Is it Endo? Diagnosis for 18 year old

[MommaK1010]

My daughter's period was fine the first year or so.  Then it gradually got worse -- severe cramping, vomiting, nausea, body acne, etc.  Took her to a dermatologist. Put her on meds which cleared up acne, but didn't do anything else.  Finally took her to gyno about 3 years ago.  She has been on numerous types of BC pills.  Worked great in the beginning. Went 6 months or so without a problem, but gradually the intermittent bleeding came back.  And it would happen more frequently.  But with each switch of pills, the time before it would begin to fail would be less and less.  Doctor has run blood tests to check for PCOS, etc.  All is clear. Daughter is leaving for college in under 2 months and I have no answers.  Doctor now wants to give her some type of implanted birth control which I'm not at all comfortable with and neither is my daughter.  She had 1 transvaginal ultrasound about a year ago which was fine.  Just had another last week.  We're waiting on results.  Not sure where to go from here.  Don't want her to have an unnecessary lapro surgery if it's not that.  And even if it is endo, what is the treatment besides birth control (which obviously doesn't work) for an 18 year old who's whole reproductive future is ahead of her?  I'm lost and I'm feeling very helpless.  Many have told me to take her to an reproductive endochronologist, but which can they do?  Blood tests supposedly won't always how anything and others have told me unless my daughter is trying to become pregnant, many won't even bother to see her.  

[Toneliv]

Hi, I'm also 18.

It sounds like what I've been going through, for over 5 years. I recently went to see a endromitriosis specialist, who is going to do a laporoscopy to confirm I have endro.
March this year, I actually got admitted to a surgical ward, as my GP thought I had appendicitis, but scans confirmed everything was normal.
I've had blood tests, the lot. I've tried countless amounts of contraceptives, as my GP told me there used for a treatment of endro, but they only made things worse.
I actually went to see a gynaecologist when I was 15 who refused to do a laporoscopy and told me to come back 'when I was pregnant'  
My mother had endro, and had to have an operation to conceive me, I have actually been told its hereditary.
I'm now being treated with a nasal spray, and waiting for my laporoscopy.
Hope this MIT help

[ticked]

Dr. Iris Orbuch is female, she is the one I met in March she def is female.  Sorry to hear that his insurance doesn't cover it. What is the name of your insurance and I can ask around. I thought Dr. Orbuch takes multiple kinds.

TVUS means transvaginal ultrasound, sorry :)

Here is Dr. O's link to her page.  http://www.nygyn.com/

[MommaK1010]

I'm not sure what you mean by "do the TVUS"?  

Dr. Seckin is not in my insurance.  Neither is Dr. Liu and I'm confused.  You say you met "her" and "she" but it's a male doctor.  Also, I was able to find a Dr. Laurence Orbuch at that address, not Iris.  

[ticked]

I wanted to throw that all out there however I want you to feel at peace that you will get answers.

It has happened that they have gone in and found nothing or they find Pelvic congestions or Adenomyosis instead. What I would is do the TVUS then check your insurance companies to see if any of those doctors are covered first. Let me know if they arent as there are a couple of other ones but Dr. S and dr O are the top ones so if you can get into see one of them that would be great.

I have had 3 surgeries as I had aggressive deep Endo. If they go in and find Endo the recovery will be around 2 weeks and if they don't find any then she will recover within 3-7 days. Trust me with these doctors its safe, effective and they know what they are doing.

[ticked]

No problem. I have been an advocate for this disease 8 yrs ago and I do what I do here so that no one has to live in pain with no where to go.

You have one of the top specialists in the world in NYC. I am not sure about insurance for you as I live in canada but I have a lot of contacts and connections and could try to help you out,


Dr. Tamer Seckin

872 Fifth Avenue,
New York, NY 10065
T: 1-212-988-1444
E: ***@****

Specialisation: GYN only
Bowl/urinary tract surgery: Performs some bowel and urinary tract work himself and is assisted by a urologist and colorectal surgeon in complex cases.

He would be my first pick for you also there is this one


Dr. C.Y. Liu

NYC Women’s Robotic and Minimally Invasive Gynecology,
872 5th Ave,
NY. NY. 10065
T: [phone]  
F: [phone]
E: ***@****
W: http://www.cyliu.com/

Specialisation: GYN only
Bowl/urinary tract surgery: Does some of own urinary tract and bowel work.

