How Medical Gaslighting Led to Surgical Menopause
IC You Podcast Episode 19
Hosted By: Callie Krajcir, RD
Featuring: Renata See
(Callie) Welcome back to IC You, today I have a fellow IC warrior here with me. Her name is Renata See and I am super excited to have you on and to dive into your IC journey so far. Why don't you tell the listeners a little bit about yourself and then more about your IC journey.
(Renata) So I am 35, I'm a medical social worker, and I've been living with IC for unofficially 10 plus years, but I was diagnosed about seven years ago. I was diagnosed with PCOS and that was what triggered a few other things to happen. I had pretty horrific periods my entire life. Then I was in grad school to become a social worker, high stress, I was working part-time, and I had my full-time internship which was three days a week. I absolutely loved it, but I was running myself ragged. I ended up starting with a new gynecologist, I said “I'm having these out of control periods, what can you do?” So she decided to try the IUD. It was one of the most painful experiences I have ever been through to be honest. I know everybody has a different response to that, but it was quite painful for me. So we started monitoring just the pain after that, and a few months later, she had me come in for an ultrasound and it showed that I had a three centimeter cyst on my right ovary. Then a couple months later I was in really severe pain at that point. She had me come in for another ultrasound and it was six centimeters, so it was growing and she said, “I think we can wait, let's just keep looking.” By the time the third ultrasound came along, it was nine centimeters. That's the size of a baseball at this point. So I was pretty miserable at that point. I ended up going to my gynecologist and she said, “if I were you, I would not schedule surgery, I think we need to just wait”, and I said, “I don't think I can wait. I have a high pain threshold and I'm at a 10 out of 10”. So we scheduled the surgery a few weeks later. So she went in to do a diagnostic laparoscopy and take care of the cyst. When I woke up, she said, “I had to take your ovary. You had ovarian torsion and it was beyond repair “. So the cyst was so big because we had waited, it had actually turned in on itself and cut off the blood supply, so it was necrotic. I was obviously very upset, rattled by that, I had no idea it was gonna happen so that was tough. The reason I bring this story up is that is the direct cause of my IC, I think was what happened.I was never the same after they removed the ovary. I pretty much had pain consistently since then, so that's about seven years ago. I don't exactly know what happened, but all of a sudden about a month later, I started having this bizarre bladder pain. The interesting thing about my history is my mom actually does have IC, so I like to say that that was a good thing for the most part, because I was kind of familiar with what that meant. That was when the IC symptoms started.
(Callie) So you had that procedure, you started to get this bladder pain. Then what did the diagnostic process look like after that? Did you do treatment, how did that look for you?
(Renata) Like I was saying about my mom, it was kind of good that I had that knowledge going into this because I would go to my primary doctor and I kept getting negative results, I didn't have an infection, there was no UTI. I was kind of talking to my mom here and there and she said, “you know, it might be Interstitial Cystitis. If I were you it's worth looking into an elimination diet”. I basically just went on a full 100% elimination diet at that point, this is maybe a couple months after the surgery and it was really hard just like, explaining what's wrong with you. I think my diagnosis was a little bi tsped up in terms of treatments because of my mom's history. I kind of went into a urologist and I said, I think this is what's going on. He was like, oh, you're fine, you're getting rid of most of the urine. And I was like, yeah, but I don't feel fine. He gave me Uribel which was great for a little while. It did help me for a little bit, and then it kind of just stopped working. So at that point I kind of fell back to the Pyridium, which I had been on and off during being a teenager. I was always that person that had to find the bathroom. I could never be away too long from the bathroom. At that point I wasn't having bladder pain, it was just frequency. After the surgery, it was really painful urination, it was burning. So I started going back and forth between the Uribel and the Pyridium. I was referred to several other