Thursday, January 29, 2015

My Journey with Interstitial Cystitis



Lavender was the very first oil I bought.  I was VERY skeptical and at a point when I had been dealing with the pain of Interstitial Cystitis for over a year.  I was frustrated, worn down, not sleeping through the night due to my bladder pain.  I was miserable and Doctors had very little to offer me.  I felt like a Guinna pig and at that point had been put under 4 times in the past year.  I was on a mission to heal my bladder.  INCURABLE is what they said.... live with it the rest of my life??  I felt like this was not something I could even bring myself to believe.  I HAD to keep hope!  I was determined.  I read as much as I could from others with IC.  I read countless testimonials from others that had healed using natural herbal supplements, lifestyle changes, Essential oils, etc.  I will write more in depth when I get more time.  But decided to start here with my story in hopes of helping others that might be facing the pain and frustration of Interstitial Cystitis (IC for short).

It was my birthday.  I was turning 38.

I was about a month out from my last procedure.  My urologist insisted on doing another cystoscope to rule out cancer.  You see I had several episodes of passing fleshy bloody pieces from my bladder.  My urologist vowed to help me.  When she saw my bladder she was shocked and said it was the worst she had ever seen.  She was affraid to perform the hydrodistention in fear of rupturing my bladder.  So it was not done.  Instead she took biopsies... one to rule out cancer and two to identify if I had an abundance of mast cells (which I did, consistent with interstitial cystitis)

Back to my birthday where I was desperately trying to enjoy some amount of normalcy with my husband and kids.  I was following the strict IC diet to the T with little to no relief.  That day before heading to town for my birthday dinner I decided I was going to bite the bullet and get some more herbal supplements and try an essential oil... WHY NOT I thought... if I wasted my money oh well, it was my birthday present to myself and perhaps something would help me!  I had to TRY!

So I bought a small bottle of lavendar oil at my local health store.  The price of $15 for this itty bitty bottle killed me but I just did it.  Went to my car and immediately applied the lavender to my abdomen/bladder area... I was AMAZED within minutes I felt relief of my bladder spasming.  My urgency calmed.  Dare I say I felt almost normal for a couple of hours!  That was the moment that changed everything.  My skeptical ways were gone.  I was sold!  My husband I think thought I had lost my mind! LOL.

I believe I have healed my bladder thru many, many things which I will try to write about more when I get time.  but these are them briefly

Diet (for me caffeine was my main trigger)
Pelvic PT (I did about 4 months including biofeedback, dry needles, deep tissue massage, ultrasound, TENS machine)
Balancing Hormones (I was Estrogen Dominant, low progestrone)
Herbal supplements included Marshmallow Root, Fish Oil,  magnesium, Vitamin D, quercetin, bromelain.
Excersize/Yoga
Relaxation Techniques/Deep Breathing (lavender is great for this too)
Eliminating Stressful situations and coping better with things I could not control
Bladder instills with DMSO (6 rounds)
Bladder instills with Elmiron (I only did 2 and felt like I was in remission so did not continue)
Getting of Pain Meds and Toxins
and last but not least Essential Oils!

If you would like more info please let me know.  I am now in remission about a year and have resumed eating a normal diet.  I don't take any supplements regularly anymore either.  Reintroduced coffee as well!  I now diffuse Essential oils daily in my home which I love for their effect on my mind and body.  I use lavender at the twinge of any pain.  I have found that if I get stressed my bladder will spasm and my urgency will come.  This stops once I apply the lavendar though!



Th
jjjjjjjjjj Lavender’s antibacterial, antibiotic, antiviral, antiseptic properties can only help. - See more at: http://www.doterraeveryday.com/101-uses/#sthash.aFCp1JJL.dpuf

26 comments:

  1. Thank you so much for your post about IC. I am new to using essential oils. Just looked on Pinterest for Oils to use for IC and found your blog post. I have had IC for about a year. I take Elmiron twice a day and watch what I eat. I am excited to use lavender oil for my IC. Is there any other oil you use for IC?

