Endometriosis Community
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211043 tn?1337054301

Anyone know of any doctors around Syracuse NY that specialize in endo?

I'm looking for a doctor that specializes in endometriosis.  I'm sick of this ****.  I've been to 4 doctors in 2 years and none of them seem to know what they are doing.  I also have PCOS which is adding to it.  I've been to Dr. Kiltz and CNY fertility, but a reproductive endocrinologist is not covered under my stupid insurance.  I'm pretty limited - it definitely doesn't cover anything in Rochester.  Mostly Cayuga, Cortland, Onondaga, Madison and a little bit of Oneida counties.  I think the Watertown area is not on my plan.  I'm willing to drive for someone who is worth it.
6 Responses
Avatar universal
Im sorry, I dont live in that area, I am in NJ.  Why are you having so much trouble with the doctors?  What are they doing, or should I say NOT doing??
211043 tn?1337054301
Well, it took getting to doctor #3 before I finally found one who was willing to entertain the idea that I have both pcos AND endometriosis.  The one before that (doctor #2) diagnosed the PCOS, and I kept telling him I thought I had endo as well, because my pain was horrific.  My mom and sister both have endo too!  Which I told him!  Instead, he prescribed me 48 oxycodone just to take for menstrual cramps, rather than looking into the problem!  In the meantime, I was hospitalized once, under his care, because my cramps were so bad that I took 4 extra strength tylenol, 2 oxycodone and 2 darvocet in under 4 hours (I know it's bad but that's how desperate I was) - and I was STILL crying in pain.  Still wouldn't do the lap!  Instead, he kept pumping me full of clomid for fertility treatments, which he was also not monitoring me properly for.  After my second ovarian cyst rupture, due to the fact he refused to give me ultrasounds while giving me a drug that stimulates cyst formation in anybody, much less someone with polyCYSTIC ovarian syndrome, I met doctor #3 in the ER.  She was appalled I hadn't had a lap yet.  I asked if she'd be my doc.  She did a lap in Dec and found I had "moderate" endo - she never specified a stage, just said it was moderate.  I left her because I could never see her when I had an appt - always the NP or midwife.  Plus, I have serious ovary issues and frequently need ultrasounds, and in order to get one I'd have to go in and be seen, come back in 2 weeks to get the ultrasound (even when I was in pain), and then wait ANOTHER 10-14 days after the ultrasound to meet with the doctor to get results.  In the meantime, that's 3 copays and a month spent in pain without treatment.  It was ridiculous.  So I found doctor #4, who I have now, and will at least do an ultrasound HIMSELF (no tech) on the spot and tell me what he sees immediately.  This is huge for me.  But the other doctor in his office is retiring and I think he is taking over his patients so he is much busier now.  It's an even longer story, but basically I went in Thurs because I hadn't gotten my period in 2 months, and I was having horrible shooting pains down my legs and out my lower back.  I assumed my hormones were going wacky cuz of my pcos, and my endo was coming back and causing the pain.  Turns out I had a grapefruit sized ovarian cyst.  Thought that was the cause of the pain and the wacky hormones.  Well, I bled over the weekend (but barely even enough to come close to a period, much less when I hadn't bled in 2 months) so I went back cuz the pain was really bad.  I had to wait THREE hours to be seen because he had to deliver a baby.  He had come back after 2 hours, and I spent an hour half undressed on a table in pain.  There should've only been one person ahead of me when the brought me back, but they made me wait.  When he finally came in, he was so rushed he had the ultrasound probe in me for like 45 seconds.  He told me it must've ruptured over the weekend cuz it's gone, and the pain should've just about subsided by now.  I asked why I was still having shooting pains at that very moment (and have continued to have) and he said "Oh, it's probably JUST your endometriosis coming back" - JUST my endo, huh?  Then after some protest, he ultimately gave me some percocet and told me to "come back if my periods continue to be so painful" - why?  So he can just medicate me some more and not take care of the problem?  I'm so frustrated....

I read about this new thing they are doing where they place this film over any place they cut during surgery, to minimize new adhesions forming after surgery.  It basically acts as a temporary scar and dissolves so your body doesn't have to form new adhesions to heal.  I just feel like you need to be near NYC or Philly or some major city to be around someone who may even consider something like that.  I'm worried that these docs are inexperienced and are making my problem worse by messing around in there.  I don't know, I just want to find someone who knows what they are doing and won't just throw some painkillers at me and brush me off.  I don't like taking painkillers at all.
Avatar universal
Wow.  Seems like you've been through the mill.. Unfortunately, I wish I could help you and I hope my situation goes smoother.  You do have children correct?  I feel your pain sweetie, but it is important for you to manage the aches and pains so you can function as well.  Im wondering if you need a hysterectomy at this point or if anyone has discussed with you a long term plan?  I would suggest you get an endocrine specialist asap, but Im sure thats easier said than done, in the meantime feel free to vent your frustrations to me.  I have moderate endo as well, as it hurts very badly.
211043 tn?1337054301
I actually do not have children - and want them more than anything.  We've been trying for 2 years.  My first try doing an IUI after my lap resulted in my first pregnancy, but I lost it.  Then I did IVF and that failed too.  So I'm trying to lose weight to help my PCOS so I can at least get that under control.  I figure if I get that under control and have another surgery for my endo then I may have a good shot at maintaining a pregnancy.  I'm only 32 and I won't even consider going on the BCP, much less inducing menopause or hysterectomy.  
Avatar universal
Oh, Im sorry, i must have mistaken your post with someone else's. So we are almost in the same boat.  Wow.  Well, today has been more painful than ever, breasts are very tender, so I took an ovulation test and it looks like Im ovulating!  So I told the hubby we must try today tomorrow and Friday.  I hope I made the right decision in telling him because I hear some men get nervous and can't perform...:)  How much does the IVF cost in your area? very expensive IM told, like 10,000????  This is craziness.  Luckily for you you have 2 years on me, and Im sure you will be fine.....we must pray for ourselves.
Avatar universal
Did you ever find a doc in the 315 that helped you out?

I am having extreme pain in between periods and it’s not always sever pain but when it is I have a very hard time functioning. All I want to do is scream and cry and rip my insides out.

I have seen 3 different drs and multiple sonograms in the area and all have been inconclusive and none have gotten back to me with results. It is exhausting and extremely frustrating. I can’t believe how everyone I talk to says how great the Syracuse area is for the medical field except when people need them to be exceptional.

Hope you found a doc and would love any references. Glad I’m not alone.
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