/, Jill's Journal/I was fine until I wasn’t – Jill’s Journal – Hysterectomy & Possible Uterine Cancer

I was fine until I wasn’t – Jill’s Journal – Hysterectomy & Possible Uterine Cancer

ICN Education & Support Phone Line
Will Be Closed While Jill Recovers From Surgery

Next week I’ll be recovering from an urgent hysterectomy and waiting anxiously for my uterine biopsy results. This saga began last fall when I started spotting. Of course, I hadn’t had a period in about two years so contacted my doctor and asked for advice. He wasn’t too alarmed at the time and neither was I. We both thought that it related to my modest use of estrogen. I knew that it came with some risks but I felt safe. No one on either side of my family has ever developed a hormone driven cancer (ovaries, uterus and breast).

I didn’t approach hormone therapy lightly. In fact, I was determined to “cold turkey” menopause and had used no hormone therapy even though I began perimenopause in my mid 40’s. At about the age of 52, I developed some urethral burning. It felt like I had a drop of urine stuck in my urethra that simply would not come out. After I tried every self help strategy I knew with no success, I finally threw my hands in the air and went to my urologist. He explained that the urethra is often the first to react to the loss of estrogen and found that my skin was indeed showing estrogen depletion. It took about a week of using very small amounts of estrogen cream before that symptom resolved completely and if I forget to use my estrogen cream, that symptom comes back. I love my estrogen cream. I do.

And so, I went on my merry way through menopause. About a year later, I began struggling with extreme leg cramping, another symptom of my dotage. Of course, those lovely post menopausal short term memory gaps were also becoming a daily reality. I found myself asking “What was the name of that IC researcher who discovered xyz?” Normally, that info would be at the tip of my tongue. It was so frustrating! So, I asked my OB-GYN if I could use some oral estrogen and he agreed, as long as I also used some progesterone to pre- vent periods. Life was good. My memory improved. I was able to concentrate at work as long as I didn’t click on any social networking links (GAH!, don’t get me started about Facebook!) Cramping improved. I was good, until I wasn’t.

Last Fall, I started spotting. It was initially very light but, in December, got more intense. On the Friday before Christmas 2016, my doctor measured the length of my endometrium during one of those oh so awkward pelvic exams. It was 6mm. Normal is 4mm but, again, given my estrogen use the doctor wasn’t that concerned. He proposed that we reduce my estrogen for three months and try to force a period. So, from January through March, we did just that. I know you women can relate to that feeling like you’re going to burst, just waiting for that period to start. I felt that every day for 3 months. Alas, no period. We measured my endometrium again and it had grown to 8mm. That was not a good sign.

I had my first hysteroscopy in late March 2017. Oh joy. Who would have thought that they could pry open a cervix and suction out some lining while you’re awake in the office. He numbed my cervix with the biggest needle I’d ever seen with a few quick shots of lidocaine and it took just a moment to get a tissue sample. It wasn’t that bad. My sister and I actually stopped at two nurs- eries on the way home though once the anesthesia wore off, I needed a little Norco. That biopsy came back with no cancer but with suspicious growth, suggesting a polyp or endometrial hyperplasia.

With a deep sigh over the phone, my Ob-Gyn said “We have to do a D&C to take a closer look at your entire uterus.” It was a simple outpatient procedure and I was home in just four hours. My biggest worry was being able to urinate after the procedure as well as pain control. The anesthesiologist just used propofol and it worked like a charm. I was able to urinate very easily afterwards. The post op recovery was a breeze, just two days of pain meds and then I had to wait. And wait. And wait. And wait for the dreaded biopsy results.

Just two days ago as I write this, my Ob-Gyn called me. I knew things were bad when he said “We just got your results back from Stanford. We sent them there for a second opinion.” I held my breath. The results said that I had “Complex endometrial hyperplasia with a vague architectural complex. Adenocarcinoma cannot be excluded.” And I cried a LOT. In fact, I haven’t really stopped crying. It’s right there, sitting between ears, cancer. The risks are in my favor. They said that there is an 80% chance that it’s benign and a 20% chance that it’s malignant. These cancers are very slow to grow and usually confined to the uterus. And so, as you read this, I am recovering at home and waiting for my biopsy results.

