I'm so tired of it all :-( please help x - Endometriosis UK

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I'm so tired of it all :-( please help x

Victoria1988 profile image
14 Replies

So I'm on nexplanon this is my 4th different hormonal treatment as I cannot take combined pill as I have migraine with aura and the coil was fitted when I had my laparoscopy but didnt stop my bleeding and caused me really low moods and a list of awfulness after a year of persisting with it I then had it out had and tried the mini pill which was stopped after a few months due to me not even being able to get a bra on due to the most painful breast lumps so I was then told to try the implant after not being in anything for around 11 months meanwhile I now have terrible back pain and sciatica the implant was great to start with but now I am 7 months in and bleeding every other week I'm so tired and also having thrush all of the time and my breasts are constantly sore and am starting to feel drained I'm also on citilapram 30mg for pmdd I'm in a good place and it's really helped me but I spoke with my gp yesterday and she said to have the implant out as it sounds like it's not agreeing with me it's not suppose to get worse as the months go on I feel like yet again I'm back to square one and I feel like I'm heading for a break down my only option now is depo and weight gain and fertility not to return for up to a year I feel like sometimes endo takes away my control over choices and I feel so he helpless I don't no what to to I want kids but not at the mo but feels like everyone around me is telling me I should because I'm 31 and everything is stacked against me please could I have some advice I'm so scared of my mental state going backwards again 😒😔 any help would be very much appreciated xx

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Victoria1988 profile image
Victoria1988
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14 Replies
Afrohair profile image
Afrohair

I would try for children at this point having endo can bring on other things like needing ivf when you hit 35 it really starts to get heated if your 31 now you might not get pregnant till 32 and what if you want more than one child do you really want to be going through a load more treatment no other advise unless you want to go hormone free and do diet changes

Victoria1988 profile image
Victoria1988 in reply toAfrohair

But I don't feel ready to have them yet I hate being put in a position where I'm told to have children it should be my choice

Afrohair profile image
Afrohair in reply toVictoria1988

If that’s your choice you have to face any consequences of course it’s your choice but you may have consequences and like I said what if you want more than one, this is not just something a person with endo would think about at this age someone without endo would think about kids at age 31

Victoria1988 profile image
Victoria1988 in reply toAfrohair

OK that's your opinion I don't really need you telling me what to do aswell I'm really fragile at the mo and don't feel like I need that advice but thankyou and have a good day.

Afrohair profile image
Afrohair in reply toVictoria1988

I’m sorry your having a rough time and didn’t mean to offend you in any way

Linley profile image
Linley

Your post is full of sadness and my heart goes out to you. If you are worried about your mental health my opinion is that trying for a baby is not a good idea at the mo. You also do not mention a partner/husband to support you all the way. The current lockdown situation has not helped but suggest another phone consultation with your GP is in order. List all the facts before her again including your worry about your mental health. Please don't give up sending you a big hug🤗

Victoria1988 profile image
Victoria1988 in reply toLinley

Thankyou so much for your reply I should have said I have been with my partner for 14 years he is so soo supportive I think I've just began to try and act like I can't deal with the feelings alone because I don't want to put it on to him I have been lucky enough to continue to work as I actually work in a gp surgery so feel lucky to have normality at the mo but it's just started to dawn on me that I'm back to square on 😔 I really appreciate your kindness xx

LRNHA profile image
LRNHA

Hey honey.

I know exactly how you feel, I have been going through the same for years.

It's awful not to have any control over your body or on what goes on with it, it always made me feel uncomfortable in my own skin, such a palpable feeling.

Like you, I am also running out of options for my hormonal treatment, nothing seems to work for me.

I wish I could give you an easy solution, but truth is I'm just as lost as you.

I've started meditating a few years ago and it helps me keep my mental health a lot.

This really is the moment for you to find your own selfcare rituals, whether it's cooking, skincare, exercise, anything you can do on a daily basis that helps you distract from all you are going through.

I know we need to keep trying to find a solution that works for us in terms of the endo and the hormonal treatment, but it's a frustrating process and you need an outlet. Find it.

Your problems won't go away but you'll feel less hopeless in dealing with them.

Also, talking to people, like us, who understand you also helps a ton.

Feel free to keep talking!

Victoria1988 profile image
Victoria1988 in reply toLRNHA

Thankyou so much for your reply your kindness have really touched me x I am defo looking into an outlet I really need one I think that is great advice and I haven't been on here in a while and it feels great to speak to ladies going through the same I feel less alone xx thankyou so much again xx

LRNHA profile image
LRNHA in reply toVictoria1988

I haven't been here long either, and I don't even live in the UK haha

But I needed to talked to people who would understand what I'm going through and it has been soo helpful.

I hope you feel better soon xxx

Moon_maiden profile image
Moon_maiden

I hope you can get something sorted soon, are you waiting for a referral to gynae?

I’ve not had children, I can’t give any experience from that aspect apart from trust yourself with how you feel. If that requires extra help, you’re in a great position to get advice. You may not be a patient at the practice you work at, but as employers they can help with great advice.

Take care 🙂

Kezv profile image
Kezv

Don’t automatically discount combined pill when you have migraine with aura. My gynae (Prof Rymer) told me a couple of years ago that more recent research suggests hormonal fluctuations are implicated in migraine with aura. My GP had wanted to take me off the combined pill when I started getting these and I was desperate not to as this was the only thing that worked for me. Prof Rymer put me on the pill continuously - no breaks - and it worked. Migraine with aura almost completely disappeared and no more periods. Worth looking into...

Victoria1988 profile image
Victoria1988 in reply toKezv

Thankyou I will have to ask again I went on that for my heavy periods when I was 16 and as soon as I went on it I was waking up most days with aura I went to my Dr and they stopped it straight away they said it can lead to a stroke :-/ but I'm happy to ask again thankyou for some new advice x

YellowDiamond profile image
YellowDiamond in reply toVictoria1988

Hi Victoria! I also suffer from migraine with aurea (since 2012) and I am also taking the combined pill continyously to manage my endo (mainly endometriomas) since January this year as recommended by my gynae abroad and also in the UK. Both doctors were aware of my history with aurea migraine. Since taking the pill I have had more frequent episodes (3 in 5 months) whereas lately I was having 3 or so a year.Before taking the pill I found that some foods triggered the aurea migraine for me and that is how I was managing it in the past.I will definitely ask again about it to your doctor.

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