My OBGYN could not officially diagnosis me with endometriosis without performing a laparoscopy (a surgery), and he wants to avoid that at all cost, and he says, even if I had endometriosis, the treatment would still be the same. So he is going to treat me as if I have endometriosis. Looking at my medical history (all the pain/vomiting/nausea/PCOS, but yet having a clear Colonoscopy and Endoscopic Ultrasound and no food allergies) in addition to pressing on trigger points on my abdomen and inside cervix, he believes I have endometriosis.

He believes that endometriosis may be contributing to my fatigue, extreme nausea, abdominal pain, migraines, digestive issues, etc. So to solve that he wants to insert an IUD into my uterus in two weeks. You can read about general IUDs here. Basically, it's a contraceptive that is inserted directly inside me. But it should help with all the symptoms associated with my period by getting rid of my period. It can last for up to 5 years. I can remove it (if I ever were to try and have kids). He thinks this is far superior to treating my pain than regular birth control.

The one he wants me on is called Mirena. You can read about it here. But it seems that a lot of the side-effects are the same as the symptoms that I'm trying to treat, so I'm wondering if it will be counter-productive. How common are the side effects of fatigue, nausea, abdominal pain, etc?

Also, by doing research, I've seen that this medication/device (Mirena) has been subject to many lawsuits, which naturally has me a little on edge. Have they improved this drug since the lawsuits? Is there anything I should be concerned about because of the lawsuits?

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    Keep in mind that lawsuits are the most biased, unrealiable source of science information you can possibly find. Lawyers are paid to be biased. They are paid to highlight facts that support their case and conceal facts that contradict it. Also keep in mind that suing drug companies is a very big business. There are entire law firms that do nothing else. I would not consider lawsuits against a manufacturer of any drug to be evidence of that drug's value or lack thereof.
    – Carey Gregory
    Sep 9, 2016 at 1:32
  • @CareyGregory I agree with everything you wrote except the last sentence. Remember that drug companies are often profit-driven multi-billion dollar corporations. Lawyers are extremely biased and often conceal information. Tragically, the same can be said for many drug manufacturers. I have a friend currently trying a new experimental drug (not related to Mirena), and the bias of the company hired to administer the drug trials is obvious & disconcerting. When my friend reports side effects, they just tell her it can't be from the experimental drug because others don't have the same issue. Sep 9, 2016 at 9:55
  • @RockPaperLizard I don't now how that reflects on my opinion that the mere existence of lawsuits says nothing about a drug's value.
    – Carey Gregory
    Sep 9, 2016 at 13:17

2 Answers 2

  1. Making an assumption of a diagnosis of a such serious condition as endometriosis and starting with treatment that can have potential severe side effects without making the actual diagnosis is not serious for a doctor.

  2. Abdominal adhesions from other causes, like PCOS or pelvic inflammatory disease, can cause similar symptoms. And there are other much more common conditions, like irritable bowel syndrome and trapped wind ("splenic flexure syndrome") with similar symptoms.

  3. Laparoscopy is not a surgery, but an outpatient diagnostic procedure. Not that I encourage anyone to do it. If endometriosis is found, some adhesions can be removed during the procedure.

  4. IUDs have potential serious side effects including ectopic pregnancy and perforation of the uterus. Nobody can tell how bad other side effects (nausea, migraine, fatigue...) will be in a given person.

  • Thanks! I've been diagnosed with PCOS abt 6 yrs ago & take treatment for it so I understand point #2. I did not disclose that, but, yes, that is an important detail I should have included. For #3, I'm living in Canada, and unfortunately I don't think they readily offer "outpatient diagnostic procedures" unless you've tried all other options. They make it really difficult - otherwise, I would be fine w/it bc I'd prefer a solid diagnosis! I do have a ? for #1: are you saying that it's not uncommon for Dr.'s to do that or that it's not impacting him so he doesn't have my best interest in mind? Sep 10, 2016 at 17:24
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    @user51778, I can't speak about your doctor, but since both endometriosis and the suggested treatment are both serious, getting investigation-confirmed diagnosis is a good idea. I should point out that laparoscopy can detect only superficial endometriosis, so it can not reveal it in all cases; MRI is probably better: pubs.rsna.org/doi/pdf/10.1148/rg.326125518 . One possible approach is to start some elimination diet, such a low-FODMAP diet, to see if certain nutrients are triggers of GIT issues. If no help in a week, gastroenterologist can do some tests.
    – Jan
    Sep 10, 2016 at 17:46

Laparoscopic coagulation of endometrial spots itself is one of the clinically approved treatment for endometriosis. Though by evidence-based medicine the evidence for laparoscopic treatment can vary from low to moderate (depending what symptoms patient has).

Mirena is a hormone releasing intrauterine device for which evidence is moderate by evidence based medicine. Hormone based drugs as all drugs can have side-effects,but you need to remember, it depends on individual's organism.

If you are avoiding laparoscopic surgery and you have experience of using hormone replacement therapy (oral contraceptives or skin application) then you should be fine with IUD. Just make sure gynaecologist inserts it correctly by ultrasound follow up after insertion.

Another thing is, you can have it and see how it goes with you,if any inconvenience or severe side effects it can be easily removed just in second.

High evidence treatment for Endometriosis is not found yet.

From alternative medicine auricular acupuncture can be tried as It showed higher evidence then herbal ones as mentioned below in the link. Here is comparison of effectiveness of different treatments in Cochrane clinical trials: http://www.ncbi.nlm.nih.gov/m/pubmed/24610050/

There are lots of clinical trials done for levonorgestrel releasing IUD (Mirena). I think it is one of the most researched hormonal treatment. One of them: http://www.ncbi.nlm.nih.gov/m/pubmed/20618247/

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