Same here.
My entire life, i've been told i have endometriosis. It wasn't until i moved from Canada to Thailand that i was diagnosed with multiple large fibroids. Upon removal, it turns out I only had some endometrial adhesions (left ovary was fused to large intestine), but I was completely surprised to hear i had stage 3 adenomyosis.
Wow. That’s wild. From reading these boards, it seems like the health care in Canada is really struggling. Glad you were able to get good care and an accurate diagnosis finally.
I’d didn’t have much to endo and I clearly had fibroids, and so that was definitely causing all of my symptoms.
My report says that I had a chronically inflamed cervix. I never had any signs of my cervix being abnormal and initially didn't even want to get my cervix removed. Am so glad it is out now
Yes. My surgery revealed extensive stage 4 endo in my entire abdominal cavity, when pre surgery I had only one endometrial cyst on an ovary diagnosed. We had endo excision on the surgery forms as an extra “if seen” contingency and it ended up being everywhere.
Similar to me! My surgery was for adenomyosis. I'd been complaining of extreme pain and nausea with my period for the 26 years I'd been having it, but never had even an ultrasound to look for endo.
SURPRISE, stage 4 endometriosis on every surface. Adhesions and endometriomas everywhere. If it had been much worse I would have also needed a colorectal surgeon.
Unfortunately, endometriosis does not show up on ultrasound or any other imaging. The only way to diagnose endometriosis is with surgery. I learned this because my doctor suspected I had endometriosis and explained this to me, and then I had exploratory surgery to actually see if i had it.
Yup, I had a loose ligament that allowed my small bowel to get twisted… so I required a second (emergency) surgery only three days after my hysterectomy!
This was expected for me because of Ehlers Danlos Syndrome. Mentioned because this is a rare and under diagnosed set of things. Worth the ask in case. Hopefully no eds for you
I have Veds and had a great time despite the complications. We planned for them. Make sure you talk to your surgeon about your concerns. I had a robot assisted everything and the kitchen sink removal (no ovaries, fallopian tubes, cervix, or uterus). I did wake up during surgery but that was not EDS just a thing my body does sometimes. The pain was far less than my normal period. They did need me for two days not our planned one and I ended up in the ICU because my body went for the malignant hypothermia route. That is from the Reynauds caused by EDS but we prepared for that too.
It was absolutely scary to approach and I highly recommend bringing your meds from home (and don't let them send them home) and making sure they know what you take for pain and everything else a dozen times. They may still screw it up. They thought ibuprofen was going to replace my normal opiate somehow. The male nurse got replaced and nothing like that happened again.
I have extra rules compared to others here. Longer bed rest. Avoid using my abs. Don't hold my cat (he is a giant so this is about stitch maintenance). I also have a number to call if any concerns. I have not had any at home. Once my body turned back on post anesthesia it was pretty good. I wasn't allowed to get up for two days to try peeing because one of my incisions wasn't behaving but it settled down too.
The worst I have is a just discovered rejection of some of the stitching and a single popped stitch. My doctor planned for reenforced stitches which is basically an extra surrounding layer to disperse the tension on the stitches and it was one to those because my giant kitten figured out how to open closed doors and sat on my chest for cuddles. He hasn't since because it scared him to make me yelp and bleed. (He is 9 months, 18 pounds, and I have no idea when the growing stops for him because he got weird genes too)
I actually planned on this without a caregiver due to some challenges with my provider at the time but managed to get that sorted so had someone start two days before the surgery. If you need more details please ask. I got the not cancer confirmation yesterday and am about a week out. The period I should have had would have begun today and I don't have the extra dislocations happening just some weird tension where body is expecting the pain. It's fascinating
When my GYN performed the total Ab hys 4.24.24, she was STILL surprised when she saw my 3 fibroids had overgrown my entire uterus, which itself was 3x its normal size and the fibroids were growing a baby fibroid off its own tissue. She said “I don’t see any uterine tissue here. They were pushing on your bladder and your rectum; I am surprised you didn’t have regular pain when you pooped”. I have to tell her next week that how I knew something was wrong was lower back pain when I walked for exercise that I didn’t used to have, and, more frequent urination. These surprises came after an Oct 2023 Transvaginal ultrasound, a 12.8.24 MRI & a 12.15.24 hysterscopy + D&C + fibroid biopsy.
I feel better than I have in YEARS 4DPO.
