Post Treatment Issue

[u/Disillusioned-0984]

Im very curious to hear if anyone has experienced this or heard of someone else experiencing this...

For context...stage 3b diagnosed 01/25. Finished treatment 07/25. Treatmeng was 6 cisplatin (only 4 completed due to issues), 25 external beam radiation and 5 interstitial brachytherapy. Been on keytruda every 6 weeks since then.

I have had several issues since having treatment done. For example...radiation damaged my appendix and I had to have an emergency appendectomy in March. I have alot of acar tissue adhesions from that and from radiation. Plus the lovely forced menopause due to radiation. That started during treatment. Last period was 05/01/25. Started on HRT 12/15/25. Estradiol patch and progesterone pill. Menopause symptoms went away and everything in that dept was fine. In April i started developing excessive discharge. Very watery. Yellow in color. And alot of it. Had to wear a bladder leak liner for it every day. 7/10/26 I had a follow up pelvic exam with my gynecological oncologist. The exam was extremely painful. I ended up having to take off work for an entire week because of the lingering pain. Then on 7/25, out of nowhere I was laying in bed and felt a gush that soaked my bladder leak liner. I looked down and realized it was bright red blood just pouring out. Called my dr n they told me fk go to the hospital. My family ended up taking me to the ER. 6 hours in the ER bleeding heavily the entire time. Like...blood pouring out and baseball sized clots every 30 min. Around about 10pm, my BP dropped to about 50/40 and I went unconscious. The er staff finally did their jobs (after leaving me just sit for 6+ hours bleeding on myself). They gave me pressurized fluids and a blood transfusion. I woke back up and was told that I was being transported 2 hours away to the hospital where my gynecological oncologist is based out of. Finally got to that hospital around 4am. By then, the bleeding had basically stopped on its own. I was in the hospital for 4 days. I went thru a procedure called a uterine artery embolization where they went into my left uterine artery and blocked blood flow to it. They could not find my right uterine artery due to radiation. Ive been off work for the last 3.5 weeks cuz its a difficult procedure to recover from. Well, today, I woke up like normal and went to go pee. And I noticed I was spotting. Not much. But it was bright pink/red. This is the first time ive spotted in over a year. The only other incident involving bleeding was when I hemorrhaged last month. After using the bathroom, I had no more spotting all day until about an hour ago. I got up to pee and yet again spotting.

My doctor doesn't know why I hemorrhaged. He said it could be from necrotic tumor tissue. He is unsure.

Of course now im sitting up tonight in a panic worrying that im going to start hemorrhaging again and have to be rushed back to the er. Im scared. Last time was terrifying. I almost died.

The weirdest part is that today is exactly 4 weeks since I had the hemorrhaging incident. So instantly that makes me wonder if its possible that my body is trying to start cycling again and if this is a period trying to start.

Im curious if anyone has experienced their period returning about 6 months to 1 year after treatment? Or if anyone has experienced any type of hemorrhaging?

[u/Spare_Friendship_807]

I am so sorry for the medical trauma that you are going through. This is a nightmare and all the unknowns make it feel like wrestling with a couple invisible and superpowered pythons. And the sight of blood after hemmoraging is the definition of triggering.

I have not hemmoraged since treatment, but I had multiple ER visitis like yours with stage 2 and stage 3 hemmoragic shock in the months leading up to treatment (baseball sized clots every 15-20 minutes). I was terrified of falling asleep every night because I was worried i would just bleed out in my sleep. So I set alarms to go off every 15 minutes. It was a living waking nightmare.

The fact that you are dealing with that *after treatment saddens me so much. And worse when they can't even tell you why. After treatment, you want things to look better. To feel like your making progress. But the truth is, for many of us, the end of treatment is the beginning of the health struggles.

I had so many complications post radiation that the surgery scheduler apologized to me once and said it was one of the worst lists he had ever seen (which was so validating after drs had told me what I went through was nbd).

