Any advice? :(: I got diagnosed with... - Endometriosis UK

Endometriosis UK

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Any advice? :(

Rachael-lou3108 profile image
8 Replies

I got diagnosed with endometriosis 4 years ago, since then I've had 2 operations, numerous medications, injections, hrt tablets, I've ended up in hospital more times than I can think off. I've now just been told I'm not ovulating and they think my condition has got worse. I haven't worked properly for a couple of months, it's effecting my mood and my finances. I worry everyday, along with struggling with the pain. My partner is so understanding, he's great but I feel like I'm letting my family down too. I'm 22 and after a couple of hours I can't even manage walking anymore. It's taking over my life, I know a lot of women suffer with it so I was just hoping for some kind words or advice x

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Rachael-lou3108
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Caveo profile image
Caveo

Awww, bless!! It really is an awful desease that few people understand. I found out after a laparoscopy in June that I have endo and although it's great to finally get a diagnosis it's little consolation with dealing with it on a daily basis. It takes a massive toll on your life and it is literally exhausting!! Not only dealing with the physical pain, emotional fatigue but everyday things like being too tired to do things, worrying about being off work sick yet again, feeling low/depressed, strain on relationships etc etc I find this website helps me to know that I'm not alone and other women have exactly the same issues & challenges as me. Please rest assured you are NOT alone hun. Bigs hugs xxx

Rachael-lou3108 profile image
Rachael-lou3108 in reply toCaveo

Thankyou it helps just hearing that I'm not alone. It's so hard when so little people understand what how hard it is xxx

Caveo profile image
Caveo in reply toRachael-lou3108

It's tough hun as nobody can see that there is anything... not like we've got an arm or leg hanging off lol I don't know anyone else with endo that I can talk to face to face. I burst out crying in front of the nurse today giving me my Zoladex injection... I understand how it grinds you down. I too am frustrated with how little people know/understand as it's hard to get any sympathy when people just think 'oh, it's just women's problems' xx

Rachael-lou3108 profile image
Rachael-lou3108 in reply toCaveo

I know one of my friends and she's suffered for years, she was weeks away from a hysterectomy after being told she will never have children and after a final scan she was 4 months gone, I'm so happy for her and it does give me hope. I've had an awful time and it's hard finding people who understand, I moved to a different place with a new manager and she just didn't get it. I've now left, it worries me with jobs. What's the Zoladex for if you don't mind me asking? I've had pros tap but it put me in hospital I was so unwell xx

Caveo profile image
Caveo in reply toRachael-lou3108

The lucky thing for me where I work is that I have an occupational health department so they can kinda mediate as they gain access to all my medical records so can give an evaluation to my boss - hadn't reached that point yet but I think it probably will. Zoladex implant/injections put me into a temporary menopause - being given to me for 6 months. But as the side-effects were too much (nausea, migraines, fatigue, insomnia, low mood) I'm being given HRT too (took my first tablet yesterday so will see how it goes). I've been off work this week as I've felt so dreadful which adds to my anxiety worry about work too - so I totally understand where you're coming from where work is concerned, it's horrible 😞 Xx

Rachael-lou3108 profile image
Rachael-lou3108 in reply toCaveo

Ye they put me on injections which put me in a menopausal state, and hrt to give me hormones again but it made me so I'll I had a bleed on the brain, so after that they were reluctant to try me on other things which is understandable but the pain just gets worse. I have occupational health at my work, I've been referred twice and they're understanding and my boss was, but there was only so understanding they could be in the end. I just hope one day, once there's more people who know that they will finally be able to help everyone with endo xx

JulesUK profile image
JulesUK

Sorry to hear you are so unwell at the moment , it's certainly a rollercoaster of both pain and emotion. I've had numerous operations and treatments too including two periods of zolazex (one with HRT for two years) and had to take a period of unpaid leave and then got made redundant. I really don't think you can understand unless you've been through it as people don't see the hell we go through. The only thing that has helped for me is the merina coil. I know it's not for everyone but maybe it's worth looking into, it really has given me my life back and been a life saver for me. I hope things improve for you soon. x

Rachael-lou3108 profile image
Rachael-lou3108 in reply toJulesUK

Thankyou, I have looked into it but I never went threw with it. Maybe after hearing it helped I should look a bit more, I'll try anything now xx

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