Sharp Pulling Pain in Belly Button - Part 2

Hello! Sorry for my radio silence! So it’s actually now ten months post surgery and still...so far so good! I can say that I have not had the pain since. I’ve been in situations that would have been likely to bring it on in the past (dehydrated, twisting etc), and I’ve also felt twinges in my stomach that would normally have led to the pain, but it still hasn’t happened, which is VERY reassuring. I can’t say for sure but I’m cautiously optimistic that this surgery has fixed me. That it would fix all of us. I really, truly recommend it for everyone. I want to sing it from the rooftops, so more people can be helped, but i also want to be 100% sure before i do so and the only thing that can do that is time. I will check back in in a couple of months. My fingers and toes are crossed. I’m still dealing with the anxiety of thinking it might come back and in learning to disassociate mild twinges in my stomach with “danger”, which is taking time, but I’m slowly getting there. Everything you described in a previous post, regarding the fact you haven’t actually had the pain in a while but that it hangs over your head each and every day, is 100% what I had experienced. It’s such an intensely agonizing pain when we did get it that I honestly think it is traumatizing, so that less severe attack’s provoke such an extreme reaction from our body.
How are you doing by the way? Any more luck with finding a surgeon?! keep fighting it! I think you can fix this!!!

Hey, I have written an update in a separate post which you can read (above!).
Re your questions, no relation to penis as I am female!
But yes, definite relation to hydration. I found I would often have episodes after a very big night out, where I had drank a lot and was obviously very dehydrated. The surgeon also said this could be a trigger too for the urachas if dehydrated/stomach muscles tight etc. I can’t say that every time I was dehydrated I got the pain, and I sometimes got it when I was very hydrated, so it’s not clear cut, but there’s definitely a relationship there. My triggers were dehydration, repetitive twisting movement (eg if I did a yoga session the day before), and particularly bloated/inflamed stomach, digestion generally off (maybe gas etc caused swelling of intestines which irritated urachus?)
Let me know how you are going we the surgery!

