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Post by jessabug on Aug 28, 2014 8:44:24 GMT -5
Hi all, Many of you don't know me so I'll start with a brief introduction. My name is Jess, and I joined the board almost 4 years ago when I was first diagnosed with endo. After two laparoscopic surgeries (one electrocautery; the other was excision by Dr. David Redwine), my quality of life improved significantly and I drifted away from the boards. Some of you might remember me, though -- at the time, I had built close relationships with several of you! As of late (let's say the past year or so) I've still been doing well overall, but unfriendly endo symptoms have been cropping up here and there. Nothing unmanageable, though. That said, back in February something really strange occurred. For quite a while now, I've had an unusual soreness in my navel from time to time. I want to say it's been about a year. I have my belly button pierced, and always attributed it to that. It was never an intense pain; more of a dull ache, like a spider or other bug bite. But here's the weird part: one night in February, it was especially sore. I kept waking up to the soreness, and it was uncomfortable to sleep. In the morning, it bothered me so much that I checked my belly button, and found a growth inside of it the size of a pea. I named it Pete. I think I did it to keep myself sane. Who knows. I saw several doctors, none of whom had a solution and all of whom told me to "keep an eye on it" (except one, who told me that my "innie" had become an "outie" and that I should take anxiety pills if I'm worried about it). As I'm sure many of you understand, this irritated me like no other, so I stopped seeing doctors and trying to figure out what was wrong with me. Since then, Pete's been doing some bizarre things: He turned purple, fluctuates in size, and only hurts sometimes. He's firm, and he's really ugly. This morning, this article was posted to my news feed: www.ncbi.nlm.nih.gov/pmc/articles/PMC3006115/It's about something called umbilical endometriosis, which I have never heard of before in my life. Apparently, it is most likely to happen after laparoscopy, and my hazy understanding of what happens is that it grows through your scar tissue and surgical site. From what I read, it sounds exactly like Pete, but I'm hesitant to believe that I could be in that 0.5-1% of women who present with this issue. I know it's a shot in the dark, but have ANY of you experienced this? Or does anyone know more about this phenomenon? Or have advice? Thanks ladies! Nice to "see" you again!
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terceltina
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Post by terceltina on Aug 28, 2014 17:05:39 GMT -5
Hi jessabug, good to meet you. I'm new to endo myself, but I'm not new to the feeling of being talked down to by doctors. I empathize with being told 'it's just anxiety', and the more I seem to understand about health, and the more I talk to doctors when I have a journal of symptoms, temperatures, etc, the more they say I just had anxiety and stress. It's a strange double standard.
From the article you posted, there is more than enough correlation for me to think that the doctors should consider umbilical endometriosis, and with the symptoms and descriptions, I think most doctors would be happy to assist in diagnosing. Unfortunately, I've run into this a few times, that doctors take men more seriously than women, when it comes to the 'lumps and bumps', figuring we're too vain and sensitive. I can't get a mole checked out for skin cancer, but my boyfriend gets an appointment for a cosmetic removal in a week for his mole? Yeesh. Unfortunately, I'm not a doctor, and all I can do is offer support, and hope that you're able to find a doctor who takes this seriously. I know it can be hard to keep on fighting, when it takes time, and money, and people don't understand, but your health is worth it.
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Post by omaklackey on Aug 29, 2014 13:08:24 GMT -5
Hi Jess, It sounds more like you have an umbilical hernia. I have several myself because I have had so many surgeries. They don't always see them on CT scan because they move, and it sounds like yours moves a lot. Mine acutally caused a SBO obstruction a few years ago. It concerns me that yours is getting "purple" as it could suggest a strangulated hernia which is very serious and needs to be treated as an emergency. In the meantime I would suggest finding a general surgeon to talk to, hopefully one who works with an endometriosis specialist so they can make sure its still good in there. I know your in Colorado so I don't know if it would help but Dr. Pai works with Dr. Mosbrucker here in Washington with Franscican womens health.
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Post by jessabug on Aug 30, 2014 11:31:43 GMT -5
Hi Terceltina, it's nice to meet you too! Welcome to the endo life... I hope you're doing alright, learning to cope! It's definitely disappointing to be told that things in your head. I have "self-diagnosed" countless times because doctors wouldn't help me, and every time I have been right. That says a lot, doesn't it? I hate Googling things as if I'd have a better understanding than trained practitioners, but obviously nobody else seems interested in doing their job. (Sorry for the bitterness, guys, and obviously that statement excludes each and everyone of you who are actually working to be a part of that world to truly make a difference; I'm just grumpy about the 9 out of 10 doctors I encounter who brush people like us off!) Anyway, I hope you're advocating for yourself as much as you can! Omak -- Hi!! Hope all is well with you. I'm glad you brought up the umbilical hernia, as I forgot to mention that in my post. I don't disagree with you, but here's the kicker: I saw 3 different doctors, all of whom told me that this is NOT an umbilical hernia. They weren't even interested in running tests. Their reasoning was that when it is touched, poked, prodded, pressed, etc., it is very firm. I think I didn't do a good job of clarifying: Pete does not move -- he's as stationary as they come. Always very firm. However, he swells. When pressed, this nodule/lump thing doesn't shift under the pressure or move in and out. It's hard as a rock, no matter what stage (swollen or not swollen) it's in. The doctors I saw insisted that an umbilical hernia would respond to pressure by moving. What are your thoughts on that? Has your opinion changed now that I've shared this info? Thanks for your insight! Nice to hear from you. Oh, ps -- I'm actually in Oregon. Nicolle is in Colorado. I don't think she uses the boards any more. Thank you though!
