My experience with Interstitial Cystitis (Painful Bladder Syndrome)

I want to start this by saying that I am not a medical professional, just someone who has been unfortunate enough to deal with those symptoms. This is my personal experience of receiving a misdiagnosis for endometriosis until I finally got help for interstitial cystitis.

My journey with chronic pain started almost 7 years ago. I started having intense pelvic pain and a horrible, persistent urge to urinate. I would use the bathroom only to feel the urge to go again 5 minutes later and a terrible pain if I couldn’t. I literally felt my insides burn. The nights were always the worst because that’s when my symptoms manifested more severely. I couldn’t sleep and if I did manage to fall asleep, I would only wake up 2 hours later with the urge to urinate and a stinging pain in my bladder.

How many times do you usually go to the bathroom? A healthy person might urinate from 4 to 10 times a day, more or less…Well, I needed to urinate around 35 times within a day.

It sounds like a bad case of UTI (Urinary Tract Infection), right? That’s what I thought too. I had several tests for UTI, STDs and what not. All came back negative, apart from one that showed a small possibility of UTI, but it wasn’t clear. Until the next results came in, my doctor prescribed me with antibiotics that did absolutely nothing. I ended up trying 3 different types while I was also taking painkillers every hour just to get me through the day (you see, I was also studying for finals in college back then, fun!)

Eventually, when my last UTI bacteria test came back negative, I was advised to visit a gynecologist…I was absolutely crushed and terrified. I was 19, barely had any money and had just started my first year of college.

I ended up visiting 4 different gynecologists in my home country. I know this might sound too much, but after years of following people’s stories on Reddit, 4 is not even a lot.

I was already terrified of visiting doctors, especially gynecologists, and when my first doctor said that he could not find anything, I entered complete panic mode. You see, in this whole process, the fear of not knowing exactly what you have ( I was exceptionally scared of cancer due to family history) is paralyzing.

I spent hours crying, probably feeling a bit too paranoid about what I could have until we went to see a second doctor. He said that it seems like I have endometriosis but I should get a second opinion. I followed his advice and got a second opinion from a doctor that also said it must be endometriosis.

Ultimately, my regular doctor was the fourth one I visited. He was a trusted friend of a family member and ended up being the doctor I felt the most comfortable with.

So, what is endometriosis?

It is often a painful disorder in which tissue similar to the tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus. Endometriosis most commonly involves your ovaries, fallopian tubes and the tissue lining your pelvis. Rarely, endometrial tissue may spread beyond pelvic organs.

The most common symptom of endometriosis is pelvic pain, which usually becomes more intense with menstrual periods. Those with endo experience menstrual pain that’s far worse than the usual pain.

Other common symptoms are :

  • Painful periods (dysmenorrhea). 
  • Pain during or after intercourse
  • Pain with bowel movements or urination
  • Excessive bleeding
  • Infertility

Source : https://www.mayoclinic.org/diseases-conditions/endometriosis/symptoms-causes/syc-20354656

I did all the advised tests to receive the diagnosis. Pelvic exam(s), ultrasounds and an MRI. Lastly, a laparoscopy is the only test that can fully diagnose endometriosis, but since my symptoms matched the diagnosis completely, we were convinced that it’s endo. So we agreed to consider surgery only if the other treatments didn’t work. This is very usual with endometriosis, a lot of doctors tend to recommend surgery after less invasive treatments.

After that, my treatment began. I took hormonal contraceptives for about a year. (Their continuous use may reduce or eliminate the pain.) Since they barely helped, we decided to move on with injections that contained gonadotropin-releasing hormones (Gn-RH). These drugs are aimed to prevent menstruation and thus to create an artificial menopause until you stop taking them.

This was the only thing that helped. It didn’t entirely stop the symptoms but it definitely reduced them and, along with pain medication, I started to feel a bit more in control of myself and my pain.

The side effects of both treatments were not easy to deal with. I gained around 10 kilos and suffered from insomnia for some time. The injections caused my skin to break out like crazy in the first three months. Every time I looked in the mirror, pushing back tears, I tried to reassure myself that everything was fine and that the important thing was that I was finally getting the treatment I needed.