Talk soon,

*** PLEASE READ *** I KNOW WHAT THIS IS *** AND I KNOW HOW TO FIX IT!!! ***
NOTE: I am not a doctor or any kind of medical professional – so please ALWAYS check with your doctor as you might be suffering from something different. But…
Ladies and Gents – I HAVE THE ANSWER!
I am writing this post because I promised myself that if I ever found out what was wrong with me, I would come back to all of these forums where I spent hours scouring for answers, and share the path to freedom with all of you.
First, let me just say that what you’ve experiencing is not “nothing”. It’s not “in your head”. It’s REAL. I (literally) feel your pain. And, like you, I know what it’s like to have doctors look at me like I’m crazy.
Before I go into my story, I’ll share with you what you really want to know – what the hell is going on in your body?!
Are you ready for it…?
Okay, here it is: URACHAL REMNANT DISEASE.
Ever heard of it? Neither had I. But it’s a real thing! And the reason most of us are undiagnosed or misdiagnosed with it is because it’s incredibly rare and difficult to figure out, as sometimes the only symptom is the horrible pain we are all way too familiar with.
QUICK LESSON:
The urachus (or urachal remnant) is a fibrous cord that runs from the top of the bladder and connects with the bellybutton. Its how urine was released from our bodies when we were in the womb. Now, for most people the open channel (urachus) closes before birth and becomes a vestigial cord with no real purpose or function – it’s just there. Sometimes it even obliterates into nothing. But for those of us who have this remnant, there’s all sorts of things that can go wrong with it – most of which become apparent sooner rather than later. For example, sometimes the channel doesn’t close properly, and babies end up with discharge out of their bellybuttons. Other times, like with all of us, there’s no physical symptoms until we feel THAT pain (the sharp pulling pain when trying to pee, the one that drops us when we try to stand up straight, the one that scares the sh*t out of us), at which point we usually see a doctor who has no idea what we’re on about.
Now, lucky for me, I have a great doctor. She told me about this urachal remnant and said that if I see a specialist, they should be able to go in and snip it out. Easy peasy. I had ultrasounds, CT scans, a cystoscopy, a colonoscopy, an endoscopy – you name it, I’ve had it. But because there was no physical sign of anything being “wrong” (like a cyst or an opening of the channel) the specialists I saw basically threw their hands up in the air and said “I don’t know what’s wrong with you. There doesn’t appear to be anything abnormal.”
I was crushed – and forced to abandon my quest to fix the problem because I thought there was no hope. I turned to naturopathy and herbal remedies – none of which worked.
And for about 3 years I gave up the chase for a solution. I was deflated and feeling hopeless because nobody wanted to help me. But every time that pain returned – which was fairly often – I just kept saying to myself “There has to be a way to fix this. I shouldn’t have to live like this. I can’t live like this.”
Then one day I came across this: [“…Because urachal remnant diseases are uncommon and manifest with nonspecific absominal or urinary signs, and symptoms, definitive presurgical diagnosis is not easily made…”]
I went back to my fantastic doctor – this time armed with more knowledge and more information – and pleaded with her to actually help me find a specialist who was willing and able to help me. Even better – find one who had experience with this type of thing before. She was only too happy to help.
A few phone calls/emails later and we’d landed a Urologist who was keen to see me. This man was kind, compassionate and understanding of my frustration. After hearing me out, he decided to send me for more scans, which revealed a small umbilical hernia. I was then referred to a hernia/colorectal specialist who – after a simple phone call and description of my symptoms – decided that the best course of action was to remove the urachal remnant via laparoscopic surgery (keyhole surgery) and while he was in there, he wanted to take a look around and make sure there was nothing else lurking beneath the surface that we had to deal with.
I was so relieved and so scared at the same time, but I knew I had to do this. I had to have the surgery and get my life back. It all happened very quickly. I was on the operating table a couple of months later and as they say – the rest is history. The surgery went great. He removed the urachal remnant in its entirety and also repaired the umbilical hernia – which accounted for some of my other pain/symptoms.
That was almost four months ago, and although it’s still early days, I’m so pleased to say that I am now all healed up and completely pain-free. No twinges, no sharp stabs – nothing! Just a healthy, happy body. Based on my research, patients who have this surgery experience no further symptoms – EVER – and go on to live completely normal lives.
So if you’re dealing with this absolutely horrible situation and you’re feeling alone, or like nobody wants to help you – my advice is simple: DON’T GIVE UP! Take control, like I did, and don’t take “I don’t know” or “There’s nothing wrong with you” for an answer. Find yourself a good doctor who will listen to you. Arm yourself with knowledge. And tell any specialist who looks at you like you’re crazy, to figure it out if they don’t agree with you, because that’s their job.
I am based in Australia. The specialist who performed the surgery is based at Greenslopes Private Hospital in Brisbane – but any specialist of the same kind could perform this surgery.
I hope that by finding this post you can take some comfort in knowing there IS a light at the end of the tunnel. I am living proof.
Feel free to share this with anyone you know who is also struggling with this weird and awful condition!

_removed_

I 100% AGREE- IT IS A URACHAL REMNANT! Thank you for your wonderful post... I could not agree with you more! I have posted a few times on this forum, both whilst looking for an answer and later when I thought I had found it. I had surgery almost 1 year ago to have the urachal remnant removed. Like you, nothing was showing up on scans and no one had any idea what on earth was wrong with me, however after almost 20 years of investigations I finally found a very clever GP who suspected it might be this and referred me to an open minded urological surgeon. While nothing showed up on scans, he agreed it did sound like it was the Urachus and said he would operate if it was what I wanted (I was willing to try anything and it was the first diagnosis that made sense!). I got a second opinion to be sure and this urological surgeon also agreed. I think here it is important to clarify that there was nothing technically wrong with my Urachus in any scans or tests. I had a remnant, yes, but there was no cyst or opening. This point is key, because I think a lot of people (and in fact doctors) assume that this must not be the problem is there isn’t a typical remnant disease per se, and they won’t operate unless they can see an abnormality. However it absolutely still can be the problem! The Urachus could just be “tight”, abnormally bundled in nerves, etc.

Anyway to cut a long story short, I had the surgery almost one year ago now and I haven’t had the pain since! The pain was exactly what everyone here has described.

I am also based in Australia. To the person whose post I am replying to..I wish there was some way I could contact you to compare notes, stories, and figure out a way to jointly get the message out to the medical world. Any ideas?!

To everyone out there...you CAN fix this! There is no need to live with the excruciating pain anymore.

Please see a urological surgeon. Print out these posts and take them with you!