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Post by chibineko717 on Aug 30, 2014 11:56:00 GMT -5
Jess, I agree with Omak to see a general surgeon. Since Redwine retired, who is your endo doctor? I just saw Dr. Mosbrucker a couple weeks ago and she is training a new surgeon! Dr. Pai got her own office across the hall from Mosbrucker, so her number is different now.
I have issues with my bellybutton too, but it has not turned into a lump. Do your other surgery sites swell sometimes? Maybe your scar tissue is acting weird.
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terceltina
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Happy, and now with 4 cats.
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Post by terceltina on Aug 30, 2014 13:40:42 GMT -5
Hi Jessabug,
On my surgery site, there is some tough hard tissue that has developed under the skin near an incision point. It reminds me of when I was bitten by a small dog. The bite didn't break the skin, but the injury caused a solid hematoma for 5 months. Although yours doesn't sound like a hematoma at all. It sounds like it could be a hernia too, actually, reading omaklackey's response.
I think the main thing is, finding medical help that will actually be helpful. I'm from small town Canada, so I'm not sure how easy it is to find doctors in your area. In my area, it's a 2 hour or more drive, waiting at a free clinic that you may never get in, or , if you're lucky, you have a family doctor which is very rare. And the family doctor will only be in town once a month maybe.
Does anyone know if that talk to a doctor online thing actually works? I heard that people might be able to use ipads or something to talk to doctors online. That would at least increase the pool of doctors available, and make it less work to see them.
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Post by jessabug on Aug 31, 2014 0:00:17 GMT -5
Thanks for the responses, ladies!
Chibineko -- I don't have an endo doctor any more. Unfortunately, I've had sort of a bad string of luck lately. Firstly, a little background: I live in Eugene, Oregon, and my parents live in Bend. That's why I was able to see Dr. Redwine so easily. After I lost him, the best alternative I could find was a very wonderful OB/GYN who specialized in endo. He retired about a year ago, at the same time my dad lost his job and we lost insurance. After that, I got my own insurance through my work but the plan was too expensive for me to afford specialized or regular treatment. I've seen a handful of different docs in the area, but was disappointed by all. If you've heard of anyone in the Bend/Eugene/Portland area, please let me know!
As for my surgery sites, nope -- they don't swell. Only my belly button, in this one specific place. It's a dark purple/reddish nodule the size of a large pea and it's all I've got! Might also be worth mentioning that I had my surgeries back in 2011, and this developed only 6 months ago.
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Terceltina -- Interesting to hear about your incisions. I totally agree that it could be a hernia, but am confused as to why three separate practitioners would tell me otherwise. I still can't get over the nurse practitioner who told me that my innie is becoming an outie! What a doofus.
I know it's tempting when you feel so awful, but I'd be cautious with online doctors. You can take their thoughts and recommendations into account, but should absolutely still find someone to talk to in the flesh to get a real diagnosis or prescription for something. Tests are often needed to get to the bottom of things!
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Post by omaklackey on Sept 1, 2014 23:40:17 GMT -5
Still sounds like an umbilical hernia to me... Sounds very similair to mine. You said you "test". Did they do like my idiot PCP in Feb. (keep in mind my multiple hernias are well documented surgical hernias). He placed his hand on my belly and had me sit up. "Nope, you don't have a hernia". I just laughed and said, "yes I do, they are in the surgical report". Stupid. Anyways, can you go outside your area with your insurance for specialist like Dr. Mosbrucker in Washington? She is in Gig harbor and that's maybe 2 or so hours from Portland. They can show up right after surgery, or several years later. Mine are always rock hard, usually don't move (one doesn't the others do sometimes). Like I said, they won't necessarily show up on a CT but its a good test to start with.
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terceltina
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Post by terceltina on Sept 2, 2014 12:12:43 GMT -5
Unfortunately, doctors can still be idiots. Several years of training and education can't fix when someone just doesn't have enough caring in their system to want to help people. Has anyone ever gone into a car dealership and had the employee not want to sell them a car? Yeesh.
CT scan sounds like a really good idea. What about trying to get referrals for scans and things from other types of medical professionals? Like ask if your chiropractor or massage therapist will write you the note to get some scans done. I find them a little more compassionate sometimes, and less burnt out.
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marta
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Post by marta on Oct 14, 2014 11:10:46 GMT -5
It's about something called umbilical endometriosis, which I have never heard of before in my life. Apparently, it is most likely to happen after laparoscopy, and my hazy understanding of what happens is that it grows through your scar tissue and surgical site. From what I read, it sounds exactly like Pete, but I'm hesitant to believe that I could be in that 0.5-1% of women who present with this issue. Hi all What you have Jessabug sounds exactly like what I've got. It has been residing in my belly button for the last 11 months. Doctors have been treating me for a skin infection for the first 4 months and I only had it diganosed in May after one clever dermatologist said she has seen it before in a patology department. Had a biopsy which confirmed the diagnosis and I am now awaiting my gyno appointment. Never had endo before but it runs in my family. Pete is defo an endo! Good luck!
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