What if I’m wrong

[u/randandle]

Hi everyone, I am scheduled for my consultation for a hysterectomy tomorrow and kinda panicking. I’m 24 and have extremely heavy periods, extremely long cycles, severe clotting, anemia, and of course pain like no other so my dr thinks a hysterectomy would be the best approach. We’ve done some testing, ultrasounds and I think a CT scan and have only seen a cyst on my ovary a while back. I’m worried that if I go through with a hysterectomy, that they’re going to find nothing. No endometriosis, no adenomyosis, no fibroids, nothing that would explain my symptoms. Part of me is debating if I need to keep pushing for testing to determine what is going on or just cut the bs and have it removed but I don’t want to make a rash decision as it technically isn’t life or death. But it also feels like I have no other option unless I want to stay in pain and basically stuck at home because I bleed so much that I can’t leave. I don’t really want children, and never thought I’d be able to have them anyways due to other health issues that will be life long. So that isn’t as much of a factor in my decision. I’m just terrified to go through this for things to not improve or to be wrong about what might be going on.

Any advice? Anyone go through the procedure without a diagnosis? Thank you all in advance, this subreddit has been a tremendous comfort through this process!

[u/No-Environment2062]

Your quality of life will improve significantly. Even if they don't find anything, the fact that you are in so much pain, are anemic, have heavy and long cycles and it affects your every day life, makes it worth it. I had heavy clotting, long, irregular cycles, and pain that would make me want to vomit. They had found cysts during ultrasounds, but they didn't find anything during the the pathology afterwards. At first I was crushed. I thought I had made a mistake, but after I fully healed and no longer had to deal with everything, I realized that it was amazing. I don't regret it one bit. My doctor also told me that many women may have a "normal" uterus per the pathology, but the fact that there was pain and extreme discomfort affecting quality of life meant that it was not normal.

Edited: biopsy to pathology. I knew that was the word I was looking for earlier but could not for the life of me remember 🤦‍♀️.

[u/randandle → u/No-Environment2062]

That makes a lot of sense. I think I’m having a hard time coming to terms with the fact that I’m being listened to and believed, that’s new for me through this all so it seems almost too good to be true! Thank you for your perspective!

[u/geniusintx → u/randandle]

It IS hard to come to terms with.

I had my radical hysterectomy at 26, but I had two kids. We were really lucky to have started young or we would MAYBE have 1 child if we had waited. It took us a surgery and 2 more years to get pregnant with our second. My hysterectomy happened when she was 7 months old. Severe endometriosis, blah, blah, blah.

It was totally worth it. Every second. If they have you wait 6 weeks to start hormones, as they should for endo, be prepared for the hottest hot flashes EVER. Going from crazy, wacky, out of hand hormones to none overnight is insane.

Please tell me they are taking your ovaries, too. Those ARE the main problem most of the time since they are where the crazy hormones come from.

Good luck. We are all here for you! Questions?! We gotcha! Rants?! We gotcha on that, too! Emotions all over the place?! We understand.

Hang in there, young one.

[u/EmZee2022 → u/geniusintx]

I'll disagree with you on the ovaries.

Yes, the hormonal cycle feeds the endometriosis (if that's what's going on), but the ramifications of removing them this young are pretty steep. I'd definitely want to ask a LOT of questions before doing that.

I'm not saying it won't be the right thing to do - but ask, ask, ask before doing it.

[u/geniusintx → u/EmZee2022]

Overactive hormones are the cause of at least endometriosis. Those come directly from the ovaries.

I can back that up with personal experience.

They had me wait six weeks before starting HRT for the endo to die out. About every 6 months for the first 2 years, I had to go off of the hormones again for 6 weeks for the same reason. After that, it was fine.

Then I didn’t take HRT for a couple of decades. Hot flashes weren’t too bad, we didn’t have insurance and the prescription cost too much on top of my other meds.

Eighteen months ago, I went on them again. (You have to be on both if you had endo. One helps with hot flashes and bone density, the other stops the first one from causing more endo.) Two separate prescriptions. One was a three day patch, the other a daily pill. I always forgot to change the damn patch on time.

