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Confused about what to do next

Hi there, I'm new here. It started for me when I was 18 with a bad "knitting needle" pain in my right ovary area. I also started having very painful and heavy periods to the point where the pain made me cry and nauseous and I was basically bed bound for the first few days of my period. Then in 2013 I had an ovarian cyst rupture and ended up in excruciating pain in the ER. I was told to see my primary care provider for follow up care but I didn't have one and didn't understand why I needed to. About a year or so after that I went to my local health department (I didn't have insurance so it was my only option) with bad period pain where they sent me for a transvaginal ultrasound. They found that the lining of my uterus was abnormally thickened and I had one cyst on my left ovary and three "chocolate cysts" on my right ovary, one being the size of my ovary. The doctor was very rude and dismissive when I asked if it could be endometriosis. She said any woman could have endometriosis, that they don't do exploratory surgeries there (duh) and that I should just take birth control. She gave me birth control that said "do not take if you have migraines with aura" which I had told her I have. So I was pretty upset with that appointment and never went back. I have had two kids since then and my youngest is a year old still nursing. My period returned both times pretty quickly but now it's getting bad again, my lower back is hurting worse than ever before and my cramps and bleeding are so heavy. While I was pregnant both times I felt random tearing feelings in my belly as the baby grew. I also have extreme double over pain when I have to poop or if I let my bladder get too full. It's like being speared up my rectum and it makes me feel like I'm going to pass out. I guess I'm just wondering if this is normal? Or if I should go back and try to see someone now that I have insurance? I have so much distrust in doctors I really don't want to.

  1. Thank you for reaching out to us. I'm so sorry you've had less than exemplary care. The way the health department worker dismissed you and sent you away with birth control that wouldn't even work for you makes me so mad!

    I highly encourage you to seek out an endometriosis expert, or at least, to start with, a gynecologist who is very familiar with endometriosis. I'm not a doctor, but I am someone with stage 4 endo, and your symptoms sound very familiar to me, and also concerning, especially the pain with pooping and urinating. Those things are definitely not normal.

    I completely understand having a mistrust of doctors (I have a rare disease that took decades to properly diagnose and most doctors still don't understand it, so I am familiar with gaslighting and not being taken seriously). What you are describing in terms of symptoms should be looked at, and I would recommend doing so sooner than later.

    Take a look at the Nancy's Nook doctor search tool to see if you can find someone near you.

    You can also search their Facebook group for the names of doctors recommended by patients.

    I wish you so much luck; you don't deserve to be in pain like this and you do deserve to find someone who will care for you properly. Please feel free to reach out with other questions, and keep us posted. ~Katrina, Advocate

    1. Thank you for responding. I tried to use the tool to look up doctors but they are all hours away in different states. I guess I should check with my insurance and just find a gynecologist in my area. I just don't want to go through all the embarrassment of getting checked out just to be dismissed again. I hope I can find someone who will actually listen.

    2. Sorry to hear that; I am in a similar situation and I had to travel for my last surgery. I know that's not within reach for a lot of people. I would still recommend going to the Nancy's Nook Facebook group page if you're on FB and using the search tool within the group to look for doctors in Washington state. Sometimes people post the names of their doctors. Other endo groups on Facebook might be a similar resource. I wish you luck finding the right person, and I hope it's the next doctor you see! ~Katrina, Advocate

  2. I am so sorry that you have had this kind of experience when getting medical care. It is understandable that you may be hesitant to try going back to the doctor. I will tell you like I explained to my bonus daughter, issues like these do not just go away in most cases. I would strongly recommend finding a healthcare provider to see. You can start by getting a list of OBGYNs from your insurance. Once you have some doctors' names, Google them! There are many websites that rate doctors nowadays. I personally do this whenever I am looking for a new doctor.
    It is also important to remember that doctors work for you. So if you see one and do not like how they treat you, then you can try another one. You do not have to accept subpar treatment. Feel free to ask me anything if you want more information or need some help. - Amanda (team member)

    1. Thank you Amanda. I will definitely be checking ratings of gyn's in my area. I definitely know this isn't going away, I've been dealing with this pain for so long and it's just getting worse. It's frustrating because my mom has some of the same symptoms and so she just always told me it was normal. But I never saw her curled up crying while on her period or having to stop in the grocery store from being in so much pain so I realize now this isn't normal.

  3. Others here have given you some great advice. But I want to add that it is never “normal” to have the kind of pain you’re experiencing. And I know all to well how it feels to have a doctor dismiss your ER-worthy symptoms and offer birth control as the only option. You deserve better. Please keep searching for the right care. I think you would definitely benefit from a doctor who treats people with endometriosis on a regular basis. Not all OB/GYNs are experienced in the kind of surgery of care that you may need. I’ll first say that you might find good info about doctors at Nancy’s Nook (which is already mentioned). The site is another good one. (Always doublecheck with you insurance to see who is covered in your network.)

    I’ll leave some other articles in case they’re helpful.These are some that I’ve written based on my experience trying to find someone: ;

    Please let us know if you need more guidance and we can try to point you in the right direction! - Keri ( team member)

    1. Thank you for your reply! I tried to use Nancy's nook and icare to find a doctor but they are all in other states and there's no way I'll be able to go that far for care. I'm just going to have to start with a gynecologist in my area and hope they will listen. How do you cope with family that doesn't understand your pain or support you when trying to find answers?

    2. I’m sorry that there aren’t any specialists in your area, but that’s not uncommon. I had to drive to a different state to see my excision surgeon a year ago, and I was on a waiting list for several months. Now I get my pain, migraine, and PMDD management through my regular doctor. And she’s great!

      The good news is most OB/GYNs should have an awareness of endo. So you shouldn’t feel discouraged just because you don’t see their name on the list. And definitely keep searching until you find someone you feel comfortable with.

      In terms of how I manage family that doesn’t understand, I send them links to stories I think they should read, including the ones I write for this site. I’ve also had family members sit in on doctor visits. But I’m pretty lucky in that area. My husband is very supportive, and my mom actually had/has endo. She didn’t have any other symptoms besides infertility. But she’s aware that I’m not making the condition up, which helps

      And I find a lot of support through the endo community! So I do what you’re doing…I reach out to my fellow warriors when I need some extra support or advice. There is always someone here who knows what I’m going through 😀 - Keri ( team member)

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