Weigh in on your experience with hormone treatment/contraception etc as symptom reduction

[Kelpiestryder]

Basic questions with back story afterward as I’m sure many of you don’t want to read all of that but I can’t go on. My days are filled with pain worry and nothingness. I don’t know what to do…

Questions

Is there anyone that manages their hormones holistically? Herbs, supplements etc

What are your pros and cons on taking contraception/hormone control?

Have any of you regretted taking it vs not taking it?

What other options are there…if any atall?

i have the ‘heal endo’ book and follow an anti inflammatory diet

History

I have only started my endo journey but I suspect it the cause of many things that have been ‘misdiagnosed’

I have been referred to gynae thankfully so now I must wait.

My gp offered me hormone treatment/contraceptive options to help in the meantime. I refused but now I’m almost regretting the decision…

I came off the coil 6 years ago because I decided I didn’t want to fuck my body around anymore or put chemicals in it that shouldn’t be there. Basically went all holistic. This is when things went a bit haywire. I thought nothing of it and assumed body was ‘re adjusting’ after being on birth control since I was 13..

I then stopped taking my anti depressant ‘sertraline’ which I’ve now learnt is actually linked to hormone control and again this is where things further hit the fan! (I was also put on quitiapine which I stopped and was absolutely fine mentally). Mentally I’m totally ok, besides the pms/pmdd which I wasn’t aware of before because doctors just told me I had a ‘mental illness’. I’m very happy with life, happiest I’ve ever been…im just in pain which then causes anxiety because what even is all this pain and of course doctors keep telling me it’s all in my head!

I also stopped smoking weed couple years back and I swear that was also keeping things at bay. When I had my period I used to smoke a lot more and found it helped me manage the pain but didn’t put two and two together until now so I’m considering going back to that! Can’t take nsaids because of bowel/tummy pain!!

I am convinced I have endo and/or adeno and have done all along but symptoms have been suppressed/kept under control by the medication..

I really don’t want to go on birth control or take hormones unless I absolutely have to, I had bad experiences with all of the ones I took.

My fear is I take it and it doesn’t solve the issue it just masks the symptoms and when I hit menopause or stop taking it I’m going to be in more pain with more symptoms and then be ‘too old’ for laporoscopy or endo diagnosis. Or too near the menopause for it to be worth doing etc. I’ve already been fobbed off for decades and am having to fight tooth and nail to be heard by doctors, they all just see my notes and think I’m insane or a hypochondriac. Sometimes I worry I am but my partner reassured me I am not. He tells me I am not an anxious person or insane, it’s not all in my head and I shouldn’t be in this much pain. He thinks it’s endo too, it’s what makes sense to him out of everything! So because of him I am self advocating and pushing rather than letting the doctors tell me nothings wrong!

I’m only 34. I’m not trying to get pregnant (or particularly bothered if I do or don’t) but it is odd we’ve had over a year of unprotected sex and I’ve not conceived at all!

It’s gotten worse the past year, particularly the past couple of months. I barely get a couple days respite before symptoms flare up again! I am tracking everything. Wish I had done when I was younger too! So many memories are clicking into place and a lot makes sense now I know about endo/adeno and pmdd!!

Do I bite the bullet and take more chemical concoctions?

Sorry that was a lot! I’m just so fed up and tired of waiting on doctors to essentially do nothing and I’m aware how long people have waited for their diagnosis and treatment and I’m just not sure I can go on like this anymore!!

[Hannah818]

Hi sorry to hear you sre in pain, have you had a ultrasound, mri or ct scan ?

[Kelpiestryder in reply to Hannah818]

Hi Hannah818

Thanks for replying 🙃

I’ve had two ultrasounds/transvaginal ultrasounds…one 3 years ago when I first flagged these symptoms with my previous gp and one in January! Both came back ‘perfectly normal’.

I know that if sonographer doesn’t have endo training they won’t see it!!

I am on wait list for gynae app. Where I will push for mri as something definitely not right, I’ve noticed that every other ovulation/period cycle is excruciatingly worse than the other so I’m pretty sure somethings a miss with at least one of my ovaries!

[Hannah818 in reply to Kelpiestryder]

Yes I'd definitely recommend pushing for pelvic and abdo MRI, this is what helped to diagnose kissing ovaries and Endo on bowel in my case, hope you get your gynae appointment soon.As for hormone treatments, I've just been started on zoladex, to put me in temporary menopause, before this I was staying away from all hormone treatments even before I found out about the endo. Don't like taking the zoladex , not sure if I want to continue, only had one injection so far, have to have one every 28 days. I'm like you, don't like masking things, I've tried to avoid paracetamol/codeine/ ibropofen etc for as long as I can as I feel like I need to know where pain is and how bad before I decide on pain relief lol

[Sunset-lady]

I honestly think the worst thing you could do would be to smoke weed. I think it will destroy your mental health which you've finally got back and it makes endo worse in my opinion. The best thing you can do is to start to exercise by walking and prioritise sleep. If you are eating well then continue. Quit alcohol - this made a huge difference for me. Get outside more if you can. I struggle with progestin but many women can take it. My body likes natural progesterone. Perhaps take zoladex or prostrap to see if this helps you. Good luck x

[Kelpiestryder in reply to Sunset-lady]

Sunset-lady thanks for your reply!

