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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.
A MyEndometriosisTeam Member asked a question 💭
Clearwater, FL

My pain only happens when I'm on my period. I've been doing a lot of research on endometriosis and I'm seeing a lot of post of people in pain everyday. I feel blessed that so far its only once a month. Is this normal? Should I expect to eventually hurt all the time? (god I hope not) I haven't been diagnosed yet, but all of my symptoms point to endometriosis. I guess my question is, does anyone else only experience pain during periods?

July 17, 2015
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Answer Summary

Members responded to someone asking whether endometriosis pain only during periods is normal, with the consensus being that while many started... Read more

Members responded to someone asking whether endometriosis pain only during periods is normal, with the consensus being that while many started with period-only pain, progression varies dramatically from person to person, with some experiencing pain for years only during menstruation while others developed daily chronic pain over time. Several members emphasized that endometriosis severity and symptoms don't always correlate, sharing stories of stage 4 cases with minimal pain and others with debilitating daily symptoms including nerve pain, fatigue, nausea, and mobility issues that impacted work and family life. A recurring theme was the critical importance of seeing a specialist and getting a laparoscopy for diagnosis and treatment as soon as possible, as delaying intervention often leads to worsening pain and complications.

A MyEndometriosisTeam Member

I used to only have pain with my periods as well. Which then became pain two weeks out from my period and during. Then in October last year I had my normal period pain which was pretty bad and I just couldn't stand up..I have had pain everyday since then. I have stage 4 endo and adenomyosis with now nerve pain and what looks to be deep infiltrated endo. I have a constant period pain like ache, layered with sharp pain, layered with sharp spasms. Every day I am in pain, many times I am unable to walk or move, others I need my heat bag and pain meds and I can through. Constant endo fatigue. It's funny you have raised this question as I often wonder about the women who only have pain with their periods and wonder if their pain was like how mine used to be, or is it like my worst day of pain now. It still intrigues me that this disease differs from women to women. Perhaps that is why so many medical professionals seem to misdiagnose and sometimes are skeptical about endo being a disease at all that can affect so many women differently.

September 16, 2016
A MyEndometriosisTeam Member

Pain has definitely increased as time has gone by. I used to think I was having a bad time when the pain was around my period. However in the last few months the pain has been there constantly, day in, day out. It's very hard to cope with. I don't want to live the rest of my life in this much pain.

September 24, 2016
A MyEndometriosisTeam Member

Mine started out with pain just during my period. Now I have pain a lot more during the month. It took 12 years for me to get to the pain level I'm at. The longer you go without some type of intervention, the more pain you will experience.

September 9, 2015
A MyEndometriosisTeam Member

My pain affected me daily but I also have interstitial cystitis (IC) and Pelvic Floor Dysfunction (PFD) which are very painful on their own

July 23, 2015
A MyEndometriosisTeam Member

Patricia Marquez is also correct I know a lady who has endo but only found out after her last son was born and she had her tube tired. She has 3 kids no problems with having them, able to function she is stage 3 and so am I and I stay in pain have issues some days I don't get up.

July 18, 2015

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