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How have your endo symptoms evolved or changed over time?

Have your symptoms and/or pain increased? Stayed the same?

What treatments have you tried? Have you had surgery? Please share your experience with us! We'd love to hear & learn about your journey with endo.

  1. My endo symptoms started with heavy and painful periods. Over time I developed back pain and general pelvic pain as well, not just during my period, but all the time. Then the exhaustion started and the mood swings.

    I've tried birth control (so many different ones!) and I had a laparoscopy. In the end I chose for a hysterectomy as I didn't want to have any more periods. This has significantly reduced my pain, but I do find that over time some of the pain (and the tiredness) are coming back again.

    1. I just joined and am on the second month where, what used to be merely ‘very painful’ periods, have gone to agony. Naproxen sodium always worked until then. The pain is now not restricted to my period and is crippling - my lower back wrapping seemingly around my hips is a constant cramp and walking just doesn’t seem an option, vomiting does- but what can I do? Seems from here as though most doctors belittle, most people think you are a hypochondriac and there isn’t a cure anyway... this is a ‘woman’s problem’ and we are just whining. I have to keep moving so I do but this is, without question, agony. I suspect I have just entered peri menopause which is why my body is in heightened mutiny. So yes... it gets worse.

      1. , I am so sorry that your symptoms have progressed so much & that you are in so much pain. Have you considered finding a specialist?

        I am right there with you though & really wondering if pain level has increased due to possibly entering peri menoupause too! My doc recommended I try a different hormonal treatment therapy (which I have not done yet), but I am really hoping that will help. Hugs to you & know we are always here for support.

    2. Thank you...It really does just seem to be a ‘groan and bear it’ concept. I have thought of seeing a specialist but literally everyone’s story is identical - no cure and even a hysterectomy only offers marginal improvement without any certainty that doesn’t cause even greater unknown issues.... I wish that naproxen still worked for me! I hate that the only ‘advice’ I can give is that severe momentary discomfort can actually turn into virtually incessant agony in a vice like pain around your lower spine... sigh. Well at least I can complain on here 😉

      1. I understand your feelings. With no known cure, it’s tough to see this disease as ever getting better. However, my specialist did improve my quality of life. The disease may not be cured, but some of the most upsetting symptoms have gone away thanks to the line of treatment I followed. I am aware I am saying this from one of my “better days”, but please don’t give up hope. And do complain to us whenever you need to. With endometriosis a good rant can feel like heaven sometimes. We are here for you 😀 – Jessie (team member)

      2. hi! Just wanted to check in on you and see how you were doing. Hoping you have been able to find some relief since your last post!

        I just wanted to chime in as well, my specialist certainly helped me so much. I know I am not cured and honestly I know it isn't given that I will feel this relief for ever but, like Jessie said, a lot of my extremem symptoms have gone away. Of course that wasn't just because of the surgery, I have really changed up my diet and lifestyle as well.

        And yes! You can always complain to us, vent to us, chat with us, whenever you need. We are here! Always. That is why I love this community so much. I do hope you are doing well though. Sending hugs. -Kimberli (team member)

    3. There is no solution. I now have gastritis that they believe is caused by the naproxen - ha, you think?!? So I feel nauseous when I eat...today is a bad day. I have already had 4 naproxen's with zero pain relief....

      1. I am so sorry you are struggling at the moment. Nausea is the worst, and what you’re going through simply sounds super tough. With this disease, a lot of our energy ends up going into trying to see what works and what doesn’t, and sadly that takes time and it is so tiring. In terms of pain relief, have you ver considered a TENS machine? They can be very effective. I’m attaching a link with some information.

        https://endometriosis.net/clinical/tens-pain/

        I really hope you can find something to stop the nausea, and feel better soon. Remember we are right behind you, supporting you through it all, if you need us to. – Jessie (team member)

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