In all honesty smoking weed was what got me off the cocktail of antipsychotics/depressants the doctors had shoved down my throat for decades. I found I was functional and had better clarity over my mental state than I ever had, my emotional regulation was much better and I understood myself more, and for the first time in my life I held down a full time job for 2 years…providing I had the right strain but sadly we don’t have that luxury of choice in the uk! But I know it affects everyone differently and going through hormonal changes will also have an affect on it which is why until I know (if I ever do) what’s going on I won’t start taking it again!

I used to be a postie and then go hiking/camping in the mountains on the weekends. Avid climber and swimmer, I’d take my dog for long walks/bike rides after walking 13.5miles at work everyday.. but that has all been taking away from me due to the extreme pain and fatigue I now endure. I’d do anything to be able to take my dog for a walk down the canal without being utterly exhausted or keel over with cramps! I get outside as much as I can, I’m a forager/gardener and I have a horse to tend so I get out a lot but not without repercussions. It’s infuriating.

I eat an anti inflammatory Mediterranean diet but that’s not made a huge difference in my symptoms, I was on low fodmap for a while to eliminate and then try and find ‘trigger’ foods..but I’ve found none, my partners completely stumped too!

So I’m doing everything that’s ‘suggested’ that I possibly can but there’s been no change, if anything things have gotten worse! Therefore I’m convinced i must have some crazy hormone in balance that’s just not going to be fixed holistically no matter how much I want it to! I’ve heard good things about natural progesterone but then also heard bad! Maybe I should bite the bullet and just start experiment with hormone therapy with my doctors and fingers crossed I’ll find what works! Again mixed things about Zoladex and pro strap! I just don’t want to put anything in my body that’s going to push it even more into haywire I genuinely don’t think I could handle it!

[Cailleach]

The hormone treatments can help with symptoms, they don’t stop the endo. It sounds as if the coil was helping with symptoms before as you experienced worsening after you had it removed.

However I would think you need to try and get a diagnosis, have you been referred to gynaecology? Your GP could refer you for an ultrasound as well, which can show evidence of endo or adeno, but doesn’t pick up everything, so a negative scan doesn’t mean you don’t have it. When you get to Gynae, you should really be listed for a laparoscopy. You should also ask to see someone with an interest in/ additional training in endometriosis.

I guess your GP is trying to offer you some help while you wait to be seen at Gynae? Up to you, really, but you say you did not do well with the hormone treatment you have had before, so you need to balance that out against the chance that it will improve your symptoms. No one else can really advise you, these types of treatments do alleviate symptoms, but not for everyone, and they do have unpleasant side effects for some people.

Your GP has quite a few options for pain relief that they could prescribe, so it’s worth discussing that, and keeping going back till you get a combination that works. You could also try (legal) cannabis - there is a Facebook group I found useful for advice. A lot of people find Tens machines work well too.

The Heal Endo book has lots of information for you as well.

Hope you find some solutions xx

[Kelpiestryder in reply to Cailleach]

Cailleach

Thanks for your reply!

Whilst the coil worked for most of my symptoms I absolutely hated it, I could ‘feel’ it and sometimes ‘it’ would cause me random pains, especially in the first 3 years! Could also feel it during sex..so it’s a tough call! Maybe because I’m older other hormone treatment will have differents/positive effects!

I’ve had ultrasounds..nothing found! I will push for mri/lap with gynae when I eventually get there! I’m tracking everything like a crazy person so I’m well prepared when I get my appointment! And will make sure I see specialist with endo not just an interest in!

Oddly my doctor has never offered me pain medication, despite me going in there complains about pain for months on end and that ibuprofen/paracetamol don’t work! Another thing I guess I need to push for!

Yes I’ve thought about legal cannabis but am avoiding that until I (hopefully) know what’s actually going on!

I agree no one can really tell me what to do re my treatment but I’m hoping someone might have some alternative ideas than the usual ‘take what the doctors gives’ approach as thus far the doctors have been utterly useless! Won’t even do a hormone screen! I’m a believer in finding the root cause and changing from there rather than masking symptoms and hoping that’s enough to make things go away!

Heal endo book is great, learnt so much from it, have been on anti inflammatory diet for about 4months now!

Thanks again for your reply!

[EmB18]

We all respond to things differently, so it can be worth trying different medications to see if you get on better with any.

I tried hormone treatment and it never really agreed with me, so then went down the alternative health route. I found changing my diet to a more anti-inflammatory one made a big difference to my symptoms, along with working out if any foods triggered my symptoms - wheat and sugar always made things worse for me.

Managing stress is also a big factor as that can make pain worse.

Heat, TENS machines and pelvic physio can also all be helpful in reducing pain.

Good luck.

[SeaHorse6]

Hi Kelpiestryder, sorry to read what you are going through.. I totally get not wanting to take hormonal contraception, I feel the same..

You mentioned you are interested in herbs/ supplements etc., have you heard of vitex agnus castus? Apparently it can help with PMS/PMDD and with regulating the cycle - larabriden.com/road-map-to-... .. I only started taking it 4 days ago, so too early to know if it's working yet, but I read a few posts by other women on this site who it worked for.

I also take B vitamin complex & magnesium bisglycinate. Giving up gluten really helped me as well, and a low histamine diet (if you have any allergy type symptoms). But I think each of us have different triggers.. Hope you find something that works for you, & that you can get an MRI soon too x