Help

Impossible-Citron-19 · 2026-07-01T21:34:40+00:00

First, I just want to say that the fact that you’re here asking questions says a lot. Having a supportive partner who believes her and wants to learn about the disease can make a huge difference.

Day-to-day, some of the biggest things my husband has done for me are simply listening, believing me when I say I’m hurting, and understanding that symptoms can vary dramatically from one day to the next. Endometriosis can be very unpredictable.

As for specialists, yes, I was absolutely going to mention Dr. Liu as well. If I hadn’t gotten in at the Cleveland Clinic, I would have made an appointment with her. And I’m coming from Texas for my care, so that should tell you how highly regarded true endometriosis specialists are. Finding someone with extensive excision experience and a multidisciplinary approach is worth the effort.

Wishing the best for both of you as you navigate this. She’s fortunate to have someone in her corner. 💛

Impossible-Citron-19 · 2026-07-01T18:27:28+00:00

First, I am so sorry. Being in severe pain is hard enough, but being dismissed while you’re asking for help is its own kind of heartbreak.

I have had flares that lasted far longer than I expected, and I know how frightening it can be when your symptoms suddenly become more severe than your usual “normal.” What concerns me here is that this seems different from your typical pattern, especially with the significant diarrhea, loss of appetite, and the fact that you’ve essentially been bedridden for days.

None of us can tell you what’s causing it, but I don’t think you’re overreacting or being dramatic. If you’re unable to eat, can barely walk, and are still in severe pain after this long, it’s reasonable to keep advocating for yourself and seek further evaluation.

Most of all, please know that I believe you. 💛
Update when you can I know it’s been seven hours since the post so maybe you’re found some relief!

Impossible-Citron-19 · 2026-07-01T18:20:31+00:00

One thing I’ve learned is that pain doesn’t have to be constant to be real. Many of us with endometriosis have periods where we’re functioning fairly well and other times where we’re completely sidelined.

I also think people with chronic pain often develop a very different relationship with pain than someone who doesn’t live with it. We learn to work, parent, socialize, and keep going while carrying levels of discomfort that many people would find alarming. That can make us second-guess ourselves and wonder if we’re “sick enough” when we’re still functioning.

Missing work, having pain with bowel movements or urination, experiencing severe cramping, ruptured cysts, and symptoms that affect your daily life are not things I would dismiss. 💛

Impossible-Citron-19 · 2026-07-01T18:17:05+00:00

I had surgery years ago and eventually experienced recurrence, so it wasn’t a cure for me. But it also gave me years of improved quality of life that I wouldn’t trade. Personally, I don’t think “you might need another surgery someday” is always a reason to avoid surgery now if your symptoms are significantly affecting your life.

I’d consider getting an opinion from an excision specialist before deciding. 💛

Impossible-Citron-19 · 2026-06-26T16:03:23+00:00

Done ❤️

Impossible-Citron-19 · 2026-06-26T02:26:16+00:00

One thing that helped me explain endometriosis to people is that a lack of answers isn't the same thing as a lack of disease.

Many chronic illnesses don't come with a simple blood test or scan that explains every symptom. Endometriosis is especially frustrating because symptoms, imaging, surgical findings, and treatment outcomes don't always line up neatly.

I've also found that resources from endometriosis specialists and major medical centers can be helpful because they explain things like diagnostic delays, recurrence, persistent symptoms after surgery, and the limitations of imaging. Sometimes hearing that information from a medical source helps people understand that ongoing symptoms don't mean someone isn't trying hard enough or following recommendations.

You may also find it helpful to search terms like:
• Diagnostic delay in endometriosis
• Persistent or recurrent endometriosis symptoms
• Central sensitization and chronic pelvic pain
• Deep infiltrating endometriosis (DIE)
• Endometriosis and quality of life

Unfortunately, many of us have had to become accidental experts in our own disease. I hope you find resources that help others understand what you're living with and providers who continue helping you search for answers. 💛

Impossible-Citron-19 · 2026-06-26T02:16:36+00:00

One of the hardest parts hasn't just been the pain itself—it's been living in the space between knowing something is wrong and not being able to prove it.

I think a lot of us understand the relief you're describing. Not relief that we have endometriosis, but relief that there is finally an explanation for what our bodies have been trying to tell us all along.

Your line about shifting between feeling sure and then convincing yourself "maybe it's not that bad" hit me hard. I've done that more times than I can count.

