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KozmicKhaleesi

465d

I've been dealing with debilitatingly painful periods since I started them almost 15 years ago. I can't hold down an in-person job because I'm out of commission for at least 1 week every month. I've also been diagnosed with IBS but I manage my anxiety, go to therapy, eat a low-fodmap, vegan, gluten free diet and still have persistent lower ab pain, bloating, back pain, cramps, butthole lightning (lol), 3 weeks out of the month-- so ovulation, PMS, period. Sometimes I get that one week off a month where I feel kind of okay. Does this sound relatable for anyone diagnosed with Endo? I've been to 2 gynos that have basically ignored me, so I'm wondering if seeking a diagnosis is something I should pursue with a 3rd. Thank you for reading!

Top reply
    • Bubbles18

      156d

      I have literally just been diagnosed with endo via a laparoscopy last week. I have been fighting for this for about 7/8 years now! I have the exact same symptoms you have said, including the butt lighting which I'm now forever calling it 😅 I had to just keep going back and move doctors a couple of times before I was actually taken seriously. I would say to definitely just keep trying! Dont listen to the ones that don't take you seriously and just keep going so they have a record of all of your symptoms. One thing I found really help me, completely by accident, was going onto the depo injection as contraception. I know this doesn't help/work for everyone but it has given me a life. I don't bleed anymore and my cramps have greatly reduced. Its still awful but much more manageable. Obviously talk to a professional before making any decision on things like that but might be worth checking out? If you are okay with taking contraception. I really hope you can get someone who listens to you soon!

    • Bubbles18

      156d

      I have literally just been diagnosed with endo via a laparoscopy last week. I have been fighting for this for about 7/8 years now! I have the exact same symptoms you have said, including the butt lighting which I'm now forever calling it 😅 I had to just keep going back and move doctors a couple of times before I was actually taken seriously. I would say to definitely just keep trying! Dont listen to the ones that don't take you seriously and just keep going so they have a record of all of your symptoms. One thing I found really help me, completely by accident, was going onto the depo injection as contraception. I know this doesn't help/work for everyone but it has given me a life. I don't bleed anymore and my cramps have greatly reduced. Its still awful but much more manageable. Obviously talk to a professional before making any decision on things like that but might be worth checking out? If you are okay with taking contraception. I really hope you can get someone who listens to you soon!

    • Renee02

      208d

      Skip your periods. Periods/Bleeding make endometriosis grow. I have the Mirena inserted to Skip periods, pain and prevent endo regrowth. My specialist told me when I was on the pill to Skip the sugar tablets, prevent bleeding, and reduce chance of endo regrowth.

    • QueenOfPlants

      240d

      Definitely worth pursuing a gynacological investigation into what could be causing your symptoms. I'm diagnosed with endo and PCOS and recently despite my pain still being the same as when I have had surgery to remove the endo deposits (it went away and came back) I'm now being told I don't have a gynae issue which is infuriating. So I know the importance of getting diagnosis and the right diagnosis too. You have to investigate every avenue you can.

    • 100Percent_K

      247d

      Yes, sounds like classic endo tbh. I would pursue the diagnosis with a specialist, not just a regular gyno. I think you’d have much better results as most GYN aren’t educated properly on endo and perform the wrong kind of “treatment”.

    • Ghostlycoze

      459d

      I haven't been diagnosed with endo yet but I relate to this SO much. I tend to have digestive issues and those + period pain is the WORST. It's like one triggers the other and it's an endless cycle of both

      • Ghostlycoze

        459d

        @Ghostlycoze Can't say I've got any advice, still trying to work things out right now. But I feel you, good luck my friend!!

        • KozmicKhaleesi

          457d

          @Ghostlycoze ugh, I'm sorry you're dealing with it, too. Thanks, and good luck to you as well!

    • Blue_Penguin

      464d

      I found Evening Primrose oil helped a lot with the cramping type pain. Tells prostaglandins to settle down.

      • KozmicKhaleesi

        463d

        @Blue_Penguin okay, thanks!

    • wellerhoopoe

      464d

      That sounds very familiar to me as someone with Stage 4 endo, including on the bowels, confirmed via excision surgery. I’m not a doctor, and obviously I don’t know if your symptoms could be caused by something else, but because of the similarities, I’d definitely recommend trying to get in to see an endometriosis specialist. Sadly, many gynecologists (and gastroenterologists and PCPs) don’t know how to recognize or treat endometriosis. Check out Nancy’s Nook, Reddit endometriosis groups and/or local Facebook groups to find a reputable specialist who performs excision (not ablation) surgery. If your insurance requires a referral, it can’t hurt to ask your current gyno’s office (even if you aren’t seeing eye to eye on this) or try going through your PCP.

      • KozmicKhaleesi

        464d

        @wellerhoopoe sorry you're dealing with similar issues and thank you so much for all the info!

    • Deanka

      465d

      Yes I have the same issue. I have stage 2 endo. I’ve had surgeries but still have it. I’m trying orilissa in pill form but it hasn’t helped yet like I need it.

      • KozmicKhaleesi

        465d

        @Deanka thank you for sharing. I hope you can find some relief!

    • Mafuyu

      465d

      I’m the same way! I haven’t been diagnosed with endo, but I definitely feel your pain. It’s the reason I have to work from home. But my issue is constipation IBS and super heavy/painful periods. I get stressed from my period so I get constipated which is just more pain added on!

      • KozmicKhaleesi

        465d

        @Mafuyu that's an awful combo, I'm sorry you deal with that!

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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Yes, your symptoms sound relatable to those experienced by individuals diagnosed with endometriosis. It is worth seeking a diagnosis with a third gynecologist, preferably one with experience in endometriosis, as there is a lot of misinformation and malpractice in the medical field regarding this condition.

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