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… read more
In my experience, the endo specialists have been worth it. Endo is not well understood in the medical community and lots of clinicians don't know about it at all. I've been to so many doctors who had never even heard of it! A disease that affects 10% of women? Shocking to me.
Also, in my experience, the pain and stage of endo don't necessarily correlate. The two specialists I've seen (Dr. Seckin in New York and Dr. Mosbrucker in Washington state) have both told me that. A woman can have "Stage 1" and be in excruciating pain and a woman with "Stage 4" can have no pain. And Dr. Seckin said he thinks the staging system is outdated. There's no logic!
I hope you feel better soon. It's your body and you know it best, so do what feels right to you.
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!
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.
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.