Wondering about if I have endometriosis. Looking for answers.
Hi all.
I wanted to reach out for some guidance. I am a 24 year old female. About a year and a half ago after I got my IUD taken out, i began having extreme urinary urgency and frequency. I was going about every 15-20 minutes. I also had low back pain that began at this time, and low grade fevers. I talked to my GP and I was tried on a bunch of different antibiotics even though I had negative urines. Finally she tried doxycycline and tetracycline for suspected pelvic inflammatory disease. Long story short I had severe esophagitis and ended up in the hospital after multiple ER visits. I was admitted for 5 days but I finally got referrals after this. I also had a lumbar spine MRI which was normal. Urology got me in for an urgent cystoscopy which only showed inflammation in my bladder and a mass pushing in on the posterior wall of the bladder which they didn’t seem worried about. I also got a SI MRI which was normal. Since then I was on a bladder med, solinifican, but had to go off it because my constipation was so bad. My doctor and gyne think it’s endo. Now I am on progesterone and am still struggling with low grade fever, night sweats, and still some frequency and low back pain. I asked my gynecologist for a specific ultrasound referral for endo but she didn’t want to but wants me to try Lipron. I feel like I’m so young. I just want to get back to my active self and get my life back. Any suggestions/ideas? I appreciate any ideas.
Thank you so much in advance.
Hey
, my goodness you have been through so much at such a young age. It sounds overwhelming and exhausting having to do all that testing and experimenting with treatments. I imagine you're feeling disappointed about not having an answer to why you're in so much pain. I'm so sorry you're going through this. Unfortunately, I don't have personal experience with this and I'm unable to give medical advice. However I want to reassure you that you're not alone. We're here to listen and support you. Our members have been through it all, so be assured we understand your pain and frustration. I hope someone can chime in with some advice. Sending you warm hugs and pain free vibes.
- Kat (Team Member)Hi Kat. Thank you so much for your response. I really appreciate your kindness and willingness to help. It’s nice to know so I don’t feel so alone. Take care.
As someone who experienced something similar, it is possible. My endo tissue was surrounding my bladder. Took years to be diagnosed. It wasn't fully diagnosed until I had exploratory surgery. Keep pushing your doctors if necessary. And even if they don't know for certain, you can still be prescribed birth control pills or other hormone treatment, and it could help.
Hi. Thanks for replying. What kind of symptoms did you have if you don’t mind me asking? So, for years I had agonizing periods to the point i'd be bedridden, with a huge amount of clotty blood. Even went to ER multiple times from the pain level. It got worse as I got older. And I'd have bad bladder pain too, difficulty peeing and/or frequent peeing. I was just in agony. And frequent bladder infections at the same time. Pain to the point i couldn't even use tampons or get exams. I grew up in the Philippines in the conservative missionary community, no one believed me. Even when I came to the US, it took years to find an OBGYN to listen to me and stop minimizing my pain level (or blaming my weight). I eventually got put on birth control, which didn't really work very much. Finally found an OBGYN who listened. She did a procedure to explore what was going on. Figured out that my bladder is basically surrounded by endo tissue. Which, unfortunately, meant the tissue couldn't be removed. Ended up having a hysterectomy. Still have one ovary, so have a bit of a cycle. But I'm a functional human being in a way I couldn't be before.
Hi,
Thanks for your response. I’m really sorry you went through that. Thanks for the insight, it helps. I hope you are feeling better now.Thanks. A lot better, mostly thanks to the hysterectomy.
It really sounds like you’ve been carrying so much for such a long time, and that can be incredibly draining - especially at your age.
Some people in similar situations end up having a thorough endometriosis evaluation, like a dedicated MRI or specialist ultrasound, since there are specific imaging protocols that can sometimes provide more detailed insight.