Hi!!!!!
So good to talk to someone who's been on the same journey as me!
I thought I was alone for so long. And it's very encouraging to hear you're still going well a year after surgery.
Yes, excellent point - there was nothing 'wrong' with my urachal remnant either. It was even sent away for testing after it was removed and found to be completely normal. That's why I had multiple specialists refuse to operate because they simply could not justify cutting me open unless they were sure it would work. My referring urologist even said "I am 100% certain that having your urachus removed will not fix the problem" - which made it a very hard decision to go under the knife when I finally found an open-minded surgeon who was willing to do it. Even he couldn't guarantee success. I was so afraid I'd wake up and it would be even worse! But I was at my wits end and just couldn't imagine living my whole life afraid of this thing. I'd researched for years and - like you - decided that this was literally the only thing that made sense. Point was: pain and/or inflammation was travelling along that channel SOMEHOW.
I decided to go for it and I am so f*cking glad I did!
My stomach feels so different now. where I used to feel twinges and random stabs (in between the really painful episodes we've all described) I now feel...nothing. Certainly nothing resembling the old, awful pain AT ALL. It's just gone. poof!
At first I was very un-trusting of it. Like I was just waiting for the pain to return. It hasn't - and I'm confident it won't because now there is literally nothing connecting my bellybutton with anything. My surgeon even took pictures of my insides to show the before/during/after pics of what the thing actually looks like, and how my bellybutton looks on the inside now that it's gone. Very interesting!
I finally feel free to just live my life like a normal person - and I'm so glad I found this thread because you all have the right to experience this freedom too.
Not sure how we can contact each other besides on here, but now that we're talking I'll definitely be checking in now and then.
I'm saddened to see so many people suffering with this. Seriously guys --- get the word out! THIS CAN BE FIXED!

Hello, thank you for your time. I'am very grateful and happy for you! I have an appointment coming in november with newfound urologist. She seems to be open minded and very skilled, so maybe its my hope. I will add your story to my little "file" and print it and see what she thinks.

I too was thinking about spreading word about this issue, but first and foremost I need to fix myself finally. Thank you again for bringing some hope to my life!

Thanks for your super quick reply! Our stories are so similar. My urachal remnant was also sent away to pathology after the surgery and it was a typical fibrous, remnant tissue- confirmed as a “urachal remnant” but no inflammation/cyst/patency etc. So technically nothing wrong! My surgeon was also never certain that it was the remnant causing the sharp, pulling pain...in fact, he said he thought there was only a 30/40% chance that the surgery would cure me (because he wasn’t certain that is what the issue was, because it was so odd and he’d never had anything like it before)- he said wanted to be honest about that before cutting open a young, healthy individual, which I appreciated. It was actually him who suggested I get a second opinion, and the second surgeon I saw seemed even more confident it was Urachus related, given my symptoms, which gave me much more confidence...although he still hadn’t seen anything like it before. These kind is statistics though (30-40%) show that only extremely desperate people would go ahead with a surgery that was such an unknown...but anyone like us who has experienced the pain knows that we would try absolutely anything to possibly fix it. It is the most excruciating, life-altering pain I have every experienced, and seriously impeded my quality of life (although episodes were rare, I never knew when they would strike and I was often sore and twingy even when not having a bad episode). I also think we have a lot of intuition with our body, and as soon as I read up on the Urachus, it just made SENSE. A sharp, pulling, ripping pain from belly button to bladder. Like a string. Fibrous chord. What else? I knew it straight away.

My surgeon could see how upsetting it was for me, and how determined I was to take the punt...that I was an intelligent, informed person who was making an educated choice about my body, and he also couldn’t think of another explanation for the type of pain I was describing, or of any other structure besides the Urachus that would cause that type of pain. He just literally had never seen it before! I’m so grateful he did it for me. I was also, like you, terrified that it would somehow make it worse. I was accepting of the fact it might not make it better, and I was ok with that, because at least I’d be no worse off and know I tried everything. But in the end I decided I had so much to potentially gain and so little to lose that it was worth the try. And I am also so, so glad I did, because honestly I truly think it worked. I was so hesitant for so long to confidently say it did work, because I have gone months before without an incident, but it’s almost been a year now and that’s never happened. And like you, it just feels different...there is no heavy pulling sensation anymore. Because there’s nothing tethered to our belly buttons! It just makes so much sense.

