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New to Endometriosis, Fatigue is a major issue

Posted , 3 users are following.

sophia84654
sophia84654

Hi all,

I was just diagnosed with Endo after a blood cyst was removed from my left ovary. I lost my fallopian tube as well. I don't know what stage it is or level, as my doctor has not educated me well in my opinion. I have been having major bouts of fatigue that last for most of the day, leaving me in bed and unable to move around. I am a very active person and I was wondering if anybody had some good ideas to deal with it. Also I was told I would be put in medical menopause for six months to begin by next week. Lupron has been prescribed. Anyone had any experience with this shot before I take it?

0 likes, 3 replies

3 Replies

  • nicjh
    nicjh sophia84654

    Posted

    Hello - I am suffering extreme exhaustion as well. How long ago was your surgery because I had a cyst like yours removed from my left ovary and the anaesthetic knocked me out for weeks afterwards. I am in the last week of the chemically induced menopause after 6 months of treatment but my drug was gonapeptyl not the same one you mention. This is before another operation next week. My understanding is the temporary menopause stops you bleeding so deposits and adhesions of the endometriosis shrinks and makes it easier for them to be removed. Have you been told if you will have another operation or what the plan is at the end of 6 months of treatment? It's important to be fully briefed and I had to fight for a proper consultation.

    As regards the injections I don't know the side effects of the drug you are being suggested but it's probably similar and I have found it difficult. Definitely a lot more tired. After not coping very well they have me HRT add back treatment on top so that is worth asking about. It sounds like you need a bit more info from your doctors and don't be afraid to put your foot down and resist treatment till the explain all the facts and consequences. 6 months has passed very quickly despite the side effects though. It seems daunting but I think fore it's the best option coupled with another laparoscopy to keep the endometriosis at bay.

    Best of luck with it all and I hope you get the answers you need x

    • sophia84654
      sophia84654 nicjh

      Posted

      Thank you for your story. I had surgery on June 20th. I am very familiar with anesthesia as I have had numerous surgeries dealing with other health issues. I have never felt this much fatigue. You are right. I see that you literally have to demand explanations from the doctors. They dropped it on me and gave me my options. I am not comfortable with either. The birth control pill was the first option. I was told that it was a "roll of the dice" and that it was definitely not a long term option. The Lupron injection was a three month option with three months off the injections to see if it will help the endo.

      I have a lot of lesions and scar tissue according to what was seen by him. I don't have a uterus so no bleeding. Even after the surgery, I never had any bleeding. My future is uncertain as far as surgeries go. He has not planned anything so far. I go back to him in a couple of weeks. I have had to do a lot of deep researching myself to find out the details. I will be demanding more information when I go back. I was originally diagnosed with PID many years ago. Nothing else was said or done. That was from a different doctor.

      I agree with the doctor that the injections being the best option. I don't want the pill simply because I know I will forget it. I forgot it when I was younger lol. I am older, so therefore I don't want the drama of it. The weight gain? I just lost weight over the past three years. I try to plan my activities around my symptoms, but it is very difficult. Between the doctor and the fatigue, I am disgusted already. Thank you so much for your well wishes. You maintain and get better yourself. I will be praying for you smile

  • pamela11872
    pamela11872 sophia84654

    Posted

    HI

    So sorry you've joined this group, ie sorry you have endometriosis ruling your life. My fatigue is bad, but have found ways to get my lifestyle back. And as far as the shot, yes I was put on it after diagnosis. Here is myour MAJOR hold back, they are prescibing something that many many doctors believe should only be used for a short period, as it will cause bone loss and other problems the lonet you use it. I would NOT use lupron unless you are at no other misury type option, or in severe pain.

    I was diagnosed with Endo in my right lung, gurgling in blood with cycles and ovulation and can't use Lupton now because it's ill advised to use it more than 12 months in a lifetime. Graneed mine is very rare case.

    As far as the treatments, not as bad as I'd thought, but I was menopausal. Mood swings night sweats hot flashes lol

    Good luck to you

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