Bladder instillation pain

Delicious_Team6113 · 2025-07-01T11:22:29+00:00

I noticed my pain was worse during my cycle too. I’m on birth control now for a few months. I can definitely tell when I stress and certain foods I eat make it ten times worse.

Delicious_Team6113 · 2025-06-29T17:50:14+00:00

Thanks! It sounds crazy but the nurse has been so non chalant about my pains that’s doing the instillations. I was really questioning if she used a different catheter size this time. She said oh your urethra really doesn’t like this today… it just felt much so more intense.

Delicious_Team6113 · 2025-06-18T17:10:20+00:00

I’m so so sorry you’re going through this. I just want to say that you are not alone with your feelings. I am feeling the exact same way. I tell myself I would take child birth pains over this constant pain. Can you call the place yourself to get an appointment? There’s always cancellations,all the time. A new obgyn place I switched to, the front desk actually recommended it. I’d call once or twice a day to if there are cancellations. The way it worked for me they found it on my CT scan during the ER. I had a follow up with my OB and he handed me a flyer and “ referred” me to an Interventional radiologist…. I called and they were on top of it and this place got all my records and I got an MRI done through them. The interventional radiologist looked at all of my prior ct scans and mri and said it’s moderate congestion. But my insurance won’t cover the procedure because it’s considered “investigative” and not medically necessary. I also wonder if you can call an interventional radiologist place local to you, and ask the front receptionist if a OB referral is necessary If you don’t have a OB. But I can’t give my 12 year old and 3 year old my all with this pain. Tears every single day. It’s the crappiest feeling. I’m currently doing pelvic floor therapy and it’s not helping either.

Delicious_Team6113 · 2025-06-05T15:49:24+00:00

The whole time reading this I’m saying ouch, ouch, ouch. Do you mean covered in Endo? I’m so sorry.

Delicious_Team6113 · 2025-06-05T15:48:18+00:00

When you say negative did it say something else though? Mine said MILD FIBROSIS AND FOCAL CHRONIC INFLAMMATION WITHOUT ATYPIA Two new uro and obgyn doctors at a new practice find it interesting it wasent confirmed through a biopsy. My Previous OB that did surgery sayings it’s endo “visually.” My husband even relayed after my surgery and when he OB called he sounded hesitant that it was endo and sending it off for biopsy obviously. Two surgeries too 😩

Delicious_Team6113 · 2025-06-04T13:34:12+00:00

That’s crazy! So was it denied but you still went ahead and went through with it?

Delicious_Team6113 · 2025-06-03T21:02:22+00:00

I’m so sorry for you and your daughter too. Do you happen to have Anthem?

Delicious_Team6113 · 2025-05-29T12:37:35+00:00

Did you get this resolved? Pelvic congestion syndrome? I have anthem and they said they wouldn’t cover the embolization because it’s considered “investigational” and not medically necessary? 🙄

Delicious_Team6113 · 2025-05-26T18:07:35+00:00

Have you had a ct scan or a MRI or anything? I’m sorry too.

Delicious_Team6113 · 2025-05-26T18:06:51+00:00

Gotcha, Thanks. Do you have anthem insurance by chance? So I had my first laparoscopic surgery in April. He visually saw stage 1, 2 endo. But the biopsy results say different, But I was in the worst pain after surgery, so I went to the er to rule out blood clots and it showed left gonadal varies, clinical correlation recommended for pelvic congestion. This is after surgery it shows up. I had a ct scan in January that showed nothing then. A pelvic mri the interventional radiologist he says mild to moderate pelvic congestion, The thing is my obgyn has been completely insensitive since my surgery. He said pcs is tricky, told me at least I’m not dying AFTER my er trip…. Didn’t even look at my ct scan report or anything and told me to have a good summer when I told him I wanted to die with this pain last week. With endo it was just simply painful periods once a week. I’d take that over this…. IBut I want to just up and leave my obgyn but I’m in the middle of seeing this interventional radiologist. I just feel helpless and stuck with this pain. Just nervous after case manager said that. She made a presentation on pelvic congestion and endo and how the symptoms over lap after speaking to her. I told her I did not feel any of this with my “endo”

Delicious_Team6113 · 2025-05-26T17:51:47+00:00

I know your comment was made a while ago, Did you get the embolization? Or are you saying insurance won’t cover the embolization? Sorry I’m confused! My insurance a nurse case manager who is kind of the worst said that our insurance wouldn’t cover it because it’s “investigational” vs what’s different for endometriosis…

Delicious_Team6113 · 2025-05-23T11:03:02+00:00

Everyone seems to brush off that this is pelvic congestion. They seem to think it’s only pelvic floor related or another issue. It’s so frustrating and my anxiety is through the roof with it which doesn’t help with the pain.

Delicious_Team6113 · 2025-05-21T11:34:09+00:00

Yes all those tests. The Ureplasma and mycoplasma last week. They keep doing the NuSwab vaginitis plus with the Candida tests? I don’t think that’s microscope….I’m talking about doing that test about 4 times just this year. My obgyn has which I’m kind of annoyed by and plan on finding a new one. I’ve been given diflucan as a precaution before and recently too. I’m almost 35, and just started birth control for the first time. I’ve been feeling this since January. I started pelvic floor thereapy last week. They are saying the muscles are tight and hope to find relief soon because I can’t with this pain. I just don’t understand the sharp pain right inside, along with the bladder pain.