urologists who kind of did the same thing. It took a little while until I finally was referred to an IC specialist in Philly. I went in for a hydrodistention and after the recovery from that I actually did great for about a year, pretty symptom free. It was great. It really was great. So everything was going okay. But in the midst of all this, I started having another cyst growing over on my left ovary, which was the only one remaining. So I was kind of rushing to the emergency room every so often, because I was afraid of having the torsion again. I ended up having a six centimeter cyst on that left ovary, so I went into the ER and they actually did an emergency surgery. I think that's when the bladder stuff was triggered again. I came home from that surgery, and saw a new gynecologist at Penn and she was the first person to not dismiss me. So she started me on a treatment protocol for my endometriosis, this was kind of going on at the same time the bladder stuff started up again. I remember I woke up one morning and it was a horrible flare. I felt like I had a UTI, I was doing all the things in my toolkit, I had my Pyridium, I was drinking more water, I was back on my diet, and nothing was working. So that's when I kind of started to panic. I started up with a new urologist because I moved and I called their office and I was like, “I'm a new patient, but I'm in a really bad flare. Can you please fit me in, I don't care who it is and what time?” So they fit me in the next week and I went in and I just started sobbing. The doctor was great and he's like, let's talk about options here. So I did three different installations. For me, it was traumatic, the nurse was great, she talked me through it and everything, but it's painful and not pleasant. So I tried that I think three times and that didn't do anything, my bladder pain was still there. I started doing acupuncture, I started doing Chinese herbal medicine and that wasn't really working at that point.My urologist and I decided to do another hydrodistention 12 months almost to the day after my first hydrodistention which is apparently not recommended, but I did not know this. My pain was at 15/10 after that, it made my bladder pain so much worse. I went in again, she did an internal exam with her fingers, and she said, I think you have IC but I don't think the problem is IC. I think you have something called pelvic floor dysfunction. I just remember that was the first time I'd ever heard that term, so I was completely taken back. I started doing pelvic floor PT. I'm in a ton of pain here, at that point, I was just not doing well at all. I started a new job where I got to work remotely where I'm still currently at, which is great. It makes things so much easier for it all.
(Callie) Oh, I can relate to that. It's fantastic. You can wear your pajamas all day. I can wear my PJs, I can run to the bathroom as frequently as I have to go. As much as I loved working in the hospital setting, it was getting to be a lot with my trips to the bathroom, and being on your feet, and having the mask on, the N 95, I was sweating. That would trigger me to clench my pelvic floor. So that actually led me to start my own business side note. Greatest thing I ever did was find a job that lets me work from home.
(Renata) I agree with you and I'm happy for you. I can relate a hundred percent. So I started working from home and I actually moved in with my parents because I was just doing so poorly. I couldn't really sit, I couldn't lay down, I couldn't get comfortable. It was like my bladder, but also my pelvis, everything just hurt tremendously. And I kept having visits with my gynecologist who was wonderful. She really was great, but she's like, “I don't know what to tell you. Obviously you're having a lot of issues and it seems like nothing we're doing is working. I think your options at this point are hysterectomy or try to get pregnant because we gotta take this stuff out.” At this point, the birth control I was taking wasn't didn't seem to be working. I was having pain pretty consistently all day long and at night. I was bleeding when I wasn't supposed to be. I was spotting every day and I was like, I don't know what's happening. I feel like my body was just chaos, and my bladder was bad. So she said let's just schedule the hysterectomy. I think at this point, there's not much else we can do. And jokingly she's like, you could try to get pregnant, but to be honest with you, I'm not sure you can anyway. So I was like, alright, well, I guess we've made our decision.
(Callie) Oh my gosh. Wow. That, had to really mess with you in the head.
