During my own quest for finding root causes to my IC, knowing that hormones were implicated, I was very interested to come across a success story regarding use of HCG in treating Interstitial Cystitis. HCG is Human chorionic gonadotropin, a hormone produced by the placenta after implantation. How the heck can that help a bladder you ask? (And I certainly asked…!) There is now published data on IC and HCG treatment, by Dr. Rao – you can read his research paper here. This provides a good explanation of HCG and it’s use in treating an IC bladder – and also produces data from a study on the topic.
You may have come across the “HCG Diet” – a quite radical calorie controlled diet used alongside doses of HCG. I have come across several IC ladies whose symptoms either disappeared or got a lot better on the HCG diet. It seems that the HCG itself, rather than the diet, could be the reason why – and Dr. Rao’s research would back up that assumption.
It is questionable whether you’d call HCG a natural remedy – however it clearly helps select individuals, and I can’t ever disagree with a treatment option that could put someone in remission, and a remission that is maintained at that.
Heather and her HCG Success
My Name is Heather Neilson. Before I had Interstitial Cystitis, I was a tall, thin energetic woman, wife, mother, avid photographer and interior design enthusiast. Interstitial Cystitis had robbed me of the life that I thought I would be living.
When I was very young, I had a handful of UTI’s (I was so young, I don’t remember them), but did not have any more until I was pregnant with my last baby. I had endometriosis in my late teens and early twenties, and was told by a doctor that it would go away when I had children, which it did, and because I was either pregnant or breastfeeding from the middle of 1994 till 2002 with my 4 children I did not have any problems during that time. I am 5’10” and my “normal” weight that I would return to after I would have my children was 145lbs. I had a birth injury to my bladder while delivering my youngest, and that set off numerous UTI’s and I spent nearly 15 years on near continuous antibiotics.
The endometriosis returned and I was having heavy and long (10 day) periods. I was also having leaking issues due to the bladder prolapse and my gynecologist suggested a hysterectomy and bladder repair. It sounded simple, and I was assured that all of my problems would go away. The surgery I had in 2005 made good on one promise, and one alone. I no longer had monthly cycles. I was so swollen from the ordeal that I was not able to urinate on my own for 6 months and had to self cath. I was not provided with a prescription for one-time use catheters, but was told to boil and reuse the handful that the doctor had given me. The UTI’s continued, but would sometimes show up as negative, with symptoms similar to an infection, but no apparent infection. I began having UTI’s so bad that I would pass globs of pus/blood in my urine.
I was finally referred to a urologist, who diagnosed me with Interstitial Cystitis. He put me on Flomax and more antibiotics and wanted to do more tests, but sadly passed away suddenly. The new urologist repeated all of the same tests that I had already endured and also prescribed nothing more than Flomax and antibiotics. As you can imagine, my hormones were doing crazy things and I entered peri-menopause before I hit 40. I had gained a lot of weight and hoped to lose some before a high school reunion. My Mom (who also has IC) wanted to have a weight loss challenge with me and it was back when HCG diet drops were all the rage before the FDA stepped in because companies were mislabeling their products. We lost weight, but our autoimmune IC and other disorders went into remission. We did not figure it out then, and thought just eating healthy was what helped. No matter what we ate/didn’t eat after we went off the HCG, it didn’t help. We both had to be careful about eating acidic foods and I spent a small fortune on supplements.. everything you read about that is supposed to work, but I did not figure out it was the HCG until a member of an IC facebook group asked if anyone had felt better when pregnant OR on the HCG diet (it is really about the hormone, not about the diet).
I did some digging and a researcher, Dr. Rao, had just published his work last year (2016). I contacted him and asked if it was for real and he sent me the research with references, and I took it to my urologist who suggested we try it since I was beginning to run out of options for antibiotics. I spent almost the entire year of 2016 on various rotating antibiotics and I was still getting infections. Getting the HCG was a problem since the urologist had no idea what dose to start with. To get it Mom and I had to go to a weight loss clinic. I was already doing bio-identical hormones, but they switched us to a more natural thyroid medication and we both did the HCG diet with injections for 49 days. After about 3 weeks, a few headaches and a few days where the frequency was increased we noticed that we felt better. I had a cystoscope to see if there was an improvement over the previous year, and there was. We met with the University of Utah to talk about clinical trials, but the doctor there said that it takes time, and money. She told me to keep doing the HCG as needed. The problem is finding a doctor to prescribe it.
I then found a new doctor that is having us do all sorts of tests to figure out WHY the HCG worked for us and to keep us on the path to healing. I did a hormone panel through bloodwork and another test that measures how the hormones fluctuate throughout the day. It isn’t a cure, and the HCG won’t work for everyone, in fact, it will make some people flare. Dr Rao has asked me to keep tabs on anyone who wants to try it and whether or not it works for them (and possibly WHY) and hopes to re-publish his work with testimonials in major medical journals. The biggest problem is that there is no way to patent a hormone and it is relatively inexpensive and therefore there is no real money to be made.
I think the next step will be contacting the HCG manufacturers themselves to see if they would like to fund clinical trials if there aren’t more doctors willing to try HCG as an off label use for IC. Out of the 112 people surveyed, when asked if being pregnant or taking HCG helped their IC go into remission, 76 people went into remission when pregnant, 21 reported that they flared more, and 1 had no change. Of the HCG users, 9 had remission, 4 had no change (3 of those 4 said they may have felt better if they were able to do it longer than one month) and 1 person flared while using HCG. Both the Urologist at the University of Utah and my own Urologist have told me to keep doing HCG, but do not want to prescribe the HCG themselves. Our path to healing has been a little bumpy, but I can honestly say that I am in remission. I am eating things that I love, like tomatoes and citrus and I am back to doing photography and am busier than ever. This disease takes so much out of you. I regret the years that I just did not feel well, the things I did not get to do with my husband and kids and the places that we didn’t get to go because I either did not feel well, or the financial burden of trying to take care of my IC did not allow much else. I am 45 and had a hysterectomy when I was 35. My Mom is 70 and had a hysterectomy when she was 32. We believe that our IC is hormone/autoimmune related. Both of us got IC after severe infections and antibiotics.
Our IC and my Mom’s Rheumatoid Arthritis went into remission while on the HCG. We are doing bioidentical hormone replacement and went on Natural WP thyroid (from synthroid) as well as high potency iodide when we started the HCG. We also take probiotics, a good multi vitamin and a pretty hefty dose of Vitamin D. I take magnesium, but it makes my mom have bowel issues. My Mom is currently on HCG again and the doctor agreed that he wants to have her on it for long term. I will do another round in October of 2017 to see if it helps with the”elasticity” of my bladder and pelvic floor. My Urologist is almost convinced that HCG is a viable option and I will be seeing him again in December.