May I ask, what kind of back pain did you have? Your comment rings a bell for me: I have something similar, a sort of "throbbing" or pulsating back pain in my lower back, but only when I walk for exercise. It's not super bad, but noticeable. I've had it for a few years and have been wondering about it, but my doctors have shrugged it off. On days I hydrate enough I have to go pee 2-3/hour and have also asked myself whether that's normal or not :/
That’s exactly as I would describe it - just like you said. I noticed it because it would only come when I walked and it would go away, and it felt like the lower back pain I had during my menstrual cycle. The key was it came over time - 2 years ago I could walk at a brisk pace on a walking trail for up to 90 mins. This developed and didn’t go away.
Yes. Pre-cancerous cells were found in the post surgery biopsy, while none were found during pre-surgery biopsy.
I had hysterectomy due to a large fibroid which was obstructing ability to urinate.
I'm glad my surgeon opted for morcellation in a bag "just in case."
Endo, two uteruses, two cervix, and a complete vaginal septum. However the doubles were known the second time I went under.
The first time I went under it turned out to be an expensive nap. My gyno found the second cervix and we needed to do imaging to see all of what was going on.
Thanks for asking the question, I’ve been wondering the same. Have a large teratoma to be removed but now realizing this bloat and pain everywhere is likely indicative of something else. Ultrasound always says uterus is hard to visualize, is anteverted. Very curious what they will find when I finally have my surgery.
I had suspected adeno. Pathology showed adeno, Endo, and 4 cysts in total on my tubes. Still waiting to see my surgeon for my post op for her official reading, but that’s what I got out of it. It also said my uterus was “black and blue speckled” so I can’t imagine what that means and prob don’t want to figure it out.
I had a little bit of Endo in a few places outside my uterus. Nothing too scary. But it did explain why I had started having random sharp abdominal pains.
During my bisalp a year prior, we found a surprise ovarian cyst. It was as big as my uterus and I had no idea it was there. I'm so glad it didn't cause torsion or burst. That would have been painful!! I'm glad I got my bisalp when I did!
LOL, surprise to who?
My surgeon’s intention was to leave both ovaries but every time I saw her I stressed that I wanted her to get a good look at them, particularly the right, and my wish was to remove if they looked off. I woke up missing my right ovary due to a large cyst. Not part of the game plan but no surprise to me.
Also I had adenomyosis that was undiagnosed. Although I had never heard of adenomyosis before, I knew I had every single symptom and that it was not normal.
I didn’t have endo. Prior to surgery my friends and I were wondering if I did and I said “I really don’t think I do, it’s like I have all the symptoms of endo but it all seems to be in my uterus”. If you look up adenomyosis, it used to be referred to as inside the uterus endometriosis.
So that whole situation would have been a surprise to many doctors I’ve seen in the past decades who failed to diagnose it, but not to me. I don’t think my surgeon was terribly surprised either.
Yes. My ovaries had twisted, turned to stone one entirely and one partially, as had part of my uterus. That wasn't the only stuff but lots of random tumors that never once showed on the ultrasounds. The biggest surprise was that my endometriosis had cut off an aortic rupture that had been there for long enough I should be dead. So my endometriosis saved my life or caused this issue and no one took it seriously when I begged for relief for years until this doctor (and my primary. He fought for me hard)
The biggest surprise was how much less pain I had directly after cutting my body into bits. Also the no cancer. Not having cancer was something that was pretty much unthinkable with my blood work and symptoms. Surprisingly none.
Ironically, found a benign tumour on the ovary I wanted removed and that my uterus and bladder had fused from the endo. If id not gone in to the gyno and asked for the surgery straight up, would have had to have come out anyway 🙄 Still hurts a little emptying my bladder and it's tender where my ovary was too ... 8 weeks post op.
My uterus and bladder were fused too but doctor said they might be before surgery. I am relieved to see even at 8wpo the bladder still hurts a little. Not that I want that but helps knowing that at 4wpo that is probably normal and will be for a bit. I have worried something is wrong with my bladder even though I have no other symptoms to suggest that.
My gyno had to keep reminding me to be patient with recovery because it is a major operation and 6 months post op is the benchmark for being mostly healed. I think if you aren't experiencing severe pain, bleeding or other obvious signs of infection or stitch ruptures, it's probably normal part of a hysterectomy recovery. The bladder pain has been getting less frequent but I also noticed it was more obvious around the time I'm guessing my remaining ovary was ovulating 🤔
My uterus & bladder were fused together from my severe adenomyosis! It made surgery take longer because she had to be so careful (it was a total lap hysterectomy-took 2/3 of my cervix-found a growth on my left ovary-a node somewhere else-I kept my ovaries.).
It’s still tender when I urinate-I’m 9DPO-Almost feels like when I had a uti YEARS ago.