On your point about the referring urologist telling you he was 100% it wasnt the Urachus...I also wanted to add that I actually saw a surgeon a year before my most recent op, who also said it definitely wasn’t the Urachus...in his opinion, I had a small hernia or umbilical sinus issue, and he said that he was 100% sure he would fix me with surgery for this issue (noting that I was referred to him from my GP for a possible urachal remnant which he disregarded). I had the surgery. It didn’t fix me. Within a couple of months I’d had the pain again. He never looked inside to check the remnant and said I just had an infected sinus which he fixed. So I guess my point is...what do statistics even mean? He said he was 100% sure he would fix me and he didn’t. My surgeon who actually did fix me said he was 30% sure. To me that was actually more reassuring, because there wasn’t that blind confidence.

This is also an important point for anyone reading, because it’s possible you will be told it’s something else and misdiagnosed, but keep pushing! One thing I learned from this was that we really have to be our own advocates. No one else will be. It’s an issue that truly baffles the medical community. Even my surgeon still doesn’t understand why it caused me pain. He thought it was probably just abnormally “tight” or tethered in a particular way, and when I was dehydrated, or the muscles around it were tight, something happened that pulled it and caused the agony. But he still doesn’t have an exact medical reasoning for it. My dream is that one day, medical journals will be filled with cases like ours where this mystery pain so many of us experience has a very easy, clear and fixable explanation. My plan is to try and write to all the surgeons and doctors involved in my case, for better or worse, and tell them what it was and that i’m fixed, because you never know what other patients they’ll see either similar symptoms, or what colleagues they’ll talk to, or what they may write down....that might just help even one other person.
I’m so glad I found this forum...Good luck everyone!

Yes, absolutely -- the desperation is what pushed me to make the decision also. Believe me, the idea of surgery scared me..but the alternative (i.e. living with this awful condition for the rest of my life) was far worse to contemplate.
What you said here: [["It is the most excruciating, life-altering pain I have every experienced, and seriously impeded my quality of life (although episodes were rare, I never knew when they would strike and I was often sore and twingy even when not having a bad episode)"]]
I felt exactly the same way - like I could have written that myself!
It was a terrifying pain that words could not describe. When doctors would ask me how often it would act up I basically told them it could act up once every ten years and it would still be too often. Because it's not just the pain that impacts your life - it's the FEAR of when it will strike that truly held me back from living my life the way I wanted to.
So ridiculously glad I don't have to think about it anymore! I'm seriously counting my blessings.
Yes it feels completely different in my tummy now. Everything is just comfortable. I keep having thoughts like "this must be what NORMAL feels like" haha.
And you're right. Unfortunately you have to be that person demanding to be cut open because they just won't do it otherwise. But it is so worth the effort guys!
For curiosity's sake...can I ask your age? I'm a 29 y/o female and had been suffering my whole life since childhood. How long was it for you?
Thanks so much for the chat! And please keep us all up to date on how you are doing.
I know I will.
P.S - Excellent idea about touching base with your past doctors to let them know what became of the 'mystery' case.

All the things you have written, I feel I could have written myself! I am 33 years old and female also. The first time I remember getting the pain, I was about 8 or 9, and I remember it so vividly as it was absolute agony...the bent over double, can’t even lie or stand straight or the ripping string pain would tear through my body. From then onwards, I would probably get the pain about 4 or 5 times a year. It used to really frustrate me because the infrequency of it meant that people didn’t really “get” why it was such a big deal and why it seemed to control my life, because it was seemingly so infrequent,...but just like you, I lived with the fear every second of every day. And so many days, I would get the very slight pulling feeling and twinge...that feeling in and of itself wasn’t earth shattering, however as soon as I felt a twinge I was terrified it would progress to the bad pain...sometimes it did and something it didn’t. Either way though it ruined my day. And sometimes the terrible pain came completely out of the blue...stand up and BAM! Pee and BAM. I definitely had more good days than bad...but exactly as you said the FEAR was more potent than the pain itself, just as you have said. I feel like I always carried myself carefully and differently to avoid pain or in fear of it. This frequency continued more or less throughout my teens, and then probably by early twenties it had subsided slightly in terms of severity and frequency...but I still got it just enough to keep me terrified, and had even more days where I felt uncomfortable and twingy, but I didn’t get the really bad pain nearly as much. Like you, I had every test under the sun when I was young... saw gastro specialists, pediatricians, gynecologists etc...but never went down the urology path. I think it took we a while to to articulate it well and make the peeing connection (which makes no sense in hindsight but to me it happened randomly in all sorts of situations, not just peeing, so I never focused on the that). I’d have times where I was investigating it for months on end, then years where I would give up and think I had to live with it. Then after a particularly bad overseas trip when I was 29, I thought, enough is enough! That’s when I started to do more research again and told my doctor I just had to find a solution. I wanted to try and look at it through a new lens. And the rest is history! Is your story at all similar to this?

