What’s one of the worst things you an do to a hollow organ? Millions can attest to how painful a very full bladder can feel, especially on long car rides when bathrooms are few and far between. Thus, it is ironic that patients with bladder disease often must undergo a hydrodistention with cystoscopy to allow a physician to closely examine their bladder and, in some cases, provide direct treatment. Yes, just like it sounds, it can be an uncomfortable procedure and is usually done as an outpatient procedure and under general anesthesia.
In 2022, hydrodistentions with cystoscopy are no longer recommended to diagnose IC/BPS in the USA though it is encouraged if the diagnosis is in doubt.(1) Allowing a physician a chance to look inside the bladder can help identify Hunner’s lesions, bladder stones, cancer and/or eroded vaginal mesh. It can also be used therapeutically in patients who do not respond to oral therapies or bladder instillations. Studies show that it provided relief of symptoms for 30 to 54% of patients though the results are not usually long-term.
I had my own first hydrodistention at age 5, then again at 13, 23 and 33. Some patients find relief and others report worsened symptoms. I’ve experienced both. The hydro I had at 13 seemed to be at least in part responsible for a lengthy remission throughout high school and most of college. The hydro I had at 23 made everything feel so much worse for 4 to 6 weeks before finally calming back down to “normal pain.”
Deciding whether to have a hydrodistention is a serious medical decision you and your doctor should make together. The technique used is important. In the “old days”, urologists often used a “high-pressure, long-duration” procedure that often resulted in intense pain and, for an unfortunate few, bladder rupture. Since 2011, the AUA has recommended a much less traumatic “low-pressure (60 to 80 cm water), short duration (under 10 minutes)” method.(1) As a result, the procedure is much less traumatic and, for some, helpful.
If you have a hydrodistention coming up, we’ve got you covered with some of the best non-medical tips to help you in your hydrodistention post-op days. Along with following the directions from your medical providers, these tips can help make your recovery a bit easier. And even if you aren’t undergoing a hydro, consider these tips for helping during times of flare as well!
1. Talk with your doctor about the pros, cons, risks vs. benefits
- The AUA specifically excludes the use of high pressure, long duration methods because of their well known risk of bladder rupture and damage. Ask your doctor if they will be using a low pressure method. Be specific. How much water will they use and how long will they keep it in your bladder? AUA recommends just 6o to 80cm held for only ten minutes.
- Ask your doctor if they have experienced any bladder injuries, ruptures or serious side effects? If yes, what did they do about it? Were they successful in treating them?
- Ask your doctor how they intend to treat Hunner’s lesions if they find them. If your doctor has no plans, ask why? The latest AUA guidelines strongly suggest that Hunner’s lesions be treated at that time with fulguration or steroid injection.
- Ask your doctor about pain care. Some patients come out of the procedure with low pain which they can treat with OTC analgesics. Others, may require the use of a stronger medication (i.e. norco) for several days afterwards. Will your doctor provide pain care, if necessary.
- Ask your doctor who you should call if your symptoms worsen and/or you develop a fever following the procedure. Post operative bladder infections can occur and require prompt care.
- Ask your doctor if they will take pictures and/or video of your bladder that you can keep in your medical files. It’s very helpful for patients to see their bladder wall for future reference and makes great evidence for a disability applications.
2. Prepare ahead of time.
Do what you can before your hydrodistention to plan for your comfort afterward. When you come home after your procedure, you will be so glad to have everything ready. Plan to take at least two days off of your regular schedule. (More may be needed, but everyone needs the day of and day after off.) Some patients feel better relatively quickly after hydrodistentions, while others don’t. Either way, you will need time for your body to recover from the procedure and the general anesthesia.
If possible, make sure your household tasks are up-to-date, so you don’t have to worry about laundry, dishes or other cleaning.
3. Get comfy.
Decide ahead of time where you want to rest post-hydro and make sure that spot is all set up and ready to go. If you’re going to be on your couch, have blankets, a pillow and your heating pad nearby. If you’re going to rest in bed, make sure your bedding is clean and your heating pad is nearby. You’ll also want to wear comfortable clothes. Wash your favorite PJs or comfy clothes and have them ready to go. Lay out the clothes you want to put on afterward so they are ready for you when you get home.
