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FYI - If you suspect endo - my story, with symptoms, for those who are not sure or are not being taken seriously

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usuk2004
I'm ONE!

Member since 5/05

5150 total posts

Name:
Farah

FYI - If you suspect endo - my story, with symptoms, for those who are not sure or are not being taken seriously

Just wanted to give a little FYI to those of you who might be struggling with infertility and suspect endometriosis. I just had a laparoscopy this morning to remove a 4cm cyst that my RE swore was a dermoid. My research all pointed to endometriosis. I spoke to him several times about endo - not to mention several other doctors, sonographers, nurses, etc - I was fobbed off very time.

Went in for surgery this morning, when I was in recovery, the RE came in and was really chirpy, saying it was in fact endo, but that we were now in a really good position to proceed with IVF. Basically he's been pushing us to proceed with IVF and we were all set to start this month, but I had a fainting episode with my last period so I called it off and pushed to have the cyst removed. I KNEW it was endo.

Needless to say I'm incredibly angry that I wasn't taken seriously all along and so upset that we've wasted so much time.

For those of you with suspicions, my symptoms were lots of spotting - premenstrual and mid cycle, very sore breasts, heavy periods with lots of large clots, rectal bleeding, uncomfortable bowel movements, alternating constipation and loose stools and these fainting episodes. Three times this year, I had a horrible stomach cramp shortly after waking up, went to the bathroom, turned white as a sheet, sweating profusely and nearly passing out, usually first or second day of my period. I've had cramps/painful periods (especially in my back and my thighs) but nothing I couldn't manage with Advil and sitting against the radiator. And it was because I never had debilitating pain that no one took me seriously.

Hoping this helps someone out! Very happy to talk about it if anyone has any questions!

Posted 10/5/13 2:16 PM
 
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Lillies
Grateful for my babies!

Member since 2/12

4571 total posts

Name:
<3

Re: FYI - If you suspect endo - my story, with symptoms, for those who are not sure or are not being taken seriously

Wonderful news that you got answers!! I too have endo. Can you fm me your RE and who did the surgery? I also have a cyst that e erupts is calling a dermoid cyst and it concerns me!

Posted 10/5/13 4:15 PM
 

usuk2004
I'm ONE!

Member since 5/05

5150 total posts

Name:
Farah

Re: FYI - If you suspect endo - my story, with symptoms, for those who are not sure or are not being taken seriously

Lillies - we're currently living in England so the RE is here. And given that I had to convince HIM to do the lap because I thought it was endo, I wouldn't recommend him!

We're moving back to the US next month and I've done a little bit of research into specialists there and came across an Endo guy called Dr Seckin. On his blog he says Dr Braverman is the only one he trusts to do a full immunology work-up as part of his RE treatment, which he says is essential for patients with endo. I know a lot of people here rave about Braverman. Might check him out when we get settled.

Good luck!

Posted 10/5/13 5:01 PM
 

kiki1103
LIF Infant

Member since 7/10

313 total posts

Name:

Re: FYI - If you suspect endo - my story, with symptoms, for those who are not sure or are not being taken seriously

Posted by usuk2004

Lillies - we're currently living in England so the RE is here. And given that I had to convince HIM to do the lap because I thought it was endo, I wouldn't recommend him!

We're moving back to the US next month and I've done a little bit of research into specialists there and came across an Endo guy called Dr Seckin. On his blog he says Dr Braverman is the only one he trusts to do a full immunology work-up as part of his RE treatment, which he says is essential for patients with endo. I know a lot of people here rave about Braverman. Might check him out when we get settled.

Good luck!



Thank you for posting this story. I think it is important to raise awareness. Good for you to be your own advocate! The same thing happened to me. I see Dr Braverman who is the first doctor I have seen that suspected endo after performing an ultrasound. I always had painful/heavy periods but my ob/gyns just stuck me on birth control to suppress the symptoms. Once Dr B suspected endo he did a full immune workup as you say and he found a lot of the immunology issues that go along with endo (high cytokines/ positive ANA) which he will be treating me for throughout the process. Let know if you have questions once you get settled in.

Posted 10/6/13 7:07 PM
 
 
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