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Old 08-18-2008, 06:15 PM   #1 (permalink)
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Unhappy Probably have endo need some cheering up and sucess stories.

I went to the gyno today for my second ultra sound to see what was going on right off she saw a 4.5 cm cyst that was my right ovary.Left ovary is stuck onto my uterus,doesn't seem to be budging.The DR is pretty sure its Endo but cannot dx it until he does a lap.He put me on BCP for 2 months to see if the cyst will shrink.At this point im really aggravated one because i got a ultra sound done at a different hospital a few months earlier and they found nothing.2,its not just one ovary but both.3,i am in some pretty severe pain and all they say is tylenol,advil and motrin.

Has anyone else go through this?What did you do during this time?
any help will be appreciated!
Thanks in advance ladies!
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Old 08-21-2008, 12:59 PM   #2 (permalink)
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I had surgery twice for endo. Once when I was 17 and again when I was 25. I was told I could not get pregnant without medical intervention. Well, I got pregnant at 18, about a year after my first surgery.

The endo grew back over time and had to have surgery again 8 years later. It has been 6 years since I last had the surgery. I Have flair-ups every now and then and feel pain like I had prior to having the surgery, but no where as bad as it was before.

The way I understand endo is that it is really just a fluke thing re whether or not it will grow back. Some women have success after one surgery, some women don't.

Yes, endo can not be diagnosed unless they go in. But when they do go in they can remove it then.

As far as pain, ask your gyno for either darvocet or annaprox. My dr was always very willing to give it to me when I needed it. He knew I did not abuse it and was in pain.

One thing I have found is that my male gyno who I have been with since I was 16 is so much more sympathetic, understanding and caring than some of the women drs GP's I have been to for yearly physicials. I quit seeing my gp and either go to my gyno for all female problems (and other things, if I am there to see him and I have ear pain, I get him to check it for me) or I go to a specialist (ENT, Internal, etc.) One woman dr I went to even alluded that my pain was the result of something not making a "connection with my body to brain". To me that sounded like telling me I was crazy. I think women drs who have not experienced painful period/ovulations/endo/PCOS, etc do not understand because they have their periods and they are not "bad". Just my opinion !
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Old 08-21-2008, 04:08 PM   #3 (permalink)
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Thanks for your story!It was really nice to hear!

Yes,my doctor gave me some Loratab yesterday.I get extreme pain when i sit down,probably from my ovary being stuck to the back of my uterus with endo.My bfs adopted so we really want a child of our own.I guess that stresses me out a little.

I hate when dr's do that.I have to keep calling quite a bit before they gave me medicine i guess its different for every doctor.I was talking to all different drs and finally one got my chart out and saw what was going on she prescribed it right away.Sometimes i think they just don't care enough or just dont know enough about PCOS/Endo to really be able to understand what we are going through.Its frustrating!
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Old 08-22-2008, 12:18 AM   #4 (permalink)
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I don't ahave any advice for you, I just wanted to wish you luck in figuring things out.
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Old 08-22-2008, 12:38 AM   #5 (permalink)
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Hi... I was diagnosed with endo about 10 years ago and have had numerous surgeries to address endo. In my first surgery they found 3 grapefruit size endometriomas with my ovaries stuck to my back and my entire abdominal cavity consumed with endo. A laparoscopy wouldn't work to remove the endo so I had a laparotomy. Now they have some new techniques - specifically, the da vinci system that can be used to excise the endo and the recovery time is much quicker as the surgery is much less invasive.

I have had some great docs and not so great docs over the years. You deserve to find someone that will recognize the level of pain you're in, be compassionate and give you adequate pain medicine!

Check on some of the other online endo groups for information on a doctor that is more responsive and experienced with endometriosis. (Check the boards on www.endocenter.org)

Each time I come across a doctor that barks at me to have a hysterectomy or tell me there is nothing that can be done... I fire them - i.e., I decide that I can't work with them. I know from other endo patients that a hysterectomy is not the answer and that there are other doctors out there who will listen and do what it takes to make sure my pain is manageable.

Sorry I'm getting so fired up... I've lost a lot of respect for doctors over the years by being admonished, discounted and misdiagnosed. I swear I'm going to plan a revolt!!!! Wanna join me!

Good luck... if you have any questions feel free to send me a message. ((Hugs))
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Old 08-22-2008, 08:56 PM   #6 (permalink)
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Sounds like we are at about the same place!

I had a cyst on each ovary and endo. Lap to diagnose, remove cysts, etc.

I still have some pain bc the endo has caused damage to one of my ligaments holding my uterus in place. Too bad no dr before this one really helped me out.

I am still in pain, but not as bad as I started bcp right after surgery.

Let me know how it goes. Sorry I'm not a success story....yet.
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Old 09-26-2008, 01:40 PM   #7 (permalink)
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Olivia,

If you're still around and checking this forum, I'll post my story! I think it's a success, but it's a long story, and I'd rather not post it, if no one is gonna read it.
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Old 09-28-2008, 06:09 AM   #8 (permalink)
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Sorry i've been bouncy around the last couple of weeks.

So far they've put me on BCPs but i keep getting dark almost old blood discharge and sometimes it turns pink (like about to have Af) They've stopped my periods because they are extremely painful.I think i'll be starting Lupron next month.We will see what the DR says.

Olivia:
We will both be success stories soon!

And Thank you everyone for you stories it is much appreciated!
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Old 09-29-2008, 02:08 AM   #9 (permalink)
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I was diagnosed with endo 15 years ago and told also that I probably would have a hard time conceiving. I went through Lupron for 6 months, which was really difficult but did improve my symptoms. Since then I have had 2 children. My symptoms always improve for about 3 years after each pregnancy then come back. The one thing I have learned over the years is that doctors really do not know everything. Trust your body. I consider myself to be a success story. I have two beautiful children. I am living despite endo or anything else wrong with my body. I am about to start the process all over again in trying to get diagnosed with PCOS. I have not been able to find a doctor that will take it seriously. I have learned to listen to my body when things don't feel right.
Just a FYI, I was never able to tolerate BCPs. My hormones have always been out of whack, and BCPs made things even worse. They also made the endo pain worse. If that happens to you, don't be afraid to tell your doctor no thanks.
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Old 10-01-2008, 04:17 PM   #10 (permalink)
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sleepymommy -- I'll def read it I know many other women will read it as well.

Thanks for being so open
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Got Pregnant on Lupron Depot (EDD: 10/8/09)
Endometriosis
Surgery - Laparascopy, hysteroscopy & D&C done 7/08
Cystic Ovaries (Surgery for the cysts)
Ruptured Cyst
Scleroderma


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Old 10-01-2008, 09:34 PM   #11 (permalink)
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Me too sleepmommy... I always need a good success story!
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