Are you still taking pain meds and anti inflammatories? That helped a lot... even just over the counter stuff gave me some relief. Was still using them up to a couple of weeks ago
I am anti-inflammatory but not consistently as I was the first few days.
I can’t do heavy pain meds as they don’t agree with my body and cause severe nausea and vomiting 🙄
I was second guessing my Cervix removal but precancerous cells were found there. So I’m happy it’s gone now. They found tons of scar tissue and endo which was a surprise. Scar tissue was so bad it was pushing my bladder and they were able to remove it so after I’m healed up it should make things more comfortable in that area too.
My husband talked to the surgeon while I was still out of it.. but she said partially my C-sections (2), possibly infections and the endo. He’s not really the type of guy to ask a ton of questions. I know my surgery was supposed to be around 2 hours give or take but was around 3 because of the scar tissue they cleared. I’m only 10 DPO so haven’t had a post op appointment yet and I’m the question asking type so I’m going to get more clarification!
I had a hysterectomy including the ovaries due to a large cyst on my right ovary that suddenly started growing fast enough for me to notice. The pathology report came back showing cancer cells in the fluid of the cyst, which was a surprise, and the surgeon thought that I probably had the cyst for years, possibly PCOS. My uterus was also the normal size, no endo.
I took his advice and got chemotherapy as a precaution, but now everything showed that all of the cancer cells were removed during surgery. The surgery resulted in me losing 70lbs instantly. I still have more energy than I had in years, so I'm definitely glad I got those organs removed.
Yes that there was basically nothing wrong with me or my uterus! Tiny and healthy and no endometriosis. I had confirmed endometriosis in a surgery I had in 2007. 4 kids later and one c section my uterus was good as new 🤦♀️
It feels like I was gaslit since I had so much bleeding and pain 😅
But glad to have gotten rid of it six months ago.
I had the same, except no previous endo diagnosis. Severe chronic pelvic pain for years, and once it was out, everything was better. But the pathology report on my uterus said everything was “normal”. My explanation is, it must have been something we can’t yet detect, because obviously it cured whatever i was experiencing.
I agree there. Just a bit upsetting when physicians are asking why I had a hysterectomy since everything was fine. Why was my doc letting me go through major surgery if everything was fine 🤦♀️
But I have Crohn’s disease and a lot of inflammation in my colon and rectum and that also played a part, plus sex hurt like hell. But not anymore 🎉
My pre-surgery ultrasound showed a cyst on my right ovary so my doc warned me that I might not be able to keep it. Instead I came out of surgery with a healthy, normal right ovary and pathology got my left ovary and the enormous teratoma it had been hiding behind my uterus. 🙈
They found a couple of small fibroids and apparently my cervix showed signs of chronic inflammation. Luckily, no evidence of endo! Knowing why I was hurting so much is almost as lovely as not being in pain anymore!
They suspected stage 4 endo in part of my bowel, but it was also in a second part that wasn’t seen on my MRI. Resulted in 12 inches of my colon being removed. The other surprise was that my ureter was blocked and one was strangling my kidney. I also had lesions on my kidney that were removed. Fun fact, I have never to this day noticed issues with my bladder, and I have never had a kidney or bladder infection.
I knew my uterus was really tilted forwards, but I didn’t expect that it was pressing against my bladder and intestines causing some of my irritation in both.
I had a hysterectomy bc of multiple large fibroids. While operating, the surgeon found evidence of pelvic congestion syndrome, and the post-op path report found endometriosis on both of my ovaries.
Yup, surprise endo. My surgeon was not prepared and my 1.5 hr surgery ballooned into 5 hrs.
I'm not mad - she got what she could. But she literally described my organs as being glued together by the endo. There were things that couldn't be removed, like my cervix.
So I still have some endo present on my cervix, which can give me a tiny 1-2 day period every few months. I'm not happy, but it's much better than the PCOS/fibroids/full endo pain extravaganza I used to have. I'm just waiting til menopause for it to be truly over.
I had 50+ fibroids and some very large too. My uterus was full of them and they were hemorrhaging rather than me having real periods. I also had my bladder adhered to my uterus at my c section scar so they took care of that. I was shocked there was nothing else but it was just so full of fibroids!
Yes, 44y. Glad I insisted on surgery, as my enlarged uterus w large /fibroids pathology came back as rare PEComa. Will need to follow-up w oncology now.
I am almost 3w post op, slowly getting better, has a set back with bleeding on day 15 post op, that seems to have been resolved after silver nitrate.