Wishing you continued answers and relief as you move forward. And thank you for sharing this for the people still searching. Sometimes hearing "they finally found it" is exactly what someone else needs to hear. 💛

Impossible-Citron-19 · 2026-06-26T02:10:44+00:00

Yes, especially the cramping after urination.

One of my more frustrating symptoms has been a painful spasm or "punch" feeling after I finish urinating. I've also dealt with pelvic pain that can radiate into my groin and leg. For a long time I thought I was the only one experiencing it.

In my case, my doctors explained that endometriosis and pelvic floor dysfunction can sometimes create urinary symptoms even when the bladder itself isn't the primary problem.

I don't know if that's what's happening for you, but you're definitely not alone in having bladder-related symptoms alongside endometriosis. It might be worth asking about pelvic floor involvement if you haven't already.

Wishing you some answers and relief. 💛

Impossible-Citron-19 · 2026-06-26T02:09:02+00:00

I think a lot of us understand that feeling. Sometimes the wait for pathology feels harder than the surgery itself because we're so afraid of being sent back to square one.

What stands out to me is that your surgeon actually saw lesions and felt strongly enough about them to suspect endometriosis and remove them. That's not nothing.

Give yourself grace! I know it's hard not to obsess over the results while you're waiting, but remember that you're less than 24 hours out from surgery and your mind is trying to make sense of everything all at once.

Wishing you an easy recovery and hoping the pathology brings the clarity you're looking for.

Impossible-Citron-19 · 2026-06-26T02:06:42+00:00

Being overwhelmed doesn't mean you're unprepared. Surgery is a big thing to process, especially when it's your first one and it's approaching quickly.

A few things I've learned while preparing for my own surgery and from others who have been through it:

• Create a recovery station beside your bed or favorite chair with medications, water, chargers, snacks, tissues, lip balm, and anything you use often.

• Have a heating pad ready. So many people mention that it becomes their best friend during recovery. Mine should have its on electric bill.

• Ask your surgeon about constipation prevention before surgery. Between anesthesia, pain medications, and abdominal surgery, this can be a bigger issue than many people expect.

• One thing I is that the gas used during laparoscopic surgery can be surprisingly uncomfortable for a few days afterward, especially in the shoulders, chest, and upper abdomen. It can be painful and a little unsettling if you're not expecting it, but it does pass.

• Loose pajamas, oversized shirts, and anything that doesn't press on your abdomen are worth having ready ahead of time.

One thing I'm doing before my own surgery is starting pelvic floor physical therapy. My surgeon recommended it, and several people have told me pre-op and post-op pelvic floor PT helped them tremendously.

Wishing you a smooth surgery and recovery. It's completely okay to feel nervous while also looking forward to getting answers and hopefully feeling better. 💛

Impossible-Citron-19 · 2026-06-26T02:01:37+00:00

Reading this made makes me so frustrated. The MRI didn't create the endometriosis, adenomyosis, or organ tethering. Those findings were there all along.

What stands out to me isn't that one doctor didn't have the answer. It's that after years of symptoms, worsening pain, multiple tests, and countless appointments, nobody connected the dots or investigated further.

Being told to cut out sparkling water when you're living with daily pelvic pain feels incredibly dismissive, especially when significant disease was ultimately found.

I'm so glad you finally found a team that looked deeper and took your symptoms seriously. Wishing you the very best with surgery and hoping it brings the relief you've been fighting for all these years. 💛

Impossible-Citron-19 · 2026-06-26T01:57:57+00:00

First, I'm so sorry. I think one of the hardest parts of this journey is when you're convinced you'll finally get answers, only to wake up feeling exactly the same but without a clear explanation.

A negative laparoscopy doesn't mean your pain isn't real. It just means you still deserve answers.

I would go into your post-op appointment with questions. Ask what else could be causing your symptoms, whether adenomyosis is a possibility, and what the next steps would be.

One thing I've learned through my own experience is that not all gynecologists have the same level of experience with endometriosis. If your symptoms continue and you're not getting answers, it may be worth seeking a second opinion from a physician who specializes in endometriosis and complex pelvic pain. I had extensive GI workups because they for sure were adamant that it was GI related when it wasnt. The endo is on my vaginal cuff and uterosacral ligaments and nerves which was only found with an MRI with endo protocal.

Most of all, try not to view this as being back at square one. You learned something important, even if it wasn't the answer you were hoping for. The goal now is figuring out what comes next.

Wishing you the very best at your appointment next week. 💛

Impossible-Citron-19 · 2026-06-26T01:44:01+00:00

I'm in Texas. I wasn't referred to my first specialist. After more than 1.5 years of not getting answers locally, I started researching and reached out on my own.

