It was never my intention to use this blog for personal medical news. I wanted to write about the world of ME in general, not just my personal experience of it. And I never expected that other personal health issues would ever be relevant. Yet here we are.
I need a total hysterectomy, a major surgery.
I did not expect this. One very minor symptom prompted my doctor to order an ultrasound. My uterine lining was two millimeters thicker than it should be, so she recommended a d&c. But the pathology results came back with atypical hyperplasia, a pre-cancerous finding.
I turned to PubMed. From my research, I learned that there is a chance that I already have cancer in my uterus, and even if there isn’t, the chance of atypical hyperplasia converting to full-blown cancer is very high. The gold-standard recommended treatment is total hysterectomy. They’ll take everything out: uterus, fallopian tubes, ovaries, cervix.
I’m being very matter-of-fact while also not delving into details here. I wasn’t even sure if I would blog about this at all. But then I talked to another person with ME who has gotten the same recommendation from her doctor, and I realized that maybe my experience will help someone else. Certainly, I wish there were articles and blogs for me to read about ME and hysterectomy. So, I’m writing about it instead.
Thankfully, I have an excellent surgeon. He spent more than 45 minutes answering my questions before he examined me or discussed scheduling the surgery. He expects to be able to do the surgery with robotic laparoscopy, a less invasive method of surgery with a swifter recovery time.
But recovery will be lengthy, even in the best-case scenario. For the first two weeks, I must avoid anything more strenuous than lifting a gallon of milk, although that sounds better than it is. The surgeon said I could climb stairs right away; his nurse recommended I avoid stairs if possible for the first week. My best chance of healing well without complications is to rest as much as possible for those first two weeks, and to continue to avoid anything strenuous until my followup appointment in five weeks. No pushing, pulling, bending, lifting, etc. No abdominal or pelvic exercises. Only gentle walking as tolerated.
Someone said to me that they couldn’t stand six to eight weeks of inactivity. But ME taught me how to do that.
There’s no way to predict what recovery will be like for me. The nurse said that as long as I feel better week by week, then I would be recovering well. I’ve spoken to several people about their experiences, but none of them have ME. One said it was the easiest surgery she ever had and she didn’t need pain medication. Another said she couldn’t get out of bed for a week and didn’t return to normal for four months. Who can say?
Why is this happening to me? I had thyroid cancer in 2017. Non-invasive breast cancer in 2023. Now I have pre-cancer in my uterus. Is this all the result of inflammation from ME? Or do I have some unidentified set of mutations driving all these cancers? Who can say.
I don’t feel much anxiety about the surgery–I’m more angry about it than anything else. I had been making great progress on my book this year. Now that will be interrupted for who knows how long. My daily life involves pain and physical limitations already. Now those will increase for who knows how long.
Yet I also feel gratitude. I am so thankful that my doctor recommended the d&c (and glad I took her recommendation). I have great faith in my surgeon and his team. And I have supportive family and friends who will help me get through this.
Life is like this. It’s good and it’s hard. It rarely goes entirely to plan. Having one medical problem does not insulate you from others. There are no guarantees.
“Life is like this. It’s good and it’s hard. It rarely goes entirely to plan. Having one medical problem does not insulate you from others. There are no guarantees.”
SO TRUE.
I am glad you feel good about your team and I hope things go as well as possible!
Love,
Denise
Thank you! xoxo
Recovering from major surgery with M.E. is rough. I had back surgery in October and it took me a good 6 months to get back to baseline. I hope it is a lot easier for you and I’m so sorry you have to go through this. I’m glad you have such good medical professionals–they make a huge difference. And of course, we want you around for as long as possible, so I’m glad they caught it. Hugs and love to you.
Thank you so much, Laurel.
Jennie so sorry you have to go through this – i had this surgery for endometrial cancer last year age 72. It wasn’t that bad (I’ve had 9 orthopedic surgeries so compared to those….) but the recovery was longer than the typical two weeks, I’d say more 4 weeks, and even after that it seemed a low grade difference I couldn’t put my finger on for maybe another month, but I’m used to just lying around. Can’t remember much pain to speak of. The biggest issue I had was not being able to urinate which almost caused me to have to stay another day in hospital. My apologies for going on more about my experience but want women to know this – my uterine lining was very thin so the GYN was, “99.9% sure” it wasn’t cancer and long story short it was over a year from first bleeding until the operation. Do not rely on the thickness or a biopsy, which the doctor, even though he uses it as a diagnostic tool, said is a shot in the dark and would likely have missed it. The reason I finally got a D&C is the biopsy was too painful to do. Good luck Jennie, sure glad they caught it so soon. I hope you can report back in a couple months and let us know how you’re getting along.
Betsy, this is REALLY helpful to hear! I hope you have had no further treatment or difficulties for your cancer. I will definitely report back, hopefully sooner than a couple months.