This the first time time in 24 years of running the IC Network that I will not be able to answer our phones or help patients for an extended period of time. I’ll be off work for at least four weeks or longer. I’ll probably be driving myself crazy reading romance novels (it’s my secret indulgence – I can’t read IC research before I go to bed), working in my butterfly garden and quilting.

I’m staggered by the emotions that I’m feeling. I’m so deeply worried that this could exacerbate my IC. I told my surgeon that I didn’t care about my uterus. I’m 56. I don’t need it anymore. But I do need a healthy, uninjured bladder and pelvic floor. And because I’ve worked with so many of you over the phone, I know that hysterectomies can be very painful and have a very long recov- ery time. I hope that I’ll be able to do my stretches to keep my SI joint strong and pelvic floor relaxed.

My other key worry is pain control. So many patients today have been denied pain care, even some with cancer. My Ob/Gyn has promised me that he will provide pain care for the short and long term if necessary. That said, I’m still absolutely terrified.

I’d like to thank the ICN Medical Advisory Board and other national doctors for answering my plea for feedback and advice. They all agreed that a total hysterectomy was the only and best option given my biopsy results. They also had some sage advice about surgical technique (robotic got top ratings) and post op recovery which I hope to share in a future article.

Someone once asked “Where does the support group leader go for support?” For me, I come to you, our ICN members. I appreciate any and all prayers and good wishes you have to offer. For the first time in years, I have to admit that I really need support. ::sigh::

You can send an email to Jill at: jill@ic-network.com or contact by mail: Jill Osborne, 5636 Del Monte Court, Santa Rosa, CA 95409.

Update – May 31, 2017

I want to thank everyone for your very kind words of support and encouragement!!!!!  Your prayers worked! I received my biopsy results last night and there was no active cancer. So, we got it out before cancer could develop! This is the first time in five months where I can finally relax and let the stress of a cancer diagnosis go.

I’m still recovering from surgery. It was only a week ago. So I’m walking slowly, holding my belly and not sitting for long periods of time…. but the worst is over. THANK YOU! THANK YOU! THANK YOU!! You have no idea what your cards, notes and emails meant to me. I’m so incredibly grateful. – Jill 🙂

By | 2017-08-10T16:05:09+00:00 May 20th, 2017|Interstitial Cystitis Network Blog, Jill's Journal|24 Comments

About the Author:

My Google Profile+ Jill Heidi Osborne is the president and founder of the Interstitial Cystitis Network, a health education company dedicated to interstitial cystitis, bladder pain syndrome and other pelvic pain disorders. As the editor and lead author of the ICN and the IC Optimist magazine, Jill is proud of the academic recognition that her website has achieved. The University of London rated the ICN as the top IC website for accuracy, credibility, readability and quality. (Int Urogynecol J - April 2013). Harvard Medical School rated both Medscape and the ICN as the top two websites dedicated to IC. (Urology - Sept 11). Jill currently serves on the Congressionally Directed Medical Research Panel (US Army) where she collaborates with researchers to evaluate new IC research studies for possible funding. Jill has conducted and/or collaborates on a variety of IC research studies on new therapeutics, pain care, sexuality, the use of medical marijuana, menopause and the cost of treatments, shining a light on issues that influence patient quality of life. An IC support group leader and national spokesperson for the past 20 years, she has represented the IC community on radio, TV shows, at medical conferences. She has written hundreds of articles on IC and its related conditions. With a Bachelors Degree in Pharmacology and a Masters in Psychology, Jill was named Presidential Management Intern (aka Fellowship) while in graduate school. (She was unable to earn her PhD due to the onset of her IC.) She spends the majority of her time providing WELLNESS COACHING for patients in need and developing new, internet based educational and support tools for IC patients, including the “Living with IC” video series currently on YouTube and the ICN Food List smartphone app! Jill was diagnosed with IC at the age of 32 but first showed symptoms at the age of 12.

24 Comments

  1. Virginia Zidek May 20, 2017 at 6:22 pm

    Praying for you and a quick recovery. I pray you have support and great doctors. You have always been supportive of anyone in pain and I remember when I called you in pain. Thank you.