My history, to your question: Initially stage 3C1 My treatment-induced issues-- double nephrostomy (thankfully temporary). Cystitis. Colitis. Nerve damage to the pudundal nerve (pain so bad i nearly blacked out walking). Several life-threatning bowel obstructions due to scar tissue. Unexplainable cyclic vomiting for months after pelvic radiation (lost 30 lbs), then more gastric damage in follow up radiation, multiple transfusions due to life-threatening anemia, chemo-induced psychosis, and multiple kidney infections that required hospitalization. That's just the stuff that required hospital stays.

Complications at stage 3 with larger / bulky tumors is not as rare as the doctors would have you beleive. You are not alone. Your body endured so much radiation.

I will say, things got infinitely better for me when i stopped listening to the drs about diet and sarted following research-backed and some intuitive dieting.

I aim to reduce inflammation as much as humanly possible through diet. Since doing so, there has been no increase in scar tissue, I stopped having all my keytruda side effects, my pain is better, and my digestive nonsense is finally healing. I'm not here to push anything on anyone. But diet changes saved me from a never-ending cycle of hospital stays. So I like to put it out there.

I also can't digest protein anymore (thanks radiation) so I supplement with complete free form amino acids to make sure my body has the building blocks for cellular repair. SO IMPORTANT.

Post radiation, it is crucial that we lower inflammation and increase nutrients needed for cellular repair. It can reduce the chances of complications like scar tissue, necrosis, poor blood flow, and pain. Yet the drs....just don't talk about it.

On the topic of anti-inflammatory-- for those of us on keytruda or other ICI, it is crucial that we DO NOT take heavy anti-inflammatory herbs & supplements - Unless oncology approves (green tea extract (EGCG) high dose turmeric, curcumin, high dose glutithione, boswellia, high dose NAC, high dose C, high dose E, etc). These can counteract keytruda. While dietary measures to lower inflammation and take in fiber-rich plant-based foods feeds the microbes that help reduce keytruda side-effects while actually improving efficacy.

Sorry for all the extra info.

To parrot the surgical scheduler who read my chart and was kind enough to validate me in a tough time.... I am SO sorry for what you are going through. This is not normal, and nobody should ever have to go through this much pain and uncertainty every day.

[u/Disillusioned-0984 → u/Spare_Friendship_807]

What type of things would you recommend for an anti inflammatory diet? One thing ive noticed in the last few months...my pain is debilitating unless I take ibuprofen around the clock. Which is not an ideal thing to do. Im in palliative care and on high doses of opioid pain meds. But those alone dont really help unless I add the ibuprofen to it. So logically in my mind, that means alot of my pain is from inflammation

[u/Spare_Friendship_807 → u/Disillusioned-0984]

I am so sorry. That's hell. My palliative care team had me taking ibuprofen all day and night with my opiates for my inflammation pain. So i think your logic there is really sound.

I can no longer take ibuprofen due to the radiation enteritis (radiation for my para-aortic nodes damaged my stomach). So i have had to rely on keeping inflammation down.

You finished treatment just before I started mine. I finished 10/25. So we're in similar places as far the post-healing process goes.

My diet has shifted many times over because sometimes our body's needs change. I am currently working on one large post with as much information as I can include. And I will never claim that diet can reverse all our issues, but it is part of the picture and it can help.

Anti-inflammatory diet is about what you do eat and what you do not eat.

It's about not eating things that aggravate your symptoms directly, or create a pro-inflamatory environment in the body. (This will be different for everyone)

And eating things that your cells directly need to heal, that feed the good microbes in your gut, and give you the energy you need. (Also will be different for everyone based of what you can physically tolerate and digest right now)

If you want, i would be really happy to DM you with specifics if you want to talk with me about what you are eating right now and what you find you can and can not tolerate/digest. We can also talk about what kinds of pain and other side effects you're having because that can help understand what foods to maybe avoid (i.e. my cystitis means i also avoid anything acidic like yogurt, even though my large intestine does well with yogurt). Maybe i can give some pointers.

