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Undiagnosed, Ignored and in pain.

Hi. I need some help please, just wondering if this sounds like endo? I’ve had period issues for as long as I can remember and I’ve been passed off by doctors for the past 9 years. My periods are irregular, from 30-42 days. I have severe pain (where I can’t stand up straight and hobble when I walk) every ovulation in left lower abdomen near hip, and through to left centre lower back, radiating down the left leg, for up to 6 days, pain in rectum, bloating and trapped wind during this time. Period pain can be severe. Periods often begin with spotting and last from 3-10 days sometimes heavy and sometimes normal. Paid during intercourse at ovulation. I have external thrush every month one week after ovulation and rhinitis/nasal coldsores at the same time, every month. After my first child I suffered secondary infertility for two years before losing a baby and then losing 3 more in the following two years (followed by 2 live births) all live births were c-sections. I have ADHD and condition that can cause heparin sulphate deficiency (HME) and a suspected bladder prolapse. Negative laparoscopy 5 years ago and discharged from specialist and then just made to feel like I’m dramatic ever since. I’m at my wits end now and had a desperation blood test today not that I think it will show anything. My doctor treats me like a child and I’m in so much pain today and sick of it. I’m sorry it’s such a long post but I feel like begging for a hysterectomy or a depo injection but I’ve been sterilised and hate the side effects from it. If anyone can relate please tell me what I can do to fix this? TIA

  1. Dearest , thanks for reaching out. I am sorry you’re struggling so much. We are here for you. Just bear in mind that we cannot provide any medical advice, and we can only speak from our experience as patients. I know you mention you were seen by a specialist five years ago, but were they endometriosis specialists? From what I know of the disease, a negative result five years ago does not mean there are no adhesions now. Also, when having laparoscopies, doctors focus their search for adhesions around the pelvic area, but the disease can grow elsewhere. Have you done any research on Nancy’s Nook Facebook page? It’s worth having a good look there, because they have a fantastic directory with not only great endometriosis specialists, but supportive ones.

    At this point, while I understand your exhaustion (I really do, I was dismissed by doctors for over a decade), the best thing would be to find a supportive specialist near you. You have a good bunch of symptoms, and it would be worth to keep a diary to record when they happen, and with what frequency.

    In the meantime, I would focus on self-care and pain management, as much as possible. Have you ever tried a TENS unit? These are small gadgets, that reduce pain by providing small electrical pulses. They are inexpensive and easy to buy online. I have one and it has helped me so much, especially when waiting to be seen.

    Please know that we are here for you, even if you haven’t been diagnosed. If you need any advice regarding any symptoms, simply ask, and we will do our best to guide you.

    I am sending you the biggest hug. Hang in there - Jessie (team member)

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