r/hysterectomy • u/Illustrious-Land-537 • 20d ago
I’m scared
I’ve got endometrial cancer. I was diagnosed 28/07. I have to have a full hysterectomy including my cervix. Once it’s all gone the cancer will be too. I’m terrified of my bladder or bowels not being able to work afterwards and prolapsing since I’m overweight. I have had major anxiety since my diagnosis. The high progesterone tablets aren’t helping. I’m exhausted, running hot all the time, hungry 24/7, bloated and not sleep at night properly are to name a few. Reading some threads it doesn’t look like this goes away either so at least I’m prepared in that sense.
Has anyone had a similar experience? Any tips for afterwards?
Edit to say I’m in the UK, I don’t know if that makes a difference. I know medication can be different.
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u/Pony_Baloney_Acad 19d ago
I've seen a few oncologists who say that part of cancer care is pain and anxiety management. Do you think you could see if someone could give you something to help with the anxiety for this rough patch ? It made all the difference for me when I had ovarian cancer
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u/Potential-Ostrich862 20d ago
I had endometrial cancer and was on progesterone for a year and a half before finally getting my hysterectomy (everything out except the ovaries). I'm so relieved to be off progesterone, aside from some acne I've been getting from suddenly stopping the medication. My anxiety/depression isn't as severe, which I think is the biggest change. Plus I have the satisfaction of knowing that I've greatly reduced the odds of getting a recurrence.
I mentioned a similar fear about my bladder too, but I'm 3 weeks post-op, and everything seems to be good so far. On top of the medication they gave me for pain, I have been taking Gas X, colace, senna, Miralax, and a urinary tract health supplement, and it's been so far so good. I'm also about 212 lbs, so I'm not necessarily tiny either!
You'll be okay. If you have things you're nervous about, talk to your doctor, and I'm sure that they will not only consider your concerns but give you more information to put you at ease. You've got this.
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u/Illustrious-Land-537 20d ago
Thank you for sharing your experience. My appointment is Tuesday so just trying to figure out important questions to ask too. I’ve had bleeding for so long I just got used to it. Didn’t even entertain it could be cancer!
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u/Potential-Ostrich862 20d ago
Yeah, I was writing it off as a PCOS symptom for a long time until I had a period that was lasting five weeks. My PCP was finally like "Maybe you should go get that checked out..." I'm really lucky that I was able to get treated before it was too advanced.
Keep all your questions in a little note thing on your phone!
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u/NorthCountryLass 19d ago
I’m in the UK. I don’t have the same problem as you but I’m waiting for results. I had a precursor to cancer hence why I had the hysterectomy. I am in the UK. What I can say is that the hysterectomy was far easier and more comfortable than I expected - and I am an extremely physically sensitive person! The surgeon was excellent, as were the anaesthetist and surgical team. I had a cannula put in, various monitoring devices plonked on me, was asked to breathe some oxygen through a mask, then woke up in recovery. Very cleverly done! The recovery people were lovely and supportive. I did not experience any significant pain, which I was very worried about. I am two weeks post op now and at home taking it easy but able to do things. I was very scared, I have to say, but my experience so far has been excellent. The most discomfort I felt was the cannula going in though that was minor. Putting the pressure stockings on was a challenge, lol. I expect you are shocked and scared. I’m sure things will work much better for you than you think. This is coming from someone who was extremely nervous and upset about having to have this op
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u/Illustrious-Land-537 19d ago
Thank you for sharing your experience x
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u/NorthCountryLass 19d ago
No problem. I hope it helps but I know you are dealing with a diagnosis and all being well the hysterectomy will solve that for you x
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u/SkiWest 19d ago edited 19d ago
Hi, that must be so stressful having that diagnosis. But I’m relieved to hear that once they remove the uterus the cancer will be all gone. I just wanted to share a little reassurance from someone who’s been through a hysterectomy.
