Hi all, just looking for some advice or if you have had similar experience. I got diagnosed with acute stage 5 endometriosis in January, and the gynocologist fitted me with the mirena coil. I was told if this did t work I’d have to start HRT for 6-12 months, as you can imagine this was a lot to take in and suddenly be diagnosed with at the age of 30 and I’d never even heard of endometriosis. But I have noticed huge differences in myself since being on this medication, I have extreme fatigue all the time I could sleep for hr and need to take naps whenever possible (which isn’t ideal with work and most of the time isn’t even possible) I have intense migraines which last days at a time. My weight is increasing even though I go to the gym 3-4 times a week. But the fatigue is really effecting this ability . Also mentally I’m just not happy or myself. Anyone else experienced this . Seriously considering getting this coil removed . I seriously felt better being in pain but being able to function.
Mirena Coil Fatigue : Hi all, just looking... - Endometriosis UK
Mirena Coil Fatigue
Hi, sorry you're going through this. It's a whirlwind to navigate. Yes I had all those symptoms on the Mirena coil. You don't have to keep it in, you can have it removed. Alternatively you can keep a diary & see if it settles down - mine didn't. Have you been referred to an endo clinic, & have you had/been offered surgery? Hormones don't treat endo, they just mask the symptoms. I've never heard of HRT being offered as a treatment for endo, only to help with menopause symptoms. Was your gynaecologist just general gynae or did they have a specialist interest in endo? The pathway for severe endometriosis is if found by general gynae or gynae with specialist interest, is then for a referral to a BSGE endo clinic (highest level of specialism). You can ask your gynae to refer you, or your GP I believe if you're having issues.
Here is the link to the centre list so you can find one near you
bsge.org.uk/centre/category...
Hi Loriiim,
I saw a private gynaecologist who’s special interests are -General gynaecology, colposcopy, outpatient hysteroscopy, menstrual disorders, endometrial ablation. so far he’s been really good , he preformed a laparoscopy and found and treated the severe Endo that was there and put me on the mirena coil but in my follow up notes he stated that next steps after the coil if that doesn’t help “she may need Zoladex implant with add back HRT”. So I’ve not been referred to a specialist Endo clinic , do you think this is what I should look into ? The website you provided states there isn’t any in my area , which is a slight problem. Thank you so much for your help and advice , I was truly beggining to feel like I was going crazy .
Hi, the problem with ablation rather than excision, is endo tissue is more likely to be left behind, as they can't truly see how deep it goes as they're burning it away. I was also treated by a gynae with specialist interest & he missed all my disease (& denied I had it), but the BSGE surgeon has been able to see it all in the images taken. You can still request to be referred to a BSGE centre even if there isn't one in your area. Unfortunately it just means you'll need to travel. Obviously it's possible your surgeon has done a great job.
I'd recommend having a look at Rebecca Mallick on Instagram - she's a BSGE surgeon & posts a lot of useful information. I'd also recommend searching for the Endo Revisited group on Facebook - you can post your surgery notes here (with your details blocked out) & get a lot more information/feedback as to what your next steps should be. I can't post the links as they don't allow it here, but both have been absolutely invaluable to me for getting my head around this disease & my rights to treatment.
Zoladex is a GnRH agonist, which basically shuts down your ovaries, putting you into false menopause. It's currently recommended for no more than 6 months, due to the risks involved such as bone thinning (osteoporosis) but is sometimes given for longer with HRT. It's not really recommended for long term use but is sometimes used longer for those waiting for surgery.
Another thing you could look at is tranexamic acid if you haven't tried it already. It doesn't do anything to halt the disease but can help with heavy bleeding & pain. I took it for 8 years before I had the Mirena coil fitted & am about to ask to try it again. Obviously it doesn't help everyone though (like everything else).
Hiya,
Thank you for so much useful information. I’ve just followed and joined the social media pages you suggested and your right the Facebook one is incredible!!
I’m definitely going to look into getting a BSGE referral . And I’ve contacted my gp about the fatigue and hopefully going to get some bloods taken to see if it’s anything to do with that.
As for the tranexamic acid I’ve been proscribed that which helped with the massive painful blood clots I got but that about it. Also been given Mefenamic acid For the pain which basically does nothing , a useful go I saw after having surgery told me to take the codein and naproxen (not at the same time) that I’m already prescribed for migraines . Only issue with that is the prescription I get that’s meant to last 3 months barely last 2 due the the fatigue and migraines that go along side it. This disease seems to just take over you life and you never know which way to turn 🤣
That's ok! I feel like they should be given out to everyone as soon as they get a diagnosis. Or rather the information/pathways should be more clear to begin with!
Yeah definitely worth getting bloods checked just in case your iron levels are low or something.
