Last Spring, I announced that I was having an emergency surgery for possible uterine cancer. It was May 23, 2017 and I was terrified. Absolutely, completely and totally terrified that they would find active tumors and, worse (yes, worse) that the surgery would exacerbate my IC and pelvic pain. Let me start by saying that they got it all. No chemotherapy or third surgery was necessary. The final biopsy confirmed that I had “complex endometrial hyperplasia with atypia” throughout my uterus but it had not yet built tumors. I am incredibly relieved and grateful for the dozens of Get Well cards and wishes I received from our members.

As I was working through this process, several IC experts very generously gave me their time and expertise and, in return, I promised that I would use that information to help other women who might be facing the same challenge. In this article, I will share the brutal details and facts, the mistakes that I made, methods used and, thankfully, the “near miss” outcome. I had always believed that heredity was the key risk factor for uterine cancer but it’s not. As the pharmaceutical industry now acknowledges, taking oral estrogen carries significant risk. Here is my story.

The Decision To Take HRT

Perimenopause first appeared when I was about 45. I began experiencing what I called “minibursts,” little waves of vertigo, nausea and heat that didn’t last long but certainly didn’t feel good. I sometimes woke up with unexplainable anxiety and had moments when I became very angry (aka “the rages”) yet when I asked myself why, I had no explanation. My ability to focus, concentrate and short term memory were suffering. My Ob-Gyn confirmed the onset of perimenopause and offered hormone replacement therapy. I declined because I felt like I was coping pretty well. I wanted to take a more natural approach to aging.

That changed at the age of 51 when I began experiencing chronic urethral irritation. Estrogen plays a critical role in the health of our skin and mucosal layers. When it declines, the mucous becomes thinner and the skin beneath more vulnerable to irritation. With frustration, my urologist asked “Jill, didn’t you use the estrogen cream I prescribed for you?” I said “No, I didn’t think that I needed it yet.” Because honestly, I feel young. Qualify for a senior discount? Never! He explained that the bottom half of the urethra is often the first area to react to the loss of estrogen and suggested using a little estrogen cream at the entrance of my urethra. It worked like a charm.

Then about three years later, I began struggling with a lot of muscle cramping and wasn’t  focusing as well at work. After months of discomfort, I finally asked for hormone replacement therapy. Within days I was feeling and focusing better. Even my skin looked better. Of course my doctor advised me of the risks of taking hormones but my mother has used then safely for many years. We had no history of hormone driven cancer in our family and I felt it was safe for me to try.

Mistake #1 – I didn’t understand the clear risks of taking oral estrogen.

Early warning signs

I had been taking oral estrogen and progesterone for just three years when I started spotting last Fall. It was a very light pink blush that lasted for several weeks. So minor that I thought nothing of it. In mid November it progressed to a little bright red bleeding on random days. I contacted my OB-GYN by email and asked if this was concerning and he said that I should make an appointment and come in to see him so that he could take a look. Instead, I blew it off as a rare post menopausal period and didn’t make an appointment.

Mistake #2 – I didn’t act early!

In the week before Christmas I started cramping and passing blood clots. Scared, I made an urgent appointment with my Ob-Gyn. He performed an ultrasound, measuring the thickness of my endometrium (surface layer of the uterus). It was 6mm thick, above the normal 4mm but given that I had been on oral estrogen for a few years, he wasn’t surprised. His suggestion was to force a period by adjusting my hormones and then measure it again. He offered to do a biopsy but I declined out of fear of the pain.

Mistake #3 – I let fear stop me from having that first biopsy. I took the easy way out.

From January through March, I was prescribed a double dose of Progesterone hoping that that thick endometrial layer would slough off. You know that feeling (pressure, anger, frustration) you sometimes get when you’re body is ready to have a period? Try having that for 3 months. Cranky? You betcha. I had my followup appointment in early April 2017 and we were stunned to discover that my endometrium had grown to 8mm. This was not a good sign because the endometrium thickens with cancer. My doctor wanted to do a biopsy right then but I was alone at the appointment and didn’t have someone to drive me home.

Mistake #4 – I let fear stop me again from having a biopsy though I did schedule one.

