When in NYC, why not stop in at your endo specialist?

Unfortunately I’m not in NYC for fun, but rather to be there for my mother while she starts to undergo a new chemo therapy at Memorial Sloan Kettering Cancer Center. She just started the cocktail of drugs last night and has been doing well minus the nausea. Since my father is with me and since she is doing well, I have a call to my Endometriosis Specialist, Dr. Kanayama who is pretty close to where my mom is being treated.

If you remember from my last post I had stopped the birth control pill because I was having awful UTI like symptoms. I’ve seen 2 Urologists now who both think that what I’m feeling has to do with hormones and that endo could be on my bladder since all of the urine cultures show no signs of bacteria (good times). I’m still having those UTI-like symptoms which feel like something is pressing on my bladder all of the time and thus feeling the urge to urinate all the time (not fun). I’m also now having the endo pain again in addition to this since stopping the pill. That means a constant ache and twisting sensation in my left lower pelvic area and having a really hard time moving bowels (again – not fun), so I thought it was probably a good idea to be seen.

Dr. Kanayama performed a transvaginal ultrasound as he normally does and shows me where there could be signs of endometriosis. He doesn’t know for sure until he goes in through laparoscopy, but we can see how my uterus has shifted about 20% toward my left ovary and there appeared to be fluid around my organs which is also indicative of endo usually. Endometriosis does a lot of damage I had forgotten about when I was first diagnosed 10 years ago, but one of the things is that it starts to grow and organs start to stick to each other causing issues in addition to endometriosis releasing toxins in the body. As I think about all of this I still can’t believe how complicated a disease this is and how it is not that well known.

For those that have never had a transvaginal ultrasound, here’s what you have to look forward to:

It’s really not painful unless you have something like endometriosis going on inside. I don’t feel pain anymore but I remember prior to knowing what was wrong with me the pain I felt – it was awful. Even just an ultrasound on my stomach hurt. I really appreciate that Dr. Kanayama does the ultrasound himself instead of a technician like it is normally done in other offices and then the doctor just reads a report. I hope that if you’re seeking help, your doctor performs these him/her self.

Dr. Kanayama does not push surgery unless he feels it is really necessary, but he does feel it needs to be in my future as soon as we can make that happen due to it most likely growing on my organs. I explained to him that I’ve accepted I need a surgery. I’ve had to face my fears and come out of denial. I’ve tried diet and lifestyle changes, but the disease is winning at this point. I’ve been pain free for about 8 years which is unusually so I do think those diet and lifestyle changes helped but I definitely did let stress take over for a large part of 2016 and that happened to be when the endo got worse.

I really can’t have surgery right away for a few reasons and so we are going to try a different birth control pill for a few months and see if that can band aid the pain until I can get surgery. We are going to try Lo Loestrin Fe. I had to take a pic of it in front of the flowers because I find that funny for some reason. Strange sense of humor I know, but some of you get me đŸ˜‰.

Will keep you updated on this next pill – pray for me!







No more pill for me … for now

Well I stuck it out for 7 weeks and just couldn't for another day and so I'm stopping the pill. It did help with the pain I was experiencing with my period which was a huge relief, but I started to experience UTI symptoms that I can't live with – they are interfering with my life! The cultures came back negative, I tried a week of antibiotics and still no improvement. When I told my OBGYN and his nurse they both said no pill causes bladder or urinary tract infections. That may be true, but I am pretty confident that I'm having a side effect of the pill because I never have dealt with this before and it came on pretty soon after I started the pill.

I went to a Urologist who said she thought I was having these symptoms due to the pill but when I told a different OBGYN in the same group I go to what the Urologist she said I needed a second opinion and to go to Yale. Im keeping the second opinion appointment, but I'm taking myself off the pill to see if the symptoms go away. I can't even drive 20 minutes from work to home without worrying if I am going to hit traffic and not be able to get to the bathroom!

I could deal with the constant "break through bleeding", cramps, back aches, breast tenderness, no sleeping and weight gain since I am getting relief from my pain but I've got to see for myself if these UTI-like symptoms are from the pill, otherwise I know how it will go – test after test from the Urologist to see if they can solve the problem and I don't want to do that unless absolutely necessary.

My fear is obviously that I will have the pain again that I was having by going off the pill, but if the UTI-like symptoms stop after going on the pill the maybe I will try a different pill. Ultimately I'm just trying to band aid the problem until I can afford surgery. The surgery is what gave me years of a pain free life and my hope is that it would again. It's tough being a woman!