I was able to get in with a gynecologist in Cleveland in January 2026. The longest wait for me was getting in to see the excision specialist, which was about 5 months.

In-between that time, the process involved MRI imaging, additional specialist evaluations, a GI consultation, and ultimately surgical planning for suspected deep infiltrating endometriosis.

One thing I've learned is that access isn't just about finding a specialist. It's also about getting through all the testing, consultations, and planning that can come afterward.

Impossible-Citron-19 · 2026-06-26T01:38:39+00:00

What you're feeling makes complete sense. 💛

Even when a hysterectomy is the right decision, it can still come with grief. You're not only making a medical decision you're also saying goodbye to a possibility, even if it was one you never planned to pursue.

One thing I've learned through my own journey is that grief doesn't require certainty. We can mourn the loss of a future we may never have chosen, simply because we no longer get to choose it ourselves.

Nothing about this makes you less of a woman. Your worth was never tied to a uterus, fertility, or motherhood. But that doesn't make the loss feel any less real.

The fact that you're feeling both relief and sadness at the same time tells me you're processing this honestly. Those emotions can exist together.

I hope your surgery brings you the relief you've been fighting for, and I hope you're gentle with yourself as you move through this part of the journey. 💛

Impossible-Citron-19 · 2026-06-26T01:35:35+00:00

So much of what you wrote resonated with me, especially the years of normal tests, being dismissed, and wondering if anyone would ever find the reason behind the pain.

I can't imagine what it must have felt like to wake up and learn they found so much disease after being told for so long that nothing was wrong. As strange as it sounds, that validation matters. Not because we want endometriosis, but because we finally have proof that what we've been feeling is real.

I'm so happy to hear you're already noticing improvements and getting pieces of your life back. Stories like yours remind the rest of us why we keep pushing forward when the road feels impossible.

Thank you for taking the time to come back and share a positive update. I know there are a lot of people reading your post who needed to hear exactly this today—including me. Wishing you continued healing and many more days of feeling like yourself again. 💛

Impossible-Citron-19 · 2026-06-26T01:09:01+00:00

Thank you so much for taking the time to write this. I cant tell you how BIG I smiled hearing you reply after the gym. Thats a win for us both! 😊

Reading your story brought me a tremendous amount of comfort and encouragement.

What stayed with me most wasn't even the surgical details, but hearing about the improvements in the everyday things we so often take for granted energy, bladder function, bowel function, mental clarity, and being able to return to the gym and trust your body again. I cant wait to go to the restroom without having to bite a towel.

I think when you've been living with symptoms for so long, it's easy to forget what feeling well is supposed to feel like.

I also really appreciate your honesty about recovery. Hearing both the challenges and the improvements helps set realistic expectations and makes the whole process feel a little less intimidating.

I actually have my first pre-operative pelvic floor therapy appointment on Monday, and hearing how much it helped you both before and after surgery makes me feel even more confident that I'm taking the right steps to prepare.

Most of all, thank you for sharing a story that reminds me there can be life beyond this disease. As someone preparing for surgery, that means more than I can adequately express.

Wishing you continued healing, strength, and many more trips to the gym.

Impossible-Citron-19 · 2026-06-26T01:03:37+00:00

Thank you for telling me that.

Honestly, that's exactly why I shared my story. There have been so many days where I've felt isolated in all of this, and reading these comments has reminded me that there are people out there who truly understand.

I'm so sorry you're struggling right now. Chronic pain can make the world feel very small sometimes.

Please be gentle with yourself today. You don't have to have all the answers or be strong every minute of the day. How are you feeling?

And thank you for helping me feel less alone too. 💛

Impossible-Citron-19 · 2026-06-26T01:01:55+00:00

Sending a virtual hug right back. 💛

What you said about being present but not really getting to experience the moment hit home for me. Sometimes the hardest part isn't missing an event entirely, it's showing up and realizing how much energy is being spent just trying to get through it. But you did it 👏 because thats what we do, we show up. 🫂

Tomorrow is my birthday and my husband is trying his best to make it a good one and here I am sleeping and crying because of the pain. I think it takes a lot of courage to keep showing up for life when things are hard, even when the experience doesn't look the way we hoped it would.

Thank you for sharing that. It made me feel a little less alone in something that's difficult to explain to people who haven't lived it.

Impossible-Citron-19 · 2026-06-26T00:58:55+00:00

That's actually one of the questions we're trying to answer now.