Two weeks later, I had a hysteroscopy, a procedure in the office where they numb and gently open the cervix to remove a sample of endometrial tissue. It took just a few minutes and wasn’t nearly as bad as I thought it would be. Don’t fear this procedure if you need it. Bring someone with you for support and to drive. You’ll have some residual bleeding and cramping but you’ll be back to normal quickly.  About a week later, the biopsy results arrived showing a possible polyp and complex, atypical endometrial cells that are known to turn into the cancer. My Ob-Gyn said that he needed to take a look at my entire uterus.

A D&C is a more aggressive diagnostic procedure where they scrape off the surface of the uterus and take a close look those cells.  It requires outpatient surgery and anesthesia. Thank you ObamaCare for my insurance. Kaiser Permanente Santa Rosa hospital was amazing. The staff were kind and considerate. They listened to my worries about pain and being able to urinate afterwards. The anesthesiologist explained that they could adjust the anesthesia so that I would be able to urinate easily by using propofol. It worked beautifully and I was sent home to recover with Norco and instructions to rest.

It took 17 long days and a second opinion via the Stanford University Pathology Department to get the results of that biopsy: “complex endometrial hyperplasia with atypia and a vague architectural complex.” Stanford said that they could not rule out active cancer deep within my uterus. I had a 20% to 50% chance that I had uterine cancer that the D&C couldn’t find.  A full hysterectomy was urgent and necessary.

Pre-surgery Considerations

Facing any major surgery challenges body and soul.  I have worked hard in the past twenty years to heal my body and control my pelvic pain and it’s worked. In the past ten years, my IC flares have been rare. I’d have maybe one or two flares a year that required a little pain medication but, for the most part, I’ve lived my life as fully as I could, worked full-time and cared for my elderly parents.  My fear, of course, was that the surgery would send me back to those first few desperate years where my pain raged out of control.

My way of coping was to educate myself as much as possible about uterine cancer, be proactive with my physicians and consult with experts. For the first time in history, I asked our Medical Advisory Board for personal advice and suggestions on how to protect my IC. I sent them my pathology report and heard back from most of them within an hour. In their experience, most patients with IC did not worsen after hysterectomy. They had differing opinions about the surgical technique to be used but all agreed that either the DaVinci Robotic Method or Laparoscopic Assisted Vaginal Hysterectomy (LAVH) were the least traumatic methods.

The first decision was where to have the surgery.  My local gynecologist suggested that I go to Kaiser Sacramento (about a two hour drive) to have the surgery performed by a gynecologic oncologist. They would remove everything (ovaries, fallopian tubes, uterus and cervix), perform an immediate pathological examination and then, if necessary, remove lymph nodes to see if it had become malignant. I balked. I couldn’t imagine having to drive hours back home after surgery. I couldn’t fathom the pain that that would cause.

One Board Members offered sage advice. He said “Don’t have more surgery than you need. Right now, you don’t have a diagnosis of active cancer, only possible cancer.” He urged me to approach the surgery in stages based upon what they found. He noted that oncologists can be quite aggressive and that, at this point exploratory lymph node removal wasn’t medically necessary. That’s what gave me the confidence to have my surgery done locally. My OB-GYN is considered one of the best surgeons at Kaiser. I knew he could do the job well! I had to accept, though, that if they found an active malignancy I would still have to go Sacramento for a third surgery for lymph node dissection. Ugh.

At my pre-op appointment, my doctor spent an hour explaining exactly what he would be doing, how he would be doing it and what I could expect post surgery. I asked if he had to take my cervix too and he said “Yes. We have to take anything that could have been in contact with endometrial cells.” I asked if we could taper me off of estrogen and he said “No. You have the cells that are turned on by estrogen.” He said that we would need to wait at least six months to see how the forced menopause would affect me.

I was very concerned about pain management. After working with hysterectomy patients for years, I certainly knew that this procedure could cause severe pain. I also know that if acute pain isn’t treated, it could transition to chronic pain. I drew a firm line in the sand and said that I would not do any procedure or surgery without followup pain management with an opiate medication. Thankfully, my doctor had no problem giving me a prescription for Norco in advance so that I would have it when I arrived home from the hospital.  It absolutely eased some of my worries. If he had refused to provide pain care, I would have walked out and found another physician. Major surgery requires serious pain treatment if not just for a few days. It is rarely a Tylenol or Advil moment.

