My Endo Story

I know posts really should be short, brief and to the point but I haven't really been in the position to express what I have been through and this forum seems the most appropriate way to off load.

I started my period initially when I was 11/12 and then they ceased. I think this may have been (under)weight related. I then started again when I was 14. I was showering during one period and sobbed for an hour after feeling/seeing my first tissue looking clot pass. I had just moved in with my step-mum/dad so I didn't really know who to speak to, so I didn't.

One day when driving me home from school my step-mum noticed I had flooded and left a mark on the car seat. She spoke to me about my periods and I told her about the pain I was feeling, how heavy it was and how frequent they were. We went to the doctors who decided to focus more on the pain and after a feel of my tummy sent me home with peppermint tablets and Tramadol and a diagnosis of IBS.

We returned a few months later and I was given the same tablets for the pain and mefanamic acid for the bleeding. The doctor was not interested in linking the periods to the pain. I was 'too young' to have problems. So they sent me for a Gastroscopy and ultra-sound to evaluate the severity of my alleged IBS and other potential stomach problems. And suprise - they found no polyps, no stomach ulcers - no signs of muscle weakness or IBS. Rather than finally make a link - they sent me home and told me the pain was all in my head due to a rough child-hood. This put a strain on my relationship with my dad/step-mum as the doctors were basically advising that I was lying.

For one reason or another I no longer lived with them at age 16 - I went to the Brook and started the Mycrogynon pill. The bleeding was every day - and I eventually had Anemia. So they switched me to the depo, then progeston only pill, then the patch, then the implant, then the implant with a combined pill & eventually I am now on just the combined pill - Milinette and have been for just under 2 years.

The Millinete can be taken back to back so I can avoid periods although I have had some break through bleeding. But then my discharge began to change often, and August of this year I started to have spotting and slight flooding, post-coital bleeds, and pelvic pain so I referred to the Brook. They suggested from review of my history that I refer to the GP and look in to more depth why I have had such problems. The GP wouldn't do a smear to look in to my discharge changes because of my age. And the nurse did a speculum evaluation and informed nothing was wrong. The doctor therefore refused to assist further and told me it was 'all in my head'.

I pushed again more recently and was referred for an ultrasound and internal scan. The nurse immediately advise I had quite a lot of fibre tissue - she suspected Adenomyosis. Again my doctor informed I was reading too much in to it and I am too young to have such problems. I pushed on and was then referred to a Gyno in December.

My Gyno has been a god-send - she reviewed the same scan - confirmed Adenomyosis in my myometrium and Endometriosis. She also said from a review of my cervix I had a petrusion which would be causing the post-coital bleeds. If this doesn't go on its own they will lazer it off.

So now I am trying to learn more about Endometriosis. The Gyno suggested breaking more often to reduce break through bleeds but my break this month has been horrendous - I have been using tamps with pads and flooding/leaking through which has also triggered anemia, and I can't afford to be buying new clothes every day.

Ultimately - although I have been diagnosed with Endo from review of other peoples stories on here I don't feel I am suffering too much at the moment in comparison. I do get stabbing pains in my cervix, back/pelvic pain - but not everyday, and the petrusion can be removed.

I am going to try adjusting my diet to include anti-inflamitory foods, and see what other options are available to either help me break more regularly or handle break through bleeds. I know that my Endo will likely get worse over time but I am trying to stay positive in that right now I am coping and getting through.

5 Replies

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  • Hey hunni!

    Welcome to the site ☺

    I'm so sorry that you had such a rough time getting a diagnosis!🙁 my heart broke for you as I was reading your story!

    I just wanted to say, I've noticed that you are following me, if there's anything you wanna ask or talk about, I'll do my best to help you! Xxx

  • Hey. Thanks for reading and replying. I've been reading through your posts too trying to see what other issues I may or may not face in the future. Sorry that you're suffering also, so glad I found this support network.

    Reading everyone's stories, replies and advice has been a confidence boost already.

    Il be sure to message you should I need anything - thanks again xx

  • Sounds so similar to my experience and symptoms. Adenomyosis diagnosed at 35 (I went private as I was so desperate to know the cause of my symptoms, after problems from my teen years).

    Was given a mirena coil and it made my periods much lighter and manageable.

    I'm awaiting a third mirena which should take me through menopause (I'm 48 now).

    If you want the name of the gynae and nutritionist that helped me, feel free to message me privately.

    Good luck x

  • I'm avoiding the marina at all costs at the moment, having tried so many different things I want to try and just improve what am currently on but it will be my last resort. Will have to get them details from you x

  • Fair enough but it's been life changing for me. I'm lucky enough that it worked for me.

    😊

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