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Is it endo??

I hoped to get some advice from anyone who has confirmed abdominal/ bowel endometriosis or similar. I’m pending an appointment with a gynae for a diagnosis but I’ve been waiting almost a year!! at this point so thought I’d see if anyone experiences similar to me in the meantime because some months I feel like I’m going crazy 😀
For about the past 2 years I’ve experienced some symptoms with my period that I find unbearable.
The odd thing is that, almost all the pain I experience is my abdomen (mainly upper abdomen) and not so much in my pelvic area (honestly I find my uterus pain to be tolerable most months with paracetamol/ ibuprofen - sure the pain is there, but doesn’t feel extreme to me, if we were basing the pain level on my uterus I wouldn’t think I had endo);
I tend to get insane bloating; I get 2 sharp pains on both sides; sensation is comparable to a stitch from running but it lasts my entire period; and the main pain that I find unbearable is the intestines/ bowel region. It’s a very unusual pain/ sensation. They aren’t cramps; my whole region feels inflamed, like a burning, prickly, stinging sensation along with dull aches and pains. When I press down on my intestines, it’s very painful and radiates across the whole region. I’m just not sure if it’s a gastro flare up as a result of my hormones, but it’s a very specific and relatively new sensation; not one I would generally associate with having trapped gas or other intestinal issues (which I think feels more crampy)?
I went to the doctor last year (April 23) with this pain/ burning as it was so severe and lasted an around 4 days without relief from pain killers or buscopan. I was reluctant to go at first as it was during my period and suspected the doctor might dismiss me and tell me it was just period pain related, but given it was a real burning sensation, and higher than my pelvic region, I felt like it might have been non period related and I was a little spooked by the pain.
The doc examined me at the time and sent me to straight to a&e with a suspected apendicitis because when she pressed down, the pain felt so sharp and shot up my right side and around my abdominal region. A&E docs also suspected appendicitis and even sent me for surgery, only for the surgeon to then send me home.
Because I was sent to hospital, I ended up going through a series of tests ( transvaginal ultrasounds, MrI scan) and they found I have a suspected endometrioma on my left ovary, and a fibroid within my womb.
Since this (semi) diagnosis, everything has gone silent and I’m still pending an appointment, so I’m not fully sure if it’s endometriosis that I have.
From other experiences with endo, does this seem to be what’s going on? I can’t find a lot online about women experiencing more abdominal/ bowel pain than pelvic pain. Seems unusual that my period cramps are tolerable, but abdominal pains are what impacts me greatly. Any similar experiences would be welcomed 😀

  1. Hi an advice from someone who has gone through your experiences and more. You will get gaslighted by a lot of physicians or healthcare providers because of how little is understood about endometriosis. My advice is to look for an endometriosis specialist amongst your medical insurance in-network physicians. Do research into obstetrics and gynecology doctors and find the one that has a sub specialty or experience with endometriosis. Most of the other doctors have little to no clue about endometriosis. Another advice is to do your research into meals to reduce inflammation and avoid sugar as much as you can. Good luck!

    1. thanks so much for your response! That’s exactly how I’ve been feeling, that it’s being treated as low priority and I haven’t got an official answer in terms of diagnosis or ways or managing the pain.
      Definitely will take that on board and see if I can get in with someone who is more specialised!

  2. Another thing,the insane bloating is consistent with endometriosis. It is intermittent or persistent depending on how severe one’s endometriosis is.

    1. Hi . has given you some great advice. It's insane that you have been made to wait this long. Are you in the United States or elsewhere? Do you have control over who you see? Pain with endometriosis doesn't always make sense. Some people have tons of endometriol tissue in all the wrong places, but have very little pain. Others have loads of pain, but very little tissue growth outside the uterus. What concerns me is the damage endometriosis can do to the intestines if it begins to grow near them unchecked. It's really important that you see a specialist as soon as possible. Please advocate for yourself and really push for that appointment. If the new symptoms worsen and you feel unsafe, go back to the ER. Here is an article about the potential complications of endometriosis: I hope it helps you identify some of your symptoms. Please keep us postedif you don't mind. I will be thinking of you. - Lori (Team Member)

      1. thank you so much for the info! I am based in the UK; our Health Care system can be pretty slow unfortunately, however since my post I’ve managed to get an appointment with a specialist consultant at the end of the month. Hopefully I can get some clarity 🙏

        1. I am so glad to hear you have an appointment, . Please let us know how it goes. Sending lots of healthy vibes your way. - Lori (Team Member)

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