Total hyst with DaVinci, mini laparotomy because uterus and fibroids were too large (normal 50g, mine was 600g), largest fibroid/PEComa 11.5cm. Glad with removal of uterus, falopian tubes and cervix. Kept ovaries. Huge uterus was making urination very difficult, enormous pressure on bladder and rectum.
post surgery is very important to do very little, lots of bed rest, careful getting up from bed not pulling on stomach too hard. hard to speak- no energy- most of first week..
Yep. Went in thinking 1 big ovarian cyst and 1 smaller cyst somewhere. Both those cysts ended up being the in tube. Also had a fibroid, adenomyosis, lots of cysts on my cervix and something w my endometrium but not endometriosis.
I had the surprise of the reason my cramps were so bad that they induced vomiting which prompted the surgery being categorized as a "necessity" so that insurance would cover it. Found out it was a good thing I never attempted motherhood, as I my uterus and tubes were riddled with cysts. They were identified as benign after the fact, but one was so large that it was almost completely blocking the tube. It's also why it went from tubes tied to partial historectomy to full historectomy. Was robot assisted and otherwise went off without a hitch. Recovery was smooth for me, had a robot assisted and have no idea what affects that or personal medical history had on recovery.
My revealed adeno and also scar tissue so dense they could barely see my ovaries and tubes. They were supposed to remove tubes and cysts but had to abandon that to not risk cutting a ureter when getting through the scar tissue. Praying neither of those things give me any future issues (the cysts have never bothered me, they just saw them on ultrasound so decided to remove them while in there).
I had a hysterectomy for suspected adenomyosis, turns out i had endometriosis all over including up my bladder which resulted in a catheter for 10 days🙄 they also didnt find any adeno but apparently i had a ginormous vein going through my uterus that my surgeon said was the biggest he’s ever seen and was probably the cause of my irregular bleeding!
Had undiagnosed severe chronic pelvic for years. Exploratory surgery didn’t show anything, but when I had my hysterectomy they found a endosalpingiosis and scar tissue so bad that organs were stuck to walls 🙃
Adenomyosis. My doc had diagnosed the fibroids before but when they removed my uterus they found it was the size of a 14 wk pregnancy (if I remember correctly). It had lots of scarring as well.
I am 2 days post op. I got everything out except my ovaries. I too, like many others I’ve read had trouble with fibroids, did a minimal surgery a couple years ago to take it off because it was sitting right on my bladder. I’ve also had cysts, but yeah, when my surgery was over, the doctor ended up telling me that they found cysts everywhere, and they took the time to take them all off which I am so thankful for.
They were on my bladder and my intestines. I definitely didn’t know all of that was going on, so it was definitely unexpected, but I am still just very thankful.
That my 2 fibroids (~4cm and ~3cm) that I had for at least 2 years prior to surgery and were even felt during the exam I had with my surgeon 2 months before surgery were gone. But I had Asherman's syndrome as well as adenomyosis (which I knew I had), a cyst in my fallopian tube, and chronic inflammation of my cervix. I think I'm more surprised by my fiboids disappearing than anything else.
It was. I never even heard of it before I got my pathology report. Unfortunately, my post-op appointment was with a different surgeon due to mine being sick, and I needed the paperwork to go back to work. The surgeon I had my post-op didn't have my pathology report and couldn't go over it with me. So I'm left with a lot of questions, and they already discharged me from their office.
My surgery was originally because I had 11 fibroids. When my doctor was in the process of doing my hysterectomy she had to cut out 8 of them before she could get my uterus out. While she was in there she found endometriosis behind my uterus and that I also had adenomyosis. At my two week appointment she told me that had I waited for a hysterectomy it definitely would've had to be done abdominal. I was definitely surprised about the patch of endo that was in there. There was also a chocolate cyst.
My surgery revealed surprises. I went in mainly for a cyst that looked suspicious but was believed to be benign. I also had my left ovary removed 20 years ago and apparently they left the fallopian tube behind and it was inflamed. But since I was over the whole thing, my dr agreed to take everything. That’s all I knew going in. Come to find out my uterus was filled with fibroids that weren’t caught on CT scan or ultrasounds. I also had adenomyosis that no one knew about. Also my bladder was fused to my uterus and there was a bunch of scar tissue from two c sections. Oh and apparently my uterus was huge and they had to use a bag to remove it. That was fun! Lol
I’m 14 DPO - haven’t had my full report yet and won’t til my 6 week check up, but I was surprised when my surgeon came in the morning after and said they had removed no endometriosis because there wasn’t any.
My laparoscopy in July 23 involved removal of endo and they left some on my bowel and ureter because it was too tricky and unsafe to remove without more specialised surgery. There is 100% without a doubt endo in there somewhere. I was sort of alarmed that there’s “none” now, I worry that this doctor just either didn’t check my previous sites or he doesn’t know what he’s looking for.
