hello! new member!: hello all : ) Just... - Endometriosis UK

Endometriosis UK

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hello! new member!

emmalondon profile image
3 Replies

hello all : )

Just joined! am a very young happy 45 year

old living my with partner and been suffering from endo since a teenager - although like many its taken me years to be taken seriously and recieve any form of effective treatment. been put on several different types of the pill to ‘ease the symptoms’ but to no avail. I have refused any more hormonal treatment due to 2 breast cancer scares. Have had a few laparoscopies where ‘mild

endo’ and scarring was found on left side - but no removal! I am seriously ill each month and am bed bound for the first three days due to fainting, clotting, ‘flooding’ and chronic bloating, lower back ache, sore legs, etc and have to take time off work. I also live on a two monthly basis where i basically plan my life around my period - i can’t plan more than two months in advance due to predicting next period (which is usually a 21/25 day cycle). I take tranexamic acid to reduce heavy bleeding - which i can’t survive without! My symptoms have changed over the past year especially with ovulation pain and sickness. Ended up in A&E recently with extreme pain in left side which turned out to be a massive ruptured ovarian cyst. Was outraged about having to fight to be taken seriously and push to be seen by gyne. If you have endo i think its very easy to be dismissed by medical staff and your symptoms are just overlooked and bracketed as just endo. I have a 3month wait for yet another scan and am pushing to have another laparoscopy where i want surgery to remove affected areas - i don’t understand why i have not been offerered this before. I do not want a hysterectomy as i am clinging on to the possibility of having a child - long shot i know!! Living with endo is really debilitating and my partner tries his best to help and understand, although i really am at my wits end living in fear of the next period and the pain. (the only thing that works in terms of pain relief is ibroprofen together with paracetamol). I am making a massive effort to look after my health and am switching to an anti-inflamatory vegan diet. Although i fear my symtoms are getting worse and am deeply concerned about my increasing ovulation pain and bloating.

So that’s me! Just wanted to say hello and offer any support to those who need it! I’d really like to hear any advice from anyone with similar experiences. Im based in north london and am also keen to join a support group / meet up.

take care!

emma : )

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emmalondon
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3 Replies
Starry profile image
Starry

Hello, I'm 45 and doing the vegan gluten free thing ( though I am eating eggs but that's another story) . I've had Endo since birth the excision surgeon reckons and in July had an extensive surgery to remove a large Endo nodule on bowel, bladder , ovary, ligaments and adhesions.

Are you being treated at a BSGE Endo centre? With refractory Endo you should be according to the NHS spec so it's worth pushing to be referred if you aren't.

google.co.uk/url?sa=t&sourc...

bsge.org.uk/centre/

Afraid I live up in Norfolk. X

MMary-Moderator profile image
MMary-Moderator

Hi Emma,

I am sorry to hear you are suffering.

We run 3 support groups in London, I am not sure where you are based but there is a support group that runs at The Royal Free in Hampstead. Their next meeting is on the 11th December: endometriosis-uk.org/centra...

Best Wishes,

M Mary, Endometriosis UK

emmalondon profile image
emmalondon in reply to MMary-Moderator

hello! thanks so much for your reply!! im looking forward to attending the next meeting!

emma : )

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