Scared :(

Hello, I am new to this group. 

I was told on Friday that I might have endo, I waiting for my doctor to refer me to gyno for more tests. 

I'm literally so scared and worried, I'm only 21 years old and not sure what to expect. I was told I had pelvic inflammatory disease which I don't know anything about. 

I feel so isolated and alone and hoping this group is the pick me up I need to get everything off my chest :( 

Xox 

16 Replies

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  • Hi Becca hope you are ok today

    Really sorry you have endo but don't be scared you are not alone with this sweetie you have all our support and advice on this site.

    I am 44 and have had endo problems since the age of 30. I was finally diagnosed in December last year after a laparoscopy. I had endo on my womb and bowel. I had it burnt off my womb but the surgeon could not get to my bowel to remove it.

    I have been put on a temporary menopause with injections and HRT but these are not working for me and I think I will have to have another op.

    I am going next week to a specialist endometriosis centre my advice would be for you to look for one in your area, as they know about our condition and would give you better care.

    I was terrified before my lap last year but all the lovely ladies on this site put my mind at rest. You will be fine honey and if you have any questions I will do my best to help you.

    Try not to worry because that will make your pain worse

    Just know we are all here for you and we will go on the journey with you.

    let me know how you get on good luck I am here if needed

    Love Janet xxx

  • Thank you for telling me your story! 

    I can't help but not worry and am not sure how to not worry if that makes sense.

    But thank you so much! This site is already making me feel a bit better. 

    Xx

  • hello! ive been told i may have it too. im 24 and finally decided to do something about it! to be honest im at the stage now where i want to know whether i have it, so i can stop getting dismissed as having just bad periods, although at the start i was scared. try not to worry. youre not alone and the best thing is taking care of your health so you can start to get on the right treatment :) xx 

  • Yeah same, I literally had had enough and took my self to the Drs, I have been waiting 10 months for some sort of answers and I'm still none the wiser other than I might have endo. 

    I have really painful sex and a lot of pain after and that's one of my biggest issues. I am single at the moment and worry how I'll open up to a new person and get them to be patient with me, if that makes sense! 

    Thank you for your reply xx

  • its best to get it checked and you know when your body isnt right. im currently sat here with pinching pains around my hips and pelvis and i just know that this is not right just like you know it isnt. what other symptoms do you get? yes i know excactly what you mean. you need someone to be patient and understanding. sex is quite uncomfortable for me. i have a boyfriend and im lucky he is really good with me but at the minute i really dont feel like i want to do it xx

  • I have a lot of pain around my pelvis and lower abdo, heavy, very painful periods with clots in and then some abnormal bleeding. I had pelvic inflammatory disease as well, which I don't really know much about. 

    That's very good that you have an understanding supporting boyfriend! 

    I think maybe because I think sex can be important in a relationship is why I'm worried about meeting someone new 

    Xx

  • yes im not too sure about what that is. i will have a read up on it. i hope you get it sorted soon :) yes definitely. but when the right person comes along they will be understanding. try not to worry and it will get sorted. message me if you need anything xx

  • Thank you so much for your support! Xxxx

  • Hello honey, 

    I understand exactly where you are coming from. I'm 22 and was 21 when I was diagnoseded after years of pain. I was scared at first but now I'm okay... still have down days of the infertility side but in big scheme of things it may not effect my infertility to much (although seems to be at the moment) 

    What is it exactly your scared about? 

    It's nice to have a diagnosis so you can get the right help and deal with things properly.  I had my lap last year and it was fine, I have a real phobia of being put to sleep so that didn't help but the nurses are so understanding. 

    One word of advice would be don't give up... if you want answers you have to really push doctors!! 

    Keep your chin up, you'll be okay xxx

  • I didn't realise so many people have the same, I literally feel like I'm the only person going through it and I'm not. 

    I'm scared of the infertility side of things, one of my biggest priorities is to have my own child and I worry I won't be able to if that makes sense.  I am also single at the moment and am worried about how to open up to a new man as one of my main problems is painful sex and pain after. I guess it's the emotional side of things in worried about more than anything. 

    Thank you so much for your reply. Xxx

  • My biggest fear/worry is the fertility side :( 

    I have been with my partner for 3 years and he is so supportive, we have been trying for 2 years and each time I come on my period it's heartbreaking. I won't sugar coat it but I'm here for support.... it's not nice but there are so many ways that's you can have children that don't worry to much about never having then.  The NHS is so good now and there are so many new ideas and great ways to make people produce. you could easily fall naturally then normally it reverses endo so don't worry to much... 

    You'll find someone and when you do you don't need to tell them straight away, wait until you see how you are then tell them that you have a medication problem which is being controlled.... if you ever come to the subject of a family then explain it could be difficult. If you have there right man he will support you no matter what.  

    It's so common when you look at it, I now know so many people who suffer wither endo xxxx

  • You're right. I think support is what we all need and this site is very good for it, I didn't realise! 

    I didn't realise endo was so common either, I guess it's just getting over the first hurdle of realising you've got it, if that makes sense. Xxxx

  • Definitely, when do you find out? It's a very daunting diagnosis and as human your in denial about it at first because you don't think you can have an illness like this. 

    You'll be okay. Support is this best medicine, keeps you sane xxx

  • I don't know, I don't really know anything at the minute.

    But thank you so much xxx

  • Hello,

    I am 30 years old and I was diagnosed in 2011. After my first child I suffered very irregular periods, heavy, painful, clots! Just torture. My now husband and I tried many many times to get pregnant but before we met I was told my chances on getting preg again after so many abnormal paps and cancer cells were very slim. But I got preg in 2008 and had him full term. After having him I got PID (pelvic inflammatory disease) which felt like a truck was crushing me over an over in my pelvic area and stomach. I had so many problems after having him but getting preg if can eases endo. I was going for final testing before my hysterectomy and learned I was 11 wks preg! I was told after my son I couldn't conceive and if I did I'd miscarry. Which I didn't. I have a beautiful nearly 10 month old daughter. This pregnancy was agony. I had to stop working, put on bed rest, and had NSTS every week for 38 weeks. Now I'm back wit full force endo along with IBS. Taking vitamins, eating right and all will help you conceive. Folic acid. Both you and your parter take vitamins while trying when you are ready. My last two kids are truly a blessing. I pray you get blessed as well

  • Hi Becca94

    Im am currently waiting for a lap but i do have a endometrioma and have had previous ovarian cysts. 

    Try not to worry yourself too much until you know for sure otherwise you will just be driving yourself mad. I had been sending myself insane convincing myself of all sorts. Have a read through some of the other posts and you will see that your not alone and there are thousands of women having the same problems and don't be afraid to ask questions as silly as they may seem one of the ladies on here will be able to answer or give you advise.

    When you find someone and they don't understand what you are going through then they ain't the right person.

    I hope you get some answers soon. I am sorry if this seems blunt but i didnt know how else to put it to be honest

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