Endometriosis Support Group
Endometriosis is a common medical condition where the tissue lining the uterus is found outside of the uterus, typically affecting other organs in the pelvis. The condition can lead to serious health problems, primarily pain and infertility. A major symptom of endometriosis is pain, mostly in the lower abdomen, lower back, and pelvic area.
This is going to be a vent ladies. I feel I will get more out of this support group than with anyone else.
Had my appointment with my 3rd gyno yesterday and of course I was full of high hopes. I figured the last thing I wanted to hear was "hysterectomy" and boy was I wrong!!
As he interviewed me, I explain everything that is going on. This put me off a little right off the bat because I know he had my records and I filled out all kinds of paper work that had me answer all kinds of questions about why I was there. Whatever, I got over it. He gets to the "sex" questions, about how much it hurts and how long it's been since I've "been with my DH". Well of course this sets me off and I start to cry. ( Who wouldn't? ) I tell him I feel there is something else going on and I want another opinion as to what to do about the endo. I get the same answers as I have always gotten and he quickly gets through it. I explain that I am feeling a lot of pain on the left side, yadda, yadda... I explain how I what I thought was my period coming on and it turns out it's not. I'm told nothing about that, yadda, yadda... Then he gives me 2 questionaires to fill out. One is about how much I pee and how much sex hurts. The other one is to tell what my "tramatic event" is and questions about how it is affecting me. ??? I wrote about the endo and the pain associated with it.
Now he wants to give me a physical examination. He has me lay down and lifts my legs and goes into how he thinks he knows part of what's going on. I'm intrieged and interested in what he has to say. Then he says, "I think you have 'post tramatic syndrome' " I'm like WHAT?!?!?! "Have you considered seeing a phychologist? " THAT REALLY GOT ME!! I have know idea what he is talking about! I told him that I did have a motorcycle accident over 7 years ago but I'm pretty sure that I have gotten over it!!! ??? "Well, I noticed you are taking anti-depressants" yadda, yadda!!...
I don't get it. Why is this happening to me? It was like talking to a recording. He had his mind made up. Maybe it was because there was an intern there and he wanted to show off???
One thing that he will look into is "painful bladder syndrome" or IC. I really don't see that, I really don't have those symptoms other than I pee A LOT. But even then, I think it's because I DRINK A LOT OF WATER!!! He is already treating me for it before he discovers if I have it. I start physical therapy next week. Not really sure what I'm getting into. How do you receive physical therapy for pelvic pain?? Then after Christmas, I will be having a potassium tolerance test. I'm am just not sure about all of this. If it is IC, then at least I know what else is causing me pain, but it's not the pain I'm concerned about. The pain that freaks me out is on my left side, all along the torso. He wouldn't even acknowledge it. When I told him about the "gagging" sensation and how bothersome it has become, he actually "waved" it away and shook his head at me!! "I don't know anything about that kind of stuff," Well, he is no urologist either!
Thank you for letting me vent!! I really need support right now. My own mother isn't even wanting to talk to me about this and I feel like I'm going to either cry uncontrolably or .... I just don't know what to do anymore! I'm having a hard time being strong right now and I'm hoping this helps!
Stay Gold!
Had my appointment with my 3rd gyno yesterday and of course I was full of high hopes. I figured the last thing I wanted to hear was "hysterectomy" and boy was I wrong!!
As he interviewed me, I explain everything that is going on. This put me off a little right off the bat because I know he had my records and I filled out all kinds of paper work that had me answer all kinds of questions about why I was there. Whatever, I got over it. He gets to the "sex" questions, about how much it hurts and how long it's been since I've "been with my DH". Well of course this sets me off and I start to cry. ( Who wouldn't? ) I tell him I feel there is something else going on and I want another opinion as to what to do about the endo. I get the same answers as I have always gotten and he quickly gets through it. I explain that I am feeling a lot of pain on the left side, yadda, yadda... I explain how I what I thought was my period coming on and it turns out it's not. I'm told nothing about that, yadda, yadda... Then he gives me 2 questionaires to fill out. One is about how much I pee and how much sex hurts. The other one is to tell what my "tramatic event" is and questions about how it is affecting me. ??? I wrote about the endo and the pain associated with it.
