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KozmicKhaleesi

402d

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

      93d

      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 šŸ˜… 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

      93d

      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 šŸ˜… 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

      145d

      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

      177d

      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

      183d

      Yes, sounds like classic endo tbh. I would pursue the diagnosis with a specialist, not just a regular gyno. I think youā€™d have much better results as most GYN arenā€™t educated properly on endo and perform the wrong kind of ā€œtreatmentā€.

    • Ghostlycoze

      396d

      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

        396d

        @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

          394d

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

    • Blue_Penguin

      401d

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

      • KozmicKhaleesi

        400d

        @Blue_Penguin okay, thanks!

    • wellerhoopoe

      401d

      That sounds very familiar to me as someone with Stage 4 endo, including on the bowels, confirmed via excision surgery. Iā€™m not a doctor, and obviously I donā€™t know if your symptoms could be caused by something else, but because of the similarities, Iā€™d definitely recommend trying to get in to see an endometriosis specialist. Sadly, many gynecologists (and gastroenterologists and PCPs) donā€™t know how to recognize or treat endometriosis. Check out Nancyā€™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 canā€™t hurt to ask your current gynoā€™s office (even if you arenā€™t seeing eye to eye on this) or try going through your PCP.

      • KozmicKhaleesi

        401d

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

    • Deanka

      402d

      Yes I have the same issue. I have stage 2 endo. Iā€™ve had surgeries but still have it. Iā€™m trying orilissa in pill form but it hasnā€™t helped yet like I need it.

      • KozmicKhaleesi

        402d

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

    • Mafuyu

      402d

      Iā€™m the same way! I havenā€™t been diagnosed with endo, but I definitely feel your pain. Itā€™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

        402d

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

ā˜ 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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