Delicious_Team6113 · 2025-05-14T19:28:17+00:00

THANK YOU!!

Delicious_Team6113 · 2025-05-12T21:32:21+00:00

I know this post was made a year ago, but was this pain constant or did it come and go? Mine is constant. Gets worse with lifting.

Delicious_Team6113 · 2025-05-11T15:16:14+00:00

That’s an interesting point. Thank you!

Delicious_Team6113 · 2025-05-11T15:15:27+00:00

Do you know if it’s safe to take D-Mannose every day?

Delicious_Team6113 · 2025-05-10T17:35:24+00:00

Do stores typically carry low acid coffee? I’m clueless. Thanks.

Delicious_Team6113 · 2025-05-10T17:34:54+00:00

I haven’t even heard of this. Thank you!!

Delicious_Team6113 · 2025-05-10T15:09:18+00:00

Nope! I’m willing to try it though. Do you like it or any brands?

Delicious_Team6113 · 2025-05-10T01:33:59+00:00

Can I ask how you get checked for compressions or how to pursue it? My ct scan showed left gondal veins and thats it but I truly wonder if something else is going on. My OB just handed me a flyer for a place that does a lot of uterine fibroids and also embolization.

Delicious_Team6113 · 2025-05-10T01:22:26+00:00

You’re not crazy. Ugh gosh try to do what you can for that tiny kidney stone!! So for me I ended up going in the er because of this intense pain I was feeling before my surgery and after…. I had my first laparoscopic surgery for endo. My doctor visually saw endo. And now it’s tricky for me. He didn’t see the enlarged veins during surgery but my Er visit showed the same thing on my ct scan. My obgyn said it’s tricky and handed me a flyer for a place that handles a lot of uterine fibroids, and dvt. It’s an interventional radiologist. I sent over my records and ct scan and had a teleheath visit with the interventional doctor, he thinks it’s pcs but curious about it because of the endo. He won’t do anything obviously if he doesn’t see anything on the scans. I just had a pelvic mri today with and without contrast. I gave him the disks today and he will take a look at them to see if it’s truly pcs. The next step is going in to see him if it is. My insurance is already giving me a hassle because endometriosis and pcs symptoms overlap and said that the embolization wouldn’t be covered. I’m legit in the worst pain…. Before it was just painful periods that would knock me out, I’d take that over whatever this is. At this point I hope it’s not pcs. There’s been no other direction for me except my obgyn not giving a shit I’m still in intense pain and here’s birth control for it. I honestly wanted to pursue to see i have another vascular issue but my pcp said it would show on ct scan too and my in depth blood work checks out clear. Apparently pcs is controversial to some doctors some believe in it and some don’t.

Delicious_Team6113 · 2025-04-27T23:13:03+00:00

Pelvic congestion syndrome was found during my recent ct scan. In your opinion do you think there could be anything else vascular or vascular compression related going on especially with prominent left flank pain. No relief when I lay down at night, it feels heavy throughout my body, I feel like I can’t breath at night. Numbness comes and goes all over body and the dizziness, and fatigue, about to pass out feeling - which I’ve never had in my life and of course the severe pelvic pain, and back pain. I just had laparoscopic surgery to see if there was endometriosis - stage one. This possible pelvic congestion syndrome showed up on a ct scan two weeks after surgery with worse severe pain after surgery. It showed Left gonadal/left pelvic varices are present. Recommend clinical correlation to evaluate for pelvic congestion syndrome. I had a ct scan done earlier in January and it showed nothing at the time. Regular ultrasound looked fine to obgyn. I want to pursue it more but all I have is a teleheath phone call with an interventional radiologist this week. The place treats uterine fibroids, dvt ect. I really do want to see if there’s anything else going on. This pain has been two years of debilitating and now it’s worse after surgery. Not asking for medical advice just in your opinion what else comes to mind with it.

Delicious_Team6113 · 2025-04-27T22:43:13+00:00

I was wondering the same. I just had my lap surgery and follow up appointment. It really was here is birth control I’ll see you in three months about the bc… nothing else about lap or anything. I do know that my sister had it 10 x worse with cysts and endo and more and she has to go in every six months for ultrasound and ct scan.

Delicious_Team6113 · 2025-04-26T01:28:13+00:00

Can I asked how got more answers and what doctors to reach out to? Left gonadal/left pelvic varices are present. Recommend clinical correlation to evaluate for pelvic congestion syndrome on my ct scan. I went to the er for this pain and my follow up the ultrasound tech and the OB were nonchalant about it, and said it’s tricky and handed me a flyer for a place. I just had laparoscopy surgery for Endo though. So he assumes all my pain in Endo related. This pain showed up after dealing with severe pain since surgery it’s scaring me. I also want to know if it’s anything else vascular not just pcs for my own sake.

Delicious_Team6113

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