Working endo diagnosis 3yrs in!

Hi, I am a 23yr old.i have suffered horrendous periods since the age of 13 only at 20 did I receive any help or advice from the doctors after suffering a burst ovarian cyst(grapefruit size). Since the. Being pushed from pillar to post,currently receiving hydro therapy,physiotherapist and pain a result of endo I have hyper-mobility,muscle weakness and bladder problems.i am also unable to work,my mobility is severely emotions are all over the place.all of this whilst trying to plan a wedding may 2017!!!! HELP. My experience has been horrid,I'm a regular with the local A&E due to monthly flare ups,I'm on every drug possible and also the prostapinjection so I no longer deal with monthly flare ups due to periods.lifes hard and draining but I still have my life,I constantly remind myself I could be in a worse position.but I wouldn't wish my situation and history on anybody.sorry to sound so morbid but I rarely can freely express this without upsetting my family and or friends.with who and Thomas my fiancé I strongly believe I would have given up a long time ago.surely things will get better,I mean I've got to get married

Love eemc.x

5 Replies

  • you sound like a very strong person and you will get thru all your struggles, it's ok to be emotional about things just try to stay positive Hun. I wish I could offer you some better advice. sending you a big hug xx

  • I am glad i sound that way as i rarely feel like i am anymore.for some reason i have mastered the act of putting on a brave face 24/7 and not showing my true feelings.which ends in a horrendous emotional outburst of tear.

    Thank you.x

  • Hi eemc

    I'm just wondering if you've had any of the endo removed in a previous surgery?

    Unless you get the disease treated no amount of drugs or hormones is going to help you. You need it removed and then you'll find medication or hormones more beneficial for managing pain.

    I know how stressful life is in general with this but I feel for you as I'm getting married in November 2017 and I've not ordered my dress yet because I'm due to have surgery in 2 weeks and I'm hoping it will sort me out and then I'll be able to start working out again and loose some weight.

    What stage were you diagnosed with? Have you had any follow ups since your diagnoses?


  • Hi natasha,

    I have had two surgeries both of which were to remove cysts and fluid/blood from a burst cyst. My doctor is extremely hesitant about doing any endo excision op as my adhesions seem to be massively growing and moving at the moment.they are currently at my bowel so they dont want to risk them moving any higher.

    Ohh congratulations! I am May 2017,the best thing i did was buy my dress it made me so happy and positive.the pictures of it get me through bad days.

    I have follow ups every 6months but also physio every week and GP every 4wks.


  • It sounds like you should really be seeing a specialist. Especially to avoid it moving up from the bowel. I have it inside mine among various other places. Going to a BSGE centre will ensure you get a team specialising in different organs so they can remove as much as possible as safe as possible.

    Congratulations ☺️ I hope your pain hasn't dampened your excitiment too much. The day I tried on dresses I was so swollen I just felt horrible. So I decided I'd have my surgery first so I could feel better about myself.

    I would definitely ask to be referred to a specialist, who will try to remove all the endo as you don't want it just left to spread.


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