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An abstract inside look at the body, with the uterus holding hands with the bladder, and neither of them happy about it and sadly looking in opposite directions (while silhouettes of the other organs float in the background).

Endometriosis and Bladder Issues

Endometriosis can cause all sorts of problems and wreak havoc on a lot of our organs. But sometimes, symptoms we are experiencing can be due to other underlying causes wreaking havoc as well. It is common for these causes to be misdiagnosed too. If you are experiencing bladder pain or discomfort, there is a good chance it is more than just endometriosis bothering you.

Interstitial cystitis

Interstitial cystitis is known to be endometriosis’ evil twin. For the most part, the symptoms of IC are identical to endometriosis. Symptoms can vary from pelvic pain to urinary frequency/urgency. You may also experience pain with intercourse, blood in urine and back pain. Some studies have shown that 80-90% of women with endometriosis also had interstitial cystitis.1 This can be a big factor as to why many find no relief from pain after receiving surgery or other treatments.

My bladder struggle

Over these last few months, I have noticed a lot of pain and discomfort with my bladder – More so than usual. The urge to urinate is strong and I never feel emptied after I go. This discomfort landed me in Urgent Care. They diagnosed me with a UTI. I figured that diagnosis was accurate as I have been prone to them all my life. Until they called me the next day saying my urine sample came back negative for bacteria. Right then and there, I knew something more was going on. But if it wasn’t a UTI, what could it be?

When I spoke to my endometriosis specialist about this, he said it is very common for women who have very low estrogen to experience IC and even frequent UTI’s. It made sense, especially when they antibiotics they kept prescribing me were not helping.

My doctor decided to start me on a very low dose of estrogen. It is a tiny pill that you insert vaginally twice a day. As women, we naturally produce estrogen. However, too much estrogen can be bad for endometriosis, allowing it to feed and grow, and not enough can cause these symptoms like IC.2 Unfortunately, I seemed to seesaw back and forth between low and high. So I was very hesitant at first to give this medication a try.

I have been taking this low dose for a few weeks now and all though I haven’t seen a change in any other symptoms I experience, I can 100% say I see a change in my bladder pressure/urgency. It is not as frequent and is not as severe as it has been these last 3 months. Thankfully, they are also monitoring my estrogen levels to make sure they do not shoot too high. Because the pill is helping with my bladder, my doctor does believe I have IC. However, there are other ways you can officially diagnose IC.

Diagnosing interstitial cystitis

I have spoke to a lot of other endo sufferers with bladder issues, who all originally led me to look into IC. Because endo and IC go hand in hand, I knew it was important to investigate if that was what I was dealing with. Diagnosing IC can be difficult for some though. Sometimes women with IC may have very mild symptoms. Also, many times, gynecologists and urologists can misdiagnose or ignore the fact that you may be dealing with IC. It is important that if you are having bladder issues, you see an endometriosis specialist or pelvic pain specialist instead. You may find a doctor who will want to check your estrogen/try you on low estrogen like myself. Or, you may find a doctor who would like to preform a procedure. Here are two ways doctors can help you diagnose IC.

  • Cystoscopy: This is where they insert a camera into your bladder. You are asleep for this procedure. The bladder is overdistended with fluid to allow the camera to look around. They can take a biopsy while in there as well.
  • Potassium Sensitivity Test: You are awake for this one. They place a catheter in the bladder and release a small amount of water into the bladder. The water is then drained and they add a new solution into the bladder containing potassium. Those without IC will not respond to this. Those who do have IC will experience pain and discomfort. If there is any sort of pain being felt, they do immediately try to numb it for you.

Treatments

Diet, just like with everything else, can be so helpful in dealing with pain and urgency. I began to notice which foods started causing the pressure and pain and started to rule them out. Foods high in potassium can be a huge culprit. Tomatoes, chocolate and pineapples just to name a few. Diet along with my estrogen pills, have really helped keep my IC symptoms at bay. It has been so much more tolerable. I found this little chart of IC-friendly foods to be helpful. Unfortunately, some things that are IC-friendly are not endometriosis-friendly. So, it takes a lot of trial and error. Just be sure to document everything you eat and when you start to feel symptoms.

If bladder symptoms are something you are dealing with, you should definitely talk with your doctor. You may even want to start eliminating any foods that may be causing these symptoms to feel worse, just to see if it helps. Of course, consult with your doctor before trying anything new. Like I stated early, sometimes symptoms we are experiencing can be due to any underlying cause.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Endometriosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

  1. Chung MK, Chung RP, Gordon D. Interstitial cystitis and endometriosis in patients with chronic pelvic pain: The "Evil Twins" syndrome. JSLS. 2005;9(1):25-29. https://www.ncbi.nlm.nih.gov/pubmed/15791965. Accessed September 29, 2019.
  2. Kuruvilla H. Interstitial Cystitis: The Estrogen Connection. In: ; 4AD. https://digitalcommons.cedarville.edu/cgi/viewcontent.cgi?article=1244&context=research_scholarship_symposium. Accessed September 29, 2019.

Comments

  • brimmtaylor
    1 week ago

    I too had doctors tell me I had UTI despite the test results coming back negative – and they still prescribed antibiotics. However, my endo surgeon found in the surgery that the endometriosis tissue had invaded my bladder and that was what had been causing my symptoms, which were very similar to the ones you describe here. After my surgery where this tissue was removed, I no longer experience these symptoms! Sometimes it’s not IC either!

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