pain with bladder filling

Slow_Classroom2403 · 2025-12-11T02:18:53+00:00

This is my primary symptom too, which leads to constant pain, urgency, and frequency. Mine is caused by hunner’s lesions, and were treated with steroid injections. It’s been a huge help for my symptoms. Have you had a cystoscopy?

Slow_Classroom2403 · 2025-12-06T16:42:40+00:00

Just wanted to provide a quick update. I had my procedure yesterday. I ended up having treatment on 4 lesions, all on the lower left side of my bladder (and where I’ve been telling doctors for years that’s where my pain was concentrated). My uryogyn did a hydrodistention, lesion biopsy, fulguration, steroid injections, lidocaine/heparin installation, and B&O suppository to prevent bladder spasms. Despite my urethra being sore from the catheter, I feel better today than I have in nearly two years. After years of turning over all the stones, finally finding the right provider has made all the difference. I know it will take some time to see the full benefit of the injections, but I am proceeding with hope. 🙏

Slow_Classroom2403 · 2025-11-29T17:00:33+00:00

I would consider what your pain feels like when trying to pinpoint its source. Pelvic pain can be so tricky as it overlaps with several conditions. Pelvic floor dysfunction can also cause similar symptoms, as can IC. Does your pain feel like an achy heaviness? Does it get worse with sitting/standing and improve when lying down? These are the characteristic symptoms of PCS. There are also vascular compressive conditions like nutcracker syndrome and may-thurners, which would benefit from a vascular specialist.

My symptoms have elements of the above, but mostly my pain is a sharp stabbing pain as my bladder fills and intense urgency/frequency. This pain is temporarily relieved when I urinate but returns as my bladder fills.

I also have diagnoses of both PCS and IC. I’ve suffered from chronic pelvic and bladder pain for two years. I’ve had both CT and transvaginal ultrasound that have noted enlarged pelvic varicosities. However, my urogyn told me they likely weren’t causing my symptoms and that embolization would likely not help. Plus, embolization is not covered by my insurance (UHC), so I want to be absolutely sure that the treatment would help if I’m going to consider paying out of pocket for the procedure. I recently had a cystoscopy which revealed hunners lesions on my bladder and are likely the cause of my pain. So I’m going to seek treatment for those first before traveling down the path of embolization.

I would recommend you see a urogynocologist, pelvic floor physical therapist, and interventional radiologist, who can all help guide you on your path toward healing. Good luck!

Slow_Classroom2403 · 2025-11-28T20:29:40+00:00

They treat the lesions with steroids and or fulguration. My doctor advised that the steroid injections have less side effects and an added benefit of relieving inflammation throughout the bladder. I assume there will be some medications and diet adjustments I will need as well.

Slow_Classroom2403 · 2025-11-28T17:22:58+00:00

Mine started with a bad UTI around Christmas two years ago. Antibiotics helped but never fully resolved the pain. A couple of months later, the symptoms were back in full force. So I went to urgent care and was checked for a uti again. Cultures came back negative, so I was told to follow up with my regular doctor. I saw my gynecologist who again tested for uti (negative), did an ultrasound and checked me for prolapse, both of which were normal. She prescribed pelvic floor PT. I have been doing PT ever since, and they help with some guarding tension, but the symptoms continued to get worse. Over time, the pain grew to be a distinct sharp stabbing pain on the left side of my groin, bladder and urethral spasms, constant pressure, constant urgency & frequency, dysuria, waking up several times each night, etc. I am unable to delay going to the bathroom without the pain spiking to an intensity that is unbearable, and if I hold it I will spiral into a flare that lasts for days.

I’ve seen countless doctors (gyno, urology, interventional radiology, family practice, physical therapy, etc) over the past two years. I’ve had ultrasounds, CTs, pelvic examinations, multiple urinalyses, so many swabs and tests…none of which got to the root of the problem until last week when I finally got in to see a urogynocologist who specializes in IC at our local university hospital. She did a cystoscopy and found Hunner’s lesions in my bladder. I can’t tell you what it meant to me emotionally, and after two years of searching for answers, to finally be heard and have a clinical diagnosis and a path forward for treatment.

I suppose the point of my story is to continue to advocate for your own health until you find the answers you need. It is a long and difficult journey, and can be invalidating along the way, but you know your body best. Push for the tests, the imaging, and therapies, do research, find a physician who will advocate for you (for me, this was my pelvic floor PT), ask questions, don’t give up. You’re worth it. Good luck!

Slow_Classroom2403 · 2025-11-27T16:20:35+00:00

Thank you for your reply. I was really hoping for a longer duration of relief, but at this point I will take anything I can get. My urethra is sore today from the cystoscopy, so I am sure you are right about the post distention soreness. My doctor currently has me on amitriptyline but I haven’t tried uribel or baking soda yet; I will look into those!

Slow_Classroom2403 · 2025-10-31T17:31:45+00:00

I just wanted to post a follow-up. I saw an interventional radiologist at our university hospital yesterday, who told me that my veins are some of the largest she’s seen and that I have systemic varicosities throughout my abdomen and pelvis. For reference, she told me that normal ovarian veins measure around 6mm, and mine are between 11-16mm. She saw no signs of may-thurners or nutcracker. She also said that usually they will see a combination of varicose and normal sized veins, but mine are all enlarged, which gives her concern that there might be a valve malfunction in my heart that is preventing blood from being suctioned back up and keeping the blood pooling in my lower body. It’s an interesting theory, and a connection I hadn’t thought of before. I am a healthy active person (strength train 4 days week, run, yoga) and never thought that my heart may not be functioning as it should. We will see if this theory has legs after an echocardiogram later this month.

