After 10 years I've got answers!

Hi everyone. I've just found this site and it's great. I want to share my experience with others as it's taken so long for answers.

Since the age of 11 when I started my period I've suffered from extreme pain through my period cycle. I've suffered from sickness, dizzyness, extreme pain which stopped me from walking and more. Since it started I've been going to the doctors telling them my symptoms and they put me on the pill and mild pain killers which never helped!! The pain got so extreme I never took a break from my pill because I was scared by the pain.

It took me till early this year after changing doctors at the age of 21 for me to be sent to hospital for scans. They found I had a giant cyst on my ovaries which could be the problem. I had my surgery yesterday after waiting since march and the cyst had gone but they found large pieces of endometriosis all over the place (the sizes of it I had might of been the cyst they saw on the ultrasound). I'm hoping this will help me in the future now I have answers.

Sorry for the long post but I wanted to write about my experience so others can get help sooner than I did! I took 10 years and different doctors for me to get help. The annoying thing for me was my other family members also suffered from this which i told doctors but I believe due to to my age they didn't want to do anything so just left me to suffer! People need to get help asap as this has affected my life from missing school/college and depression.

Thanks if anyone reads this and hope they can get help too! :)


9 Replies

  • Hi

    Your post sounds so much like my story, although I haven't been officially diagnosed yet.

    I had an ultrasound and they found a 4cm chocolate cyst on my ovary, so they have referred me to the Gyno next week.

    I am 26 and so fed up with it now, after 14 years of pain, I just need it sorting.

    I went back to the Drs yesterday with pain again and he put it down to constipation! I asked if it was related to Endo and he completely shot me down with a NO.

    I just feel like I am being fobbed off.

    My mum was diagnosed at 25 with severe Endo and was told she couldn't have any more children (luckily she had me and my sister when she was younger), I havent had children yet and I am petrified!!

    Lisa xx

  • I understand, it's horrible when doctors don't listen to you! My doctors never mentioned endometriosis to me or what it could be. Wasnt till i changed doctors that she really listened to me and sent me straight to my gyno within a month! It's wasn't till my surgery yesterday that doctors confirmed it was that. There was so much of it. The scary thing is my surgent said it could return. I won't know if it's worked until I recover but I hope it does.

    Also my mum was diagnosed round the same age as yours and she had problems having kids. She had endometriosis as well and suffered like me so it worries me too.

    Don't listen to your doctor. Sounds like he's trying to fob you off. Hopefully your gyno can give you all the info you need and get you in for surgery asap. I was surprised my cyst was gone yesterday considering for the last 5 months I can't remember the last time I wasn't in pain everyday!! My cyst was 5cm so it definitely wasn't the cyst causing all my pain :)

    Hope you get all the help you need! :) it's nice when others understand. I know for years people didn't believe my pain which frustrated me!

    Rachel xx

  • How long did you have to wait from seeing your Gyno to having your Op? I am training to be a teacher from September and need this sorting ASAP, so Ops etc don't coincide with any Observation exams etc.

    I know, its good talking to my mum, she says she has known for years that I might have it as I am showing all the same symptoms as her, but its good to have other views to from people who have it too.

    I have been signed off work for this week due to the pain ( I work in a warehouse nights, as well as volunteering in schools in the day).

    Lisa xx

  • It took 4 months from me being put on the waiting list to getting the surgery sadly!! Was awful having to wait so long because during the waiting time I went to America and the pain totally ruined it for me :(

    I agree with you. It's nice to speak to others who know what your going through because they understand and are helpful :)

    Fingers crossed they can get it done soon for you before September then. Nothing worse than working when your in pain.


  • WOW 4 months. Its ridiculous how long waiting times have got.

    Hopefully, it doesn't leave much time though :(

    Awhh thats such a shame about America, did they give you any painkillers to help?

    I am on Neproxan andbuscopan at the moment, as well as a laxative. In the past I've also been on Northisterone and Mefanamnic acid. None seem to help.

    Lisa xx

  • I know, it felt like forever waiting!

    Yea they gave neproxen and tramadol but both of them make me space out completely which was a little scary. Ibuprofen seems to be the only thing I can take but I've had so much in my life I don't think it works anymore!!

    Hopefully the waiting list will be shorter for you :) I'm off work for 2 weeks recovery so it's not to long but if you got a new job it needs to be soon!!

  • Hi

    They wanted to prescribe me tramadol but I refused as it makes me sick! It's awful if you can't get in with it. I'm on naproxen at the moment, which tbh is not really working.

    I'm so worried about how long it's taking. I start uni in 8 weeks. This is constantly on my mind, I think as soon as I find out what stage I'm at I will cope better, the not knowing is killing me.

    I hope you get well soon :)

    Lisa xxx

  • Hi Lisa - your GP sounds very uninformed when it comes to endo. Have a look at my posts in case they help. If you don't get the treatment you need ask for a referral to a specialist centre. x

  • Hi - I too have the same story. I started my periods at the age of 13. I changed the multiple doctor and they all said ' it is normal '. Atleast ur doctor put u on pills but my doctor didn't even prescribed me painkillers. Seven years I suffered with horrible pain. I started taking painkillers at age of 19. But didn't get relief. I got depressed my career suffered, my social life sufferd but no one listened. Everytime when I had periods I just prayed to god that this time it shouldn't be painful but neither heavenly god nor earth's god listened. Now I m 32 yrs old. I underwent 2 surgery I m stage 4. Don't know how many surgery to come.

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