Undiagnosed and Concerned

By agiananntonio

1 min read

I’m 22 years old and have always suffered from debilitating cramps during my period. My family and doctors always said it was normal so I believed them.

Trying out birth controls

Around 16 I tried the depo shot since the planned parenthood gynecologist said it would alleviate my symptoms, it did not. So we tried the mirena IUD, I was told to wait a year before coming back for a follow up. One year later I was having the most irregular and heavy periods with constant pain during and after. I gave up after my doctor simply said, “Well, this just happens with some people.”

Symptoms getting worse

These past five years nothing has gotten easier. Constant irregular periods, some lasting months. Constipation and bowel problems. Debilitating cramps, severe back and rectal pain. I feel so bad for my husband because I’ve been with him since I got my IUD and I’ve never been really interested in sex due to the pain it causes.

Visiting the emergency room

A few months ago I had drank a new coffee that sent me to the emergency room. The pain was such a stabbing and sharp pain, it made me vomit. The pain went from my uterus, to my back, to my rectum. I also had diarrhea and rectal bleeding. This sent me to urgent care where the doctor diagnosed me with appendicitis, and told me to go to the hospital. Once in the emergency room, I was told I have “multiple” ovarian cysts including one that is 6cm. I was sent home with a note that said to buy Motrin, a heating pad and a $6,000 bill.

Not sure where to go from here

I came to this forum because I’m desperate and want to know what is wrong with me. Is it the ovarian cysts? Endo? The IUD? I’m so nervous to go to another gynecologist because I don’t want to be ridiculed for being weak again.

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Keri Wiginton Member
I am so sorry about everything you've gone through. Debilitating periods might be common for people with certain conditions, but they are never "normal." We can't give you a diagnosis, but you have a lot of symptoms that sound like endometriosis or polycystic ovarian syndrome (PCOS). And it's important to know that hormonal options only help with pain for about half of the people who take them. It's also not uncommon to have more cramping and irregular periods on the IUD, especially for the first 3-6 months to a year (which is a very long time to go with worsening symptoms). The only surefire way to know if you have endometriosis is to have a laparoscopy — where a surgeon looks through your belly button with a camera — with a trained OB/GYN. That's different than a regular gynecologist. Unfortunately, these surgeries can be very expensive if you don't have health insurance. If that's your case, I'd suggest starting with Planned Parenthood to see if they can help you find someone who will give you a proper diagnosis and not just try to treat symptoms with birth control. That's the first step in finding the best treatment. If you do have health insurance, you can search for OB/GYNs on your plan. I'll attach some articles that might be helpful. Wishing you well! - Keri (endometriosis.net team member) https://endometriosis.net/living/find-doctor-specialist https://endometriosis.net/clinical/find-specialist https://endometriosis.net/diagnosis https://endometriosis.net/diagnosis/laparoscopy-surgery-biopsy
Kimberli Davino Member
<inline-mention username="agiananntonio" user-id="4144499"/> - Firstly, I am so sorry to hear you are dealing with this all. Your story sounds exactly like mine. I hate when doctors, family/friends tell us our periods and pain are normal. Pain is not normal! Like Keri above said, unfortunately we cannot give you a diagnosis or know for sure what you are dealing with. But from the sounds of your symptoms- like I said they sound just like mine- I would say it could be endometriosis. I also have PCOS, which can most definitely be something going on as well. I found birth control and any other hormonal medicines to not really help my symptoms. Some women do find relief once their body gets used to it though. Keri left you with great links to check out for sure. But yes, the next best step would be to head to your OBGYN or try and search for an endometriosis specialist. (If you are not on there yet, join Nancy's Nook- it is a FB group and she has endo specialists listed that you can look for in your specific area). I know it is scary heading back to the doctor after it seems they all say the same thing. It took me over a dozen of doctors before one listened to me and took me seriously. It is frustrating and exhausting, but don't give up fighting for answers. The only way to know for sure if it is endometriosis, would be through surgery. Hoping you are able to get answers and relief soon. Please keep us posted and do reach out anytime ok? You are not alone. We are here for you, always. Sending the biggest hugs <3 -Kimberli (team member)
Kimberli Davino Member
<inline-mention username="agiananntonio" user-id="4144499"/> - I just wanted to swing by and see how you are doing? Thinking of you. ❤-Kimberli (Team Member)