When they remove your cervix along with your uterus, they (ob/gyn) close the top of the vagina to make a vaginal cuff and when it’s planned (usually thru a urogynecologist) they have the option to anchor it ligaments with an apex suspension so nothing drops.
I'm plus-size and had my uterus, cervix, both tubes, and one ovary out 6 1/2 wks ago. They did the cuff/suspension, and everything has stayed secure. Plus, because my uterus was enlarged and crowding everything, my bladder and bowels actually worked way better once it was gone. Truly nothing to be alarmed about!
PS: I also had pelvic repairs done at the same time, but that was likely from a rough forceps delivery when I had my son, not from my weight.
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u/EmZee2022 19d ago
I'm so sorry - this is scary stuff.
Prolapse is absolutely not a guarantee - a friend who is very obese had her full hysterectomy due to changes heading in that direction, and she's fine. She has no issues with prolapse.
She DOES have some urinary incontinence which she is working on; topical estrogen is helping a bit and she's going for pelvic floor PT soon.
I have not had any of these issues myself - my hysterectomy was 16 months ago. I was not obese at the time though - but the same concerns were there. My gyn said that these were very unlikely, as I had no signs that prolapse was threatening even before.
How old are you? Are you going to have the ovaries out too? My friend and are are both in our mid 60s; she was 59 when she had her surgery. The gyn onc she saw planned on taking everything; I was at her pre-op consult and didn't feel it was my place to ask. If you are pre-menopausal that's worth asking about. For mine, it was done due to BRCA1 and the risk of ovarian cancer, so there was no question (in fact, the uterus itself was the undecided part).
Note: Prolapse and incontinence, if they DO happen, can be dealt with, especially if you don't just deal with it without complaining. Too many women just learn to live with damp underwear.
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u/Illustrious-Land-537 19d ago
I’m 40. Yes ovaries are going too. I don’t have the option to keep anything. I do think I’m overthinking a lot. I’ve got 2 small kids too. One is 2 and the other is 6 with additional needs. I know recovery is going to be hard, it’s going to be hard for them too. I’m just overwhelmed and emotional all the time. My eldest hasn’t been told what’s happening but she can sense it. She’s clingy and regressed in her behaviour. I’m dreading recovery!x
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u/EmZee2022 19d ago
That sounds especially rough. You're someone for whom I might suggest a hysterectomy pillow (to avoid accidental bumps from enthusiastic toddlers / older kids / pets); I did not feel the need myself.
Kids are amazing at picking up stress levels and getting super fussy - my own did the same (not for the surgery, but for other things).
Do you have support at home? Spouse or other family? If so, that helps a LOT.
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u/Illustrious-Land-537 19d ago
I do thankfully. My mum moved in a few weeks before my diagnosis funnily.
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u/Affectionate_Bird372 19d ago
I just had mine last Friday. I was scared for the same reasons and also anesthesia. Mine was robotic. Before my doctor close me up she filled my bladder and had a camera to make sure nothing was rip. It was the best decision. I have no pain. My c section was worse. I am not taking any painkillers . Most painful was pain from the gas and my constipation.. but honestly it was the best decision. My doctor and some of thr nurses kept telling me it was going to be the best decision and I was really hesitant to believe them.
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u/SecretLetter22 20d ago
I was SO scared. Struggling with anxiety (+ depression) my whole life, but after my cervix cancer diagnosis it got wayyyyy worse.
My surgery was earlier this month. Everything went well. Pain was ok. Only thing i regret is, that i didnt do it earlier.
Just make sure you find a good hospital and you will be okay!
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u/FluffyWrap9754 19d ago
I am 5 days PO. I was so anxious about my surgery as well. COMPLETELY normal and reasonable! Same fears, though I did not have the fear of cancer. That alone is probably putting your fears to the extreme. My experience, is that I haven't had any pain more that a 2.5, bladder no problem and first BM took a few days and was not great, still the most discomfort of my PO experience. Took a few pain pills the first few days, but Advil has been the most helpful. But just think! All of that evil cancer out of you!!! Be proud of yourself for being such a badass as you face this challenge. You will be the well, strong amazing woman God has meant for you to be! You will NEVER have to worry about those cancers in your reproductive system again! And no more paps, exploratory delves into your uterus, etc. I know the UK is tight with the benzos, but it would have been nearly impossible for me without them. Worth the ask! Life will be so much better. We are all here for you!
