Questions about new gyno

[Calliegirl1234]

hi all.
this is my first post here, and ive been lurking for quite awhile. you all seem quite knowledgable and know your way around cysts and laps and the like. i wont post my whole story as it can be quite long and there are things i can forget. which is why i think i need a set of records for myself, even though the receptionist at this new place has told me not to worry. i assume this is a good idea from what ive read on the board so far. i am currently 22 years old, and have had pelvic pain pretty much since i started my period. after trying several different types of birth control, pills, nuvaring, the shot, i am currently on a progestin only BC as it is the one that least affects my migraines. i had a lap done a little over a year ago, to which i believe the results were inconclusive. i remember she said i had some scarring around my bladder, and something else that i cant remember. i was just so distraught over the fact that i DIDNT have endo, something i had pretty much already self diagnosed, that the memories are fuzzy. i do have a history of cysts that have burst, but nothing much to worry about as im sure you all know. i guess im just wondering if im even going to the right place going to a clinic with a woman that specializes in women's health and pelvic pain, or waiting another month and a half to try to get into an actual gyno. i just dont want to waste time if i get in there and she tells me i just need a referral for a gyno anyway. also, im not sure what to expect from this gal as ive never had a "second opinion" before. do you think shell want to start all over and ill have to take every other form of birth control as well as several vaginal U/S before shell even think about another lap? is another lap even conceivable? or is that just something that's dependant on what the first doctor found? i mean if my records state that theres not much there, how likely is it that ill be able to get someone to do anything? im sorry if im coming across as thorough or asking questions you might not be able to answer, i am just very nervous of this appointment, as after my lap, i was pretty much tossed aside by my first doctor. its all very frustrating when you know something is wrong with you and you've been going through the steps for several years and you are almost balked at or made to seem like your pain isnt real or worth a doctors time. ]:

[ticked]

There is this one as well

Dr. Eric G. Heegaard:

An OB-GYN in the Minneapolis area. In practice now for 17 years.  

"I have always been interested in minimally invasive surgery and was one of the first Gynecologists in the Twin Cities to perform a laproscopic hysterectomy.  I became interested in robotic assisted laparoscopy in 2009 and subsequently was trained and became one of the  early adopters of this technology in the Minnesota.  My advocacy for this technology reflects what Dr. Dulemba stated above and he expresses the advantages beautifully. I currently perform most of my minimally invasive procedures with robotic assistance.  My approach to treatment and management of endometriosis and chronic pain is collaborative.  From a surgical standpoint, my goal is excision.  In the past several years, as my endometriosis volume has increased, I have created a team which involves a few pelvic floor physical therapists, a colorectal surgeon and two urologists who have interest in endometriosis.  My goal is to have everything set ahead of time, prior to surgery,  with the necessary team present or available so that, hopefully, all reasonable eventualities can be addressed at the time of surgery.  I do not manage any gynecologic problems and especially endometriosis/pelvic pain from a top down angle.  I feel like the best results come from working collaboratively with the patient and, together, coming up with an agreed upon treatment plan.  My experience has been that this approach allows the patient to feel like she is a participant in her care and not just the recipient. From my perspective, I also find this extremely satisfying."


I think this one is closure so maybe a possibility?

[Calliegirl1234]

thank you! those are quite a ways away and I'm moving to a different state in a few months. so maybe the specializes will have to wait. however, I am on tricare insurance as a dependent for someone in the military which will run out soon so I don't know. ideas to think about anyway as I at lease have an appointment. off to look up IC now.

[ticked]

No problem at all :)

When it comes to the bladder you could have Endo on the bladder or have IC (interstitial cystitis) or both. They go hand in hand with Endo.

The surgery I had last year there was carbon residue found on my bladder flap which is from the use of the laser, and it acts like a splinter so it was causing me to pee the 60x day. Now its about 20-30 which is a lot better. I had a cystoscopy about 5 yrs ago which showed no inflammation inside the bladder so they ruled out IC and also I had another one during my hyster and showed negative again. I heard that you can have it without inflammation by the IC Network as well as 3 Endo specialists so that is confusing on its own. So that is something for you to consider and to look up as well. Having a cysto done might be your first step.

The closest surgeons to you are these ones. It doesn't look like there are any in your state but let me ask around on different boards because there has to be someone. Not sure if your insurance would cover these doctors but you can call and ask.


Dr. Jeff Arrington

Ogden Clinic - Women's Center,
4403 Harrison Blvd. Suite 4650,
Ogden, UT 84403
T: 801-475-3240
W: http://gynlaparoscopy.blogspot.nl/

Specialisation: OBGYN
Bowl/urinary tract surgery:  Dr. Arrington performs his own urinary tract work and performs some bowel work (shaving of the bowel and discoid resections). Segmental resections are conducted by an assisting surgeon


Dr. Cindy Mosbrucker

Franciscan Women's Health,
11511 Canterwood Blvd.
N. W. Suite 145 Gig Harbor,
WA 98332
T: [phone]

Specialisation: GYN only
Bowl/urinary tract surgery: Does some bowel/urinary tract work. Is assisted by a colorectal surgeon.


Let me know about these ones while I continue to look for more that might now be listed.