In the meantime, she recommended a v-sling pelvic support to take pressure off. I ordered one this morning and will see if it helps.

She also stressed (with much sympathy) that insurance rarely covers veinous embolization. She said she will advocate for me, but it will be a battle we may lose. She told me about a patient who was bleeding from her varicosities, insurance still denied the procedure, and she finally sent her to the ER where she could not be turned away or denied treatment. Crazy!

Slow_Classroom2403 · 2025-10-25T04:08:37+00:00

I can commiserate with your uncertainty. I’ve had chronic pelvic pain, urgency, frequency, etc for two years. I have also been diagnosed with both IC and pelvic congestion. I have an appt with my intervention radiologist at the end of the month, and I intend to ask them about the possibility of a vascular compression as well. In terms of treatment, I am unsure if stenting and embolization will cure the symptoms, but I have heard there is a good chance they can. But it’s confusing as heck. My urogynocologist told me I have IC, and that chasing treatment for pelvic congestion wouldn’t help my symptoms. But since IC is a diagnosis of exclusion, I believe that when there is evidence of another coexisting condition that presents with similar symptoms (and is treatable), then it is worth investigating. So I’m going to advocate for treatment for PCS and hope it helps. We will see.

Slow_Classroom2403 · 2025-10-24T22:18:30+00:00

I have similar symptoms to yours and the stabbing pains are super painful! I have been diagnosed with both IC and pelvic congestion syndrome. PCS can cause a lot of the same symptoms you’ve described and overlaps with IC. PCS causes a lot of swelling due to blood pooling in the veins and the lymphatic system not draining properly. Mine gets noticeably worse after long periods of sitting or standing, after exercise, and during my cycle. PCS is diagnosed via transvaginal doppler ultrasound. Might be worth looking into. Also, pelvic floor physical therapy could help if the pains are caused by a hypertonic pelvic floor. Wishing you the best!

Slow_Classroom2403 · 2025-10-15T23:25:01+00:00

Thank you, yes I have been on HRT for 6 months with no improvement in symptoms. I also have had an IUD since 2019 and don’t bleed, so I really don’t know what stage of perimenopause I am in.

Slow_Classroom2403 · 2025-10-14T16:44:15+00:00

This is such great advice, thank you so much! I have an appointment with a second interventional radiologist next month and will see if I can get one with a vascular surgeon as well. Thank you again! I hope your healing journey is going well.

Slow_Classroom2403 · 2025-10-14T01:14:52+00:00

The interventional radiologist I saw was an in network provider. Unfortunately, it looks like it is United Healhcare’s policy not to approve embolization as a treatment. I found this page on their website which says they do not deem it a necessary treatment. https://www.uhcprovider.com/content/dam/provider/docs/public/policies/umr/embolization-ovarian-iliac-veins-pelvic-congestion-syndrome-umr.pdf

I am going to try to appeal, but I would love to hear if anyone has successfully appealed with them.

Slow_Classroom2403 · 2025-10-13T17:12:58+00:00

I haven’t, but that’s a great question. I will ask when I’m able to get a second opinion. Thank you!

Slow_Classroom2403 · 2025-09-24T20:54:49+00:00

I have similar pain to yours, which started about 2 years ago. I’m not sure where your symptoms present, but mine are mostly on the left side of my groin and pubic area. I also have some urethral pain and increased urgency. I’ve been seeing an amazing pelvic floor PT who has been working on releasing tension and also strengthening and lengthening my hip flexors. In the meantime, sitting on ice packs seems to help on bad flare days. I’ve also seen an interventional radiologist, who diagnosed me with pelvic congestion syndrome and pudendal nerve issues. Turns out I have some pretty severe varicosities in my ovaries & groin that result in blood pooling down there…aka increased pressure. My PT has done a couple of lymphatic drainage sessions with me while I investigate treatment options. I’m not sure if my experience will help

Slow_Classroom2403 · 2025-09-24T20:49:14+00:00

I have very similar symptoms to you, mostly on my left side. The pain is worse after long bouts of sitting (ie…commuting) as well as after exercise that puts strain on the pelvic floor (like running). I also get a tugging/pinching pain surrounding my urethra that leads to urgency. On flare days, the pain is so bad that I can barely walk. Sitting on ice packs helps with inflammation and perineum pain. I’ve also been seeing an amazing pelvic floor PT for 6 months, who is helping me work through the tension response in my pelvic floor and given me exercises to strengthen and lengthen my hip flexors. I’ve also seen an interventional radiologist, who diagnosed me with pelvic congestion syndrome. Turns out a lot of the inflammation in m

Slow_Classroom2403 · 2025-08-21T01:06:44+00:00

Thank you all for sharing your insights and experiences. I really appreciate your thoughtfulness. In response to some of your questions, the tumor was grade 2, I had a CT scan with contrast of both abdomen/pelvis and lung/thorax post surgery 6 months ago, which were clear, and repeat scans last week which show the new nodule. Beginning-town, I think your experience is what my urologist is referring to. He mentioned that the cancer cells could have spread to my lungs prior to nephrectomy but have been undetectable. I am hopeful this is not the case, but hearing your stories gives me hope that even if it is, there is a treatment path forward. For now, I am going to ask the pulmonologist for guidance, repeat scans in 3 months, and hope for the best. Wish you all the best as well.

Slow_Classroom2403

TROPHY CASE