No hormonal treatment and natural cycles with endometriosis.

[Bagel96]

Has anyone on here decided to have natural cycles and not take any hormonal treatments after endometriosis diagnosis? Especially after laparoscopy and removal surgery? I don’t like the thought of being stuck on hormonal treatment forever (other than when trying to conceive) as I never feel like myself when taking anything hormonal as well as the other side affects. On the other hand it appears to be drilled into you that the only way to ‘treat’ endo is with being on hormonal medication. Currently on dienogest, will it just return full force if I stop taking this or can I have natural cycles? What are peoples experiences?

[endo_evie]

I had my last surgery in January 2020 and have tried two mirena coils since (only had each for a month as it was too painful!). After about 2.5 years my symptoms started to progress again, and the last 6 months have been unbearable. My new endo specialist has said without going on some hormonal treatments, we have limited options 😔 would be really interested to see what others do with it, because it really does feel like hormones are pushed for and I’m really reluctant to do it again!

[Bagel96 in reply to endo_evie]

Thanks for your response and I’m sorry your symptoms have returned! It really is difficult to decide what’s best. I was only diagnosed in July this year, just hate the thought of being constantly on medication. But if it out weighs the chances of recurrence of endo being quicker or any painful symptoms returning I need to decide if I live with side affects from hormonal treatment or endo being potentially worse! I hope you find something that works for you.

[Tangoandmax]

Hey, it was explained to me like, your own hormones are what feed the endometriosis, which is why being on hormones to stop your natural period help with slowing regrowth, I don’t think there’s enough evidence to show how much of an impact it has, it’s like the best way to hinder it.

I was on Microgynon for a decade for bad periods/birth control. My pain and problems started around a year after stopping taking this.

I’ve recently had a lap confirm endo and Adeno, I’m now on my fourth pill. There are hundreds of options with varying levels of hormones and I got to the point where I was in pain/bleeding daily, so was desperate to try anything post surgery to give me the best chance. I’m currently taking mercilon which (combined pill) includes a lower dose of hormones as a gentle sort of approach as all progesterone only I have tried have been terrible for me (mentally/skin/bleeding wise). Mercilon is the only one where I haven’t had any side effects, could be worth a try? I take on a tricycle basis so break for a bleed after three months x

[Bagel96 in reply to Tangoandmax]

Thanks for your response it might be worth me trying different pills to see how I react, I guess everyone reacts totally different! I just find it very frustrating! Dienogest has completely stopped me bleeding which is a blessing but feel like my moods completely changed on it which is not great.

[Username12345678]

Hi, I was diagnosed after 8 years of symptoms following suspected appendicitis which turned out to be widespread stage 3 endo. After emergency surgery and then a lap to remove the rest 4 months later I went without any treatment as I was only offered the mirena as an option. I had about 12 months without any issues but then my symptoms came back with a vengeance. In hindsight, it was a mistake as I just allowed the endo to grow. Following that I had 2.5 years on Prostap and a horrendous year with a mirena. I then opted for a full hysterectomy (age 46). Wish I’d done that sooner!! My best advice is to get lots of advice and more than one medical opinion (if you can) The surgeon who did my initial diagnosis was so dismissive and unsympathetic that I made choices more down to his attitude rather than making the right decision for me. Additionally I shouldn’t have stayed on the mirena for so long as it was causing me so many issues. What works for one person doesn’t always work for the next so you always need to listen to your body. That said please don’t let me put you off the mirena as it works for so many people, just wasn’t right for me. Good luck with your journey x

[Bagel96 in reply to Username12345678]

Thanks for taking the time to reply! I also felt this with my surgeon following laparoscopy, he gave me the one option of dienogest and dismissed when I explained my side effects since taking it and telling me it was nothing to do with the dienogest. He made it out to me that this was my only option moving forward. But maybe I do need to do a bit of trial and error with other things!

[Username12345678 in reply to Bagel96]

I also agree with many of the other comments on here about diet and lifestyle factors. Anti inflammatory food, gentle yoga and gallons of lemon and ginger or peppermint tea certainly helped me. I’d also highly recommend taking a look at Dr Brianne Grogan. She’s a pelvic health specialist in the US and has heaps of free videos on you tube and via her email subscription that can really help x

[Peptink in reply to Username12345678]

Have you had any more endometriosis since having the full hysterectomy? And, were you put on any estrogen meds? I’m hoping for you that things are better and your symptoms have all but diminished.

