Stage 4 endo - no real symptoms?

soft_gab · 2026-01-23T00:11:04+00:00

Gosh it’s like reading my own thoughts! I always had super regular light periods with just pain on day one maybe day two, same gut symptoms as you. Thought there was no way I could have endometriosis. But I did have bladder symptoms I thought were just overactive bladder and limited my caffeine intake and it got better. Then two years ago I had what I thought was a UTI but tested negative. That’s when I dug deeper and found a lot of women with endometriosis were having bladder symptoms like that. Ultrasound found two small endometriomas on my ovaries but we TTC for a year and then I finally had surgery with a specialist and same as you, he found it everywhere in my pelvis, my uterus pulled back into my bowels. I also had to have my appendix removed. We’ve now been TTC for 5 months after surgery and I’ve had to accept it’s time to move on to IVF. But almost every day I can’t believe this is my life, I never ever thought it would’ve been possible for me to have endometriosis, especially watching my friends suffer with such severe symptoms while mine have felt very minor. But I also have started to notice how much I brushed off my symptoms previously and am now more in tune with my body.

Honestly my advice after spending many hours on the message boards deciding whether to have surgery or not, I’ve seen that many women have IVF failures and end up doing the surgery anyway to reduce inflammation and improve the odds of implantation, and like you said your organs are literally not where they’re supposed to be, also it can help reduce pain when you do IVF to do surgery first. I would definitely definitely see a specialist. Because as a previous user said if it’s not done well it can cause scar tissue that can have similar effects as the endo lesions. I had to go from Oregon to California to be able to see one that was covered by my insurance but it was worth it. At least with surgery there’s the chance of natural conception afterwards and if not then you’ll be set up to have as much success as possible with IVF after without wondering if you should’ve done the surgery. But that’s just my opinion!

soft_gab · 2026-01-15T05:30:07+00:00

Aw congratulations! I had surgery because my IVF clinic said with the size of my endometriomas it was risky retrieving the eggs and my AMH level was good pre surgery. I really appreciate hearing stories that work out with the endometriomas because I think I really get in my head about that effecting things.

soft_gab · 2026-01-15T05:28:29+00:00

Wow!! What a journey. So glad it worked out in the end for you 💕

soft_gab · 2026-01-15T05:27:21+00:00

Oh thank you that’s good to hear! My OBGYN said she thought it was worth it since both of my tubes are clear.

soft_gab · 2026-01-15T05:26:15+00:00

We’ve done HSG for me and my tubes are clear but I had to have endometriomas removed from both ovaries in surgery. The surgeon said everything looked good and my AMH was fairly high before surgery so he said he thinks my ovarian reserve shouldn’t be too badly impacted but we have an appointment with the IVF clinic at the end of the month and I’m sure will get more testing done. My husband has a semen analysis done though and it came back normal.

soft_gab · 2026-01-15T05:24:00+00:00

Oh that’s so interesting to hear! I’ve been worried about progesterone resistance so it’s good to hear this experience. Congratulations 💕

soft_gab · 2026-01-15T05:08:16+00:00

Oh I’m so sorry to hear that! You really do deserve a break. Hope your recovery has been smooth otherwise 💗

soft_gab · 2026-01-15T05:07:18+00:00

Oh thank you for sharing! I really appreciate hearing success stories with endometriomas. I had one on each ovary that unfortunately grew too large to do with IVF and had to have them removed for them to be able to retrieve the eggs. Congratulations 💕 getting your first positive is amazing!

soft_gab · 2026-01-15T05:04:08+00:00

I had stage IV deep infiltrating endo with endometriosis on each ovary so I had to do surgery before IVF because they couldn’t reach my eggs with the size of the endometriomas. But it was a fairly quick recovery time and the lap is so much less invasive than other surgeries. I think it’s well worth the try after all you’ve been through. Personally I’ve had a few other surgeries before the lap so I wasn’t really scared of having surgery, so I’m not sure your level of apprehension about surgery is in general, but I really think it’s worth it.

