Suspected bladder endometriosis
i’ve always had very heavy, painful periods since i started them at 12. endometriosis runs in my family. my mom had it and so did my aunts. i soak through super tampons in under an hour. i get extremely nauseated on my period as well. i’ve also always had bladder pain on my period, pains in my urethra and burning while peeing. i get really bad rectal pains too. i have pain during bowel movements and struggle with constipation. i’m bloated 24/7. i stopped having a period last year due to a side effect of my mood stabilizer and i barely had any symptoms during that time. i went on birth control to induce a period and everything flared up really bad. i was in a LOT of pain. i went to the ER and the doctor said to see my gynecologist. i went off the birth control and forgot to see my gynecologist cause i continued to not have a period. however, in october my period came back and i was woken up with very painful rectal cramps. ever since then i’ve been having pain in my pelvis, burning while peeing, urgency and frequency. i went to a urologist and he said it could be interstitial cystitis but he was also convinced it was a uti and gave me antibiotics and told me to see him in three months. i was very disappointed and dissatisfied about that because i’ve had multiple negative uti tests and cultures! i’ve tried medications for interstitial cystitis and they don’t help! i’ve tried AZO/pyridium and antihistamines. i guess it still could be interstitial cystitis but why would i only have symptoms on my period and no symptoms during the year when i didn’t have a period? i’m not really convinced. i’m seeing my gyno this week and i’m bringing my mom along so she can help advocate for me cause she went through her own endometriosis journey.
I'm sorry you're going through this! And that the doctor didn't help you and instead said it was a UTI and sent you off with antibiotics. I'm glad you're going to see your gyno this week with your mom as an advocate! I was going to suggest getting a second opinion, so hopefully your gyno will offer more help. And if that doctor doesn't help, seek out another opinion if you can. Your symptoms make me suspect endo for sure, but of course I'm a patient and not a doctor. Keep us posted on how the appointment goes! ~Katrina, Endometriosis.net Advocate 
so sorry you are dealing with all of this! Your story sounds so similar to what I was dealing with. The bladder pain, the rectal pain and that 24/7 bloat, so exhausting. I am sorry that the urologist just gave you meds and said it was a UTI. I will say this, I had the scope done to diagnose IC and my urologist did indeed say I had it. BUT the meds do not help. Of course, I am not a doctor, but you can definitely still have IC for sure. As for the other pains and bloat, again, I am not a doctor, but it definitely sounds like endometriosis as well. I am so happy to hear you are going to see your GYN and bringing your momma for support and as an advocate. I think that is a great idea. Please keep us posted on how the appointment goes. Don't give up if it does not go well. Keep getting opinions if you can. Sending good thoughts and hugs though that this apt goes well <3 -Kimberli (advocate) 
I’m so sorry you’re having these symptoms. But they sound A LOT like my experience in my 20s and early 30s. My doctors gave me unhelpful antibiotics for years. Later on, I was diagnosed with severe interstitial cystitis as documented by 2 cystoscopies (a camera that looks in the bladder).
I can’t give you a diagnosis or tell you what’s going on for sure, but my symptoms flare the week before my period — burning when I pee, feeling like I need to pee all the time. I don’t have endometriosis on my bladder, but my endometriosis specialist told me inflammation in the pelvic area can affect the bladder even without there being lesions there. But some people with endo also have lesions on the bladder or ureters.
There are treatments for IC, but in my experience, you have to see someone trained in this area. For me, that was an urogynecologist and a pelvic floor specialist who treats bladder disorders. A urogynecologist is a doctor who works with urinary issues that affect people with a uterus. (A general urologist treats everyone and may not have a lot of knowledge about endo or reproductive conditions).
I’m going to leave some articles here with you in case they’re helpful; https://endometriosis.net/living/bladder-pain-doctor
https://endometriosis.net/living/bladder-pain
https://endometriosis.net/clinical/interstitial-cystitis https://endometriosis.net/living/bladder-pelvic-painPlease keep us updated on how things go. And good luck! - Keri (endometriosis.net team member)
hey there! I don't know Keri's experience but I thought I would chime in with my IC symptoms and what it feels like. Honestly, when I am having a flare up, it feels like a UTI intensified x's 10! It's horrible. My whole pelvic region is inflamed and pained. I constantly feel like I need to pee, but can't go when I sit down. And just feel so weird, down there. It is absolutely no fun. 🙁 I am sorry you are having some uncomfortable pain as well. I would definitely bring it up to your doctor and question IC <3 -Kimberli (advocate) I'm sure it's different for everyone, but during a flare my IC pain feels a lot like a UTI. Mostly, my bladder will feel tender and like I have to pee even though there's not much urine in there. Mostly, I get a sense of urgency and it hurts only as the pee leaves my bladder. My doc said that's likely because the lining is inflamed and the walls of my bladder actually fold in on themselves as I pee, which is why it actually helps me feel better when I drink a lot of water. I still get sharp pains in my pelvis now that my IC is under control. But for me, they're mostly related to nerve issues and pelvic floor muscle tension. I hope this helps! - Keri (team member and advocate)
hi there. Just wanted to stop by and let you know we are all thinking of you. How have you been doing? Did you ever receive any answers from your appointment? <3 -Kimberli (advocate)