[Username12345678 in reply to Peptink]

Hi, since the hysterectomy I’ve been absolutely fine! The only time I have any discomfort is from scar tissue but that’s to be expected. I have been taking a synthetic hrt (tibilone) which has been great but I’m now seeing a few menopause symptoms coming back so I’m looking at changing my hrt at the moment. It’s amazing what you put up with with this awful disease. When I came out of surgery after the hysterectomy I was prescribed a week of heavy painkillers but I did not need to take them as the pain was nothing compared to the pain endo and adeno had given me. I’m amazed that in the 17 years I suffered I was never offered any pain relief by the doctors.

[Bumblebee11]

I had my twins nearly 7 years ago. I haven't been on any hormone replacements since then.

I've had removal surgery once before and I can tell you my endo is now back with a vengeance. I am still refusing to go on the pill (which is my doctors favourite suggestion) as I have tried 7, the coil, which I previously had (and fell pregnant with my twins), the implant which I have also had. None of those things helped me- and the side effects were much worse!!

In short answer- yes, me! My endo has been horrendous with artificial hormones and without. Sorry it doesn't clear things up xx

[Bagel96 in reply to Bumblebee11]

Thanks it’s good to hear from both sides of people taking hormonal treatment and not! As it seems it doesn’t always work for everyone.

[TandE]

Hi. I have no answers I’m afraid but I am contemplating the same thing because of the side effects I’m suffering. I’m on dienogest too but terrified of what might happen if I stop taking it! It’s certainly helped - although not cured - my pain but I’m always wondering if there is a better option out there. Maybe one (that isn’t mirena) that allow some kind of natural cycle to occur 🤷‍♀️

[Grace89 in reply to TandE]

There is, have you heard of bioidentical hormones? Search for Dr Marion Gluck’s books and read about them. It will change your life. Xxx

[TandE in reply to Grace89]

Hi, thanks for your message. Yes, I have heard of them, and read extensively on them when researching HRT options, but I have been told there is no bioidentical progestin that works in the same way as dienogest. Hmmm... I will ask the consultant again on my next appointment though.

[Grace89 in reply to TandE]

I think they are lying to you. You will probably need to see a private Dr, NHS don’t prescribe them. Read academic journals and books by Marion Gluck etc, articles backed by big pharma will lie to you. As they can’t patent bioidentical hormones or natural folate for example, they therefore can’t make money from them, therefore don’t prescribe them. I can screen shot some pages from her book if you want. I can’t believe the amount of women being lied to by the NHS and consultants working for big pharma!! Studies that can make the most money win, remember that. Absolutely doesn’t make them right. These study outcomes are the influence that many drs are under. If they say X hasn’t been tested enough, well basically it’s because it wouldn’t make them any money. (And the tests on synthetic hormones are all way out of date at this point, in their eyes they don’t want to ruin and good thing by the new results showing something up.) Sorry for the rant. I’m just super duper passionate about women not being given synthetic hormones that ruin their bodies anymore. Xxx

[MRBO in reply to Grace89]

Hi Grace89, I was wondering how you got hold of your bio identical progesterone cream? Did your private GP prescribe it or did your gynaecologist prescribe it? I was told only my gynaecologist would prescribe it so I asked and she said I would only be able to get the mirena coil which does the same job (I know this is a blatant lie!!)

I’ve also looked online and can see you can buy these but not sure which ones are legitimate or work and was wondering if you could share any recommendations on this❤️

[Grace89 in reply to MRBO]

If you live near or can easily get to London go see Marion Gluck. This is the link to her clinic website: mariongluckclinic.com/.

Also read her books, just search her name on Amazon.

This is obviously private healthcare, and if you can afford it, it’s the most worthwhile thing you can do for yourself.

I’m actually thinking of starting a petition and sending it to the government (never done this before, so not exactly sure how it works) on the NHS being allowed to prescribe bioidentical hormones. I’ve literally just recently become ridiculously passionate about this. I’m currently reading a book called ‘How the Pill Changes Everything’ by Sarah Hill and the NHS is making me mad. (Don’t get me wrong I love it at the same time and I am sooo grateful for it, but man, come on, there are some things that need sorting out.)

Sorry rant over lol.

[MRBO in reply to Grace89]

I’d love to help you on this, I’ve never done it either. I do live in London too, would you be up for meeting for a coffee some time. I think k it helps to surround yourself with likeminded females when stuff like this is going on! I’ve read that book too, makes me so angry!!! Message me if you’d like to chat! ❤️

[Grace89 in reply to MRBO]

I don’t actually live in London 😢 But yes absolutely so good to be around people on the same page!! I’m still learning, but up for sharing interesting facts I find!! I’ve got a few books on the go atm.

