Trouble w/ doctors & people in general because you look "young and healthy"

[VCNJ84]

Hi ladies...

I am new and just needed to vent.

I have been in unexplained vaginal pain for 2 months now. Been wrongly treated and tested for all the usual suspects.

Two possibilities for what I have are Vulvdynia or IC/another bladder issue. The appointment with the official V doctor isn't until May 5 :cussing:. But I am getting to see a Urologist this Tuesday.

Part of me is excited to tomorrow's appointment, hoping I can get help. Another part of me is scared because I am afraid they won't find anything / won't believe me/ etc. and I will be back at square one.

I cry inside b/c I am in so much pain and doctors seem to take it lightly. One time before these more serious conditions were being considered...and i was still thought to have a bad UTI or YI (later negative)...I told the doctor

"You don't understand...I can't sit!"

and her answer was

"You're sitting right now."

I wanted to hit someone or just cry. I had to explain that while yes, technically I can sit...I am in PAIN PAIN PAIN every second I am sitting.

I am not even sure what the point of my post is anymore....I guess I just feel rejected by doctors and by getting compassion from certain people because of my external appearance.

If one more person says "You look fine" I will scream. I haven't even had a common cold in almost 2 years! This is like a curse.

I feel helpless...like no doctor my team trying to find the answers. :shake:

Sorry for the rant...thanks for listening.

[katie87]

I know exactly how you feel! I look young and healthy too! it is so frustrating. I hope you find some quality care asap!

[ICNDonna]

I hope you get some help from your new doctors.

:grouphug:
Donna

[VCNJ84]

Thanks ladies!!

I think even just typing the post made me feel a lil better. Sometimes you just need to let off steam.

[SharonA]

Vent any time you need to. (((Hugs))) We used to have a Smilie that was a screaming face. It said it all in situations like these. I really am sorry that you were not taken seriously. It can be so frustrating, sometimes. I hope this new doctor will be the one to help you.

[Han]

Just wanted to say i know exactly how you feel about doctors. Im 22 and although ive been having symptoms for years i have only just been sent to see a urologist....who is being equally as slow.
Every doctor i have explained my symptoms too have just said oh dear have you tried taking regular pain killers. I just wanted to scream at them!!!!!
Venting does seem to help i am finding and its a lot easier to do on here with people who understand so dont be afraid to vent away.

xxxxxxx

[VCNJ84]

Just wanted to say i know exactly how you feel about doctors. Im 22 and although ive been having symptoms for years i have only just been sent to see a urologist....who is being equally as slow.
Every doctor i have explained my symptoms too have just said oh dear have you tried taking regular pain killers. I just wanted to scream at them!!!!!
Venting does seem to help i am finding and its a lot easier to do on here with people who understand so dont be afraid to vent away.

xxxxxxx

Ugh I know I hate when people suggest obvious things!

My first trip to the Uro went pretty good the NP is a sweetheart...she believes me and has lots of ideas for what might be wrong with me.

The doctor wants me to have an ultrasound to check my kidneys and then have me come back before he diagnoses me with any kind of bladder condition...so the journey is definitely not over...but so far, of all the many places i have been, these people have been BY FAR the nicest.

She assured me that when I do meet with the doctor he has a lot of experince with chronic vaginal and urinary pain and he won't make me feel crazy likes others have.

I say keep fighting til you find a doctor who will help you. I was IN TEARS after my last ER visit b/c the nurses were soooo mean and I think one was making fun of me...but the ER doc was the one who gave me the name of this Urologist where everyone is friendly so far. I guess it all happens for a reason.

[icnewlywed]

:pray:Vent all you need to! I think most everyone on here has been where you are. I am 24 and have had ic since 17. It is hard when you look fine on the outside to have others understand how bad you hurt on the inside. Only my mom and husband can tell when i'm in pain b/c i get this wrinkle in my forehead. It is there so much these days I'm going to have botox for it by the time i reach 26 ::loco:

I feel like unless i'm crying hysterically others don't take my pain seriously. I think after months of pain you also develop a high pain tolerance.

i hope your doctor visits go well and you are able to get some relief soon.

Sending warm thoughts your way :pray:

[JennyBird]

Just so you know...my doc said the average age of IC onset is 17-25, so you are not alone! She also told me that out of all the cystos (under anesthesia in the hospital) she has conducted in the past year, only 2 have been negative for IC. that's alot of young people with IC.

I had my first flare at 16, but never knew what it was and it just kind of went away after a few months. When I was 25 it popped up again, and this time it didn't go away. I'm now 28 and feeling so much better-not perfect but better. I went through numerous doctors (4 uros, 3 gynos, 2 vula-vaginal specialists, 2physical therapists, etc...) before I found doctors that took me seriously and found the treatment plan to worked for me. And in my case, I'm getting treatments from 3 different doctors who are working together. One is a uro-gyno, another is a speicalist in vulvo-vaginal disorders, and the other is my amazing accupunturist. I even called my uro-gno in tears 2 days before my wedding with horrible bladder pain and she did everything she could to get me better before I walked down the isle...now that's a great doctor!!

I can completly relate to what you are saying in your post. I've had the same things happen/said to me as well. I went through some really bad flares in the past 3 years and did feel hopeless at times. It will get better....there is a light at the end of the tunnel. You have to just keep going to new doctors until one takes you seriously and you get the right treatment that works for you. And don't be afraid to try alternative therapies, like physical therapy or accupuncture!

[dverba]

As you can see over 351 people have viewed you post. what that tells you is that we all know just what you are feeling! There is really no words to comfort, or at least not for me. This is how it is. I have to remind friends all the time when they get upset because I change my mind about going out or seeing a movie. I think our friends and family could not handle knowing we hurt and seeing we hurt all the time.

[LithEruiel]

Yes, I'm very frustrated too. I was having chronic yeast infections and symptoms of IC for five months (before I was diagnosed) and went to numerous doctors (including the ER and Urgent Care) because I was going crazy. They all just basically blew me off because it was "just a yeast infection" or because I just had a UTI and the pain "would go away on its own." Well it didn't. I finally had to travel 3 hours to my home town (I'm from a small city and was living in a big city) and go to my old doctor before I got any help.

People tell me all the time that I am "too young" to have health problems or to be on so many prescriptions...what does that mean? Babies and children have horrible medical problems, why is 25 too young? I lost my health insurance last October because I had to quit my data entry job because I had carpal tunnel and I was turned down by numerous insurance companies due to my IC, carpal tunnel and asthma. Everyone I told was shocked because I'm "young." At the time I was going to a psychologist because I was so upset about what was going on (my boyfriend had also basically dumped me because I was sick all the time) and she said "I didn't know you could be turned down for insurance at your age" and she basically told me I caused my IC from stress and depression even though she didn't know what it was and I had to explain it to her. She also told me it would go away when I got over my ex b/f. That was really helpful...

Thanks for letting me vent :)

[Zygala87]

Ha someone told me rather nasty when I pulled into a disabled parking place (I have a disabled tag) that I look great and very well. I told them my monkey who drove me here was unable to get my wheelchair out of the car for me. I have MS on top of the IC. People can be stupid. You seem to be the same age as my Granddaughter. I am so sorry for all that you are dealing with. Saying a Prayer that you get the help you need ASAP. Hugs, Ziggy