I also surprised myself by admitting that I was struggling with anxiety. I had moments where I was almost frozen in fear. He provided a little Valium just in case I needed it but, in the end, I didn’t.

The BIG day

Facing a cancer diagnosis feels like a surreal boat ride through a tropical storm of anxiety. Would I be fighting for my life? Would it set off my IC? Would I need chemo? Would chemo damage my bladder and send me back to where I was 24 years ago? It was overwhelming. Many notes of kindness and good wishes gave me the strength to get up, get dressed, drive to the hospital and walk into the outpatient unit. I confess to being a  bit numb and detached at that point too.

I can’t tell you if the nurses or anesthesiologists that I worked with truly understood IC but they were certainly very kind and willing to listen. I chucked my clothes, put on a gown, booties  and then was covered with a lovely warm air blanket that was attached to a small motor on the floor. I was flaring badly because I wasn’t allowed to drink water and/or use medication. They asked me  to rate my pain on a scale of 1 to 10. I said 7 and they immediately offered pain medicine. I also explained that I would need to use the restroom a few times and, again, no problem at all.

My last memory was a lovely older nurse practitioner anesthesiologist who came to the side of the bed with a syringe barely hidden in her pocket. I had to laugh because I knew what she would be doing… and so I told her “If I have no memory of this procedure, I will consider this a success.” She made that happen with a lovely shot of Versed.

The surgeon made four incisions in my lower abdomen through which he inserted laparoscope and various instruments. Using these, he gently detached my ovaries, fallopian tubes and uterus from their ligaments and blood supply. Then, he used a very cool cup device over my cervix to make that a final incision at the top of my vagina which detached my cervix and then allowed him to pulled everything out in one piece through my vagina. I was left with a row of fine stitches that kept the skin together and a deeper row of heavier stitches to hold my viscera together.

After he was finished, he performed a very gentle, low pressure hydrodistention with cystoscopy to make sure that I had not been injured during the surgery. He was the first to look into my bladder in over 15 years and took lots of pictures for me. Not to his or my great surprise, my bladder was remarkably healthy. I only had one small red spot (glomerulation) in the entire structure and he confirmed, as I believed, that my IC Subtype is more Subtype 3 (pelvic floor) and Subtype 5 (functional somatic syndrome) than Subtype 2 (bladder wall driven).

The funny thing about having outpatient surgery is that they always seem to be in a rush to get you out of the hospital, right? When I woke up the first time in the recovery room, the nurse was saying “Are you ready to put your dress on?” I, of course, groaned “NO!” But I did tell her that needed to use the restroom. She chirpily replied “Great, we’ll put it on in the bathroom” which she did. I limped back to the bed, slept for about 30 minutes more before I was shaken away and told “It’s time for you to go home NOW.” I arrived home just 5 hours after I had checked in.

Post-Op Recovery

Despite the fact that this was a less invasive procedure, it was still major surgery and the recovery has been daunting. Pain was certainly an issue and I required strong opiate medication for the first four or five days. My post operative pain was intense but it did slowly but steadily improve.  Within two weeks I was barely using any medication. Ten weeks post surgery, I no longer have intense pain but am struggling with an uncomfortable, annoying tugging sensation at the top of my vagina from those deep stitches which can take months to dissolve.  ::sigh:::

I wrote on my Facebook page “You know you’ve had a hysterectomy when you say Thank You Jesus when you use the restroom successfully.” I was surprised by the impact the surgery had on my pelvic floor muscles. They became very tight to try to protect me from the pain of the surgery (i.e. the guarding reflex). So tight that I could not push when I used the restroom. My claim of being able to pee in 30 seconds went out the door, replaced by a five or ten minute sojourn instead.  Plenty of fiber, split pea soup was and is an absolute necessity.

I practice reward therapy.  When I have to do something hard (i.e. medical test, procedure, dental work, surgery) I reward myself for the effort. I threw my 2017 New Years resolution to avoid all cakes, cookies and pastries away and enjoyed a frosted cinnamon roll a day for a week. You bet I deserved that. Oh and my first trip in the car was about two weeks later down to Starbucks where I ordered a decaf Frappucino WITH whip cream. I must have looked like death though because I woman in front of me asked me I wanted to go first. You really can’t hide that level of distress under makeup. (Yes, I can have an occasional coffee drink provided I follow it up with water! Remember, IC subtype 3 doesn’t have as much diet sensitivity.)