The treatment eventually ended since these types of drugs are advised to be taken only for a short period of time. I continued with contraceptives and after a while, my partner and I moved to a different country.

My symptoms eventually came back, and for almost 2 years I somehow managed to pretend they hadn’t until I couldn’t take it anymore.

Further examinations revealed an ovarian cyst. I was given contraceptives again but to my dismay, they didn’t help at all.

Eventually, I visited another doctor who made a referral for a laparoscopy which was supposed to remove any signs of endometriosis. (Laparoscopies are usually successful, but endometriosis usually does come back after a few years)

I was so happy to finally be able to get rid of endo even though it could come back. At that point, the fear of having a surgery was almost non-existent. On the day of the surgery, I was nervous with a million things running through my head but I never would have thought that I would get the news I got.

After 6 years of horrible pain, thousands spent on treatments and doctors for endometriosis, I was told that I didn’t have it. There were no signs of endometriosis at all, just the ovarian cyst that was removed.

‘’It is not endometriosis, I am sorry’’

I felt like my world came crashing down the moment I heard that sentence. I could almost hear my blood pounding in my ears and my eyes flooded with tears. I spent years of my life in so much pain, suffering almost every day and countless sleepless nights, and I was still with no answer.

I was given a referral to the urological clinic for another examination, a cystoscopy, which was scheduled in 3 months after the surgery. Needless to say, I spent those 3 months in so much mental anguish. Most days I felt that I couldn’t breathe. I was afraid I had cancer, worried that my exams would be cancelled due to Covid restrictions, concerned about how painful the next examination would be…just overall anxious.

Last month, I had the cystoscopy (which was not as bad as it sounds!), which revealed that I don’t have cancer (no words can explain how relieved I was) and that my bladder *looks* normal.

My doctor explained that this was actually great news, as cystoscopy is done in order to eliminate a possibility of risks such as cancer or bladder stones.

After a discussion about my symptoms and treatment history, she gave me a description of how my symptoms manifest themselves, which makes so much sense….

My bladder feels like it is in a constant panic attack. If you have ever had one, then you know the feeling…as weird as it sounds, this described my symptoms perfectly.

This is called ‘’painful bladder syndrome’’ or ‘’interstitial cystitis’’.

It is a chronic condition that causes a significant amount of bladder pressure, bladder pain and sometimes pelvic pain. The pain ranges from mild discomfort to severe pain. The condition is a part of a spectrum of diseases known as painful bladder syndrome.

Imagine it like this: when the bladder is full, it expands and sends a signal to your brain through the pelvic nerves that it’s time to urinate. With interstitial cystitis, these signals get mixed up — you feel the need to urinate more often and with smaller volumes of urine than most people.

The most common symptoms are  : 

  • frequent painful urination
  • lower abdominal pain
  • low back pain
  • blood in the urine
  • cloudy urine
  • bladder/pelvic pressure

Although there is no cure, medications and therapies may offer relief.

Source  : https://www.mayoclinic.org/diseases-conditions/interstitial-cystitis/symptoms-causes/syc-20354357

I have now started medication that will help my bladder *relax* but it will take some time until I see the full effects or find the right medication for me. I still have more exams coming up but I am finally feeling a bit more hopeful.

It is challenging to come to terms with what I have, I am not going to lie. I am angry that I will always have those symptoms and I am certainly worried about how long it will take to find the right medication. All I can do now is try to manage my symptoms, be careful about any flare-ups and take it one day at a time. 

Thank you for reading my story!

 

 

Here are some websites that helped me better understand endometriosis and interstitial cystitis : 

https://www.healthline.com/health/endometriosis

https://www.nhs.uk/conditions/endometriosis/

https://www.nhs.uk/conditions/interstitial-cystitis/

https://www.urologyhealth.org/urology-a-z/i/interstitial-cystitis

https://www.healthline.com/health/bladder-pain