Hormone Help: Hello all, it’s me again… I... - Endometriosis UK

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Hormone Help

Tangoandmax profile image
16 Replies

Hello all, it’s me again…

I’m wondering if anyone can help/provide advice with the contraceptive treatment I’m currently having issue with.

Previously I was taking desogestrel back to back no break to stop ovulation. To say this didn’t agree with me would be an understatement, I bled every day and felt pretty much suicidal. Even though it did help with the daily pain/pain down my legs.

As such, my GP changed me over to Microgynon back to back with a seven day break after three months. I’m nearing my first break but the daily pain, bloating has been constant the entire time I have taken the this pill. The daily bleeding initially stopped for about four weeks (I was over the moon) but since it’s been back, every single day. I feel like I’m carrying a bowling ball in my abdomen. Look like I’m four months pregnant, when I’m not sure I’ll ever get the opportunity. IRONIC. Also been prescribed iron as it’s obviously low, not sure what good it’s doing if I’m still losing blood every day.

I figured I’ll give myself chance to see if the break and restart helps, as I know it can take a while for your body to acclimatise. But I was just wondering if there is anything else I can ask the GP to try? They’re keen to give me the coil but I can’t currently have that fitted due to severe pain on examination/insertion of speculum due to my uterus being completely tethered to my bowel. Also not sure how well that will work for me given it’s progesterone and I haven’t reacted well to the pill or implant previously.

Currently on the waiting list at my local BSGE centre, it’s looking like initial appointment will be August. Not sure if I should just see it through or if there is anything else I can try/ask for?

Any advice would be appreciated. Sick of popping cocodamol like they’re smarties 😩

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16 Replies
Taikaei profile image
Taikaei

Oh my God I’m so sorry you are going through this.. I’ve been there bleeding for 1y and 4mo and it was just … I had to call the talking therapies as no GP was helping or tried to do something and I thought I was going to die.

The coil for me was an ABSOLUTE nightmare, unbelievable pain that didn’t calm even with strong hospital injections (I ended up to A&E 3 times due to the coil).

What I can say.. is to insist with your GP to find something to stop the bleeding. For me it was desogestrel, which I can read it didn’t work for you because you t depends on which hormonal imbalances we have but GP never check our hormones like “nah that’s not the problem”.

If they do not listen to you, use their magic card “I want to get pregnant”, when you say that they will try to find what’s wrong.

Supplements also helped me, vit. D, Omega and NAC are a staple for me but again everyone is different.

Wishing you to find relief soon and stop the bleeding.

Tangoandmax profile image
Tangoandmax in reply to Taikaei

Thank you for your response.

I’m in a bit of a weird no man’s ground because they know I can’t try to get pregnant due to severity of symptoms but im on a specialist waiting list so they know it will get sorted eventually. Which means I unfortunately cannot even use it to get where I need to be. Beyond frustrating.

It’s absolutely draining. I wonder if I could get them to check for hormone imbalances and sort those, maybe that would help. I’ll have a look into supplements too, I don’t currently take any.

Thanks again!

Taikaei profile image
Taikaei in reply to Tangoandmax

I suppose you tried already Tranexamic Acid, if not you might suggest it to your GP in the meantime.

The only thing the helped me with the pain at the time was trying some TCM , GPs might suggest to “exercise” but we know we can barely stand on our feet.

I know August is far when you are in so much pain but you can do it, you’ll see the end of this!!!

Tangoandmax profile image
Tangoandmax in reply to Taikaei

I have had tranexamic acid previously, it did lighten my period bleeds slightly so could be useful as an interim measure. Thank you, I think I will request again. Costing me an arm and a leg in prescriptions this.

I do try to make sure I do a walk per day, but honestly even 30 minutes makes me pretty immobile the remainder of the day.

ChocClem53 profile image
ChocClem53

Hiya

I’ve tried all sorts of hormone treatments since the age of 13 , so I understand your frustration . As for the coil I had one fitted in 2022 and all went well yea it was incredible painful and after 6 days I had to have it removed due to the pain and the back spasms I was bed bound and cried in pain. But I’ve recently just had it inserted again but this time they decided to do it under anaesthetic at the same time as they gave me laparoscopy, hoping it would reduce the pain which it did. however, at first, my body did reject it, and when I came round from the anaesthesia, my body had sent me into labour to try and expel the foreign object . However I persevered with it and they gave me a muscle relaxer and naproxen to cope with the pain and 2 days later I was back to work (as nanny) like nothing had happened. Hope this helps

Tangoandmax profile image
Tangoandmax in reply to ChocClem53

Thanks for sharing! That sounds a little traumatic, you’re good for persevering with it! I’m glad it’s worked out in the end!

ChocClem53 profile image
ChocClem53 in reply to Tangoandmax

No worries , I hope you find the help you need . What I would say is I’m considering getting the coil removed as the fatigue I have daily is insane . I drink vast amounts of coffee coke and lucozade just to get though the day and I have to ban when I can. But everyone is different

CathyEarnshaw profile image
CathyEarnshaw

I’m so sorry you’re going through this. Your experience sounds similar to mine. I’ve always struggled with the pill, despite being told it’s the magic solution to my heavy, painful periods caused by endo. I had a terrible time on Microgynon, and an even worse time on Desogestrel - daily heavy bleeding non-stop, plus non-stop pain, despite being on a double dose. I also refused the Mirena coil due to previous trauma, but like you I have serious doubts it would work for me anyway, given that my body reacts so badly to progestogen (worth noting the Mirena contains Levonogestrel, which is the same progestogen as in Microgynon).