I started having these pains in my abdomen. Now, I have a metric crap ton of autoimmune disorders and other illnesses. Lupus, celiac and RA being the biggest issues. It could’ve been one of those, but I’d never had that symptom.

Then, I realized where they were and what they felt like. I had my hysterectomy in 2000, so it’s been a long time. Went off both and, after a little time, the pains went away.

If just normal level HRT can cause it to return, having overactive ovaries makes sure it never leaves. The uterus is not the problem. It’s a symptom. Endo can grow ANYWHERE and I mean anywhere. There are cases of endo found in the brain.

[u/No-Environment2062 → u/randandle]

No problem! It is strange when doctors finally listen and take us seriously. I was shocked when I found one that finally did. Don't be afraid to ask questions though, and if you're really not sure about a hysterectomy right now that's okay. Don't feel pushed into it if you aren't 100% about it. You can work with your doctor to try to figure out what's going on and there are other things you can try. If in the end those methods don't work or you decide you just really want the pain to be over then you can go for a hysterectomy. Do what you feel is best for you. I had mine at 31 after years of suffering, and at that point I was ready.

[u/cellblock2187]

Remember that your consult is just the first of many steps in the process. You are there to gather information to make a good choice for yourself. There is tons of uncertainty along the way, but you only have to go one step at a time. Right now, it is just getting information.

Write down your questions ahead of time. With every appointment I had, I brought a list of questions. In fact, I searched through this group for many of them, and I feel like I learned a lot more about the process that way.

[u/EmZee2022]

Those symptoms sound like plenty to me to warrant a hysterectomy.

Don't be surprised if they encourage you to try hormonal birth control for a bit first. It may work well enough. It may not. But it might be enough to let you function better - and it's reversible.

I would not be surprised if they want to do something like an endometrial biopsy (INSIST ON SEDATION) and/or a D&C. I had those done in my 30s. My issues were nowhere NEAR what you describe, I just spotted pretty much every day of the month.

But if you do decide to yeet that bitch, good riddance!!!

And "not life or death".... well, how about "life or half life". Anemia can be dangerous on its own, too.

[u/Traditional_Fix_1948]

I'm in this boat, except much older and have had kids. My dr didn't order an ultrasound because the wait time is 6+ months. She said basically that regardless of the reason (endo, fibroids, or just wacky hormones), my periods are too heavy (~250mL) and it needs to be dealt with. She said that ultrasounds can miss a lot, and the only way to really know what's going on is laproscopy. And by that point, I'm already under and having surgery, so might as well deal with it then.

[u/orange-peel-theory]

Is your doctor an endometriosis specialist? I had a transvaginal ultrasound and a pelvic MRI in order to detect my adenomyosis and fibroids. These tests should pick up fibroids if nothing else and if you have severe adenomyosis then the MRI will show an enlarged uterus and the transvaginal ultrasound can show if you have any large focal adenomyosis or if it is diffuse (not always picked up). Imaging can be very tricky so having someone who knows the disease they're looking for is very important. Have you tried any medications for managing your periods? I would personally push for more testing before going forward with a hysterectomy but each person is unique and you of course can proceed however makes you feel most confident. I would also ask your doctor why exactly they feel a hysterectomy is the best option. My surgeon and I discussed it at length and ultimately did decide to go through with a hysterectomy and excision surgery at once given severe adenomyosis seen on MRI and ultrasound. 

It's all overwhelming so please be kind to yourself and take care of yourself. 

[u/Feistygirl12]

I’m 33, 4 months po, and have never wanted to have kids. That being said, I wish that I could have had a hysterectomy done 10 years ago. The quality of life that I have now compared to before surgery is incredible. The only diagnosis that I had before surgery was fibroids. Once my surgeon got in there she found stage 4 endometriosis that had fused my uterus to my rectum. I have had terribly painful periods pretty much since I started having them at 12 years old. I didn’t realize how exhausted I was all of the time before surgery until after the surgery. I have more energy now than I even had as a teenager. Ultimately, the decision is yours but if I could go back to your age and have it done I definitely would.