I haven't tried mefenamic acid - maybe I'll ask my GP about that one. Have they prescribed you a gastro resistant tablet to take alongside the naproxen to protect your stomach? I was prescribed omeprazole to take at the same time. The problem with naproxen & codeine is they both cause drowsiness, which won't be helping your fatigue, & also codeine can cause pain sensitivity meaning they'll become less effective as time goes on & you'll need to increase the dose. Depending on how frequent your migraines are, you could ask your GP about trying some triptans instead if you haven't tried them already - they still cause drowsiness but you generally just take one, rather than x amount of doses. You just can't take more than 10 a month cause they can cause rebound headaches/migraines which results in addiction (I wasn't told this & was taking them daily for years!!). There's also frovatriptan which you can try as a preventative during/just after your period if they're menstrual migraines (unfortunately this one didn't work for me). Or if you're getting a lot you can ask about preventatives - like everything else, it's all trial & error, & unfortunately like endo, migraines are severely under researched/funded. My migraines became chronic a couple of years ago (I've had them since I was 11) & I'm now on Botox injections every 3 months & Candesartan (on a low dose, because it lowers your blood pressure - I was pulled off these previously), & take triptans & codeine for breakthrough pain as I've developed an intolerance to naproxen & ibuprofen, which now cause gastric pain! Other things I've tried are beta blockers, anti depressants, magnesium & coq10 coenzyme. But worth speaking to your GP & asking for a referral to a headache specialist if you're getting a lot of them.
Hi Lori ,
No not been prescribed any gastro resistant tablets at all never even thought about that to be honest . But having just googled it I'm surprised they haven't ! My migraines are definitely hormone related , but they are more frequent with the tiredness for sure . So definitely going to question getting the
frovatriptan. I've read a lot about Botox helping with migraines I used to live in LA it's a big thing over there but I was prescribed sumatriptan which seemed to work perfectly so never needed to. I came off all forms of birth control 4 years ago deleting covid and never felt better i myself fair enough I have chronic pain and stabbings but mainly only before and during my period but it was truly never that bad I lived with it and treated it fine. This coil is definitely causing more problems that I believe it's solved.
Thank you for your advice
Definitely worth asking for them, especially if you're having to take a lot of naproxen. I still developed an intolerance despite taking them with the gastro tablets & only taking them with food, but I was also having to take them daily for a while. Good luck with the frovatriptan - I hope they help! The Botox can be helpful - it has helped me by reducing severity & number of migraines, but I was still needing to take painkillers up to 15 days a month for headaches (sometimes very mild but persistent, & still gave me the anxiety of potentially getting a migraine), hence starting an oral preventative alongside it. I will probably have to look at the CGRP blockers next, but reluctant to do so due to the side effects of bowel symptoms they cause (already have these due to endo on my bowel/recto-sigmoid colon). Botox does seem to be the one with the least side effects. As for contraception, yes it does frustratingly seem to be a toss up of what symptoms you'd rather be dealing with. I have also had enough & have come off all contraception & won't ever be going back on - like you I felt the side effects weren't worth it. Hope you end up finding something that works for you 🤞🤞
So sorry for what you’re going through ! The mirena coil caused me bad pain, I had it removed after 4 months. A few months later in preparation for having ablation, the gynae found I had a heart shaped uterus so the mirena wouldn’t have been held in place properly by the uterus walls. They don’t pre-check this before inserting mirena, I think they should! Then they make you feel like you’re being overly dramatic about the pain.
I also use Mefenamic acid for pain, it works well but it’s not for long term every day use, similar to tranexamic acid, which I have also used to stop bleeding which even mefenamic acid wouldn’t stop.
🧡
Hi CFin ,
Sorry you had so much pain with your coil. When mine was fitted I had one week of feeling fine on no painkillers, the second week after my laparoscopy and ablation and insertion of the coil I was in chronic pain and told to take my migraine meds and codein for the pain , another week later I was totally fine and it’s causing. I pain currently . Just goes to show how everyone is different . Luckily the did examine the shape and size of my uterus event took measures apparently I have a wonky tilted low sitting uterus , whatever that’s meant to mean.
I don’t really notice the Mefenamic acid or the tranexamic acid making much different other than smaller blood clots . So who knows
Definitely feel like my current gyno isn’t listening to me and think I’m an idiot , I told him about the horrendous mood swings and depressive states I was getting into but that I’m ok as I’m aware it’s only the hormone making me feel like this it’s not real. And his only response was take St John’s Wart and EveningPrinrose Oil. Which I’ve been doing for 2 months with absolutely no effect whatsoever. I’m visiting him again in the 29th April . I’m going to ask him to remove the coil I think but I’m scared he’s going to be very reluctant and admit and persuade me to keep it in.
Hi ChocClem53, sorry for my delayed reply! Your experience really sounds awful! Please do remember, it’s your body and you know your body better than anyone, if that gynae tries to convince you to keep it in and you feel you can’t endure the pain anymore, insist he removes it and hold firm. And if he won’t , I suggest you ask for referral to another gynae. It’s all very well for male gynaes telling us what we should feel and endure yet they will never know what it’s like! Incidentally mine is also tilted, makes it difficult for them to get into for any interventions, and painful! Mirenas aren’t for everyone unfortunately and are very painful when they go wrong. I wish you much strength, and hopefully some relief soon xx
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