I have tried everything and read there is no research on if any of these medications will actually help. Has anyone just decide to come off it all and been happier?
Is anyone NOT on any hormonal medication? - Endometriosis UK
I'm not on anything after trying pretty much all contraception, all I had was bad side effects that weren't worth it. I just want a hysterectomy now.
I have tried the combined pill (various ones), mini pill (various ones), contraceptive patch Evra, the implant, but all just made me suffer, the implant was the worst actually, how I got through those 3 months I don't know. I was willing to try the Depo injection but my GP warned me off it as I had such bad reactions to the other stuff, so I would have been left with any negative side effects for 14 weeks, no thanks! And I wouldn't want to try the Mirena coil after my experience with the implant, seeing as I can't remove it myself.
Don't get me wrong, I am suffering now, hence wanting a hysterectomy, but I wouldn't want to risk making things worse with artificial hormones again.
I am so sorry you are having a rough time too. I am the exact same, apart from I tried the coil and I have no idea how I lasted 9 months. That thing is EVIL. Can I ask how old you are? I am also researching into a hysterectomy but I am only 21 and would LOVE kids. But my condition seems so bad, i worry about it daily. Stay strong
Not at all, I am 31. But I do have two children so my family is complete and do not want any more, and even if I did I am too ill to even be pregnant or look after a baby anyway, so I am more than happy to just have everything out! I mentioned it at my first specialist appointment too, and he said he isn't ruling it out thankfully. But I have to have the lap and endo removal first and see how it lies after that.
I would not rush into a hysterectomy, you are only very young and if you would love to have kids, they definitely wouldn't do it if they knew that! I can understand why it's crossed your mind though, endometriosis is completely soul destroying and leaves us feeling so desperate for it to just stop.
What have you tried treatment wise so far apart from the coil? I'm sorry you had such a bad experience with it too, it seems very hit and miss. Don't think in the long run all these artificial hormones do our bodies much good.
A hysterectomy does NOT help for Endometriosis, only for Adenomyosis. Look into excision surgery via the Nook Facebook group (surgeon list and recommendations). You can also try supplements and diet change (maybe with help naturopath), other therapies like I.e. acupuncture.
See I have endometriosis and adenomyosis, advanced stages at 21. Hence why I have been thinking about it. I am trying everything I can, diet wise also, before going for it. Thank you for your reply.
I have advanced Adenomyosis as well and I'm 47, 17 years after that diagnosed and managed so far with all kinds of alternatives and painkillers. There are excision surgeons that also look into Adenomyosis so it's well worth doing research especially when you're so young. Also check out the 'Steamy Chick' (vaginal steaming) website, I'm doing reading up atm about that and its supposed to help. Good luck x
I'm not on anything!
Have a read of my experience of it all:
"All this effort does pay off - my story - hope it helps !"
I'm so glad after my laps to have my endo excised that my specialist said "I don't think we'll do hormones, as they don't suit you so lets just see how things go"!!!
I've been on hormones for aaaages, I hated the side effect but I just struggled through because the thought of cycles without them...well they'd be awful.. Without them before my lap I still felt so much better just because the side effects had gone. After my lap I know my endo may grow back but about 11 months post lap I feel amazing, with endo symptoms around my periods, it's so much easier to manage, and now I know what my normal and healthy is
I've decided I don't want any chemicals in my body, so I'm working towards being medication free. I am having aromatherapy and massage with essential oils around my period to relax and get my abdomen moving. I now do pole fitness, yoga and core strengthening classes which actually helps the endo syptoms by releasing feel good hormones while feeling stronger. I have reduced my dairy and wheat - just a preference and have found it helps prevent so much bloating, gass, and makes the pain less intense. I am looking into acupuncture next. I'm not saying everyone should do those or that they'll all help but I personally just think if we're in pain then popping pills only masks the problem- we know we have endo but we can live with it, not be controlled by it!!
Obviously for some women medication is needed as they're symptoms are more severe, so I don't meant to offend people by making it sound like endo is a little thing - it's not, it affects every women in a different way, and we each need to find what works for you, much loves
Thank you so much for your reply. I feel like all these medications and chemicals are easily handed out. But they make life awful. That last sentence ... the PERFECT way to describe our situations. I am no longer being controlled by this crap (excuse my language). Stay strong x
Hey I’m not on any hormonal medication anymore and I still have pain issues and my endo has come back worse. Just thought I’d give you another point of view as when I was on zoladex (menopause) it helped my pain but just couldn’t cope with the side effects. It’s probably the only thing that has helped me but it’s only a short term treatment.
