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Endometriosis UK
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New diagnosis

Hello, I just spoke to a lovely volunteer from the helpline who suggested I try this forum. I saw a gynaecologist today who said more than likely I have endometriosis. I have been prescribed provera, tranxamic acid and have been referred for a pelvic MRI and keyhole surgery. I have suffered with heavy bleeding and pain for over 10 years. The gynaecologist said my fertility will be affected. I feel so tearful as I write this and frustrated with myself that I have not pursued this earlier. I have never known anything other than heavy, painful periods so assumed it was normal. So sorry to blurt this all out, I just feel emotional and wanted to get this off my chest.

Thank you for reading,

Charlotte x

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Hello. I'm sorry you are feeling upset. Try not to be too hard on yourself for past decisions as you cannot change them and there is not much awareness for our condition. It's not like any of us were encouraged to talk about this at school, or any other learning platform. (This advice is much easier to give than to follow, especially when feeling low.) You are not alone, even though it feels like it a lot of the time.

Love and hugs xx

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Thank you for such kind words and your reassurance that I am not alone. I will be ok i'm sure, I guess it just came as a bit of a shock today xx

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Dont beat yourself up about it, it took me 20 years to get a diagnosis. We are all in the same boat and you are definately not alone. I wish id joined this forum years ago as it really helps to talk about it x

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Thank you x

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Hi misscharlie, please don’t blame yourself in any way. Sadly with endo (if it definitely is that) delayed diagnosis is normal and doctors often fob you off with various other things before you finally get there. It took 20+ years for me to finally get mine and by then I was already 35. I was also just used to the symptoms and it doesn’t help when people tell you that’s it’s just part of being a woman. We also tend not to talk about it with others (when were younger especially, now I try to spread awareness here there and everywhere!) so we don’t know if what we’re experiencing is normal or not.

I hope your investigations go well and you get some answers. The surgery itself can improve fertility (especially if it’s excision rather than ablation) so try not to panic. Lots of luck x

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Thank you Georgina. I do hope so re: the fertility. I am trying to be positive though realistic also. I am 36 and the consultant actually said to me "why have you left it so late to think about having children?" - at which point my morale dropped though I am feeling more optimistic this morning! I think it's the abruptness that seemed quite austere and harsh to me yesterday x

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Oh those lovely doctors with many skills but tact and sensitivity not being one of them huh :-/ I don’t understand why they ask that question, there are so many, often complicated reasons why women don’t have babies in their 20’s! You still have time, I think they say the six months after surgery are your most fertile but that’s not always a good time for couples personally and isn’t set in stone of course.

Glad you’re feeling a bit more positive this morning, I would say do as much research as you can, endometriosis UK is a great source of info & support. Lots of luck x

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Thank you again x

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Oh my god I cannot believe your consultant said that to you. Why is it a woman's fault if she's not had children by 36!! I wanted to settle down years ago but simply have not been lucky in love (every man I've ever dated cared way more about his career and freedom that commitment and children) then last year, when finally diagnosed with endometriosis at 37, my surgeon told me to go and get pregnant when I didn't even have a partner. You can imagine the emotional turmoil that unleashed. I had to have another laparoscopy last week and in my post op yesterday he'd basically assigned me to his 'no hope' box and said I might as well get a hysterectomy. I am livid.

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Thanks for your reply. Where is the humanity and compassion with some of these clinicians! It seems to be non-existent with some, although I would hope others are more tactful and understanding. I am sorry you have experienced such a lack of empathy x

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I'm sorry that you have also suffered a lack of empathy. I think the problem is that a lot of them don't live in the real world and are completely out of touch. There's too much focus on what us women are doing wrong and women aren't being diagnosed for years for endometriosis, which massively puts the pressure on when you do get the diagnosis later on.

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They shouldnt have said that to you! 1, its not going to help, 2, because its your choice and nobody elses. It all depends of personal situations, and some people arent even sure they want kids untill they are mid to late 30’s. I had my first at 34 and am hoping to blessed with a second at now 39. Though this time its harder for me, and thats nothing to do with my age. Woman can have kids well into their 40’s and these drs should stop pushing their opinions onto people.

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Welcome and this site is so supportive, I don’t know what I would have done without it x

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Thank you, it’s a huge comfort to have found you lovely people x

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