Endometriosis UK
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One good week a month.

I'm sure this is something many of you suffer with, and I'm sure lots of ladies aren't even lucky enough to have that much relief but I've got to the point where my 'time of the month' is now taking up a large majority of it!

I suffer with awful pain, fatigue, emotional highs and lows, bladder and bowel problems for about a week before I come on and then all the above symptoms are joined with really heavy bleeding which often makes me physically sick and then when the bleeding stops, after about 7 days, I have a week worth of 'period hangover' feeling totally wiped out, feverish, aching and depressed.

I then have what feels like about a week when I'm feeling more positive, not feeling sick or as tired and I have a break from the feeling of my ovaries being ripped from my body.

I'm waiting for a referral to go back to the gynaecologist. I did have a lap two years ago where bowel and uterus lesions were removed.

I guess I'm just posting this to see if anyone else who suffers with this has a way of fighting it - mentally and physically.

Katie xx

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Hi there,

Just wanted to say I really feel for you. Can totally sympathise. I am lucky if I get 7 days in a month were I feel relatively "ok". Never a day though where I don't feel something. It is so frustrating isn't it and hard to cope with not only physically but mentally. How it effects every aspect of our lives.

I wish I had some answers for you.

I did used to go see a counsellor/hypnotherapist to try help me handle things, which was useful having someone neutral to talk to. But I haven't managed to get to see her since May as just not been able to get out to her. I also keep a kind of diary, where on the really bad days I write down how I am feeling. I suppose to try and get it out of my head and as if I was talking to someone else. Neither of these are miracle cures, but help a little, although only temporary.

I hope you have friends and family who are understanding and can be there for you as that is priceless.

Good luck at your appointment with the Gynae. Hope they listen to you and can offer some help.

Sorry I cannot be of much help.

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Thank you for the message Squidgy. It's good to know I'm not alone. Someone else mentioned seeing a therapist- I have ME and was seeing a cognitive behavioural therapist a few years back which was great so I might speak to the doc about that.

It's just a constant cycle of battling against your own body 😞

There should definitely be more emotional support available for women in our situation.

I have,wonderful friends and family and a really patient and understanding husband so I am very lucky-'but it is difficult for anyone who hasn't experienced it to feel what it s like day to day

Hope you're well atm x

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If your lesions were diagnosed as endo then please get referred to an accredited endo specialist and not a general gynae. An endo specialist should be able to remove the endo properly. It sounds as though this was not achieved in your first lap. Make sure the specialist you see does not use laser to remove. Laser is very easy to use but the endo often grows back. The bowel and bladder problems you mention definitely call for referral to an endo centre where there will be colorectal and urological surgeons on the team should they be required.

It is absolutely possible to get proper surgery to get you out of this awful situation. The trick is to find the right surgeon. PM me if you want the name of a good one. You have the right to choose who you see on the nhs. Or find an endo specialist on this list. bsge.org.uk/ec-BSGE-accredi...

Get more info from Lindle's great posts healthunlocked.com/lindle

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Hi Katie. I know all too well what you are experiencing. That is exactly how mine goes. However, since May I started the endo diet and I am amazed that my periods have changed drastically for the better.

It is very hard to change the diet but I did not have any other option as operations and pills did not do anything for me and was getting extremely depressed and suicidal so the only option I was left with was to TRY the diet - it was a no lose situation and it worked. Thank god!

I cut out completely red meat, wheat, caffeine, alcohol, processed food, chocolate. I am also not eating bovine dairy. Goats and sheep it's ok. Also no soy. It is very doable and now I've seen the results I could not go back. It's definitely worth not having all of this for a better physical and mental health. There are loads of books on endo nutrition with receptors on the Internet...that's where I started.

Hope you get better! x

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Hi I so so so feel your pain 😭 I'm going through complete hell with endo pain due to prior, during and after my period. I'm on the period from hell at the moment I have been extremely sick and passed out twice due to pain. My back feels like I'm being continually kicked by a horse and my ovaries and uterus feel as if they are going through a pasta machine. What the hell is happening? Why is everything inside so so bad at this time it's madness . 😭

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