4. Ask for help.
Other than needing someone to at least drive you home after your hydrodistention, you will need help afterward. Usually you leave the surgery center with a prescription for a pain medicine and often an antibiotic to prevent infection and/or an anti-nausea medication. Having someone else who can get those filled for you is necessary. You’ll also need help with other things. Standing to prepare food is difficult for the first day or two. Ask a family member or friend for help.
If you have young children, be sure to have someone who can babysit for them the day of and day after your procedure so you can recover. Make sure someone can help with any pets you have as well.
5. Have the food and drinks you need.
Post-hydrodistention is not the time to eat or drink risky foods or beverages. Be sure to have snacks and drinks on hand that are IC friendly. Check out the ICN Food List to find out what is usually bladder friendly if you aren’t sure. You’ll definitely want to make sure you have plenty of water. (I love using stainless steel, insulated tumblers filled with lots of ice to keep my water cold for hours.) You might feel a bit queasy from the anesthesia or pain meds, so having some soup crackers on hand is a good idea.
Other easy food ideas that are usually IC friendly include the following:
- mozzarella string cheese sticks
- bread and butter for toast (or plain)
- plain potato chips
- sugar cookies
- cottage cheese
- plain bagels with plain cream cheese
- eggs to cook scrambled in the microwave
- vanilla ice cream
- blueberry muffins
- lightly salted peanuts, almonds or cashews
- homemade chicken noodle soup (Prepare it ahead of time and refrigerate or freeze it.)
6. Refill your usual medications.
You’ll also want to make sure you have enough of your usual medications for your bladder and any other health conditions you may have. A week before your hydrodistention, check your medicine supply and order any needed refills so you won’t have to worry about that as you recover. Using a pill organizer is incredibly helpful and easy to make sure you take what you need to when you need to.
7. Keep yourself entertained.
One great pain management tool is distraction. Have some movies, television shows and/or books in mind before your hydro to keep you entertained afterward. I have found during my worst pain times that if I turn on an episode of a show I have watched many times before (for me, it’s “Golden Girls”), then it can distract me but also allow me to rest and eventually sleep since I know what’s going to happen in the show and don’t need to try and stay awake. The day of your hydro, you’ll probably be too sleepy to pay much attention to a movie or show, so go for something low-key or that you’ve already seen. Then have other things in mind for when you are more awake but still needing to rest over the following couple of days.
8. Use a heating pad
Sometimes a warm heating pad can help relax your pelvic floor muscles and symptoms after a hydrodistention or during an IC flare.(1) If you have trouble urinating post-hydro, you can even try doing so in a warm bath.
9. Use cool water when you urinate.
Often after a hydrodistention you’ll have burning pain when you urinate. This lasts longer for some than others. One way to alleviate some of that burn just a bit is to spray cool water between your legs as you urinate. A perineal wash bottle works well for this, but you can also use a cup if you don’t have one. If the burning continues after you urinate, consider using an ice pack between your legs for about 15 to 20 minutes to help alleviate some of the discomfort.
10. Connect with others.
Pain can feel very isolating. It is physically isolating in that you are stuck at home unable to go anywhere. But, don’t forget as you recover that you can use this time to connect with those you love. Once you’re feeling a bit better, invite other members of your household to watch a movie with you. Go onto the ICN patient forum and talk with other patients who can commiserate with you. Remind yourself (and maybe ask a loved one to gently remind you, too) that you won’t feel like this forever. It will get better!
- Clemens JQ, Erickson DR, Varela NP et al: Diagnosis and treatment of interstitial cystitis/bladder pain syndrome. J Urol 2022; https://doi.org/10.1097/JU.0000000000002756.
- Evans RJ. 7 Ways to Help Control Interstitial Cystitis Symptoms. Urology Care Foundation. Nov. 28, 2016.