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Struggling to get a diagnosis

Does anyone have any advice? I won’t go into all the details but in summary I have been suffering with endo symptoms most my life and particularly the past 3 years. In 2020 I was under hospital where I had a cervical cyst and polyp on my cervix. The cyst disappeared and polyp was removed. As I refused to go on the pill/coil (due to previous side effects not agreeing with me) the GP discharged me. He mentioned adenomyosis at the time but didn’t officially diagnose. I have now got crippling period pain where I am taking 4 paracetamol a time that doesn’t take away the pain and I even took 6 on Saturday (bad I know) I can’t take ibruprofen as it gives me bad acid reflux. I was up all night with excruciating pain that I even considered going hospital as it was so bad. Anyway, I have had a scan recently and everything is ‘normal’ and clear. I’m sick of hearing this and sick of struggling. Has anyone been diagnosed where the scan was clear and how did you go about getting this? I’ve been referred to the hospital and I need answers now and a diagnosis. ‘Period pain’ at work isn’t just quite cutting it. I know the complications surgery can cause however, I’m a lesbian anyway and have always prioritised my health over wanting children. I know drs are reluctant to give surgery to girls in their 20s who don’t have children but I have a female partner to carry children if needed and I’d rather be a healthy good mother with an adoptive child than go through this pain struggling every single month. I could be infertile anyway if I did have endo.

Anyway, my question is, how did you get a diagnosis? Was you pushy with it and stood your ground? Any tips to help me? And did you have a clear ultrasound but still had endo/adeno?

Also side note, I also suffer with PMDD and I find the worse my pain is the more I struggle mentally.

  1. I am so sorry you’re going through this. But so many of us have struggled with a diagnosis. Definitely stand your ground and keep looking for a doctor who’ll listen.

    I hope other community members chime in, but I’ll share my experience. First, yes, many of my scans have been clear despite having endometriosis and lots of scar tissue. The only thing that showed up on any ulstrasounds were endometriomas. But not everyone with endo has cysts. And with my last surgery, my ultrasound was clear, but my doctor found endometriosis on the ligaments under my uterus. He also removed other endo-related scar tissue that didn’t show up on a scan.

    My No. 1 tip for the endo part is to find an endometriosis specialist and excision surgeon who treats many people with endo. Often, that means going to a different doctor. And believe me, I know how frustrating that is. Before my last surgery (my third for endo) another OB/GYN refused exploratory surgery and MRI or CT scans. I had to travel to another state in the U.S. to find someone who’d operate. While I did have to wait 8 months for the procedure, it was worth it. To find a doc, I’d suggest heading to the Nancy’s Nook Facebook Page. They have a list of interactionally-approved docs. Here’s another story that may help:

    In regards to your adenomyosis, that one can be tough to diagnose. My doc said he suspects I have it, but said he couldn’t really diagnose it without taking my uterus out. And I’m not ready for that. I do take a prescription anti-inflammatory that helps with period pain — it’s a Cox-2 inhibitor, which means it doesn’t irritate the stomach. It’s worth asking your doctor about. Here’s my experience with it:

    Please keep us updated on how it goes! - Keri ( team member)

    1. I don't have much to add that is different from what Keri said, but I wanted to say that I wholeheartedly agree with what she said about pushing...please do keep searching for a doctor who will listen.

      Although I also had endometriomas show up on scans, I had sacral nerve involvement with some of my endo lesions and those did not show up on scans. I also had endo all over my pelvis that they didn't see on the scans. I had horrible pain that meant that I could only walk about a mile, stairs were excruciating, and I couldn't stand for very long. All of that went away after I had surgery.

      It makes complete sense that your PMDD is worse when you have worse pain. Chronic pain is incredibly challenging to manage.

      Definitely take a look at Nancy's Nook and please feel free to ask us any other questions you might have. I wish you luck! ~Katrina, Advocate

      1. chiming in with my fellow community members to share my experience. But first, I am so sorry you are dealing with all of this. I know how frustrating and angering it is. You are certainly not alone in both what you are feeling and your struggle to get a proper diagnosis.

        For me, I had pains for years. I would end up in the ER multiple times just for them to shoo me away and say it was just gas pains. Finally, when I got a bit older, I was able to advocate a bit more for myself and then started all the scans. They always would come back clean. Nothing ever showed up. So, my doctors started to say it was all in my head and what I needed was therapy. After a few weeks of being depressed, I decided that wasn't good enough and I began to fight. I wanted answers and I was going to get them.

        After a dozen or so doctors, I found one who would perform surgery to diagnosis me. And sure enough, when I woke up from surgery, he said he had found endometriosis all over. It seems however I need a surgery every 2 years. I have had three so far and feel a 4th is coming. BUT, to have that diagnosis and comfort of knowing I wasn't crazy, and it wasn't just gas pain or in my head, was a good feeling. I do also have cysts, PCOS and suspected adeno as well. I refuse to take birth control because it just really messes with my mental state. So, I just do my best to manage my hormones with supplements and diet change/light exercising.

        I would definitely be pushy and stand your ground until someone listens and helps you. And I agree with Keri's suggestion of checking out Nancy's Nook- that is where I found my specialist. Ya, I had to travel a little way to get there but it was worth it. Surgery is the only way to really diagnose endo and to see what is really going on inside. Most people don't get lucky with just getting scans done, they are usually clear. (All though there are cases where others do get lucky with being able to see it on scans). But endo can be so deep in places the scan just won't pick up.

        But like Keri also said, adeno most likely can't be properly diagnosed until a hysterectomy, as that is the only way to fully know.

        And I suffer with PMDD as well. It is really bad especially leading up to my period. I actually just started therapy because I just, can't take it anymore. I also am learning what foods are a bit more triggering during that week and trying to stay away from them. And just make sure I am gentler with myself that week and fill my plate with things I like to do or that bring me joy.

        Truly hope you get the answers and relief you so deserve. Do not stop fighting. You have this entire community here for you. So reach out anytime you need to chat or have questions. And do keep us posted on how everything is going. Sending hugs <3 -Kimberli ( advocate)

        1. Sometimes it really does take multiple doctors to get a proper diagnosis. I saw close to 10 obgyns as a teen before I found somebody that would take my situation seriously. My first laparoscopic surgery showed that I had stage 4 endo. You know your body and you know that something is not quite right. I would continue to see doctors until I found one that took my concerns seriously.
          I had a hysterectomy at 28, but I was married with 4 stepkids and had no desire to have any additional children. It was a little tricky to convince the doctors to do my surgery. But honestly, even with some endo reoccurrence, I am still doing better since my surgery and I am happy I had it done. - Amanda (team member)

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