    ReplyDelete
  2. Hi Julie
    Yes! I gave also found cypress essential oil to Be very beneficial to the bladder and IC. Cypress eliminates pain and helps the bladder hold more longer. I now keep a roller bottle (10ml) I made with 10 drops lavender and 10 drops cypress topped off with fractionated coconut oil in my purse. Great to use on the go!! If I feel the slightest twinge, pain, urge I will run to the bathroom and roll on my bladder area. I have also recently gotten lemongrass cause several with IC say it is helpful. I have only had it a couple of weeks and have not had bladder pain (yay) to try it on. But they say it helps with pain as well. I did use the lemongrass on my neck for a pulled muscle and it was great, so I can definitely see it being effective for IC pain. Let me know if you try any of them or any other questions!

    ReplyDelete
  3. Hi curious does elmiron work? Did you have success with the coating of the bladder with medicine? I am 28 and have had IC for about 7 years. I found about it through laperoscopy. It comes and goes with pain which really eased up with having 2 babies. I just started using oils and am going to try the lavender. I am having symptoms again and have eliminated coffee and acidic drinks but nothing to serious. Maybe I need to take out more foods. Thanks for sharing your story.

    ReplyDelete
    Replies
    1. Also wanted to add I had great success with marshmallow root. They say it is the natural alternative to elmiron and supposed to help coat the mucous lining of the bladder. I started with taking capsules but then began opening the apaules and putting into my water (a bottle works great for this so you can shake it). Doesn't taste the best but you can see how it adds a coating to what it touches on the bottle and I think did the same for my bladder. I drank this marshmallow root water morning thru about 5pm and then switched to just regular water. The marshmallow root is a diuretic so can add to the frequency. Nothing more than I was already going though with the IC, definitely could tell increased volume though. It was my goto during times of retention too. Many drugs I was put on caused retention...

      Delete
  4. Hi,
    I never took elmiron orally. The side effects were a bit scary to me, and I didn't want to take the risk. Plus I didn't like the idea of having to stay on meds. I did do 6 instills with DMSO and then took about a month break and my next round of instills they mixed elmiron for my instill. I only did 2 rounds of those as my symptoms were at bay so I chose not to continue

    ReplyDelete
  5. Hi Jamie. Thanks for your post. I have severe IC with an "end-stage" bladder that "they" want to remove, but I am determined to heal naturally....had been skeptical about the essential oils, but I'll give it a try thanks to your post.

    ReplyDelete
    Replies
    1. Hi Meredith,
      Let me know if you have any questions on using them. Have you read Catherine Simone's book "along the healing path". Although I did not follow eferything in her book it was inspirational and gave me hope of healing even though Drs say it is uncurable. Have you tried any herbal supplements or other natural things yet?

      Delete
  6. Before we get to Perfect Biotics
    the list, keep in mind that the variables are nearly endless when doing these kinds of studies. You have different people trying different strains of probiotics in different environments using different forms and delivery methods.

    As such,Probiotic America what may work for one person may or may not work for another.

    But given that, there does seem to be evidence that probiotics may help, to varying degrees, with these concerns:

    Abdominal Pain
    General Immune System
    Bacterial Infections
    Lactose Intolerance



    ReplyDelete
  7. Jamie,
    I was just diagnosed today with IC and I'm still in shock. I was surfing the internet and found your post. I am a firm believer in essential oils and it has brought peace to me to know that it has worked so well for you. Your blog was the bright spot in a pretty dark day. thank you

    ReplyDelete
    Replies
    1. Glad to be a bright spot to your day! I hope you can find healing and get to remission! It IS POSSIBLE!

      Delete
  8. Has anyone had or heard of someone who has had success in using Aloe Vera Juice (not the gel) to coat the bladder?

    ReplyDelete
  9. Has anyone had or heard of someone who has had success in using Aloe Vera Juice (not the gel) to coat the bladder?

    ReplyDelete
    Replies
    1. Hey Tiffany, I have personally never used the aloe vera juice or pills but have heard of them helping some people with IC. The Dessert Harvest brand is the ones I have heard of people having success with but some get flares from them, everyone is different though may be worth trying

      Delete
  10. Jamie,

    I have had IC for about 5 years and up to 3 months ago it was mostly under control with diet. Unfortunately, in my quest to become a mom, the Clomid I was prescribed caused severe flares. I have stopped them, but the meds stayed in my system for a bit. I have been going through two months of instillation a and a couple of daily RX's. It's not that I am against medicines I just do not want to rely on them for the rest of my life. I am new to the oil scene but my sister in law is pretty involved with EO. I am feeling a lot more hopeful about the potential for relief in a natural way. I have really been struggling emotionally and physically. I appreciate your insight and your willingness to share your story! Any other tips you have would be greatly appreciated!!

