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A MyEndometriosisTeam Member asked a question 💭
Powell, OH

I was just recently diagnosed with endometriosis and the past month I have been having brown spotting for over 2 weeks. Does this happen with endometriosis?

November 30, 2020
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Answer Summary

Members reassured someone newly diagnosed with endometriosis that brown spotting for over two weeks can be normal, explaining that brown... Read more

Members reassured someone newly diagnosed with endometriosis that brown spotting for over two weeks can be normal, explaining that brown discharge is typically old blood working its way out, and as long as there's no foul smell or other concerning symptoms like pain or bleeding, it's usually not a cause for alarm. Several members shared their own experiences with similar spotting patterns, discussed hormonal treatments like the Depo shot, Mirena IUD, and progesterone-only birth control that helped reduce symptoms, and emphasized the importance of finding skilled endometriosis excision surgeons who can properly recognize and remove endometriosis from all locations, not just the ovaries. A recurring theme was the value of staying in communication with doctors, considering dietary changes like anti-inflammatory or keto diets to help manage symptoms, and remembering that while an endometriosis diagnosis can feel overwhelming at first, the difficult periods won't last forever and many people find relief through various treatment combinations.

A MyEndometriosisTeam Member

I always had brown and black spotting with irregular periods. I think the specific symptoms depend on the person, but definitely keep your doctor in the loop!

December 5, 2020
A MyEndometriosisTeam Member

For everyone reading, unfortunately 98% of us who have it on our ovaries also have it in the deep pelvic cavity & it can also grow on the abdominal wall & organs in the abdominal cavity.

It usually doesn't form cysts on the ovaries 1st, it grows in other locations for a long time, sometimes without symptoms, then spreads to the ovaries. If your surgeon isn't a highly skilled Endometriosis excision specialist surgeon, then they probably don't even know that & aren't capable of recognizing & removing it from all locations. If it's left in, it continues to grow.

An anti-inflammatory diet & progesterone only birth control can help with pain to a certain extent for a while, but neither has been proven to actually stop Endo from growing b/c Endo cells produce their own estrogen which fuels Endo growth. So pain can get worse over the years. This is what's happened to me & now I can barely walk & have to have a much more extensive 2nd surgery.

You can find expert surgeons in the Facebook group "Nancy's Nook Endometriosis Education". It's run by a retired nurse who worked with the pioneer of Endometriosis surgery for 30 years. She tracks the surgical results & patient feedback for Endo surgeons. Search in the group for a document called "Surgeons_International".

Some of them do free consultations. Here is a study about the deep pelvic cavity Endo linked to ovarian Endo to read & take into your drs:

https://obgyn.onlinelibrary.wiley.com/doi/full/....

November 30, 2020
A MyEndometriosisTeam Member

It is probably just a hormonal imbalance then which is common with Endo. I would have your Dr test your estrogen, progesterone & testosterone during the luteal phase just to check. Nothing serious to worry about though, I'm sure. I have very low hormone levels, some ppl with Endo have very high levels, just depends.

November 30, 2020
A MyEndometriosisTeam Member

No I'm not on bc yet. And I've had the ultrasounds so I dont think I have fibroid or polyps thats why I'm concerned

November 30, 2020
A MyEndometriosisTeam Member

Are you on birth control? Birth control & hormonal imbalance can both cause spotting. I had constant daily spotting on Depo & hated it. Now I'm on oral norethindrone which is progesterone only, but took 8 months to finally stop my period & stop spotting. It was rough. Fibroids can also cause spotting/bleeding in between periods.

November 30, 2020

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A MyEndometriosisTeam Member asked a question 💭
London, UK