Not sure if I should get tested for Endo, or just painful periods?

Posted , 4 users are following.

I've had painful periods as long as I can remember, my friends say this isn't normal, but looking at the Endo symptoms I realise it could be a lot worse! I'm fairly regular, every 30 days ish, and usually will only have pain on day 1 (sometimes also day 2). If I leave the pain, it will escalate to the point where I have diarrhoea, will possibly vomit and nearly pass out. It will usually pass within about 2 hours. I've found that ibroprofen helps enormously but as we are trying to conceive I've been advised against taking it. Paracetamol helps a bit, but not a lot.

I am usually on for about 4 days, and pass a lot of clots. I wouldn't say it was crazy heavy, I use a mooncup and empty it 3 times a day. I also haven't had any pain during sex, or back ache, but I do sometimes feel ovulation.

My first doctor told me I was just unlucky and not to worry about getting tested. But I worry as I'm 35, we've been trying to conceive for 9 months and I don't want to have an underlying issue that might be causing in a delay conceiving. I've had blood tests done at the time of my period and they all came back normal.

I also realise 9 months is nothing in the grand scheme of ttc, I just want to do all I can before I get any older!

To those with Endo, does this sound familiar? Or would it be a lot worse?

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5 Replies

  • Posted

    I should also say that if I catch the pain with the ibroprofen early enough, I don't have any of the symptoms listed above anywhere near as bad. I'll probably still need the morning off work, and I just want to sleep.
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    • Posted

      The only thing I'd add to Lisa's great reply is this caveat which definitely applies stateside, may apply elsewhere: IVF doctors sell a stupid-expensive product and are not the ones with whom you should consult about endo. Go to a gyn who specializes in endo, or just a gun if no endo folks close to you. That gyn should be focused on you, while fertility docs focus on getting your money.

      That said, some pregnancies cause an endo-remission. (Don't believe any doc who says that full-time pregnancies stop all or even most cases of endo.)

      Holding you in the healing light for a healthy pregnancy.

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  • Posted

    I would talk to your gyno, if you haven't already.  I had painful periods since I was 14.  Every doctor told me it was normal, including my gynos.  They even gave me Naproxen Sodium, because Midol and Ibuprofen weren't enough.  Endometriosis comes in various stages of severity.  I suffered for 20 years, until I had a surgery to remove a cyst from my left ovary, but they found Endometriosis ALL over my insides instead (including my liver and diaphragm).  Scar tissue had wound my left ovary next to and stuck behind my uterus, my bowel was stuck to my uterus, my uterus was stuck to my bladder.  Painful periods are NOT normal.

    Bowel issues, nausea, and passing out are also symptoms a lot of my EndoSisters complain of.  Lengthy or heavy periods are also indicators.  As well as the heavy cramps and infertility.  Many women are able to conceive after their excision surgeries.

    The only way to truly diagnose Endometriosis is to have a surgery where they look inside your abdomen and confirm it is present.

    But if you're not willing or able to have the exploratory surgery, going on birth control pills may help ease those symptoms...although I know you're trying to conceive.  I'd be leary of any physician who wants to put you on anything stronger without an actual Endo diagnosis.  Some treatments I'm talking about are Lupron Depo (a shot that puts you into temporary menopause) or similar drugs.  ALTHOUGH, some doctors will use Lupron Depo for women who are trying to conceive.  Shocks the pool, so to speak, supposedly shrinking the Endo implants and women may be able to conceive.  But Lupron is a really difficult drug to process.  And many women have long-term and horrible side effects that go beyond the normal menopause.

    Your doctor can take a detailed verbal history fo your periods and pain (you may want to keep a pain & cycle journal for just this reason), others may perform a pelvic exam (if painful, may be an indicator of Endo), some may perform a transvaginal ultrasound to look at your ovaries for cysts (Endo can cause blood-filled cysts), others may order an MRI.  If they suspect Endo after all of that, then you may want to undergo the surgery.  But if you do, make sure your surgeon knows how to properly excise (remove) the Endometriosis implants and scar tissue.

    Advocate for yourself.  Do your research. Ask questions of your doctors.  Challenge them when they say it's normal.  And always feel free to get a second opinion smile

    Yours,

    Lisa

    Bloomin' Uterus

    I'm here if you ever need to talk.

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  • Posted

    Hey.

    Sounds like endo is a really strong possiblility.

    I would also recommend seeing a gyno asap.

    Before i had my kids, i had very similar symptoms to you and kept being told i had IBS. During pregnancy my symptoms would completely disappear but after each (2) pregnancy they got much worse.

    It wasnt until my youngest was 18 months old that I finally got a diagnosis. I was in so much pain all the time by that stage and so sick that I couldnt enjoy the first 18 months of her life. I am so grateful that I can now enjoy her and do things with her but sad that i wont get that time back.

    Whether it is potentially causing fertitlity issues or not, I worry about you having to deal with that pain or possibly worse with a baby or young child.

    good luck i hope you find answers and get your baby soon. x

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