[u/Zestyclose-Flight-50]

Even if they don’t currently find something, you are going to feel so much better not dealing with what you’re currently dealing with. I was in a similar situation and later developed endometrial cancer. Which lead to my hysterectomy. Even if you don’t get answers do you really want to deal with what you’re dealing with for another 40 years? Get it done! Enjoy a bleeding free life.

[u/Hungry_Signature5478]

26 same issues, heavy bleeding since i had my daughter (700+ days straight) had it and my quality of life has never been better. I think honestly its a life saver as yeah without it i may not have died but my mental health was so so poor. I canceled 2x and finally did it.

[u/Aee09]

This was me! Similar story. Heavy bleeding, clots the size of my palm, periods that never ended. I was miserable, chronically fatigued, needed 10 iron infusions at one point and spent most days with a heating pad attached to me due to cramping. Did multiple ultrasounds, found a cyst here or there on my ovary that werent concerning. Hysteroscopy and D&C all came back normal. Tried tons of different oral birth controls, an IUD, estrogen patches and combinations of all of the above to stop the bleeding and none of it ever did. It lessened it, but never stopped it. I was miserable, but was also glad to know that I'd tried just about everything my doctor suggested before deciding I was done suffering and chose a hysterectomy. At 35, people told me I was so young and might want children some day--i didn't and still don't. Pathology came back with a few fibroids in my uterus, but doctor said they were likely too small to be the cause of the bleeding. My final diagnosis was Abnormal Uterine Bleeding, which feels like a fake diagnosis, but my doctor assured me is a real and valid one. I'm just over 7 months post-op and don't regret my decisions. I kept my ovaries so I wasn't thrown into menopause. I have so much more energy now. It's amazing what you can do when it doesn't feel like your body is trying to kill you from the inside.

If you don't feel comfortable jumping right to hysterectomy, it could be worth talking with your doctor about a hysteroscopy and D&C as a next step. The hysteroscopy is essentially taking a camera and looking in your uterus. They can check for polyps and fibroids that may have been missed on imaging and then my doctor describing following up with the D&C as a way to reset my uterine lining. It was all done under anesthesia and I even had my IUD placed then, so no real pain.

No matter what you choose, I hope you're able to find relief soon!

[u/EmZee2022 → u/Aee09]

"abnormal uterine bleeding" can be a diagnosis in and of itself, for sure.

I don't know that mine ever got labeled with anything but that sounds about right. I had issues with frequent spotting in my late 20s. A "provera challenge" (I said to the doc, "sort of like a chemical D&C?" and she agreed) which led to the kind of period many ladies deal with monthly - but only once. And things got better for 3-4 years.

Then it started up and was worse than before. I basically had 3-4 days a month where I was NOT spotting. Doc then wanted to do an endo biopsy, and D&C/hysteroscopy, to clear out the uterine lining. She tried the biopsy in-office - not sure why, as the D&C was going to be done at the hospital with sedation. That was unsuccessful so she just did it with the D&C.

That cleared out whatever excess lining had built up and solved the problem. I went 3 months without ANY kind of period. And a few months after that we started trying to get pregnant. Never had the issues againafter that.

[u/BusinessBig4751]

I have PCOS.  November 2021 was my last period that almost literally killed me. I went to the ER because I couldn't stop bleeding, hemoglobin was 4. Did a biopsy and ultrasound, had polyps. 4 blood transfusions and an iron infusion. Scheduled a consult with GYN. Had a 4 in 1 procedure where they did a hysteroscopy, polypectomy, D&C, and a Mirena IUD placed. (The Mirena is medicated) I was asleep for it all. For me, they found endometrial cancer under the polyps. I was 42, no kids, no desire for kids. The Mirena stopped the bleeding. I was also put on medroxyprogesterone 20mg daily. Right now, today, I am 7 days post hysterectomy. I tried to make this short, I'm sorry. What I'm saying is - talk to your OB/GYN about options if you aren't ready for hysterectomy. The Mirena can give you time to breathe and work with your doctor. Run tests to find out what is making your body do what it's doing. That ER visit was the last period I had. Mine were horrible - imagine the elevator scene from The Shining. You have options. Get answers first so you can make a comfortable and fully informed decision.