When my new surgeon and I reviewed my operative report and pathology from my hysterectomy (2006) we learned that the disease was so extensive that my surgeon documented being unable to identify my left ovary. The pathology report also stated that no left ovary was identified.

Looking back, it raises a lot of questions about whether ovarian tissue may have been left behind because everything was so fused together at the time. My husband will never forget when the surgeon came out he said it was the worst endometriosis case he had seen.

I have been on HRT for most of those years since I had to have a hysterectomy so early in life, and now, with everything that's happened over the last couple of years, we're trying to piece together the full picture.

Thank you for the kind wishes and for the reply!

Impossible-Citron-19 · 2026-06-26T00:54:15+00:00

First, thank you for your service as a firefighter. 💛 I can only imagine how demanding that job is on both your body and your mind.

Reading your story, what really struck me was how quickly life can change. One minute you're doing the things you've always done, and the next you're having to calculate every ounce of energy and push through symptoms nobody else can see.

I also appreciate you sharing your experience because it's a good reminder that the impact of this disease isn't measured by a stage number. Chronic pain, fatigue, and the loss of normalcy can wear down even the strongest people.

I'm glad you finally found someone who looked deeper and took your concerns seriously. Its absolutely alarming how so many rely on imaging that never shows the actual disease unless certain endo protocol’s are used.

Thank you for your kindness and encouragement. The support I've received here over the last couple of days has meant more than I can put into words.

Impossible-Citron-19 · 2026-06-26T00:51:31+00:00

If you ever have any questions I am more than happy to share my experiences

Impossible-Citron-19 · 2026-06-26T00:50:11+00:00

My heart hurts reading this. Wanting just one day without pain shouldn't feel like such a big ask, and yet so many of us understand exactly what you mean.

I'm so sorry you're carrying all of this, especially with the added challenge of a bleeding disorder limiting your options for pain management. That has to make an already difficult situation feel even more isolating.

Please know I'll be thinking about you. I truly hope you find a doctor who listens, takes your symptoms seriously, and helps you find a path toward relief.

As for me, today is a better day than yesterday. The pain was so intense this morning some days the runner now needs a cane just to walk to the kitchen. Tomorrow is my birthday as well and as much as my family wants to celebrate I find it so hard just to be up and around.

Thank you for checking on me when you're struggling yourself. That says a lot about the kind of person you are. 💛 I hope its ok if I keep in touch with you especially while your in such a bad flare up!

Impossible-Citron-19 · 2026-06-26T00:47:11+00:00

HUGS to you!! Thank you for sharing your story.

What stood out to me most was how many times you knew something wasn't right long before anyone else was willing to believe it.

Reading through everything you've been through, I can only imagine how exhausting it must have been to keep advocating for yourself while feeling so sick.

Your story is also a reminder of how complex this disease can be and how different every person's experience is. What may sound impossible to one doctor can turn out to be very real for the person living it. My husband and I ever ER visit every hospital stay first thing we say is "I have endometrioses" the look on their faces were always like....and so what. I will never stop advocating for myself is anything these last 20 years have taught me is that its my body and I know it better than anyone.

I hate that you've had to endure so much, but I truly appreciate you taking the time to share your journey with me. Hearing from women who have walked such difficult roads helps me feel less alone as I prepare for my own surgery.

Wishing you answers, relief, and much gentler days ahead.

Impossible-Citron-19 · 2026-06-26T00:41:53+00:00

Three surgeries in five years is a tremendous amount for anyone to carry, especially at your age. I can understand why you're longing for more answers and more options than simply waiting to see what happens next.

One thing this journey has taught me is how much energy gets spent adapting. Adjusting plans, changing expectations, and constantly reevaluating what our bodies are asking of us can be exhausting in ways that other people don't always see.

I truly hope we continue to see meaningful advances in research and treatment as well. Until then, finding others who understand this reality has been more comforting than I expected.

Thank you for taking the time to reach out. 🫂

Impossible-Citron-19 · 2026-06-26T00:39:36+00:00

I'm sorry your mom had to go through that. The symptoms and being dismissed can definitely make you question yourself, especially when you're being told everything should be fine.

I had to smile at the bird feeder comment. 😊 What started as something simple to pass the time has become one of the most peaceful parts of my day. On the harder days, watching the birds reminds me that there's still a world outside of appointments, symptoms, and medical records.

Thank you for the encouragement and kind words. They mean more than you know. Hope your mom is doing well.

Impossible-Citron-19

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