Ghostwriter available. I’m sure *no one* will notice if your book suddenly becomes snarky, and filled with military jargon… 😉
I’m glad you’re able to get this kind of care, drastic & unpredictable though it is. We have all seen how many women are denied related care these days.
Heal up soon.
LOL
Good luck Jennie. I also find myself “protesting” when I have a new medical problem “but I already have ME/CFS- isn’t that enough?!” But of course, it doesn’t work that way.
I’m glad you have good support and wish you an easy recovery of rest and well-being.
Thank you, Anne. If only life were fair!
Jennie, I’m so sorry you’re going through this (I think I used much more colorful—and very loud—language when you told me, but I will refrain in this setting). Thank you for sharing your experience that it may help others. And I sure wish you had fewer experiences to share to help others… Love you.
Love you too!
Hi! Here to give you encouragement. I have ME and had a laparoscopic total hysterectomy years ago. My recovery was pretty easy. I didn’t have post surgery pain while in hospital. The nurse recommended that night that I take the Percocet offered to help ensure i would not wind up with uncontrolled pain. ( I’m a nurse and would have recommended same for my patients- we nurses aren’t as good at taking care of ourselves as caring for others). I did wind up really fatigued the first week due to getting urinary tract infection, but then I felt better day by day. With the level that f pain: energy I had I could have returned to my sedentary job at 2-3 weeks. I didn’t due to having ME. I’m definitely not as limited as many with ME, but still wanted to give you one perspective.
Wish you the best!
Darcy, this is really wonderful to hear. My biggest fear is pain with moving around at home. Fatigue and activity restrictions I can deal with! I’m so glad your recovery was easy.
Thank you for choosing to go public. Thank you for speaking out. It really does make a difference. I hope the surgery is quick and painless and the recovery is quick and painless too. We are here to support you however it goes.
xoxoxo
I had a total hysterectomy 2 years ago. At that stage I had had ME for 13 years. I’m a part time wheelchair user due to ME. I can’t push myself in my wheelchair. I have chemical sensitivities and I’m reactive to medications. My surgery was “keyhole”. I had detailed discussions with my surgeon and anaesthetist prior to surgery about my ME and reactivity. They were particularly careful with me. The surgery and recovery went well. It went so much better than I expected. I rested aggressively after surgery and took things even more slowly than usual. After years of pain and bleeding I felt so much better to put that behind me. I was also pre cancerous. I wish you all the best
Andrea, thank you so much for this! It’s really helpful to hear. If this goes better than I expect, I will be thrilled.
I am so sorry you are facing this–but also glad you are looking at it so directly and taking wise steps! It feels so unfair to have other health serious conditions arise when already having faced and learned to manage ME as best a person can.
Thank you for sharing this with our ME community. Your generosity with us and courage have guided so many of us over the years, and been an example of using all the tools available to us to research and reflect about our own medical issues. I’m glad others responding here have been able to offer insight into their similar surgeries while also having ME. Maybe in the future there will be some big data collected on co-morbidities developed over time for people with ME. I don’t mean to make this into a statistics comment.
Your empathy as well as your research skills have both lead us as a community and benefitted us all as individuals. Sharing your personal situation gives us a chance to support you.
Love to you, my friend.
Dear Jenny,
I am so sorry to hear this news and that you have to deal with another cancer scare. It does sound like you have a great medical team, not to mention that you are facing this with grace and bravery. May all go smoothly as possible. My thoughts are with you at this time.
Thank you, Marcia!
Jennie! What a joy to see Occupy M.E. come up in my Inbox — I’ve missed you. I’m so sorry that you are facing a new and scary health problem. Thank you for taking the time and energy to write about it. I am experiencing post-menopausal symptoms that almost certainly have a relation to severe ME, but the literature and awareness is practically nil. You provide a great service to the ME community to write about your experience and point out the obvious gaps in the medical understanding. It’s interesting how much information you have gained from the lived-experience of others. I hope you will provide updates as your energy allows. Please take care of yourself.
xoxo
I do think that ME somehow makes these things more likely. Maybe how hard it is for every cell to function properly when not having enough energy. My thoughts will be with you.
Thank you, Barbara!
Please research the use of robotics in uterine surgery.
Нужно заасфальтировать территорию, но столкнулся с тем, что подрядчики предлагают совершенно разные цены, толщину покрытия и состав работ: одни включают подготовку основания, щебень и уплотнение, другие считают только укладку асфальта. Не хочется переплачивать, но ещё меньше хочется получить трещины, просадки и лужи после первой зимы. На что вы обращали внимание при выборе подрядчика по асфальтированию и какие работы обязательно должны входить в смету? Как выбрать подрядчика на [url=https://telegra.ph/YAmochnyj-remont-asfalta-08-01]ямочный ремонт асфальта[/url]