Symptoms of endo
Hi everyone,
I have quite the list of symptoms I believe to be endo, however, I am frightened it won't be and I am just being dramatic... like some doctors say, it could be 'psychological'
-Painful intercourse
-Unbearable periods (pain, heavy, irregular)
-Sharp pains around the belly button
-Major bloating
-UTI's
-Trapped wind
-Constant fatigue
-Headaches
-Painful ovulation
I have had 2 ultrasounds, an internal scan and MRI, but nothing is showing up. I'm terrified that there won't be anything if I go for the surgery.
I also started my periods at 10 years old (I'm 20).
Any advice is welcome.
Thanks.
I understand your hesitation. Sometimes things do not show up on scans, as you probably know. Although some of my endo showed up on scans, once the doctors operated they found extensive disease that did not show up on scans, so it is definitely possible to have it and have clear scans. The things you are experiences are certainly not normal and are indicative of an issue, whether it is endo or something else. I'm not a doctor, but I agree with you that your symptoms point to endo. Have you pursued a second opinion? Have your doctors offered surgery or is that something you'd have to advocate for? ~Katrina, Endometriosis.net Advocate also, I have been about 5 doctors, but only one took me seriously! Ugh, sorry to hear it. Unfortunately, that is so common with folks with endo! ~Katrina, Endometriosis.net Advocate
Yes. Surgery has been offered. I arrived the morning of my surgery and my surgeon changed last minute, who put me forward for an MRI which I hadn't had at that point.
Oh wow, I can't imagine having had a surgeon switched on me last minute. I have so many other health issues that this would be a no-go for me. I'm sorry to hear that happened to you! ~Katrina, Endometriosis.net Advocate
Whether or not you have endo, you’re not being dramatic. Your symptoms are real no matter what’s causing them. But I’ve definitely been where you are, worried that doctors would do a surgery and find nothing. And that maybe I’m wasting their time. (Health care guilt, I call it.) With that said, none of my scar tissue or endometriosis lesions — except endometriomas — have ever shown up on a scan. But I’ve had 3 surgeries at this point, and endometriosis and scar tissue has been found in each one despite clear ultrasounds (my last doc refused an MRI). Your symptoms are typical of endo. Surgery is a very logical next step to see if endo could be the cause of your symptoms. And if the docs don’t find anything obvious (endo can be clear or microscopic and can get missed), then it’s good to know that too! Keep in mind that surgery may not fix all of your symptoms. But I think it’s a very reasonable thing to consider when doctors don’t have another explanation (other than psychological) for what’s going on. Good luck and keep us posted! - Keri (endometriosis.net team member) Thank you so much for your time and for getting back to me. It's reassuring to know that there have been others in a similar boat to me. It's all very real and I believe I only doubt my symptoms and struggles because of how doctors have treated me🙁 I have been in and out of the doctors since 11 years old, reiterating the same issues and gaining more along the way. It's such a frustrating process! But I will take your advice and go for the surgery, it's the only way to get an answer (whether that's a diagnosis or the opposite).
Also, they keep recommending the pill to me, as though it'll cure me, but surely this is just masking the issue and postponing the problem for future me to deal with! I can hear future me shouting at me to get it sorted now lol!I'm sending you the best of luck to figure things out! In regards to the pill, it's definitely not a cure. But there is some evidence that it can help ease symptoms for some people. My doctor has also told me the goal is to reduce exposure to surges of estrogen and other hormonal flucuations. Personally, hormonal birth control -- that includes various pills but also the NuvaRing -- did not help my symptoms. In fact, they made me feel like I had cramps all the time. And I could never stop my period, so I had a lot of breakthrough bleeding (that caused pain). However, that is not the case for everyone. I know some people who feel much better when they're able to use something like the Mirena IUD or another hormonal birth control to stop their periods. Unfortunately, that wasn't the case for me. But I don't think it's unreasonable to give hormonal birth control a shot if you've never tried it before. With that said, you know your body, and you should never take something you don't feel comfortable with or that makes your symptoms worse. - Keri (endometriosis.net team member)
I'm going to leave some articles here in case they're helpful: https://endometriosis.net/living/stop-birth-control; https://endometriosis.net/living/progestogen-story; https://endometriosis.net/clinical/birth-control-works; https://endometriosis.net/hormone-therapy; https://endometriosis.net/clinical/progesterone-resistance