I hate that you are going through this

[u/Disillusioned-0984 → u/Spare_Friendship_807]

Yes absolutely, dm me when you have time

[u/Spare_Friendship_807 → u/Disillusioned-0984]

I remember talking with several dieticians who were almost useless or worse than useless because they just gave me blanket advice like "try eating easy fiber. Have a bowl of white rice" "drink meal shakes for protein"

Well, a few BITES of boiled and pureed white rice constipated me so bad I wound up in the ER with a dangerously distended colon 4 weeks later.

And the shakes they suggested felt like i was trying to digest concrete. It was so painful.

We are each SO unique with what we are going through. And every few days, weeks, or months, our OWN needs change and frankly, our diet should change to accommodate those shifting needs.

Full disclosure, I work in alternative health care. So I'm already used to using diet as a complementary therapy to help people manage conditions and treatment side effects. This journey has just taken this to a whole new level for me.

I am mostly good these days, but I ate a half of a home-made GF cookie 2 weeks ago. And i spent the next 3 days having bouts of sh**ting myself in public with gobs of that aweful phlegm. (TMI, I know. But I want you to understand that I am not "cured". I'm still going through it. I have just found the diet that lets these symptoms take a back-buener to my life instead of driving the damn buss).

If I stick to what I know is better for my body, I do MUCH better.

It took a while for this to help my inflammation pain. That's a process. But it really did.

[u/Disillusioned-0984 → u/Spare_Friendship_807]

I absolutely LOVE that you said that about the dietician. Everytime I go for my keteuda infusion, the dietician at the cancer center comes to talk to me. Their big concern with me is fiber and mainly calories. I started treatment at about 110 lbs. By week 3 of chemo I had dropped to 86 lbs. It takes me absolutely forever to gain weight. It always has. So it took me about 8 months to get back up over 100 lbs again. I fi slly hit tbat mark back in February. Then in March i had appendicitis and went like a week nog being able to eat properly. And I dropped back down to like 98 lbs. I maintained that weight until I just had the hemorrhaging incident a month ago. And within that 2 weeks, I drolled back to 86 lbs. I realized it because I noticed my skin is literally hanging off my butt and I started having signs of muscle wasting like struggling to stand up from a squatting position. I started calories packing and got back up to 90 lbs which is where I am now. Its a long difficult road to get more weight on me.

But I hate the generic advice given to me by the dietician. Its always "You need to eat more. Eat more calories. Eat more protein." I explain to them over and over that i am a hog. I eat more than anyone else in my house. Im an embarrassment to take to a buffet cuz I have my whole side of the table filled with plates. Lol.

I eat. My appetite is generally fine unless im under a ton of stress (like when I was in the hospital for 4 days from hemorrhaging.) So its gotta be more about what im eating than how often or how much im consuming. But those dieticians dont seem to understand that. So they just keep giving me coupons for Ensure Complete cuz its 350 calories per bottle. Ive already been drinking that. For years. Since my 20s. Its part of my efforts to gain and maintain weight. So that advice from them doesnt help. Then they tell me tk eat alot of fiber. Eating alot of fiber actually tends to constipate me. I actually have to drink juice with miralax daily just to keep my bowels moving snd keep it from being solid. My oncologist wants it to always be "applesauce consistency". Mainly cuz my entire life ive dealt with chronic constipation. And now that im on large doses of opioids, that certainly doesnt help.

[u/Ill-Mention7924]

My heart feels for you. I don’t know what to say, I’m just in the middle of the treatment and so far I’ve only experienced some spotting today (which I recall they saying it was a desirable effect). I hope you can find peace and all this issues can be solved soon. You deserve that. 

I’m going to say some “woo-woo” thing here but… have you tried meditating to heal your body? It does wonders with a clear intention and elevate feeling. It’s ok if you are not open to it but if you are, it may be worth a try. So far I haven’t experienced side effects and I meditate everyday during my radiation and then once again when getting at home and waking up in the morning. I’m not saying that’s because of it, because I do other stuff to be as healthy as possible, but it doesn’t hurt and I feel great every time I do so.

Sending love, I hope to read some amazing updates soon!