    ReplyDelete
  11. Hi - I had great success with George's Aloe Juice in combination with other other herbal supplements and a strict diet :) I'm just starting to give essential oils a try after being in remission for about 7 years.

    jess

    ReplyDelete
  12. Jamie.. WOW... so happy to hear you have found a way to heal. I have had this for 10 years and my discovery story is similar to yours except that I did not have a doctor for the first 5 years. For the first 3.5 years after I was diagnosed I semi-changed my diet, took the drugs the doctors gave me; tramadol, muscle relaxers, prescription AZO, ambien (for sleep), hydrocodone and oxycodone when the pain was unbearable. 1.5 years ago I said NO MORE…
    I have now found a way to live with IC. I live on a super strict diet.. almost nothing acidic, no fruit, no gluten, very few sugars, no preservatives, no nitrates, etc.. you get the picture. I eat eggs, yogurt that I make myself, salmon, green veggies only and occasionally I have gluten free crackers (so I break my no preservative rule occasionally). I strictly drink filtered water and herbal (caffeine free) teas. I take George’s aloe and marshmallow root capsules, morning and night. That is it. This allows me to live a pain free life. If I eat one thing wrong I go straight into a full on “let’s go to the ER” flare! After 1.5 years of this I now feel unhealthy, due to the lack of fruit and general lack of variety of nutritious foods.
    I want to heal! Could you please help me understand what you actually did (or did not do) that helped you to “heal”? Not just what stopped the pain but which of the things you have done do you think promoted the healing? I just ordered several essential oils but to be honest I have no idea how to use them (just diffuse? Rub them on? Put them in tea?) but I am going to figure it out. I am now trying to go very alkaline (I have a Propur water system that neutralizes my water but I am now adding drops to make it alkaline).
    My will power is so strong (and my utter terror of more pain) that I can stick to any diet or program. So, if you could offer more of an understanding of what you think really worked, I would be forever grateful to you. I read an account from one person who said that she combined essential oils and cured herself. I have tried to contact her to see what she specifically used but have not gotten a reply. I do believe IC can be healed not just treated. I want to discover how and with help from those who have managed it, I think we can get there. Thank you so much for reading this and I would love more details from your story, not just what you did but what you really believe made the difference.
    Rhonda

    ReplyDelete
  13. Does diffusing citrus oils make IC worse? I know that taking citrus internally can, but how about in a diffuser? Any experience wit this?

    ReplyDelete
    Replies
    1. Hi Sharla,
      Diffusing citrus is great! Very uplifting!!! Also it is common misconception, but citrus oils come from the rind of the fruit.... not acidic like the fruit pulp or juice is. I use several citrus internally in my glass water bottle for the health benefits. Wild orange, lemon, grapefruit, etc... this was one thing that actually helped when I was on the restrictive IC diet. Just make sure you use a therapeutic grade oil that is labeled for internal use.

      Delete
  14. Hi did you dilute the lavender oil cause it says to never apply the oil on skin not diluted?

    ReplyDelete
    Replies
    1. Hey Jennie, Not sure what brand of essential oil you have but that can be a HUGE factor! The brand I use.... lavender and cypress are very safe to use neat... although I do dilute the majority of time cause it spreads more easily and covers a larger area... plus cost effective! Email me if you have any other questions!

      Delete
  15. This comment has been removed by the author.

    ReplyDelete
  16. When you say you applied Lavender Oil to the bladder area where exactly did you apply it? On the lower abdomen? I want to make my own spray on feminine deodorant and I am afraid to use almost anything because I don't want it to flare my IC or give me a bladder infection.

    ReplyDelete
    Replies
    1. Yes, over low belly visually where the bladder is beneath the skin but not at all in lady parts region

      Delete
  17. I am going to give this a try! I have not been officially diagnosed but have been suffering for 10 months now. I figured out I had it after a symptom check and a few negative results for UTI. Would you be able to go into more detail about your diet? Would be greatly appreciated!

    ReplyDelete

Make me smile :)

There was an error in this gadget