Connect with others who understand.

Sign up Log in
Resources
About MyEndometriosisTeam
Powered By
Real members of MyEndometriosisTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Are Nancy’s Nook Specialists Worth It?

A MyEndometriosisTeam Member asked a question 💭
Iowa City, IA

I was diagnosed with minimal stage endometriosis one year ago (though I’ve been in pain for longer) the doctor who did my laparoscopy did not ablate or excise any lesions. I since switched my care to the university hospital and have been much happier with my care, however nothing they have tried is working. I’ve been on norethindrone, nuvaring, necon, and now I have a Liletta iud. None of things have reduced my pain. Depot lupron has been discussed but due to unrelated bone density issues my… read more

July 10, 2019
View reactions
A MyEndometriosisTeam Member

I think it might be worth seeing the endo specialist if nothing has helped reduce your pain level. And I was originally diagnosed with minimal endometriosis as well but had horrendous pain, so please don’t minimize your stage of endo! You deserve relief. It’s great to have MDs who take you seriously but maybe an endo specialist could suggest something else that could be effective.
Also, I was diagnosed by a reproductive endocrinologist because I had unexplained infertility. In hindsight, I think it was the endo all along that kept me from getting pregnant. The MD did not think it was endo related because my endo lesions weren’t obstructing anything critical. However, I think it may have had something to do with the chronic inflammation. At any rate, fortunately I did get pregnant through IVF, had a couple years relief from the endo, & then it returned with a vengeance. I only mention this because you said you were seeing a reproductive endocrinologist. If you’re trying to get pregnant you may want to focus on that rather than endo treatment, but I think there are some risks just because of all the estrogen exposure. I feel extremely lucky to have my daughter but sometimes wonder if all those hormones accelerated my endo.
Anyway, I’m sorry you’ve continued to have pain after so many different treatments. I know how frustrating that is and hope you find relief soon!

July 10, 2019
A MyEndometriosisTeam Member

You're absolutely right about the information that you get from many Dr's being wrong when diagnosing or treating endometriosis. It took me years of suffering and trying to find out why I was in so much pain. I've even had surgery by a gynecologist, seen a reproductive endocrinologist 30 days later for another needed surgery, more endo was ablated at the second surgery & I woke up and was told the endo had eaten through my bowels, bladder, &ureters. This surgeon closed me, told me the gyno had to have missed the disease b/c the stages of the disease can look many different ways depending on the progress of the disease, & I eventually had to have a gynecologist/ oncologist, along with a team of urology, gastro, etc. to repair what they could. I've had many surgeries and procedures. This disease can cause horrendous complications for some women. It's been my experience that the majority of people think endometriosis is only "painful periods" & a hysterectomy will cure it. This is also not the case. I will be happy when more attention and access to specialized care is paid to this disease and of course, many others.

July 19, 2019
A MyEndometriosisTeam Member

I had surgery with a Nancy's Nook endo specialist and it's clear that they know a lot that most doctors do not . . . a lot of information is very outdated and just flat our wrong from other doctors, even if they are sympathetic. From what I understand from my surgeon, any amount of endo should be completely removed-- because of inflammation and whatever else.

July 16, 2019
A MyEndometriosisTeam Member

Nah that makes a lot of sense, I’ve wondered about if she has endo too because of the genetic component. And lol coffee is life for med students!

July 15, 2019
A MyEndometriosisTeam Member

Thank you 💕💕 I love my mom but she just doesn’t understand how much it’s impacting my life. I talked to my dad though and he said we could find a way to make this happen. And Dr. Yeung in St Louis said he would operate (I emailed his office and got a reply from him the same day offering to review my case and then after I sent him my previous operative report he said he could schedule a couple silt with surgery the next day!) so I’m already impressed with him. Thanks for the offer for information, I’m actually a medical student and have access to tons of databases and such and have found a lot of solid info already. There’s abhorrently little research being done, but most of it shows excision surgery is a good approach.

July 14, 2019

Related content

View All

Is It Possible To Complete A Cycle In 1 Week?

A MyEndometriosisTeam Member asked a question 💭
Delaware, OH

What Natural Therapies Have Helped?

A MyEndometriosisTeam Member asked a question 💭
Santa Rosa, CA

If My Pain Got Better After Pt But Then Came Back Should I Keep Trying Pt Or Conclude That It Isn’t Going To Work Long Term?

A MyEndometriosisTeam Member asked a question 💭
Santa Rosa, CA
Continue with Facebook
Continue with Google
By joining, you accept our Terms of Use, and acknowledge our collection, sharing, and use of your data in accordance with our Health Data Policy and Privacy policies.Your privacy is our priority Lock Icon
Already a Member? Log in