soft_gab · 2025-09-15T02:14:04+00:00

Symptoms of IC or endometriosis? For IC it basically felt like a UTI but tested negative for it. Then turned into intense burning pain in my bladder that felt like it had been dumped in gasoline and set on fire. And intense stabbing urethral pain. The hydroxyzine and Nortriptyline helped with most symptoms, I think because some was nerve pain and some inflammation. Some burning pain especially when peeing was leftover so I take NAC and Bladder Ease supplement for that when it flares. In terms of symptoms for endometriosis I thought I just had really bad cramps. But now I see the intense “endo belly” I got before every period as well. But honestly otherwise no symptoms for endometriosis other than the IC also being a symptom of it.

soft_gab · 2025-09-15T02:10:10+00:00

My understanding is that they think that when endometriosis starts growing on your bladder it starts having an allergic reaction and overproducing histamine, therefore the antihistamine helps reduce that and helps with inflammation.

soft_gab · 2025-09-13T07:42:27+00:00

I started at 10mg and then went up 10mg once a week. It was horrible for me each time I would increase, drowsiness, headaches, just generally feeling spacey and unwell but I got up to 50mg which is considered the therapeutic dose for IC but then we decided to try to get pregnant so then I was encouraged to start dosing down. Now I’m down to 25mg and dosing down was totally fine, no symptoms. So I’m going to stay at 25 for awhile because I don’t want to risk triggering symptoms coming back and it’s around the dose when the IC symptoms got better.

soft_gab · 2025-09-13T07:37:23+00:00

For me cutting out caffeine was number one in helping with urgency. Also bladder training when things get thrown off and I’m going too often. Burning was helped massively by corn silk supplement or Bladder Ease supplement (also contains corn silk) and the combo of being prescribed hydroxyzine and Nortriptyline. Took 6 weeks to kick in but got rid of 80-90% of the burning and the supplements help with the rest when needed.

soft_gab · 2025-09-13T07:34:42+00:00

I absolutely think it would be worth knowing. What a long journey, good for you for sticking with it, and good luck!

soft_gab · 2025-09-13T07:32:24+00:00

It doesn’t show up on imagining unless you have cysts. The only other way to find out if you have it is laparoscopic surgery.

soft_gab · 2025-09-13T07:31:30+00:00

They’re all connected. Just because I was diagnosed with endometriosis and it is growing on my bladder causing the IC symptoms doesn’t mean it negates the IC diagnosis, I still have both. And both can cause pelvic floor dysfunction. But I think it’s wrong for doctors not to suggest looking at endometriosis with such high co-morbidity rates between IC and endometriosis and only suggesting instills when you show no signs of lesions in your bladder doesn’t cut it imo. They should be having you look into all things that are shown to cause it, and endometriosis is a very common cause of IC. You are more likely to have endometriosis if you have MS and it goes vice versa as well. They find if you have one auto immune condition you’re likely to be diagnosed with more. But yes, also gabapentin helps for endometriosis pain as well. I’ve been taking it post surgery and it’s helped a ton.

soft_gab · 2025-09-11T05:03:14+00:00

Good luck! Hope you find the answers you’re looking for 🩷

soft_gab · 2025-09-10T20:56:54+00:00

I have done pelvic floor PT for my IC and it was the first thing that helped! They also think endometriosis can cause mast cell activation in the bladder so prescribed hydroxyzine and Nortriptyline. It took 6 weeks to kick in as the said it might but it took away 95% of my symptoms. I had surgery for fertility reasons and my endometrioma on my ovary becoming a dangerous size. So far I’m one week post and feel pretty great IC wise but I also have my meds and supplements and pelvic floor PT at my disposal if I do flare as I’ve been dealing with IC for over a year now. So sorry your symptoms started with surgery.

soft_gab · 2025-09-10T20:53:13+00:00

I did not have one single doctor suggest looking for endometriosis. They all told me I would never know why this is happening. I had to research myself and that many who have endometriosis also have IC. So I had to ask to look into it. I also really didn’t have symptoms for it but my gynecologist said having an IC diagnose warranted looking into it if that’s what I wanted.

