Hello All

Im 25 years old and I am

new to this page :)

I suffer from very bad painful periods which are always heavy. I've always had heavy periods and did go to the doctors but they used to give me advice on taking medicine to lower the blood which had side effects such as blood clots and so I didn't take the medication plus the doctors didn't see it as anything they thought it's normal periods and stuff.

I have taken so many days off of work due to feeling unwell, I know the difference between period pains and agony pains where you can not get out the bed. Last year in October I was rushed to hospital and the doctors said it was my periods and sent me home as they could not find anything. However this March I was again rushed into hospital due to vomiting, being in agony and all sorts. The hospital kept me in for a week and I was checked by many other doctors and I was officially diagnosed with endometriosis.

I actually knew all along something was wrong coz it used to effect my day to day life. I didn't feel normal and when I used to get ill my family thought I just didn't want to go work and used to say your always taking days off. But now it's all clear and makes real sense.

I was happy that I have been diagnosed and I know what it is but I'm still tryna get my head around it all. It's new to me and kinda daunting. I don't actually know what band of endometriosis I have but I am taking the pill to shrink it. The doctors have said it's trial and era with the pills.

I have been told I have this forever is this true?

Thank you all for taking the time in reading my post x

8 Replies

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  • Hello there, glad you finally got a diagnosis!

    I'm sorry to say that it is forever, there is no 'cure' and unfortunately, the pill won't shrink the endometriosis, it will just mask the symptoms, it won't have an affect on the growth/spread, if that happens.

    If you're happy to carry on with the trials and era of medication, then I hope it works for you, if not, then I would strongly suggest that you ask for excision surgery, as this is said to be the 'gold standard treatment' for endo.

    I hope you find what is best suited to you, and don't go through with things you arent comfortable with!

    Best of luck xx

  • Hello Megan,

    Thank you so much for responding. Oh wow I didn't know the pill does not shrink the cist and the only option is surgery 🙈. Sounds so scary to be honest. I've seen pictures of stomachs after surgery and it doesn't look good.

    I'm only 25 and the cist is about 3cm on my ovary. The doctors did say that with surgery I won't be able to have children is that true?

    It is really nice to see communities supporting one another it's dawning doing it alone xxx

  • That is absolutely not true. Treatment for endo is for two reasons - to relieve pain and for infertility. It depends on what is involved but the evidence is that surgery improves fertility. This is covered at section 4.3 of the ESHRE guideline below. The pill might shrink an endometrioma but it will still be there and endometriomas usually suggest endo elsewhere and anything beyond stage 2 must be dealt with in a specialist BSGE accredited endo centre.

    eshre.eu/Guidelines-and-Leg...

  • Hello Lindle,

    Thank you so much for responding. Yes I've been hearing a mixture of information but that link you sent is very useful xx

  • Hi there,

    Sorry it's taken you so long to be listened to unfortunately it's a common occurrence with endo.

    As people have previously stated the medication will only mask things I would try and push for surgery if I was you. It's certainly not true that you won't be able to have children I am also 25 had my first surgery two years ago, due to my endo severity if I want to have children I have to consult my consultant but it's certainly not true about being unable to have children.

    This forum is really good people on here are so lovely and know exactly how you are feeling.

    Hope you get the answers your looking for.

    Joely x

  • Hi Joely,

    Thank you so much for responding and it is really reassuring that I'm not alone.

    I hope things are going well for you and yes I will look into what to do next xx

  • It's a hard time getting your head around it all and making people close to you realise that you do in fact have something quite severe going on, feel free to message me anytime with questions I'll do my best to help out xx

  • That's is so true since I've found out I don't really know what to do. My family and friends stay quiet coz they don't know what to say and don't think it's that severe.

    I will definitely and thank you so much xx

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