Endometriosis UK

Help me?!

Hello, I'm 32 years old, started my periods at 9, they've always been heavy, I was put on the pill to help me with this at about 11. Stayed on hormonal contraceptives until 2013, I then switched to a copper iud. I've been fine with this up into Feb this year, when I started to have really heavy, (flooding, clots etc) very painful periods again. It's got increasingly worse, I've been bleeding between periods, (tmi-have old brown blood at the beginning, end and in between periods) I have a lot of pain which I'm on codine for, and I also take tranexamic acid to help with the bleeding. Sometimes the pain takes my breath away. I have pain almost every day now. My bowels are affected and I get bouts of unexpected diarrhoea, especially around my period. Pain after, sometimes during sex. Perhaps the worst is just how exhausted I am, to the point I don't want to get out of bed most days, can't be bothered to do simple things, and I need to-I'm a teacher. Dr referred me and today I saw a consultant. He advised I go onto the mini pill to try and regulate hormones, but that I could have Endo, don't want to do the lap until I've been on the pill. Then he discharged me from outpatients with a note to dr for 12months mini pill. I originally came off the pill as I struggle to manage my weight on it, I'm already overweight and I don't want to make it worse. I realise I need to take the pill and see how I go, but right now I feel so so down about how every day is a struggle with exhaustion and I don't know what to do about it. I used to love running, it helped me get weight off and energised me, but I fractured my coccyx in 2015 and suffer from sciatica since which makes it difficult. I don't know if I should go back to my gp and tell her how much worse things have got, emotionally for me, or just take the pill and hope for the best. If anyone has any tips or advice for me, I would really, really appreciate it. Thank you x

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I'm not far off from you, 33 when sh*t hit the fan, although I've had difficult periods since I was a preteen and I started menstruating.

The near daily pain is one thing, but the exhaustion is really just unbelievable! My work just scheduled me an appt with Occupational Health and the doctor there told me they want me on a severely restricted work schedule - from full time 5 days a week to Monday, Wednesday, Friday for 4 hour shifts, so 12 hours a week... 😶

I can't afford that.

But it was the doctor's orders as she said I'd "only" need to be on this reduced rota for the next six months as by then, I should have been able to get the diagnosing laparoscopy done and my treatment should be progressing by then.

You're not alone. I'd go back to your doctor. 12 months is WAY too long to expect you to wait around without relief. As for work, maybe ask them about a consultation with Occupational Health, although I don't know how that would work for a teacher...

Be strong, hang in there! You've got partners in misery here. 😉

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Hello, thanks so much for your reply, I'm so sorry you too are in this boat! It's just awful. I went back to my gp today and discussed what the consultant said, she'd also had a letter from him that outlined it and said the next step would be laparoscopy if pill didn't help. She offered me more pain killers, and suggested maybe taking codine at a lower dose more frequently, along with a laxative. I tried to explain that I could deal with the pain and the bowel issues if I didn't feel so so tired and low. I've never felt like this in my life. Extra sleep, less physical activity-it doesn't matter what I try I'm just exhausted. She didn't have any answers for it, other than come back for your blood taken so we can check your iron again incase it's that- so I have an appointment on Friday. She wants to see me after one months trial on the mini pill. I'm so scared of putting more weight on with it I won't dare eat much which won't help my energy levels. My management are two ladies who seem to appreciate what I'm going through and are supportive and understanding, and I'm hoping they stay that way, they sent me home yesterday when I got there after the hospital as I looked terrible- the examination set my pain and bleeding off- and I've had today off, but I should probably try and get myself in tomorrow. Thank you so much again, having support here and knowing I'm not alone in this really makes a difference ❤️

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Yeah, I've seen loads of other women say that the fatigue is really the clincher as well and I agree fully. I've been working through medium to high levels of pain for years now as I didn't know anything was wrong with me and just assumed all the pain was normal. That didn't stop me.

It's the fatigue that has taken over my life that is the real issue. I can't do anything productive, even when my pain levels are low because I feel so utterly drained and wiped and if I try to have some caffeine and push through it, I'll pay later as it seems to set me back a few days if I overexert myself.

Hopefully someone somewhere will come up with a solution eventually.... ❤️

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When I said to the man consultant I was worried about putting on weight with the pill, he said 'join a gym'. Join a gym?! Are you for real?! I've just told you I feel so exhausted I don't want to go lay in the bath or wash my hair it's too much effort ... normal day to day things! But yeah, I'll go get myself to the gym, thanks for that 😂👍🏻🤦🏼‍♀️

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Dear emmaquinny

Sorry to hear this. We have a team of volunteers who operate our helpline if you'd like to talk it through with someone. Our rota is available online.

endometriosis-uk.org/helpline

Louise

Endometriosis UK

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Thanks Louise, I'm so glad I found this support group and know I'm not going crazy, other people are in the same boat. I just don't know what to do at all, and I don't have the energy to work it out.

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