Endometriosis UK
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Endometriosis/adenomyosis specialist - Herts/London

Hi

I was diagnosed with endometriosis in 2011 by [edited to comply with our code of conduct] He removed all the endo he could find. He did say that he also suspected adenomyosis. I was offered the chance to have a mirena coil fitted alongside the laparoscopy, but I wanted to see how much benefit I got from the removal of the endometriosis alone. After the laparoscopy I felt a little better for a while, but still had incredibly painful periods.

I still do and I've just sort of carried on ever since. I started taking raspberry leaf capsules and drinking raspberry leaf tea a lot. This helps, but I still struggle with the pain every month. Lately I've been getting more pain at other times of the month - like being prodded with a hot poker. My energy levels are never fantastic anyway, but about 10 days before my period I feel overcome with tiredness. I try to plan my life around the monthly pain and tiredness, but it's a crap quality of life. I can't go on like this. I'm fortunate to have private healthcare through work, but I've since moved south for work so I need to find a new doctor in Hertfordshire/Essex or London. Please recommend if you can help me find a southern [edited to comply with our code of conduct] if you have any tips on that might help cope with the pain and tiredness.

Thank you

gwen

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It might be worth giving the Mirena a go, I was very reluctant at first and scared about side effects but six months on it seems to be really helping me 👍🏻

xxx

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Thanks. I have tried to get the Mirena fitted at the doctor and it was not happening. I had smear a few weeks ago and nearly hit the ceiling it was so uncomfortable, so not sure the Mirena will happen at least without sedation.

gwenx

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I had my first mirena fitted privately (I can recommend a good gynae by direct message). He gave me a pessary to relax the cervix pre- insertion and insertion was bearable.

The second was on the NHS under general anaesthetic as I was having a colposcopy in day surgery.

I'm ready for my next and last one (I'm 48 and peri- menopausal) but considering going private again.

Hope you find a good gynae.

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I've really liked my mirena. Definitely worth a try.

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What symptoms has the Mirena helped with? At the moment, I'm really struggling. I get severe pain, fatigue and nausea. I'm employed, but honestly don't know for how much longer.

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Lighter periods, like in the normal range and not like you're passing half your body weight in clots, pain free periods, less anaemia, no PMS related fatigue, gave me my life back. Could stop planning my life around my periods.

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Why do you think your job is at risk? Time off?

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Thank you littlebrownbird. I'm encouraged to hear your experience. My periods aren't that heavy, but I'm in agony most months. I didn't expect the Mirena to help with fatigue. I can sometimes feel it come over me in an afternoon and it's the most debilitating fatigue.

To be honest, the job situation is not helped by the health issues, but I am also very stressed at work at the moment and not coping very well.

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You have to take as much time as you need to get treatment. You'll be covered by sick certificates and doctors notes for any absences over 7 days. (I'm an HR manager so can see both sides 😉).

I think my pain, when i had it, came from stress about my condition. I found changes in my diet, and meditation helped as did accupunture.

All worth a try.

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In all honesty, I think I have work-related stress as well. I'm struggling to concentrate, struggling to sleep and feeling really overwhelmed at work.

The endo/adeno issue doesn't help admittedly, but work is and has been too much.

I've been at my place of work for less than 2 years and worried they'd get rid of me for time off.

What changes did you make to your diet? I tried acupuncture, but it didn't help. I'm trying to do meditation at the moment, more for the stress than anything.

Thanks

gwen

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I was following the healthy eating guidance of a nutritionist. Less sugar, cut down caffeine, more fresh fruit and vegetable, more protein. The usual. I found the meditation app Headspace helpful. Regarding your job, you're protected as the company have a duty of care towards you. Have you spoken to your manager about your work-related stress?

That can't be helping your condition.

Worth doing as they may be able to make some reasonable adjustment to your work until you are in better health.

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I'm at Guys bsge clinic under the female gynae there. We shouldn't mention names on here but you should find her on bsge website -

bsge.org.uk/centre/

She also sees people privately and is happy to switch to NHS for surgery if you need more specialists there.

Good luck

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Hi! I had the mirena coil fitted in 2013 and it has been amazing. It has stopped my periods and so longer have associated pain. I know this isn't true for everyone, but I would say it's definitely worth giving it a go. Xxx

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