Women With Endometriosis

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phoenixoncemore
phoenixoncemore Posts: 196 Member
in Social Groups
Hi everyone,

I just joined and wanted to say hello. I'm a newbie in more than one sense as, although I've been suffering and complaining for over a decade I just got my first "tentative" diagnosis of endometriosis last month. Specialist appointment in a couple of months, after which, I would guess at maybe a lap to properly diagnose? Urgghh, it all takes so long. :explode:

Anyhow, I think this is a great idea for a group. I think there are definately specific challenges to weight loss for those afflicted and it will be great to speak to all of you.

Friend me if you want :flowerforyou:

Replies

  • kristelpoole
    kristelpoole Posts: 440 Member
    Hi there! I hope that everything goes well for you. There are definitely challenges to weight loss that NO ONE else understands, so if you need anything at all, let me know!

    (I've been diagnosed unofficially since 2000 and officially since 2005. I've had surgeries and been on a zillion different drugs and BCs. Even "energy therapy" and pelvic PT.)
  • Skinny625
    Skinny625 Posts: 79 Member
    I can totally relate. I was diagnosised with stage 4,endometrosis several years ago. I had several lap done. The worse part of it all is that I didn't meet my husband until later in life. Both of us really wanted to have children naturally but it just wasn't in the cards for us. Everytime I had a clean out done a large pelvic mass would keep reappearing. It was god way of saying I have other plans for you. Endometrosis is a very difficult disease for a woman. I recently had a total hysterectomy done and I feel like like a new person. I never realized how much it took over my life. If you ever need to talk send me a message.
  • phoenixoncemore
    phoenixoncemore Posts: 196 Member
    Thanks guys,

    Nobody ever believes me that depending on where my hormones are at, I can put on up to 7lbs! I've gotten wise to my body doing this now and just don't weigh in when they are going mental. (Although at the moment I'm having to for my Pain and Symptom Diary for the consultant - not good times for my morale)

    @Skinny625: I'm so sorry to hear about your problems with it. My mum had a hysterectomy last year too, and since then she has been pain-free and loving it, but obviously she is in a very different place. I hate that docs always base the treatment choices around my answer to the "Kids" question. Thing is, I'm only 27 and to be brutally honest I don't know the answer to that question yet, and that stops them in their tracks. I'm hoping I'll get some better advice from the specialist.

    @Kristelpoole: It's good to find someone who understands, or doesn't think I'm making excuses or exaggerating! It sounds like you have been through a lot with this, so it's great to speak to you. 5 years from unofficial to official, huh? Yikes, the decade I spent trying to convince people I wasn't exaggerating / neorotic / hypochondriac / too young / addicted to codeine really may be only the start then.
  • Angelbinick21
    Angelbinick21 Posts: 39 Member
    I, too, was recently diagnosed with Stage 3 endo. It's a relief to FINALLY have a diagnosis, but the cure has been worse than the disease lately. I joined the group just looking for people who 'get it' :)
  • phoenixoncemore
    phoenixoncemore Posts: 196 Member
    I, too, was recently diagnosed with Stage 3 endo. It's a relief to FINALLY have a diagnosis, but the cure has been worse than the disease lately. I joined the group just looking for people who 'get it' :)

    Hi there, I know exactly what you mean about the relief or getting a reason. I'm sorry to hear you've been suffering, I hope the docs can sort out a good solution for you soon.

    Feel free to add me if you want to chat anytime :flowerforyou:

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