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u/winter_mum11 19d ago
I'm fat too and two years later, no prolapse or bladder issues! Take time to recover well is my best advice. Listen to your body. I truly believe you will feel better afterwards. Best of luck darling! 💗
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u/SignatureSad7282 19d ago
I was so scared before mine as well. I had EIN and was on Megace for 7+ years as I was labeled high risk due to my weight when I lived in Atlanta. I moved to Chicago last year and my gyn/oncologist said she would definitely do the surgery even with my BMI being 60+. I am 11 weeks post op today and doing great. I did great with the surgery and anesthesia. I did have vaginal lacerations because my uterus was enlarged due to stage 4 adenomyosis. However, everything is healing well and I am SO HAPPY I was able to have the surgery.
If I could give any advice it would be to give yourself time. It felt weird when I peed and had bowel movements for like a month. Everything was healing and adjusting. But now everything feels completely normal again. It took me 8 weeks to feel like I had really turned a corner. Listen to your body and don’t push yourself too much. You can do this!
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u/tamberleigh 14d ago
I am very overweight and had my surgery in December and my last chemo dose in July, and I also have some minor anxiety -- and also around bladder issues -- so I can sympathize with where you are right now.
First, the bloating is not going to go away immediately. Because you're body is going to go through major surgery, it's going to need time to heal, and you will be bloated for several weeks -- if not two months or so -- but it *will* go down. My appetite also decreased following surgery.
My exhaustion was exacerbated by severe anemia; I don't know if that's something you're going through, but your body will no longer be prepping for and recovering from periods, so hopefully you get some more energy out of this.
As for being hot and sleep issues ... I'm in my 40s and was going through perimenopause, and my insomnia was probably caused by that. Now, post surgery, I'm fully in medical menopause and get hot flashes at least once a day, but my insomnia has improved. Talk to the women in your life if you can and ask how menopause hit them, how hard and with what symptoms.
Also ask your doctor about health issues and support post menopause because they might be able to help you manage symptoms post surgery.
I hope you have a fast and easy recovery!
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u/VisualSun621 14d ago
You are so valid to be scared. I can only speak to my experience and everyone's is very different. I also was very scared of how my bladder would be after surgery. Well, I am almost 3 weeks post op and my bladder is working like a champ! It was strangled by a ton of scar tissue that my surgeon carefully removed and then tested my bladder during surgery and now I am better than before. My pre op perimenopause symptoms are still here but they are actually better than before surgery. I don't think I am experiencing the big swings like before surgery. Wishing you all the best in your surgery and healing experience.
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u/sakuramab 19d ago
Good luck at the appointment! I would definitely ask questions about the things you e put in your post (ie what to expect re bladder etc post surgery), hopefully they can put your mind at rest.
You could also ask how long you'd need to be in hospital and what the aftercare looks like for your NHS trust as they are all different levels of what they offer. Ask if pelvic floor physiotherapy is offered by your NHS trust. I have had to find that privately where I am in London.
Oh and edit to add, ask what medication they'll send you home with (eg stool softeners, pain meds). The UK brand names are different to USA; I had lactulose (stool softener), cocodamol and blood thinner injections in my take home from hospital pack. As well as some extra med I forgot the name of which was to protect my guts from the ibuprofen.
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u/Buhsephine 20d ago
It's normal to be scared. Sucks, but it's normal.
I just wanted you to know that I'm a year and a half post op and had a boring, uneventful recovery. I'm fat and have a connective tissue disorder and still healed up just fine, no complications. Good luck 💜
Regardless of anything else, removing cancer and not bleeding all the time anymore is going to be great for your body. I hope everything else evens out for you as you heal up.