My quality of life was so poor that I paid to see a private GP who specialises in women’s health and specifically contraception (via a website called The Lowdown). She recommended I try Qlaira, which is a newer and completely different type of combined pill - the progestogen is dienogest, which is the the only progestogen licensed to treat endo. It also contains a different oestrogen to most pills - it’s more like the oestrogen in HRT. It’s also quadriphasic - so you take a different dose of the hormones at different points in your cycle to more closely mimic your natural cycle - it’s the exact opposite of how desogestrel works, which tries to flatten out your cycle with the same hormone dose every day.

Alongside this, I’ve started acupuncture sessions, as I’d heard that some women find it helps to regulate their cycle (my issues were triggered by long covid which has turbo-charged my endo symptoms).

It’s still very early days, but my periods are currently much lighter and the blood is much thinner - a welcome relief after more than 40 days of heavy bleeding where I nearly ended up in A&E.

A note on tranexamic acid, as I’ve tried that too - it didn’t work too well for me when I took it on its own, but I’ve found it more effective since I’ve been on the pill. The problem of course is that you can only take it for short lengths of time - not 40 days! - but it could be worth talking to your GP about a plan for how you can take it to help on very heavy days/in an energency, which is what I did to keep me out of A&E while I was on desogestrel.

I really hope this helps and that you find a solution that helps you get your life back to normal. x

Tangoandmax profile image
Tangoandmax in reply to CathyEarnshaw

Thank you so much for this it’s extremely helpful!

Sunset-lady profile image
Sunset-lady

I bled all the time (21 months) and I finally got put on zoladex. I've now, 3 months later, finally stopped bleeding. Now I finally have the strength to do some reading and try to work out what is going on. I have fibroids, endometriosis and cysts but no pain. I can't have the coil as it won't sit in my cervix. Anyway, I have been reading a lot about being estrogen dominant and I think this is the problem. I think my estrogen hormones (and hrt) are making me bleed. Please, please read about it. You very probably need bio identical progesterone NOT progestin which is the coil. Of you are estrogen dominant then synthetic progestin is like throwing petrol on a fire. Getting the estrogen to go down the right pathways in our bodies is essential and NAC can help with that. There's a very interesting Facebook page on estrogen dominance. Read about supplementing iron too as that can exacerbate the bleeding! I had no idea about this. Please read about it xxx

Tangoandmax profile image
Tangoandmax in reply to Sunset-lady

Thank you very much for this, I will read up on oestrogen dominance. I hope the iron isn’t exacerbating the bleeding, that would absolutely be counter productive wouldn’t it, it’s already so low.

Think I’ll rebook in with the doctor anyway.

Thanks again!

Taikaei profile image
Taikaei in reply to Sunset-lady

Hi Sunset lady, sorry to jump in here but wanted to ask you about your findings on oestrogen dominance. I am using the NAC as some studies show that it improved adeno symptoms and I should say that with vitamin D, Omega and NAC I felt the difference!

I would be glad if you could share more details.

I’va also read that acupuncture helps and see some messages saying they found relief with that.

Thanks x

Sunset-lady profile image
Sunset-lady in reply to Taikaei

Hi, I'm still learning about all this myself to be honest. What I do know is that I kept having my thyroid tested 10 years ago and it came back clear, but then my cholesterol went through the roof and I got put on statins. I feel strongly that these two things started this journey as the statins altered my gut microbe due to acid reflux and bile and my liver enzymes changed which was ignored and dismissed by my doctor. Both your liver and your gut need to be working well to metabolise estrogen. Then I went on HRT and got fibroids, cysts and adenomyosis which are all linked to being estrogen dominant. I've also got stage 4 endo which is also linked to estrogen. I think I have a propensity to be estrogen dominant but kept it in check for years through exercise, cutting out alcohol and diet. HRT made me imbalanced because doctors put your estrogen up without putting your progesterone up. Lots of women are on high estrogen (and keep telling each other to have another pump of it if they feel low - which tertifies me) but not enough BIO IDENTIAL progesterone. I'm not talking about progestins here at all as they make everything worse. I'm taking vitamin D and Vitamin K and NAC and B vits, vits C and E and selenium and a collagen mix with iodine. I'm cutting down my estrogen and I'm eating a raw carrot every day (this is a very impressive hack as it binds with estrogen and removes it from your body). Estrogen is a great hormone but menopause is like a finger print as it's SOOO personal to you. Everyone's journey is different. I am starting to feel better but I'm on zoladex too which has shut my ovaries down and lowered my hormones. Despite this, I'm still bleeding a lot due to the HRT I'm on (which shows you how sensitive to estrogen I am). Sugar is a big player in all of this. When I eat clean, exercise, take supplements and sleep well I feel good. I also need sun for vitamin D 😩 I am a COMPLETELY different person in the sun. Good luck x

Cocoacupid profile image
Cocoacupid

am sorry I too have issues with severe rectal virginal disease and like you everything is so painful but in the end I had the coil fitted but had it done in the hospital it is uncomfortable but I think my coil is coming to the end before I need to change it as pain bad and have started bleeding on and off but first year I had no periods what so ever but I would occasionally have break through bleeding which is normal until it settles down. But for me the pain was pretty tense I feel for you I have fibromyalgia as well and basically I get severe reactions to anything so maybe you may have that but then I didn’t get on well with the pill as I would still bleed really heavily and was like I wasn’t taking anything but everyone is individual so what may work for one person make not work for the other. I found the implant bead for mental heath and. Also the depo injection . I think you need to speak to gynecology again and ask them for advice on what you can do as you have tried a few things . Take care x

Tangoandmax profile image
Tangoandmax in reply to Cocoacupid

Thanks for this, I’m absolutely going to go back to my GP/try to speak to the Gyne I’ve been referred to.

Beyond frustrating, all of it!

Wishing you pain free days ahead! X

Cocoacupid profile image
Cocoacupid in reply to Tangoandmax

Thank you so much my lovely and am crossing everything for you too.

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