Aches and pains and generally fed up

Really hope you can help me. I had a lap back in April which diagnosed stage 4 endo, as I had a chocolate cyst. Since then, I have been symptom free, as have been tri-cycling the pill. Until about two weeks ago that is, when I had my second period since the op. The period itself was ok, but since then I've had moderate menstrual cramps (with no bleeding), mild nausea, and back, neck, and arm ache.

I'm very aware that my symptoms are not as many as many of you on here - I am not in terrible pain, I can go to work, etc etc (although I did have to spend Saturday in bed with flu-like symptoms). But I'm just wondering, is feeling a bit rubbish just my daily life now, and do I just have to accept it? Do you think I have another large cyst (today, my back ache is on the left side, which is a new thing), or are these just classic symptoms of endo - cyst or no cyst? I hate being at the mercy of it. I've got a holiday booked in November which I'm already really worried about. Is anyone on medication that has really helped with these symptoms? The pill clearly isn't working for me any more.

Any thoughts/suggestions/advice MUCH appreciated. I know no one with this disease and feel so in the dark. My GP is useless and it will be weeks or even months before I can see the consultant again. Thanks.

3 Replies

  • I would wait a bit - could be a flu type virus being the change in seasons, we've had several staff off sick from work in the past couple of weeks. It may pass as you fight off the virus and you'll feel a bit more 'normal', if it does continue like this then do see your GP about switching to longer term period stoppers to give you more relief from that side of things.

    Mirena Coil was the best option for me - lowest dose of hormones and longest lasting -up to 5 years. It stopped my periods in 4-5 months of it being fitted. Made a huge difference to pain levels and was well worth it.

  • I have been exactly the same, didn't know I had endo until the cyst was diagnosed and then removed in May. Until this last few weeks I had felt fine and then developed the symptoms you have mentioned, like pms. I was given Zoladex and Tibolone, but have stopped them as they gave me horrendous mood swings and joint pain. I am wondering what has kick started the symptoms I didn't have before, so frustrating.

  • Thanks for your responses. Impatient, I really hope you're right and it is a virus. I can't bear the idea that this might be here to stay. I felt so strange today - like someone was pulling down on my arms, an aching head, and really dizzy. No idea if that is the endoor not.

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