[Calliegirl1234]

ticked,
thank you so much for your reply! even if i honestly don't end up having endo, the support that i know i can receive from this board is more than you can imagine. ive read quite a few of your replies, and i appreciate you taking the time out to reply to me as well. i cant believe all you have suffered through, but i guess that is what we have to do to get the treatment we need.
i did call to the other hospital to get records, and will be getting that in the works soon. ive seen you post info on the top endo doctors in the country and was hoping you could help me as well? i live in missoula, montana and have connections in great falls, montana as well. the part that i am mostly nervous about is i am wasting my time at a "clinic" when i could be going to an actual gyno. i just dont know much about the area here and dont know who would be best. ive asked recommendations and as you know, those can go back and forth based on different people and different issues.
i also have another question for you, is the need to pee often due to something other than endo? or the fact endo is found on your bladder? i ask because i pee much more than anyone else around me, though maybe not sixty times a day haha. but sometimes i cant even make a two hour trip without peeing twice, and peeing before we leave and right when we get there. i always thought it was due to how much i drink, and my mom has said in passing maybe i have diabetes. but the point is, this may be a symptom i have that i hadn't even bothered to mention as i didnt know it was even possible. i also have issues where i think ive emptied my bladder completely, and feel the strong urge to pee five to ten minutes later, and pee quite a bit. i also experience cramp like pain when i have a full bladder. anyway, thanks again for your reply. i look forward to talking to you again. [:

[ticked]

Welcome to the Endo Forum. I am not a doctor just an advocate and a survivor of this disease for the last 24yrs.

Okay so from what I have read this is what suggestions I would give you.

1) Get copies of all your ultrasounds that you have had as well as your surgical report. This is key. Always always keep your files so that if you do change doctors or if you have to look back on different tests you can see what has been done and you will not have to repeat the same tests over and over again. The TVUS (Transvaginal US) most likely will be the only one you will have to repeat over again to see if there are cysts, or if you have cysts to see if they have shrunk.

2) If you had scarring around your bladder that could Endometriosis. Some surgeons don't know that Endo is usually hidden within the scar tissue itself so it is a possibility that he is not a trained Endo specialist as there are many different aspects to Endo. There are different colours as well even some that are clear that an untrained eye could miss.

Let me give you an example. In 2007 I had excison (cut out) Endo lap surgery and my Endo was deep, I had frozen pelvis (kissing ovaries), 5cm Endometrioma, Sigmoid colon endo, Rectovaginal Endo and deep infiltrating Endo on the sigmoid colon and pelvic wall. All was excised. I felt great for a while but I have aggressive Endo it seems. Fast forward to 2009 I went back to that surgeon who is one of the top in Canada and he refused to do another surgery. He said I had neuropathic pain syndrome not Endo and used the "lupron" remedy as his way of saying I don't have it because it didn't work for me. So I ended up at a pain clinic with a surgeon that he trained and that he had confidence in. After a year of multiple meds she finally agreed to do a surgery. 2013 I go in and I made it clear that if there are complications take it all out. I have one child I don't want another and I have multiple issues with not only the Endo but the bowels, bladder and cervix. To be honest I was going on a limb that things were really bad because at that time I was peeing 60x a day and could only have a bowel movement using enemas. When I woke up I was hardly in any pain like my last surgery so I was thinking, "Great it was all in my head" I was told that it was superficial meaning not deep and not much endo. I was also told my ovary was embedded into the pelvic wall but it got to complicated so she pulled out, not before she nicked my uterus with a tool. So I was so confused that I could possibly feel this way if I was in that much pain.

Fast forward to Dec 2013 I wrote my original surgeon the Endo specialist about how upset I was with the treatment I had received from him since my first surgery and that he sent me to a baby doctor that knew nothing about Endo and I clearly was not being listened to. In Canada we don't have many options and where I live I got rejected for out of country surgery because my surgeon would not sign off that it was too complicated for him. Within 2 weeks I got a phone call asking me to come in because there must have been some sort of misunderstanding. I know there wasn't and that he was being grilled by the ministry of health because many women had complaints. He is a good surgeon don't get me wrong but when you have only 5 good surgeons in Canada and we as Endo advocates send women to them they stop taking patients because their wait times are way too long, months and even years so the chance of seeing someone that will help is minimal and there is nothing he can do. However my point was that I was not being properly listened to or treated.

I was booked for surgery May 9th 2014. I wanted a hyster for many reason but mostly for closure. I knew that at the end of the day Endo could still grow back and if it was minimal than the chances would be less likely for me. Little did I know that the last surgeon that he trained didn't have a clue what Endo looked like as I had it deep into the pelvic wall again and a recurring Rectovaginal cyst which is rare to recurr, deep infiltration of the sigmoid colon, Deep bladder Endo etc. I had my pelvic wall removed because of the deep infiltrating endo as well as to remove my ureters that were plastered against the pelvic wall , I had a modified Radical hysterectomy, excision of Endo from the bladder, bowels uteral sacral ligaments, and part of my upper vagina removed.

Now after you read this you will see how important it is to have someone who is not only educated in the disease but also that knows how to treat it with excision surgery. I can't express that enough.

I thought I was going mental thinking that maybe I was a hypochondriac and mentally it played on me and I suffered a lot between 2009-2014.

I am still recovering and happy with the results of the surgery however I don't recommend a hyster for anyone as it is not a cure for Endo it was just closure for me mentally.