Sometimes I’m still slightly worried it’s too good to be true and still feel scared sometimes that it will come back...but I know it has worked. It’s just trying to relearn over 20 years of pain memory and what I think might be a bit of pain ptsd (sounds dramatic I know, but I know anyone who has had his pain at its worst gets me!). I have to remind myself when I stand up that I will be ok. My body is slowly realizing this...and I am just so happy I have fixed it...I honestly thought I would live with it forever. Out of curiosity, did your surgeon (post surgery) give you any indication of why the remnant caused the pain that it did? Not that the “why” even matters, or that anyone can ever really know given how mysterious pain is, but I’m curious if he had any theories!
Also, another weird question, but do you have a particularly deep belly button? It seems from reading other posts that people experiencing this have innies, and I wonder if there is something in this (and given you had a small hernia also, and I had a weird shaped belly button that led to what my first surgeon called a “sinus!”).
It’s great having someone to compare notes with :-)
Thanks for the chat!

My story is so similar we could basically call it identical. Makes me wish I'd found this thread BEFORE the surgery - just for the support and to bounce ideas around with other sufferers. But I'm here now and I'm okay with the fact that I had to make the journey alone. It certainly made me a stronger person, and I have so much more trust in my own intuition when it comes to my body instead of nay-saying doctors. Fact is - doctors can be (and often are) wrong!
I am also having to un-learn years and years of pain memory. Just peeing like a normal person was hard for me at first - always half expecting excruciating pain at any moment. Being able to stretch out on the couch or first thing in the morning is something I'd never been able to do...or wear a pair of snug jeans...or have a fun night out with friends having a few drinks...all of that stuff I'd closed myself off to because it was just not worth the risk. I honestly feel like a new person with a new lease on life!
My surgeon did not have any real theories on the urachus - just that the pain was a symptom that was worth going in and taking it out. He thought perhaps the small umbilical hernia was instigating it somehow...but couldn't be sure. Neither of us can be sure of anything - except that I just KNOW it's gone now. The pain isn't coming back...because there's literally nothing there now. I just need to train my brain to believe it too!
Yes I have a really really innie belly button! Very deep. SIDENOTE: It looks a bit different now since the surgery. Like I can tell someone has been in behind it messing around lol it curves differently now. I kinda like it...reminds me that it happened!
I agree, it's nice to chat so someone else about it - especially someone on the other side of surgery like me.

Hey again! It’s bizarre how similar our stories are, and I’m certain there are so many other sufferers out there experiencing the exact same thing. I just hope they stumble across this thread...thank god for the internet, hey, otherwise I don’t think I would have ever figured it out! We are also so lucky we are in a place where we have access to good medical care and options for our health...which a lot of people don’t have. I will never forget to be grateful for that.
Anyway, what you were saying about not wearing snug jeans, or stretching out on the couch, or going out drinking with friends...is all EXACTLY the same as me! I feel like we are the same person in so many ways when it comes to this damn pain :-) I NEVER wore anything tight around my stomach for fear it would trigger the pain...even now I’m fixed it’s still a lingering phobia, and I don’t know if I ever will wear anything tight on the tummy. I also have had to be incredibly careful about bending, twisting, stretching etc. Whenever I have joined a yoga or Pilates class, I’m always the one that can’t “twist” because I’m worried it will trigger the pain, and any time I twist around in a car or to pick something up, I would worry it might bring on the pain. I also have never been able to drink excessive amounts of alcohol, because this would also be a trigger for the pain the next morning (dehydration?). It also affected decisions I would make about what activities I could do...for example, the thought of a day trip or hike out and about without being close by to a car or transport would terrify me, in case the pain struck and I was immobilised! It did strike on a few occasions overseas when I was in tricky situations and it was awful...then there’s that panic of how do I get out of this situation...I can’t stand straight...how do I get to a safe space?! I feel like the fear of the pain was this black cloud lingering over everything I did, every decision I made, so I found myself doing less and less “adventurous” things for fear of the pain (although these things are just normal, but for me they were “danger zones”). I would have certain things that were “safe” activities. It’s crazy how much this pain which was seemingly infrequent really overtook my life and each and every decision I made. I still think that is something no one but me (and perhaps other sufferers) will every really “get”.
It’s going to take some time to re-learn all these behaviours and thought patterns, and I’m so hyper-sensitive to any sensation in my stomach because of all the pain trauma, so now is the time for me to really focus on the re training my brain and accepting my new healthy body! And being able to share our stories and recovery is so helpful in that, so thank you! Because it’s a pretty lonely thing sometimes :-)

