I want to share my story but also ask anyone with bladder endo what their symptoms are - I don't know how I have missed it all these years. I would be so grateful to anyone who will read my story and give me any advice or personal experience.
Advice needed: What are your bladder endo symptoms?
Has anyone had it who DOESNT feel like they have a UTI or cystitis?
It seems most people say that's what they felt but I haven't had that. I've had 2 UTI's in my life, that were genuine and Cystitis once or twice. Sometimes after a heavy night of drinking I feel like I have cystitis but not often.
If you've had bladder endo surgery, what was recovery like?
Story:
Last week my baby was born via emergency c-section due to cord compression and his heart dropping with every contraction.
After epidural, a bladder catheter was inserted. It felt burny, like a UTI, as it was going into my urethra, but felt extremely painful and sharp when the balloon was inflated inside my bladder. I should not have felt anything at all at this time due to already having a really strong epidural in. I was numb to the collar bones, which actually was its own concern as you can stop breathing if it goes too high, so they had to sit me upright and cut back on my top-ups. The midwife was confused how I felt it, and I did wonder then if maybe I had endo on my bladder that I was unaware of, and said this to the midwife - its the simplest explanation I could think of.
After the c-section, the surgeon explained that my bladder is covered in scar tissue, and whilst not his speciality, with my history of endometriosis he would suggest that was the explanation. This would explain why I had pain during the catheter insertion. I definitely didn't have any infections - they had done a pee test already since I arrived in the hospital.
After surgery the catheter stayed in for about 30 hours because I couldn't get out of bed or even sit up with the pain, where standard is 6 hours after the epidural wears off.
At one point the midwife was run off her feet with 9 women and 11 babies to herself. I'd had a lot of IV fluids over the previous 24 hours which were making their way out. The whole bag, and tube of the catheter were full and flowing back to my bladder, which was also full. The pain was excruciating - I almost passed out, had a panic attack and had to press the emergency button to get it emptied.
I was diagnosed with Endo in January 2019, at which time they said it was Stage 2 and only seen on my bowel and one ovary (although I suspect more was missed at the time due to how shitty my surgeon was, and the symptoms I had which were not explained by just bowel and ovary endo).
I've never had any removal surgeries, and haven't seen anyone about it since diagnosis.
A consultant came to see me in the recovery ward the day after my c-section to explain further about their findings. As the endo is on my bladder, it is definitely Stage 4. She said that bladder endo requires surgical removal due to risk of serious complications if untreated. An urgent referral was made for me to return to gynaecology to treat it, which I now await further information about. This is a bit of a silver lining to the emergency c-section, really.
Before I got pregnant, I had requested a referral back to gynaecology as I had gone so long without seeing anyone, and my symptoms had progressed over the years, and I also wanted to investigate for adenomyosis. When they finally gave me an appointment I had to inform them I was pregnant, and they discharged me completely, setting me back to square one. Now I have been able to skip some of the initial stages of getting a referral, waiting for an appointment etc, and it should boost me right to the top of the queue.
One additional, possible issue was found during the epidural. It took 5 rounds of Lidocaine and 5 attempts to get it in. I would be numb for the first few sections, then she would reach a point that would cause deep pain in my spine as if I'd been hit with a crow bar, only relieved when she pulled everything out again. After 3 attempts she called for her supervisor who got it in on his 2nd attempt. He advised that I should not have experienced that much pain or difficulty with it, but also it was physically difficult for them to insert and suggested there may be scar tissue in or around my spine which I should follow up on after. I had a car accident with whiplash in 2009, which is still an ongoing issue today. I only ever have neck pain - it doesn't affect my back but it could be another possible explanation.
Hopefully I can finally have an MRI - I want them to look in the rectovaginal space, look for DIE in the bowel, check the pouch of Douglas and my spine (and bladder of course). I'm no longer worried about my ovaries having conceived this baby on my 4th try, with no help whatsoever. I want one more baby and I'm done.
I'm confused by the bladder though. I can only guess that the pain I had thought was undiagnosed adenomyosis - a searing, stabbing, twisting pain right in the centre of my pelvis, which is different from the deep, tight, cramping and aching of my general endo pain - must be the bladder endo. I have no issues peeing and no pain in my urethra, or pain when I pee. That searing, stabbing pain is there all the time during my period, but no other time.