 7, 2011
Do you know any nurses? They usually know who the best doctors are, and are sometimes willing to tell you.
I don't think fibromyalgia has any likely relevance here. When a doctor offers that as a diagnosis, it's usually a way of saying they have no idea what's making you feel lousy, but if you take one of these expensive drugs maybe you'll feel a little bit better and go away. The signs and symptoms you describe sound nothing like fibromyalgia.
And please submit your address to the Nobel Committee so they can send you your Nobel Prize for Excellent Friendship. Your friend is so, so lucky to have someone who understands how exhausting it is to find the right medical help when you're feeling so sick. Best luck to both of you in getting this sorted out.
posted by Corvid at 1:01 PM on July 7, 2011
Response by poster: Adhesions are possible. During the oophorectomy, adhesions from the hysterectomy were removed (I saw a photo of one of them, awful webby thing), but I had grilled the surgeon prior to the operation as to which of the types of adhesion-preventing barriers he was going to use on the wounded tissues; he planned on using the ones that came up as being most reliable in my limited research. I would hope that would have lowered the risk of new adhesions forming. It's something to look into.
posted by adipocere at 1:09 PM on July 7, 2011
posted by adipocere at 1:09 PM on July 7, 2011
Did the lumps show up before or after the barriers were put in?
posted by moira at 1:40 PM on July 7, 2011
posted by moira at 1:40 PM on July 7, 2011
(Sorry, I was conflating a couple of things. I doubt your friend has issues stemming from the barriers themselves. However, every entry into the abdominal cavity does create a new opportunity for adhesions to form, and I recall reading - can't find the article now - that there really are no very effective ways of preventing them. That is not to imply that the whole or even part of this problem is due to adhesions. Nthing the suggestion to go beyond the average GYN, whose scope and skill are extremely limited.)
posted by moira at 2:01 PM on July 7, 2011
posted by moira at 2:01 PM on July 7, 2011
I couldn't diagnose your friend, but it reminded me of an article I read in the New York Times about inguinal hernias in women.
posted by thinkingwoman at 4:36 PM on July 7, 2011
posted by thinkingwoman at 4:36 PM on July 7, 2011
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I'm not sure what this means. The physicians didn't find anything? Why didn't they refer her to other specialists, then? Has she seen the surgeon who did the hysterectomy and/or the oophorectomy? I totally sympathize, but the only real answer here is to see more doctors.
posted by desjardins at 9:12 AM on July 7, 2011 [1 favorite]