Now he wants to give me a physical examination. He has me lay down and lifts my legs and goes into how he thinks he knows part of what's going on. I'm intrieged and interested in what he has to say. Then he says, "I think you have 'post tramatic syndrome' " I'm like WHAT?!?!?! "Have you considered seeing a phychologist? " THAT REALLY GOT ME!! I have know idea what he is talking about! I told him that I did have a motorcycle accident over 7 years ago but I'm pretty sure that I have gotten over it!!! ??? "Well, I noticed you are taking anti-depressants" yadda, yadda!!...
I don't get it. Why is this happening to me? It was like talking to a recording. He had his mind made up. Maybe it was because there was an intern there and he wanted to show off???
One thing that he will look into is "painful bladder syndrome" or IC. I really don't see that, I really don't have those symptoms other than I pee A LOT. But even then, I think it's because I DRINK A LOT OF WATER!!! He is already treating me for it before he discovers if I have it. I start physical therapy next week. Not really sure what I'm getting into. How do you receive physical therapy for pelvic pain?? Then after Christmas, I will be having a potassium tolerance test. I'm am just not sure about all of this. If it is IC, then at least I know what else is causing me pain, but it's not the pain I'm concerned about. The pain that freaks me out is on my left side, all along the torso. He wouldn't even acknowledge it. When I told him about the "gagging" sensation and how bothersome it has become, he actually "waved" it away and shook his head at me!! "I don't know anything about that kind of stuff," Well, he is no urologist either!
Thank you for letting me vent!! I really need support right now. My own mother isn't even wanting to talk to me about this and I feel like I'm going to either cry uncontrolably or .... I just don't know what to do anymore! I'm having a hard time being strong right now and I'm hoping this helps!
Stay Gold!
As far as IC goes...I was diagnosed with it a year ago. From what I understand from my urologist you can be diagnosed with it but it does not necessarily mean you will always have the symptoms, but "cystitis" is inflammation of the bladder and can cause bothersome symptoms such as peeing a lot and painful sex. I know I have read that it feels like you have a UTI all of the time, but I only felt like that for a short time after my last lap. It seems from the IC forum that everyone describes how it feels to have IC a little differently. I know the urologist said in order to diagnosis it you have to have "surgery" called a cystoscopy to look at the bladder. Have they considered that with you? During this test I had a bladder distention as well which helps treat the bladder symptoms.
I too have had all of my problems with pain on the left side and they cannot figure out why.
I'm sorry your mother is not being supportive.
Hugs!!!
its so ashame that they always bring up the psychologist and 'past traumatic events' (even when there were none). its only natural to cry at appointments and to be emotional but they never see it like that, i have also experienced docs having their minds made up before going in, or them looking at your old records from other doctors and not wanting to listen to you and i have had a specialist with a another intern type person there with her.
iv'e also been offered physio...
anyway, something that stood out to me was that you feel like you're getting your period when you're not... i get this constantly from my pelvic congestion, you also mentioned it being on your left... this condition is more prevelant on the left and IF it (pelvic congestion) is caused by nutcracker syndrome then it is usually the left even more so.
do you not think it could be your endo?
i feel ya!
what is interesting is that he after your examination, thinks you have post traumatic syndrome..... does he know that if a woman tightens her muscles in an examination that THAT is not the only reason for this.... that it is also because you have endo and are often in pain which naturally makes one flinch at an examination? dont you love it how they come up with their own conclusion....
i realise my post was all over the place, but im in a rush... xox !
MoonlittleMoon, I was so hoping that this doctor was going to order an ultra sound!! I tried to "plant the seed" but it just didn't "grow"! I wanted to say something so bad but you know how doctors can be in that situation. I was already "batting zero" and I didn't want to "get thrown out of the game". ( Sorry for all the analegies! LOL! ) But I guess I'll have to take baby steps. As far as the left sided pain, I'm not sure if it's endo. That is mainly why I was there and hoped for that ultra sound. From what I understand is if you are looking for it, pelvic congestion can be detected. I most definately have endo pain, I just think there is more to it, I just KNOW it.