(Renata) It did. I'd say psychologically, just the isolation of going through a hysterectomy at a younger age, but also during a pandemic where ultimately I ended up having to do it alone. I couldn't have any visitors or anything. So that was another piece to it. I was living at home at the time. I really am so fortunate I was at home. I have a brother who's also very helpful. So they were my emotional support system at that point. I'll never forget my mom hugging me before I went in and she had to leave me there. And it was just kind of a crazy moment, because I'm like, I'm gonna leave this hospital a different person for sure. So I went in for the surgery, I wake up from the surgery and I was just so out of it. I remember feeling my bladder. And I was like, that's weird. You know, everything is numb for the most part. And I was like, oh, I really have to pee. I think I store my stress in my bladder. I'm feeling all this bladder pain. So as it turns out, the catheter had gotten stuck on my leg and had kinked, so it wasn't draining. So my catheter backed up to a thousand CCs. 33oz. All I know is I was told that the normal bladder holds 200 CCs. So it was just kind of ironic how that happened. So, um, I started going, yeah. So I came home from that and was in pretty severe bladder pain. So that wasn't just the issue with the catheter, but they now have said that it was the pelvic floor dysfunction. Was just traumatized by the hysterectomy, I had a total laparoscopic hysterectomy, so fortunately it was all through the abdomen. But I did have everything removed. The main issue was all the cysts I was having, so they removed the ovary. I had my cervix as well because I did a lot of research beforehand about that and they said a lot of women regretted not having their cervix out because eventually down the road they might want to and then you have to have another surgery. There's always the risk of cervical cancer, I have a family history of some cancer. I went into immediate surgical menopause, which was fun. It does tie into the IC a little bit. For me, it's hard to differentiate. A lot of times the pelvic floor dysfunction manifests as bladder pain in my case, but I also additionally have the IC. So it's trying to figure out what the specific pain is at any rate, so surgical menopause. So my uterus, she described it as black instead of being pink, and she said that I had pelvic congestion syndrome, like varicose veins in the pelvis. So everything was engorged and inflamed, which is kind of fun. So I didn't really know what that meant.She said to me was you're gonna have hot flashes and you're gonna gain 15 pounds. So that was kind of that discussion. I'm outreaching to my best friend's mother who's in her fifties. She kind of gave me some pointers. I had really bad, hot flashes. My bladder was very angry with me for a good nine months, no exaggeration. In the meantime, I started going to another pelvic floor physical therapy. I was depressed. I was Anxious. I could barely sit, I was in so much pain, pelvic pain, bladder pain, everything. I came all this way and I made this really hard decision about the hysterectomy and I'm actually not doing any better. It was a lot of frustrating moments with all the medical trauma, if you will. I started seeing a mental health therapist specialized in pelvic pain and trauma. Eventually, I was making psychological progress, but I wasn't making a lot of physical progress. I was unable to use my abdominal muscles for four to six weeks post op. So the IC took a back shelf here for a minute while recovering from the hysterectomy and the pelvic pain I was dealing with. I was still having a hard time even sitting at my desk at work was painful. So at this point is when I started with a new gynecologist down at Penn. She went into every detail. She's like, you need to tell me every symptom, how long this has happened, did you have any pelvic trauma as a kid? She's like, you're gonna need a series of these Botox treatments. She had me do 50 injections. I came home and I was in pretty horrible pain, about five weeks of pretty severe pain. It was referred pain. So I would have bad back pain, going down my legs back, tingling and numbness and pain. At this point I actually just had my Botox done a couple weeks ago. I was feeling good. I was able to use my core. I wasn't having many side effects and I think my body's just become attuned to it at this point. I am definitely a success story in terms of Botox and the pelvic floor therapy. To bring it back to the IC, my bladder pain has gotten significantly better. I can afford to kind of try more foods now, I'm not in that kind of heightened state of pain all the time. Im on amitriptyline, which has been really helpful for me. Im on a treatment protocol for to prevent UTI. I believe it's called Hiprex, I take that as needed. I also take vaginal Valium suppositories from my gynecologist two or three times a day depending, and those are wonderful. That's kind of how it all came to go.
(Callie) I'm so glad that it had a happy ending and that you're doing well because you were faced with a lot. of obstacles. You have to be a strong person to get through all of that and wanna come on this podcast and talk about it. I think that's so awesome, I really do. I think it's gonna help a lot of people. Is there anything else that you wanted to add or anything you wanna say to somebody who's going through a similar situation?
(Renata) It's just so personal. It's private. So I think that just talking about it more openly is what we need to be doing. I think that the only way we're gonna spread awareness and education is by talking about it. For anyone else going through anything that we've talked about today, I think reaching out to those around you, who you feel supported by, reach out to those that you need. As difficult as it has been, I wouldn't change it because it's made me who I am now. And if I can turn that around and spread awareness or whatever information out there to others, then that's what I'm gonna do.