  2. Glenda Harris May 20, 2017 at 9:56 pm

    Hoping for a quick recovery. Having gone through a hysterectomy at 27 it’s was the most painful recovery. I feel for you.

  3. Shelia Ricks May 20, 2017 at 10:41 pm

    Jill, you are in my thoughts and prayers. As a cancer survivor myself, I beg you to lean upon your faith. You see I DO believe in miracles I had to have half of my lower left lung removed and thankfully it was early stages and no treatment was necessary. A few months into my pet scan they detected bone cancer. I saw the pet scan, I saw the cat scan and they all said cancer. I had many prayer warriors praying for me. Then the dreaded biopsy results and pet scan. No CANCER! I believe with all of my heart it was the grace of God that I did not have bone cancer. All of the reports said that I did. Also remain positive. You can do all
    Things through Christ who strengthens you. Attitude is everything for you now. Remain positive no matter how bad you feel. Just as you have fought IC; imagine yourself whatever is coming your way. Most of all, know that you have a huge support group around you to help you through this fight. YOU CAN DO THIS❣️ We have your back. Love and prayers and all the hugs you can handle my IC Sister. You are a survivor❣️

  4. Dianne Armstrong May 21, 2017 at 12:04 am

    I had an LAVH some years back. I went home in 4 hrs., never used anything for pain except motrin, Fatigue was a problem for a few weeks but pain wasn’t. I was off work about 3 wks. I believe she gave me two OxyIR in the PACU but nothing after I got back to my room and I didn’t take a script home with me. I had no bladder issues after all the anesthesia drugs passed through. And best of all, my bleeding turned out to be a polyp 🙂 Wishing you a very successful surgery and speedy recovery. I was scared to death because my mother had had breast CA.

  5. Kim May 21, 2017 at 4:35 am

    Best wishes for a quick and painfree recovery. Thank you for all that you do to help us manage our health.

  6. Jenna Patrick May 21, 2017 at 5:48 am

    Prayers to you for a quick recovery and good results. I hope you don’t see anymore bladder pain.

  7. Elizabeth Benson May 21, 2017 at 8:02 am

    I’ve been though a very complicated hysterectomy (6 hours long) with the Davinci robot. Mine was really bad because I had adhesions, ruptured cysts, endometriosis, fibroids, etc. My surgeon said it was one of the hardest he’s ever done. Recovery was difficult and long, but I made it through. My advice to you is take it very easy until you are healed. I reinjured myself because I fell and tore unhealed tissue inside. That was worse pain than after surgery. I will be praying for you Jill.

  8. Sandra Zahara May 21, 2017 at 2:21 pm

    All the best Jill. I will be praying for you. We all have your back & will be sending you all our love & strength. Thanks for being there for all of us when we need you. You will do just fine & I am sure you are in good hands. This too shall pass & before long you will be as good as new. Take care & believe that everything will be fine.

  9. Carol Carrasco May 21, 2017 at 3:54 pm

    I had an abdominal hysterectomy 10 years ago due to very large fibroids pressing on my bladder, my doctor was hoping it would ease my frequent urination. Though it wasn’t pleasant it wasn’t as bad as I imagined. Try to visual everything going smoothly and I know how hard that is with the IC factor, but I think sometimes we freak ourselves out and that doesn’t help. I’ll keep you in my prayers that it all goes well and doesn’t exacerbate your IC.

  10. Sarah VM May 21, 2017 at 4:20 pm

    I will be praying for a full and complete recovery! Hoping they can keep your pain under control and you can get back to normal as soon as possible!

  11. Dianne May 21, 2017 at 5:26 pm

    ✝️ Sending prayers and hugs. ✝️

  12. Linda Grogan May 21, 2017 at 6:38 pm

    Prayers that all will be fine. Although I don’t understand your dr treatment for yoy, and why he let things go on the way he did.

  13. Linda Grogan May 21, 2017 at 6:40 pm

    One thing that really helped my I Can was Cymbalta. Just saying.