This doctor is actually quite amazing. I met her. She doesn't just deal with just Endo but also co-morbid diseases that coincide with Endo.


Dr. Iris Orbuch

202 Spring Street, 2nd Floor,
NY, NY 10012
T: [phone]
F: [phone]

Specialisation: GYN only
Bowl/urinary tract surgery: Unknown

This one is good as well but I would recommend Dr. Orbuch or Dr Seckin.

Dr. Larry Glazerman

MLHC Gynecology at Riddle
Riddle Health Center 3, Suite 3404
1098 West Baltimore Pike
Media, PA 19063
T: 610 627 4170

Specialisation: GYN only
Bowl surgery: Works together with a bowel specialist.

[MommaK1010]

Thank you so much for your quick replies.  I'm in Bayonne, NJ right outside of NYC.  It's so hard to find an endo specialist.  I don't know who is a "self-described" specialist or who is the real deal.  There's no subsection in the insurance for searching.  Many have told me she should see a reproductive endocrinologist, but they're not surgeons.  They'll just run the bloodwork that has probably already been run.  And then there's the worry if a doctor is in-network or if the insurance will even cover the surgery.  And then what if she has the surgery and there's no indication of endo?  Does that ever even happen?  Maybe I should ask her doctor to do a Pap?  She's never had one of those either.  Not sexually active and said she would once she turned 18, but with everything else going on, she just did the transvaginal ultrasound.  I hate to sound all doom and gloom, I'm just frustrated and scared for my daughter.  Any help you could offer would be greatly appreciated.  Thank you.

[ticked]

So weird... I have not gotten one notification in the last week, so I am sorry I haven't been able to respond quicker. Thanks Lulu for jumping in.

I feel your frustration completely. Unless your daughter has an endometrioma (blood filled cyst) they chalk it up to being either normal or menstrual pain.

I was personally not diagnosed for 14 yrs and I think to this day I wouldn't be diagnosed if that Endometrioma never grew when i was 26. I started having the same kind of pain your daughter has but it started after my second period and continued until my first surgery in 2007.

The only thing I can say is that if you take her to an Endo specialist the surgery will be minimally invasive and they will excise (cut out) any endo that is there. If you take her to a gyno most of them only know what the standard look of endo looks like and will miss a lot as well as possibly make it worse for her.

Let me know where you live and I can steer you in the right direction with top specialist. If she does have it and goes to a specialist the faster it is caught and taken care of the higher the chance of fertility.

I was put on the pill for 6 months before diagnoses and I could not stop bleeding. After my surgery I was on the BCP continuous for 8 yrs, no period and no pain and only breakthrough bleeding every 3-4 months.  

I would not feel comfortable with the implantation myself so I can see why you are concerned.

[lulu747]

Hi There and Welcome-

It does sound like a real possibility that your daughter may have endo.  No BC ever worked for me, including the IUD.  It is common for nothing to show in ultrasounds, CT's or blood tests.  The only way to properly diagnose endo is through laprascopic surgery.  Your best bet for your daughter is to get her in to see a top endo surgeon who does excision surgery.  Most gyno surgeons are not well educated in endo and do cauterization which does not remove the endo and can cause all kinds of issues such as scarring and infertility.  I am in Canada and see one of the top endo surgeons here.  I have stage 4- the worst kind with all sorts of other organ involvement including bowel, bladder, ligament, etc.  I had one excision surgery in 2010 and was symptom free up until 8 months ago.  I am waiting my second surgery and then plan on trying to conceive asap afterwards.
It is VITAL that she see an endo specialist.  Ticked is the go to gal on this forum and she will be on soon and can direct you to the best surgeon in your area.
This is a very tricky, very painful and complicated disease that is misunderstood by much of the medical community.  But there is hope.  I had been told that I had a 15% chance of conceiving and that a hysterectomy was my only option before I found my current doctor.  You must be a strong advocate for your daughter (sounds like you are) and do not stop until she gets the best care.  It really can be totally debilitating.  I lost 6 years of my life before I was properly diagnosed.  
Wishing you both all the best....
Lu