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Hi! I'm Jessica

I'm a writer, podcaster and mentor empowering others to live and thrive with endometriosis.

The Link Between Endometriosis and Interstitial Cystitis

The Link Between Endometriosis and Interstitial Cystitis

 A series of pathology images showing interstitial cystitis from Research Gate

A series of pathology images showing interstitial cystitis from Research Gate

What is Interstitial Cystitis?

Interstitial Cystitis is a chronic bladder condition which often sets in around 30/40 years of age and more commonly affects women.

This is my personal opinion, but I believe there is a reasonable percentage of younger people who are going undiagnosed with interstitial cystitis, especially young girls and women. I have every symptom and have always been met with doctors who can't give me an answer, and have never queried this condition. It was only when I interviewed Heather of Yum Universe for the podcast, that I discovered what interstitial cystitis was and how my symptoms matched up perfectly. Since then, I've had chats with so many young women who have been diagnosed with IC or are suffering similar issues. Giving that women's pain is taken less seriously than men -  women are  “more likely to be treated less aggressively in their initial encounters with the health-care system until they ‘prove that they are as sick as male patients,’” - it seems likely that there are women across the globe suffering in silence. 

The condition is, like endometriosis, poorly understood. As far as we know, it is not caused by an infection and does not respond to antibiotics, but could be linked to inflammation. Theories include:

From the NHS:

  • damage to the bladder lining, which may mean urine can irritate the bladder and surrounding muscles and nerves
  • blisters lining the bladder wall, which become sore and irritated by the acid in urine
  • a problem with the pelvic floor muscles (used to control urination)
  • the immune system mistakenly attacking your bladder
  • an allergic reaction
  • a symptom of other chronic illnesses such as fribromyalgia, chronic fatigue syndrome (CFS)irritable bowel syndrome (IBS) and lupus.

From the Urology Care Foundation:

  • A specific type of inflammatory cell, called a mast cell. This cell release histamine and other chemicals that lead to IC/IBS symptoms.
  • Something in the urine that damages the bladder.
  • Changes in the nerves that carry bladder sensations so pain is caused by events that are not normally painful (such as bladder filling).

What are the Symptoms of Interstitial Cystitis?

Interstitial cystitis can cause symptoms which could be mistaken for endometriosis if you have it, or bladder infections, etc. The symptoms are:

  • Pressure in the bladder, especially as it begins to fill
  • Pain in the bladder, again, especially when it begins to fill
  • Needing to pass urine more frequently than 'normal', which is about 7 times a day according to the Urology Care Foundation I go about 20 times a day, and have said this to the doctors for over a decade, and all I get is a diabetes test...
  • Urgency can also be a symptom, which can manifest as needing to urinate more urgently than usual or feeling like you still need to go, even after just going to the toilet. Story of my life.
  • Pain during sex (the bladder is in front of the vagina). I also suspect needing to urinate during sex/because of sex may be a less recognised symptom (this is purely from my own experience).
  • Chronic pelvic pain or pain between the vagina and anus.
  • Strong, (sharp in my experience), pain radiating from just below the belly button.
  • Pain and symptoms can worsen during menstruation (for me, it's the bladder pain that first indicates I'm about to come on)

How is Interstitial Cystitis Diagnosed and Treated?

Generally, interstitial cystitis is diagnosed via a cystoscopy. A cystoscopy is when a small camera is inserted up the urethra, and the area is numbed with a local anaesthetic gel. I haven't been diagnosed yet (though I strongly, strongly suspect I do have IC), because I've been freaking out about having that done, but actually, I've had a catheter put it and it wasn't that bad (well it was because I'd broken everything in the pelvic area at the time, but the catheter bit wasn't painful), plus I didn't realise they numb the area. I'm now going to go to my doctor and ask for a cystocopy so I can know what I'm dealing with and take the right action to support my body.

There is no known cure for interstitial cystitis and there are numerous treatments that aren't yet proven to be wholly effective. Because there are so many, I've decided to provide the direct link to the NHS page that describes the treatment. You can find the information here and you just need to scroll down towards the end of the page, as it's the last section.

Food and drink can affect the condition, because they may cause urine to become more acidic, which is the case with tomatoes, alcohol and caffeine. Since cutting down on all of these (I rarely drink, say every 3 - 4 months, but I always wake up with bladder pain after drinking), I have had personally had such a huge change in bladder pain that most days and nights it's not there.

In addition to this, when I have had a tomato based pasta or have had a some caffeine, if the pain does kick in (which I can say now I understand the pattern, it definitely does), I drink bicarbonate of soda mixed with water, as recommended by Heather Crosby in our interview. Bicarbonate of soda lowers the pH in our urine and so helps stop the burning.

What is the Link Between Endometriosis and Interstitial Cystitis?

I thought at this point it would be most useful to quote research, but the figures are overwhelming and indicate that yes, there is definitely a link, and we need to be investigating them both together...

"It is unknown how many undiagnosed cases of interstitial cystitis may be present in the gynaecologic pelvic pain population, but newer data shows the prevalence may be as high as 25% of women. Some studies have shown a link with endometriosis, and IC has been labeled as “The Evil Twin”. 80-90% of women with endometriosis have been identified with IC. This may help explain why some patients treated for endometriosis have not had relief from pain after surgical and medical therapies." - Endometriosis.org

"Because endometriosis patients often have bladder complaints, and IC patients often have vague, diffuse, menstrual-related pelvic pain, some physicians argue that women who present with undiagnosed pelvic pain should be investigated for both IC and endometriosis. Chung and colleagues called these 2 conditions "the evil twins" of CPP after their study of 56 women with endometriosis identified 54 with IC.

"It is absolutely necessary to perform both laparoscopic and cystoscopic examinations concurrently with the patient anesthetized in the initial evaluation and treatment of CPP syndrome to avoid unnecessary delay in making the diagnosis of the evil twins, because CPP syndrome can be caused by either or both of these entities," they recommend.

"In addition, Lentz and coworkers recommend that "diagnostic laparoscopy should be considered together with hydrodistension of the bladder for women with pelvic pain and irritative bladder symptoms that are exacerbated premenstrually." In their study, 15 women with these conditions underwent laparoscopy followed immediately by cystoscopy. Ten patients (67%) had findings of both IC and peritoneal endometriosis, and the other 5 patients (33%) had IC but no endometriosis." - Medscape

More research and information:

The Relationship Between Interstitial Cystitis and Endometriosis in Patients With Chronic Pelvic Pain

MIS for Women

So that's it for now, if I find any more information I'll let you know. And when I finally get myself down to the doctors and start this process, I'll write up my experience. In the mean time, I hope this helps. x

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