On your side note, my belly button was super innie too and, yes, it also looks different now! I also have a few small scars on my tummy which aren’t very attractive but remind me what I’ve been through and that I’ve been fixed, so I don’t totally hate them! I would have LOVED to have seen before and after shots of it all, like your surgeon showed you, as I think this would have helped me to be able to effectively picture the changed mechanics of my body...what a great idea of your surgeon! Although my googling has helped me understand how it all works :-)
It also would have been great to have had someone to talk to post surgery, which also wasn’t much fun (dare I say the...catheter...word?!). But I would do it A THOUSAND TIMES OVER, IT IS SO WORTH IT!!!

Hey --- wow, it truly is bizarre how similar our stories are. Kinda freaky really! But so nice to be talking with you.
Again I was exactly the same, avoiding anything I didn't consider 'safe' enough just in case the pain struck. It was awful because it really alienated me from social activities and I didn't even bother trying to explain it to my friends. You're right - other people just don't 'get' it.
The alcohol was a big trigger for me too... in fact, a lot of my episodes happened in my late teens/early twenties because that was when I was going out drinking the most. And so often the next day I couldn't just be hungover like a normal person - I got agony! I did yoga and pilates classes over the years too, but again, had that monkey on my back telling me to be extra careful. Damn it feels so good to be rid of all that now! :-)
My surgeon was fantastic. He called to check in a few weeks ago and told me I could exercise and do whatever I wanted to do now, and although I've taken things nice and slow, I'm really trying not to limit myself. I'm getting more 'daring' with everything...stretching out a bit more in the mornings...lounging about on the couch...even wearing tighter clothes...and still I feel fantastic. No pain at all. It's surreal - but it's wonderful!
I went out to the races last month. Wore a skirt tight around the belly...had a few drinks...had a dance...all the 'normal' things one does on a night out...woke up fine the next day.
Would you believe I never had a catheter?!
I got up and took myself to the toilet just a couple of hours after surgery. It was soooooo sore because the pain meds hadn't quite kicked in yet, but because they'd pumped me full of fluids I couldn't wait. Let me just say that was the most crucial pee of my life! I walked (*hobbled) into that bathroom with pure dread because it was the moment I would know whether or not it had worked. Lots of post-op pain - but not the old pain. It was a huge relief.
I have a few little scars from the keyhole surgery too. I've been putting coconut oil on them every day since surgery and they are fading really fast so feeling pretty good about that. It's weird but I almost hope they don't disappear completely. They are a reminder of the surgery and how far I've come.

After reading your stories I realy hope that my appointment with newfound urologist will finally led to removing this sh!t from me. I too have identical stories from my past decade of pain.
Most of my life decisions were twisted because of fear of ending up hunched over in pain. I'm glad that atleast I know how to "avoid" it, but sometimes it feels like my own body is a prison...

Stay strong my friend! I know exactly how you feel. But the good news is that now you know WHAT it is...that is 90% of the battle already fought. It was the not knowing that led us all to be trapped with this mysterious pain. At least now you know for certain how to fix it. I wish you so much luck for your appointment with your urologist. And you know what...if they don’t want to operate, then keep looking until you find someone who does. You’re almost there...sometime very, very soon you will have sorted this out and you’ll be pain free, so don’t forget to feel happy and positive about that! My fingers and toes are crossed for you!

Sending you all the positive vibes for your appointment!!!
I personally saw 3 other specialists before I found one who was open minded and actually listened to what I was saying - so don't get too disheartened if this one doesn't work out.
Keep pushing for what you want. You'll get there.