Invisible Disabilities Week; Chronic Pelvic Pain Awareness

Content Warning: This blog post talks about taboo things. If you do not wish to read about blood, periods, surgery, I suggest you do not read on.

The first thing people hear when they hear “Chronic Pelvic Pain” is period pain. It’s always the way. You tell people you’re getting cramps, pains down there, nausea and you have a womb? Simple, it’s your period. But that just simply isn’t the case.

Chronic Pelvic Pain (CPP) is the final diagnosis of why a woman a woman is experiencing severe pain from her lower region. This pain usually has to last over 6 months to be given an actual diagnosis or for doctors to take seriously. Firstly it starts with trying birth control and pain killers. Then it’s blood tests, scans etc, and finally it ends with a laparascopy. A laparascopy is used to see if there is anything invasive such as cysts, fibroids, endometriosis etc. And finally when doctors don’t have an answer for now, they are diagnosed with CPP.

I have had Interstitial Cystitis/Painful Bladder Syndrome (IC/PBS) for 17 years. IC/PBS is a syndrome of the bladder that causes pain, frequency, urgency, bloating. I also have non-relaxing pelvic foor, which is related to my pelvic pain. I have problems with anxiety and stress, which cause my pelvic floor to be tight, which then causes my bladder and pelvic pain. I was originally diagnosed with a cystoscopy way back in probably 1999. A cystoscopy is where they put a camera up the urethra to see the bladder lining. I do not have traditional IC with severe bladder wall injury. Rather I have a pain disorder that involves the pelvic floor and bladder. Having a cystoscopy is not the funnest test. It’s uncomfortable and painful, and then afterward you end up peeing out the gel they use to coat the scope. I found that the most painful part, because the numbing gel has usually worn off.” – Helena Spears Yoga

I experienced all this first hand, enduring a dreadful laparascopy. After a laparascopy, the gynaecologists, expect you to just give up, take the painkillers they offer and be discharged. But this is something you should never do! The most pain people with a pelvic condition get, is when they are on their period or ovulating. Did you know your periods are abnormal if you experience pain? Even the slightest bit of pain is abnormal. This doesn’t mean you should be on the surgical table right away, it just means you need something to help regulate your periods, or even so it could be something worse of, but it can be copable for now. 

After not receiving a diagnosis, I never gave up. I continued to press my doctors to take me seriously. I was living in agony every day, just trying to get an answer as to why my friends had perfect periods, and I was missing college due to cramps, vomiting, fainting and more.

Finally in 2017, I was diagnosed with Chronic Pelvic Pain by a specialist. They said another laparascopy would be too much for me, considering my last one didn’t go so well, and to start a pain management programme, when I’m ready. 

“[Diagnosed with Endometriosis in her 20s] Pelvic pain got worse in pregnancy with my second child when I went into early labor at about 20 weeks. Medication and couch rest for the second half of the pregnancy worked and I delivered my child vaginally only five days before the due date. However, my perineum tore quite a bit. One day in early 2008 I was so depressed I told my husband I didn’t feel like living anymore.He said we would find help for me and that money was no object.I asked my general practitioner and my chiropractor what they called my pain. They both said it was myofascial pain. By this time the internet was well-established, unlike when my pain became chronic in 1981. I did an internet search on myofascial pain and found a local physical therapist who specialized in myofascial release. My insurance didn’t cover it so I paid out-of-pocket. This physical therapist treated the whole body, not just the pelvic floor. It helped. I have much compassion for other women who are stuck in pelvic pain and I wanted to share my success with them. I thought, if I could feel better and get my life back after over 28 years of being stuck in pain, other women could too! Now I’m a mind-body coach helping other women to heal their pelvic pain. I found that the secret to healing pelvic pain is a multifaceted approach which includes the right kind of physical therapy.” – Gail Kenny; Healing Breakthrough

Advice I’d give to anyone going through a pelvic condition diagnosis:

  • Be prepared for a battle. It isn’t easy for most. For some, it takes over 10 years to get an official diagnosis for any of them. It took me 4 years to get a name to my pain, and help in baring with it. Never go in thinking you’ll be cured, because they can’t be.
  • Never settle for what others say. Even those who have gone through this experience, are not always right. People are always begging for a competition, but it’s not always the way. For example in Endometriosis patients, someone could have a mild amount of adhesions, but be in excrutiating pain. Whereas someone with a lot of adhesions, could have no pain at all. Don’t compare, and always go with your gut.
  • Find what works well for you. If wearing loose pants, taking painkillers 4 times a day works for you, stick with it! If it doesn’t work, go to the doctors and try and find something new for you. I started off trying all sorts of birth control, but my body constantly rejected it. In the end, I found some mental health services, physio therapy and comfy clothing has me at ease. Sometimes the pain is too bad to move, but I now have more good days.
  • You are not alone. There are over 30 million people suffering with pelvic conditions. The average is 1 in 10 people, so look around the room you’re in right now, the likelihood of someone in there having a pelvic condition is very high. Join communities, listen to stories, ask advice. These women (or men for CPP) will be your shoulder to cry on, or lean on!

One thought on “Invisible Disabilities Week; Chronic Pelvic Pain Awareness

  1. What a great post! It is definitely true that some doctors don’t take their patients seriously. If you want to figure out the truth you definitely need to be relentless! I can think of various reasons for this, and one of those reasons is definitely limited research and attention given to a particular condition. That’s why post like this one that spread awareness are som important! Thankyou for sharing! I learned something new!

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