What is the next step?

Evening Ladies,

Feel a biy lost so could really use some advice and guidance.

I was diagnosed and treated for endo via a lap 2 and a half months ago. Before then i had the mirena coil fitted back end of January i am considering getting it removed. Since it was fitted i have only.had sex with my partner twice as it has completely killed my sex drive and i'm concerned about the impact this will have on my relationship. I haven't bled very much but have found that the pain is still there. Also i feel tired all the time and i have to really push myself to live a nornal life as possible.

If i was to have the coil removed what other hormonal treatments would be available to me? I have already tried the pill (dianette and yasmin) which didn't help and also tried the injection (can't remember the name may have been depro vera?) but that caused bad acne and mood swings so i discontinued that also. My consultant has told me to stick with it but i'm getting fed up. I think i have given it more than enough time.

Whats everyone's opinion on this? As always any comments are very much appreciated xx

4 Replies

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  • Hiya I'm here looking for the same answer as you! I've had/put up with the mirena for 18 months now. It stopped my periods for the first 12 months but they are now back. Libido is zero, mood swings and pmt is awful. Also get incredibly sore breasts every month. I've stuck it out so long as I don't know what else can be done to prevent dodo coming back? I had big op 1yr ago to remove stage 4 endo. Will be watching to see if others have answers!

  • Sorry, endo not dodo!

  • Hi there,

    Firstly I'm so sorry to hear you're having so much trouble! I can empathise completely, especially with the extreme fatigue! My doctor suspected endometriosis a few months ago and we decided to try and alleviate my symptoms via medicine before we tried surgery. I was started on levelen which has the hormones ethinyloestradiol + levonorgestrel. My pain increased, I developed migraines twice a week and my skin broke out and I had awful insomnia and fatigue. After my lack of success my doctor recommended zoely which has got different hormones containing Nomegestrol Acetate and Oestradiol. Zoely was really good for the first two months - less pain and regular periods! However I developed irregular heavy bleeding after the first two months and constant pain which meant a doctors visit and the decision it wasn't working for me. I saw a specialist and surgery was recommended.

    So I had surgery last week and endometriosis was confirmed and removed. At surgery I had the mirena inserted. While it contains levonorgestrel like my first pill which gave me so much trouble my doctor and specialist recommended trying it as it decreases the reoccurrence of endometriosis and because it's a lower dosage released into my uterus I may not have the trouble of last time.

    While your pain still occurs, has your pained lessened since the insertion of the mirena? As for getting it removed, only you know how you feel! I don't know if zoely is available in the UK? It's all just a lot of trial and error I guess. However I do suggest asking your doctor about visanne. It's used to treat endometriosis, shrinking endometrial tissue, and I've read some raving reviews. I'm going to discuss it with my specialist at my post operation follow up appointment. It's only new here in Australia!

    All the best with everything!

  • Hi Andrea5,

    thanks for responding - it's really comforting to know that other people struggle with hormonal treatments too.

    I would probably say that the pain has maybe subsided a little if that. From what i can remember it was very similar to what i was getting before sharp pain by hips on both sides and a crampy acheing sort of pain on my uterus that range from dull to sharp among bladder and bowel symptoms . I had the mirena fitted as the gynea at the time thought i had dysmenorrhoea ( which i thought was an insult) and painted it to be the miracle treatment for pain as i told him that was my biggest problem. i'm planning on going back to the docs soon but wanted an idea as to what is available to me as the coil hasn't lived up to my expectations at all. Which is a shame as i was told it's one of the best for helping endo.

    I have considered the possibility that some endo may have been missed in my lap and thats why my pain has continued but i'll try changing the hormonal treatment first to see if that helps if not i'll cross that bridge if i get to it.

    Thanks very much for your help xx

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