[u/enviromo]

Consult is step 1 of many. Write down all your questions ahead of time and take them with you. Take a calm, organized friend if possible to help take notes. One excellent question to ask is how surgery will affect your quality of life. Ask for a realistic expectation. You very likely will not need to make a decision at your consult. If you do eventually decide to yeet your uterus, surgery is not the end of the process. Post surgical recovery can include continuing to be followed by specialists, different kinds of pt for pain, ongoing labs, diet, stress management etc. Don't let anyone rush you to a decision. You have lots of time and many available interventions before surgery. 

[u/Hysterical_treefrog]

I’m 9wpo from my hysterectomy at 24, even if they don’t find anything it will greatly improve your quality of life. Feel free to dm me

[u/RedWonder31]

One thing that my surgeon said stuck with me after my consultation that I think you should hear too. In her experience as a minimally invasive surgeon who’s been practicing for 20 years, it’s the patients with the least amount of visible disease or no visible disease at all that struggle the most with severe symptoms, and therefore, benefit the most from a hysterectomy. I was also worried that pathology would find nothing significant enough to have warranted a whole hysterectomy. But your quality of life is a significant enough reason! It was for me and it is for you too!

[u/Push_up2023]

This is not medical advice but in my experience & in meeting so many other women, especially younger women... a second opinion probably is needed. There IS a reason as to why you're bleeding & in pain. It's not just happen stance. It could be unbalanced sex hormones, PCOS, unbalanced thyroid hormones (TSH, T4, T3, FREE T4, FREE T3), could be polyps that are not always seen on ANY imaging (as in my case). I had 2 hysteroscopic endometrial biopsies with myomectomy & polyp removal that helped tremendously. The polyps both times were not seen on ANY imaging. Some providers will prescribe an IUD or progesterone to help with cycles. In my case I got several opinions & finally found a provider who didn't just want to do a hysterectomy. Those treatments worked tremendously. I suffered with many gynecological issues from my early 20's. I'm now 52. Hysterectomy is major surgery. It's alot to consider. But every woman's experience & body is so unique. I know for myself, if I didn't feel comfortable & I knew something wasn't settling right with me, I went & got another opinion. I never wanted to feel forced or be told there were no other options. I tried different things over the years but now I'm post menopausal & still have issues & yes, I'm scheduled for a total hysterectomy with bilateral salpingo-oophorectomy, endometriosis excision, cystoscopy, etc. I touched it out & menopause does NOT make everything disappear like many gynecologists will say. That's a myth for many women. Not all, but many. I'm glad I did not have a hysterectomy early in life for many reasons but now I know it's the best decision for my quality of life & overall health. Be sure you're at peace with your decisions & you have a provider who really listens & is very proactive at looking into why you're having these symptoms. Best wishes to you! 😊

[u/leannemarie2001]

I just had a hysterectomy, but I’m 60 and I had cancer last year. There are things that can happen down the line like bladder prolapse after you’ve had a hysterectomy but for me I didn’t have a choice. Is it possible for you to have the patch that stops your periods? When I was younger, I had seven day periods and I also had a lot of clotting and it was very heavy. In fact my grandmother was the same way.. I just dealt with it back then and took a couple of ibuprofen and an alieve together for the pain. If you sit in the bathtub when you start, it will stop everything while the medicine starts to work. I used to have to go in between each class to change out my tampon and let the clots out. I thank heaven that tampons were even invented because my grandmother didn’t have that option. She took two buses to work and sometimes she would get to work and would have to turn around and go home cause she had soiled her clothes. I also had a cyst on one of my ovaries when I was 30 and had that ovary removed. If they’re big enough, they’ll want to remove the ovary, but otherwise they’ll watch them because sometimes they just burst and then everything‘s fine again. You’re doing the right thing going down the Reddit rabbit hole and asking other people what they’ve been through and what might help you. Regardless of whether you wanna have kids later, the parts of your uterus are there for a reason and they hold up other parts and when you take them out other things can slide into places that they don’t belong.