I did start to bleed on the 10th, which I thought was the beginning of my period. The second day ( I'm sorry I don't mean to be gross ) was totally dark brown and like jello. My pad wouldn't absorb it at all, in fact, I could "peel" it off ! (SORRY!) I DID NOT get period pain, which usually will put me in bed for about 2 days. The 3rd day was dark spotting. I don't know what that was but it wasn't my period. Of course, the doctor just skated around it and "scoffed" it away.
I'm am waiting for a return phone call from my GP and I will tell her what happened. Maybe once and for all she will get me my damn ultra sound!! :)
Thanks for letting me get this out and supporting me! I really appreciate it!!
hey just a note, an ultra sound is not the best for it. go for a venography ct. and if i were you i would try taking it into your own hands... look up interventional radiologists and ring, and be aware that not all IS's know about it and treat it. make sure you ask. then try make an app.. and then get your doc to write referal. it can be complicated, but there is usually a way around it.. ahhh just give it a go.. you never know.
ps- i get the brown black bleeding too, and its gooey
xx
I am so sorry... vent any time you need to!!!
I agree with MoonLittleMoon I could've wrote this myself. I get the left sided pain really bad too and it last for several days. It's not when I'm ovulating or on my period. My pain has also been worse since my lap. I used to only have pain during my period and a little bowel trouble. Now it's symptoms ALL the time. It's frustrating. I see a gastro dr. too and no one seems to know what the constant left side pain is. Now I have weight loss, nausea, and lots of food sensitivity.
Moving on to your other comments...my gyno also suggested the IC thing and I have to get an appointment scheduled to have some testing done for that. I also have a colonoscopy scheduled.
I also feel like I'm going crazy becasue the pain drives me up the wall and no doctor seems to have an answer for me!
My gyno claims to know a lot about endo but I don't have any real proof that he is a specialist or anything. At first I felt like he was really caring, but after the lap it was like he got what he wanted, another surgery, and sent me on my way. I contacted them this week for the first time since my check up in March and his nurses were SOO rude to me. I am still pretty upset about it. Once he got on the phone he was really nice. Maybe it was just my imagination about the nurses I mean...I know they are pretty busy but I explained to them I've been in 8 days of nonstop pain and all they said was your ultrasound was normal see you in January.
I am worried when I go in January for my appointment he is going to suggest seeing a psychiatrist or something too. We endo sufferes aren't crazy!! I was perfectly normal before all this started...I promise!
Sorry I had to vent too!
Unfortunately due to new masses and growths the pain has increased and making love has become almost impossible due to my ovaries being so large from the growths and the growth where my uterus was. The pt did help but right now gotta get the growths treated. Try it and see if it lessens your pain some.
The potassium tests hurt like hell. they are also not a true indication of if you have ic. IC and endo pain can feel the same. I didnt have any symptoms of IC except the pelvic pain and painful intercourse. The CEC did a cystoscopy on me and i was diagnosed with moderate to severe IC. alot of the pelvic pain you are feeling could also be intensified by ic as well as the endo. alot of women have both and ic is also thought of as endos evil twin. The potassium test is where at first they fill the bladder via catheter with saline till you cant hold no more and they have you rate your urgency to go, pain level etc. then they drain it and put in a potassium chloride solution that BURNS. if it burns then you "according" to drs have IC. The urologist I saw in atlanta at the cec and dr sinervo both told me it was not a true indicator as many factors could cause you to feel burning and the only true test was a cystoscopy that is done under anesthesia. I would ask for a referral to a urologist and ask them to do a cystoscopy test or else ask that it be done during a lap surgery. If you do the potassium test take pain meds before and have someone to drive you home as your bladder will spasms pretty bad after atleast for me mine did. Not saying your dr was right in his assessment just giving you a heads up from someone who has went thru both. Good luck hun and I hope you get answers soon