[BusyLizzieP]

I’ve avoided taking hormonal contraceptives since my diagnosis, because they make me crazy and panicky. Like you, it felt like hormones were the only option I had and I felt really quite despairing after diagnosis. But I managed to find a few books and other things that can help with some of the symptoms like sciatica and bloating. I can recommend “heal endo” by Katie Edmund, which sets out some changes you can make in diet and lifestyle to help.

I’m on a waiting list for a second surgery, as I have bowel involvement. So I don’t know how exactly it’s working but I feel better in myself than when I was on contraception, so for me it’s worth the hard work I’m putting in.

[Earthmother1]

This is an interesting topic as 3 weeks ago I decided to do the same, mainly to see where I am as I'm in the peri/ menopausal phase of my life. So I came off desogestrel after being on it for 5 years. During those 5 years I suffered what I can see now as depression, complete loss of libido, fatigue and tiredness, no energy, sometimes it was an effort to breathe! I was also getting endo flares, but I didn't realise they were endo flares I thought it was ibs, as I thought I was over endometriosis due to being on desogestrel, I also think that for the past 5 years I've been in an on off state of disassociation. Just over 3 weeks off desogestrel and almost immediately the fog and depression slowly started to lift, and a little tingle of libido coming back! That's great! But then the pain started to creep back, lower back ache/ pressure, a heavy dull ache in my lower abdomen, shooting pains in my rectum and vagina, a mild bit of spotting a week after stopping the pill and now there's more blood, more pain, but a strange release of calmness too. The anxiety seems less, the tight feeling of a wound coil inside me has been released. I can breathe again. I saw my menopause specialist on Saturday and asked for him to refer me to an endometriosis specialist, but he said that endometriosis symptoms only come on with a period so the endo team wouldn't see me as I have to have a poor quality of life for them to accept me. I tried to explain that I have been in constant chronic pain for the entirety of my fertile life, but the pain is my norm. The fact that the pill caused 5 years of depression and disassociation thus giving me a poorer quality of life meant nothing to him, he talked over me and I shut down. I was hoping that an endo specialist might be able to help me more through the menopause transition as hrt (estrogen causes a histamine reaction in me), so he told me he'd see me in 4 months. I had a vaginal ultrasound and was told there are no follicles on my ovaries the uterine lining was thin and whilst she couldn't say whether I was through menopause, she said I was definitely on my way, so the bleeding I'm having right now has confused me as I thought being on the pill for so long and the ultrasound would have meant no period for a little while, I didn't expect bleeding so quickly after stopping. But my hope was to see if I could also give up the hormones and naturally deal with endometriosis. But have to admit i feel like I'm stuck between a rock and a hard place!

[Sunset-lady]

I went for over 25 years without any hormones or help. I didn't know I had endometriosis. I developed my own strategies for dealing with my nightmare periods. Diet, supplements and life changes really helped me but peri- menopause floored me. Everything flared - it's like being a teenager again but worse because you have loads of responsibilities and you're knackered. Endometriosis and perimenopause is tough x

[Earthmother1 in reply to Sunset-lady]

Hi! You're right! It is tough, finally someone speaking my language! I just rang my drs and asked for a dr who has an interest in women's health, namely endometriosis and menopause, not one dr has an interest, however, that same dr surgery has 3 drs with a keen interest in men's health. It sucks being a woman with endo

[TandE in reply to Sunset-lady]

Yes! I was fine with no flare ups for nearly 10 years managing it with diet and lifestyle changes. But then perimenopause... just awful. Really empathise with you.

[Bellebell]

My symptoms, although I suffered from them for over a decade, were slightly atypical as the issues really started with my bladder and pelvis towards the end of my period rather than any specific issues or heavy bleeding during my period. It was after my first lap that my periods became much heavier and painful, and I also bleed a lot in between periods too, although at this stage of life - perimenopause - I have no idea of whether it is that or the endo and no medical specialists seem to know either. I was offered (and have if I need it) some of the pills to stop my periods mentioned above but I've never taken them. Like Sunset-lady, I learned to handle the situation through diet, exercise and just giving into it. For example, I am really active but I have my period right now and that means for 3 days just don't do anything and plan around it. I've gotten over the frustration of suddenly feeling really weak and ill for a few days each month, let myself get over it and then back to my usual life. I'm lucky to work from home and cancel other activities at this time of the month. If I go on holiday, I try to plan it around my time of the month, which is luckily quite regular, or I go on the pill to stop my period just for a few weeks so I can enjoy myself.

Do what is right for you. I didn't like the bullying from the hospital and the threats they would stop seeing me for specialist advice as "there was nothing else they could do". I see the doctor less frequently now and I have loads of questions for whenever I get another appointment but ultimately it's your body. I did an elimination diet and I found out what specific things were not working for me. It differs from person to person. Supplements might also help. The way I see it is that either you manage your endo symptoms or you management your treatment symptoms.