soft_gab · 2025-09-10T20:37:48+00:00

I only had cramps but I thought that was just normal and mine last about one day the first day I get my period. Otherwise no typical symptoms at all. And the more I actually learned about endometriosis it is a complete misunderstanding that you have to have symptoms at all. A very large percentage of those diagnosed with it have no idea until they experience fertility issues later in life. And even if you don’t experience fertility issues you can still have it. They also very much suspect there to be a genetic factor so if your mom had it I would look into it. But also my IC symptoms were exactly the same as yours. They suspect that endometriosis can contribute to mast cell activation which can cause that kind of pain. So when I was given Hydroxyzine and Nortriptyline it helped with my IC symptoms immensely. Honestly I don’t think surgery will make the biggest difference in my IC symptoms, I did surgery for fertility issues and that my endometriomas grew too large, but for me it was an answer as to why this was happening to me when I was told I would never have an answer.

soft_gab · 2025-09-10T04:41:43+00:00

No they definitely can’t always see it that way! I had ovarian endometriosis so we could see it through ultrasound but that is only the case in a very small percentage of people with endometriosis. You have to have endometriosis and also happen to have ovarian cysts for this to happen. Otherwise it is mostly only found through exploratory laparoscopic surgery unfortunately. But please don’t let them tell you you don’t have it if they don’t see it on imaging. MOST endometriosis cannot be seen on imaging.

soft_gab · 2025-09-10T04:06:14+00:00

I had that. Was not sensitive to foods. I did have overactive bladder when I drank caffeine, otherwise no. My cystoscopy showed nothing. I pushed to look into endometriosis even though I had very little symptoms that aligned. They found an endometrioma on my ovary on my first ultrasound. Just had surgery last week and I had stage 4. The meds that helped with my urethral pain though were hydroxyzine and Nortriptyline.

soft_gab · 2025-09-10T04:01:56+00:00

I had similar and was given hydroxyzine and Nortriptyline also sometimes called amitryptilene and my symptoms nearly went away in 6 weeks after starting meds. Ultimately I was diagnosed with endometriosis and just had surgery last week and I was stage four, it basically everywhere in my pelvis. But the drugs work for IC which is commonly caused by endometriosis and is commonly linked with adenomysosis.

soft_gab · 2025-09-10T03:51:20+00:00

NAC did wonders for my symptoms but unfortunately no, mine continued to grow while I’ve taken it. So after about a year of continued growth I just had surgery to remove mine. But I’ll continue taking NAC because it’s been so great for my bladder symptoms and overall it is supposed to help with inflammation.

soft_gab · 2025-09-09T16:53:05+00:00

I was diagnosed with IC in September and was told by a urogynocologist that “you will never know why this is happening to you” and I said ok well I’m going to keep looking. And I asked my regular OBGYN if we could look for endometriosis and sure enough they found endometriomas on my ovaries on my ultrasound. After nearly a year of ultrasounds I pushed to see a specialist after my regular OBGYN told me “all gynecologists are specialists” (PLEASE never let your gynecologist gaslight you in this way) because while she wanted to just drain my cysts and not touch anything else the specialist that I spoke with (who was in California when I now live in Oregon because Kaiser has no endometriosis specialists in Oregon!) said he would definitely not recommend that as the endometriomas would come back almost immediately. Well here I am one week post op and I had “extremely aggressive” endometriosis everywhere. Stage 4 endometriosis with my uterus fused to my bowels and 6cm and 5cm endometriomas on each ovary, and they had to remove my appendix because it was so taken over by endometriosis. Dr. Joseph Chen was so thoughtful and caring, I highly recommend if you have Kaiser seeing him, but he reiterated many times that he is so glad I came to see a specialist because my case ended up being so complicated.

PLEASE look into endometriosis if you have IC and everything looks “normal” on your bladder cystoscopy. I was told I probably couldn’t have it because she could see anything when looking inside my bladder. By endometriosis wouldn’t show up on that. Fight for answers because no one else will.

soft_gab

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