To avoid tearing stitches and traumatizing the tissues more, hysterectomy patients are instructed to avoid lifting anything heavier than a quart of milk for two months. I found that out the hard way when I bent over in my closet to pick up a tee shirt and managed to rupture a deep stitch.  No shopping, cleaning, vacuuming or gardening. Sitting for long periods was and still is hard. Driving long distances at this point is daunting until those deeper stitches have dissolved.

I was also hoping that I would be able to use the time off work to do some fun projects like the ICN Flare App but even that was too much. I did what every patient should do. I rested, walked when I could, played in my garden and just tried to heal. I also re-read every Lynn Kurland book, about 15! Great distractions all.

Spiritual & Emotional Trevails

Despite final biopsy results that showed that I did not have any malignancies, the hardest part of this journey has been both emotional and spiritual. Though my wounds are healing, I feel traumatized… deeply and profoundly traumatized. Seven months of stress, anxiety and worry that, at every point, became scarier took a toll. When the doctor finally told me that I must have a hysterectomy, I wasn’t just angry, I was irate that I had to face yet another medical condition. I asked God “Wasn’t IC, IBS, Vulvodynia, Gastroparesis enough?” I tried to rationalize it by saying that I could use this to help others but that didn’t really help.

When I looked in the mirror in the weeks that followed, I saw a weary, somewhat haunted version of myself in the swelling of my belly and the hands I held protectively over my sutures. No matter how I explained it, most people can’t understand just how painful and hard it is, kind of like being diagnosed with IC, right? And though every day, the pain got better, I felt like I was walking through a fog of distress where I kept asking “Did this really just happen?” My brain knew that I had had surgery but my heart still hasn’t quite caught up.

There’s also grief. Grief that I can no longer nurture a child. My foundation as a woman was shaken. I know that my uterus didn’t  define me but losing those ovaries was rough. I liked the little bit of estrogen that they produced that kept my skin moist, my thought process clear and my memory pretty sharp. Now I’m in a forced menopause complete with hot flashes and brain fog. I used to sleep well but now I’m up for a few hours a night… and it’s brought me totally back to my early days of IC when my bladder kept me running to the restroom.

I write this to share the feelings that I think most of us have felt when faced with a serious and challenging health condition. We have to honor and process those feelings. We have nurture our spirit. We have to give ourselves time to heal whether it be a diagnosis of IC or cancer. They say that it takes about a year to fully recover from a hysterectomy and I can feel that. It’s only been ten weeks as a write this but I can tell that I’ll be taking it one day at a time, with a focus on being kind and compassionate to my somewhat battered soul. I’m a fighter. I know where I want to go and what I want to do… but it’s  going to take some patience and perserverance.

If you take estrogen replacement therapy and notice any unusual or bloody discharge, please talk to your doctor immediately. Don’t let fear stop you from acting as early as possible, having any necessary tests and seeking a biopsy. I was very lucky. We caught mine at exactly the right time. I have no doubt that if I had waited another six months, the diagnosis would have been far worse and I would be facing chemotherapy. If my story helps even one of you catch cancer early, then it was worth every moment.

Gratitudes

  • Thank you to all of the ICN members who sent me cards, letters and notes of encouragement. You have no idea how much it meant to me and my family to read your stories of how the ICN had helped you… and how you, in return, shared your stores and helped me to recover. It was a full circle moment that changed my life.
  • Thank you to my sister Janice who stood with me at every appointment and my brother in law Brian who came down to do our shopping, take my parents to doctors visits and check in with us all.  I am so blessed to have you both in my life.
  • Thank you to my parents who cared for me when, normally, I’m their caregiver. My 88 year old mom woke up every night for a week to make sure I was ok. My 94 year old father did the things that I normally would have done, including making most of the meals, the laundry  and more!
  • Thank you to Dr. David Bennett, my Ob-Gyn at Kaiser Santa Rosa. He’s been my gynecologist for 24 years and is a master surgeon. Thank you for listening to my worries, educating me calmly and patiently and addressing my worries about pain with compassion and kindness.
  • Thank you to the ICN Medical Advisory Board who each shared their thoughts and wisdom about how I could proceed on this journey. You gave me both comfort and strength.

#speechless. #gratitude #icwarriors #icsisters #icbrothers #westandtogether