[Southwestsmiler]

Hello. I have now tried pretty much all progesterone only treatments after my lap and excisions in 2017/18. For me none of these stop the bleeding or associated symptoms to prevent endo and all of them have impacted my mental health where I have bipolar. In simple terms if you don't stop the bleeding then endo will return but what time frame I guess really depends on where you have it and how aggressive it is and how unmanageable the symptoms are to live with. Because I have continued to bleed with 'treatment', have symptoms, and the impact on my mental health, I came off treatments in Feb 2023. It was too messy to understand what was going on with my mental and physical health, my natural hormones at 39, and I'd not had a 28 day cycle with an actual period in about 20 years! Given the progesterone treatments were not stopping bleeding for Endo then I knew this was only going one way in terms of further surgery at some point but I'd become so unwell with progesterone only. It took about 5 months for my body to get into a proper menstrual cycle again. There were elements of definitely feeling more free cognitively, less foggy, less moody, less joint pain, a clear picture of physical symptoms during places in my cycle and noted on the clue app, making me feel more in control and understanding this in conjunction with my own cycle of natural hormones. However by the end of 2023 and to date my one monthly period has now become completely unmanageable with heavy clotting and blood loss for 7 days. I have about one good week of minimal symptoms in 28 days. Because of the complications of my Endo and my bipolar, where progesterone hasn't worked to stop bleeding and where it makes me mentally unwell and where I can't take oestrogen, I'm finally on the list for a hysterectomy (hopefully in summer 2025) as I have no other options now. It's a relief but personally I wish I had been offered this 10 years ago as it would have given me a better quality of life and where there has finally been some acknowledgement by gyny and phyciatrist about the complexity of hormones, hormone treatment, Endo and bipolar. I've just started the decapeptyl injection, largely to test shutting down the ovaries, and taking them out at surgery, but it certainly isn't helping on the bleeding front where it's been every day since the injection. Personally I can see why you may want to try this approach to form a cycle and some sort of a picture of symptoms with your natural hormones and rhythm but it will return over time so you have to be mindful of that if not taking anything, but for me it had returned anyway and I have another illness to manage also. I hope it's ok to mention, because often these things aren't discussed at all, but if you haven't done so already and are intending to have children, then it's important to understand your fertility position, your endo (if this impacts fertility), and any choices you make now of treating endo, impacting your future choices. Not everyone's fertility is impacted by endo at all or you may not be wanting kids, but better to have conversations now to educate yourself and protect fertility if wanted/needed . Now I'm nearly 41 I'm deemed over the hill for kids which is why 'they' have finally agreed a hysterectomy. For me it felt like one minute I was 28 years old with endo, spending the next 10 years focussed on managing it, and then I realised I never had a single conversation about fertility pre or post surgeries/treatment! Good luck xx

[Bagel96 in reply to Southwestsmiler]

Thanks for taking the time to reply, yes fertility is another concern of mine as I am 28 and have no children yet but do plan for them in the future. Before my laparoscopy my periods/bleeding were pretty much one week on one week off and I was on no hormonal treatment. So it had always been on the back of my mind whether there was fertility issues underlining due to the endo. It’s appears everyone has totally different experiences with treatments vs natural so it’s good to hear everyone’s experiences.

[Bakewey]

I refused injections as I was worried about the side effects, and It was impossible to insert a marina coil (even with surgical conditions). I was not keen on hormones as I already felt so low that I was concerned that I would ‘crash’ as my body adapted. I hated the idea of being flaky at work and cranky with my long suffering husband.

After my diagnostic lap, my endo flared up. It became worse than ever. However, 4 months later, I managed to get a ‘cancellation’ total hysterectomy and endo removal. The recovery from this is still ongoing (it’s been 5 weeks now) and I do wonder whether I should have taken the jabs as they may have shrunk the endo… but who knows, would this have made recovery easier?

Though my recovery has not been smooth (return to theatre and 3 other minor procedures since the hysterectomy), I am glad that the toxic feeling inside me has now gone.

My advice to you is to trust your instincts and do what feels right for you. With endo there is no one size fits all so we can all only do what feels right for us at the time.

Good luck with everything 🍀

[EmB18]

I think different things work for different people. I never really got on with hormone treatment, so starting looking into alternative therapies to manage it. I found changing to a more anti-inflammatory diet made a big difference to me and also found pelvic physio and homeopathy helpful too. I think you have to do what feels right for you, but there are lots of other things out there you can try if you feel hormone treatment isn't working for you. I felt really uncomfortable saying no to more hormones as was being told that was the way to manage it by the gynaecologist but luckily I managed to avoid having to go back and take them.