The depo injection is also a good treatment for endo and I was on that for a while. I’m definitely not happier without medication as I’m back to square one and even worse as my tube is now blocked and my ovaries are full of cysts etc. But unfortunately my body doesn’t agree with the treatments xxx
I’m not on anything and managing it through diet - got tested for foods I am intolerant to and cut those out to reduce inflammation in my body x
I'm not on anything but my pain is still here after my laparoscopy. I told my specialist I didn't want hormonal treatment as every time I'm on hormonal contraceptives the side effects are awful and I'd rather be in pain than my mental health be affected so badly - that is how bad the side effects are for me. But everyone is different and I believe it's a fantastic option for some people
I’m not taking anything hormonal. I was on the pill for years a long time ago, and was made to go back on it in the 3 month lead up to my recent laparoscopy 10 days ago to calm the bleeding, but I came off it straight after the lap as the pill previously made my symptoms much worse and gave me yucky side effects.
Everyone is different and I realise I’m fortunate that although my pain and symptoms are severe there are a lot of people much worse off than me, but for me personally I really don’t like having artificial hormones in my body, it seems to play havoc with all the side effects and I also want to conceive so am staying off them for good and trying to manage the condition holistically now that I’ve had my first surgery. Good luck to you, hope you find something that works xx
I have but my periods have stopped so far I'm in my mid 40's. i still have chronic pain but the hormones were seriously getting me down. The treatments aren't good enough the pain when my mirena displaced was horrendous. I'm not sure how I would feel if my periods started again. We need better treatments which aren't hormone based. Good luck xx
Harpyiai I get the impression you’re quite a practical person when it comes to your condition! It’s great to hear you questioning what’s best for you rather than just accepting the norm. You’re right, there’s no research showing any of the hormonal options actually treat it- they’re a stop gap that in SOME cases slow it down but mainly just mask it’s progression and cause a LOT of other side effects.
Have you been to Nancy Nook’s Facebook page? That was a real eye opener for me and many other thousands of women, would really recommend you take a look if you haven’t already.
A word of warning about hysterectomy- it is NOT a treatment for endo. It’s a common misconception within the gynae profession. It is sometimes the best option for Adenymiosis but NOT endo. Unless ALL areas of endo are removed with the organs (which is almost impossible to do) then recurrence is almost guaranteed. Do a LOT of research before you consider getting a hysterectomy, it comes with its own side effects including menopause (which is not to be underestimated, bone density loss and other problems.
Good luck xx
Thank you so much for your reply. I have not, I will take a look now. I have done loads of research and found that nothing seems to be a 100% treatment. I have both endometriosis and adenymiosis, but I want to do everything I can before that. Wish we would have more research into the condition to help us all x
I have been off any kind of birth control or hormonal treatment for three years now. Been doing so so well through dietary and lifestyle adjustments, movement and correct breathing (healendo.com is the place to go to for all of these), being in the sun, TUI-NA massages, Chinese cupping, NAC and soon Chinese herbal remedies and an Arvigo massage (cannot wait for that!).
I went on BC as soon as I found about about endo (7 months after the onset of the symptoms) and came off due to the severe side effects. I have stage II endo as of 2 years ago, but maybe now it's stage III. My periods are sometimes painful and sometimes not so much (if I've slept, eaten well, sunbathed a bit, haven't been stessing out too much).
Yep i gave up all contraception and anything else and i just take a natural progesterone cream to keep me regular.
That was when i was 37 and im now 45 and i am better off the pill then i was on.
I also follow a non imflammatory diet...
And see a very good osteo that works actually on my gut and womens problems.
All in all i feel and look better then i have in years.
To think that all that time ago i got told i had pcos, endo and at 41 was goin to have a hysterectomy ... i had a scan 2 years ago and the pcos had gone??? I actually got called into my gp room and asked HOW THAT HAPPENED!! God knows...
Also dont need a hysterectomy as all my hormone levels and everything seemed to have sorted themselves out.
Dont get me wrong i still suffer period wise once a month but nothing i cant handle now
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