  14. Cindy L'huillier May 21, 2017 at 6:56 pm

    I am praying for you Jill and will continue to pray for you. I had the same surgery but had everything removed. Not just my uterus. My recovery was not painful at all. What was difficult for me was the complete loss of hormones. I felt depressed and anxious. Once I got the bio-identical hormones I was back to feeling better. They suspected ovarian cancer with me as I had a softball sized cyst or tumor on my right ovary. Anyway just know I am praying for you!

  15. Bev Laumann May 22, 2017 at 6:25 pm

    Jill, you are in our prayers! Charlie & I were so shocked and saddened to find out. We wish you all the best for a speedy and complete recovery.

  16. Vandana May 22, 2017 at 11:08 pm

    Wish you a speedy recovery Jill .All our thoughts and good wishes are with you.

  17. Susie Albrecht May 23, 2017 at 2:18 am

    I was diagnosed in 2014 with uterine cancer and it came as a huge shock. My dad had just passed away from cancer 3 months before I got diagnosed. My grandmother had uterine cancer at the same age I got diagnosed 52 so my dr wanted to do genetic testing and I was diagnosed with lynch syndrome. It is a genetic defect that included uterine cancer being a very high risk for women. I couldn’t believe it not me, my dad had just died so I bought a necklace that said Gods got it. I have worn it every day since as a reminder that God is in control, not me and I wanted to keep looking to God for hope, faith and trust. The next year I was diagnosed with a brain tumor. I had to have a very intensive surgery for that, but today I am cancer free and I feel so blessed and thankful. Prayers for complete healing and love being sent your way. Keep looking up. ❤️

  18. Brenda May 23, 2017 at 10:21 am

    Love and prayers for you Jill and everything will be okay. ((((hugs))))

  19. Patti May 23, 2017 at 10:55 am

    Best of luck to you Jill. Sending positive vibes your way. Hang in there.

  20. Carol Lesmeister May 23, 2017 at 7:33 pm

    Dear Jill,

    I just read your story and I am really sorry for all that you’ve gone through and are still going through. It must be so difficult, waiting for results of the biopsy. I’m going to think really strong thoughts for the 80% chance that it’s benign. I can understand your being scared. One thing you can be certain of, and that is that your IC family are all thinking about you right now.

    You have given so much of yourself to all of of us through the years, so now it’s time for you to let us be able to give back a little and send our thoughts and good wishes to you.

    I can only imagine how scary it must be, not knowing, and worrying about being able to get the necessary pain meds if they’re needed. I’m glad to hear that you can count on your Ob/Gyn if need be. I hope, so much, that this won’t flare up your IC again. I don’t think you’d be normal if you didn’t worry about these kinds of things.

    It was 20 years ago, 1997, when I was diagnosed with IC. I was always so grateful to have found you and the ICN when I was so scared and feeling alone after my diagnosis. I’ll never forget how generous you always were with the time you spent with me on the phone. I appreciated it so much. You gave me so many good ideas and helped me in so many ways, as I know you have with the others.

    I’ll be thinking about you and waiting to get updates. Just take good care of yourself now. You have earned your time to just relax as much as you possibly can, and just read your romance novels. 🙂

    Much love to you,
    Carol L

  21. Carmela May 26, 2017 at 12:22 pm

    HI Jill,

    Thinking of you and sending positive healing vibes your way. I had a total hysterectomy at age 43. That was….wow…15 years ago! I had a LAVH. It took a while to heal, there was injury to my bladder but I got through it just as you will. I pray for a negative biopsy result. You’ve got this. You can do this. You will be ok.<3

  22. Gayla May 26, 2017 at 4:49 pm

    My prayers are with you, Jill. Praying for a good report as well as strength. You’ve helped so many of us, and I thank you for that.

  23. Jamie May 26, 2017 at 4:54 pm

    Sending hugs and prayers…hope you recover quickly and get rid of all the cancer!

  24. Kristen S. Shaffer May 27, 2017 at 12:18 pm

    Good luck and gentle hugs to you. I had this happen to me when I was 42. I had an emergency hyserectomy after a D&C came back with complex endometrial hyperplasia. I was told I had a to have a hyserectomy asap. I tstarted my long battle with interstitial cystitis, urethral pain, urine retention and pelvic floor distinction.
    Please just take it slowly and easy. Give yourself time to heal. That is the most important thing you can do.

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