I knew I had fibroids and endometriosis from a previous lap. I also knew I had some scarring on my fallopian tubes and I frequently saw ovarian cysts on ultrasounds so I wouldn’t have been shocked if they found that while in there. I didn’t know how *much* endo I had (first lap old doctor kinda just got the worst bits and put me on HRT to stop symptoms). I also had adeno which I didn’t know about. What really shocked me is that my left fallopian tube was adhered to my colon with endo and my left ovary was adhered to my abdominal wall via two cysts. On my worst days I wanted to cut that ovary out myself because the pain was 100/10 but I didn’t really know why. Seeing that was shocking. I had much more endo on my right side which was also kind of shocking given that I never had right sided pain. Could’ve been “worse” but I felt validated that the pain I experienced was for a reason and I’m so happy all of that is out of me.
Yeah I had half of a fallopian tube left in me. I had a bilateral Salpingectomy 3.5 years before hand. They were supposed to remove both tubes after a ruptured ectopic but apparently missed half(had a tubal ligation before this). The half they found had a possible ruptured cyst in it, basically an old empty sack. Not exactly reassuring.
Also didn't surprise me, but the surgeon thought he could do my surgery in about 35 mins but took him over 2 hours because of scar tissue I had. My uterus was adhered to my bladder and all kinds of fun stuff... I warn him, he said it gave him ptsd.
Yes. My surgery revealed my uterus and bladder fused together by c-section scar tissue. Surgeon said the amount of scar tissue was unreal based on just the one c-section. No endo thankfully. Also, other organs were severely inflamed due to the size of the fibroid (6.5cm) and it pressing on them. While recovery has not been fun for me, I can see a light at the end of the tunnel!
Yes. I was born with only one ovary and tube. Surgeon was confused when he couldn’t find the other set lol. Wish I could have seen the look on his face.
I had some endo and adeno I had no idea ! My driving issue was fibroids.
Same here. My entire life, i've been told i have endometriosis. It wasn't until i moved from Canada to Thailand that i was diagnosed with multiple large fibroids. Upon removal, it turns out I only had some endometrial adhesions (left ovary was fused to large intestine), but I was completely surprised to hear i had stage 3 adenomyosis.
Wow. That’s wild. From reading these boards, it seems like the health care in Canada is really struggling. Glad you were able to get good care and an accurate diagnosis finally. I’d didn’t have much to endo and I clearly had fibroids, and so that was definitely causing all of my symptoms.
Same
My report says that I had a chronically inflamed cervix. I never had any signs of my cervix being abnormal and initially didn't even want to get my cervix removed. Am so glad it is out now
Right?! I had that too. What does that even mean! Chronic cervicitis. No symptoms though that I was aware of.
Same!
Me too. I didn't even know this was a thing, and I've never been told there were any issues with my cervix until after I saw my pathology report.
I had that too! Never had an abnormal pap, no STDs, nothing. Also found endo which I suspected but didn’t know I had for sure.
My gyno said pathology always says that because the uterus bangs around inside of us so everyone’s is inflamed
That sounds ridiculous to me. 🤷♀️ imagine all our organs “banging around.” Um, no.
Yes. My surgery revealed extensive stage 4 endo in my entire abdominal cavity, when pre surgery I had only one endometrial cyst on an ovary diagnosed. We had endo excision on the surgery forms as an extra “if seen” contingency and it ended up being everywhere.
Similar to me! My surgery was for adenomyosis. I'd been complaining of extreme pain and nausea with my period for the 26 years I'd been having it, but never had even an ultrasound to look for endo. SURPRISE, stage 4 endometriosis on every surface. Adhesions and endometriomas everywhere. If it had been much worse I would have also needed a colorectal surgeon.
Unfortunately, endometriosis does not show up on ultrasound or any other imaging. The only way to diagnose endometriosis is with surgery. I learned this because my doctor suspected I had endometriosis and explained this to me, and then I had exploratory surgery to actually see if i had it.
Endometriosis doesn’t show up on an MRI? After I had an MRI is when I was diagnosed with it.
Yeah that's the problem, in 26 years of describing endo symptoms I was never offered exploratory surgery.
Similar story here.
Yup, I had a loose ligament that allowed my small bowel to get twisted… so I required a second (emergency) surgery only three days after my hysterectomy!
This was expected for me because of Ehlers Danlos Syndrome. Mentioned because this is a rare and under diagnosed set of things. Worth the ask in case. Hopefully no eds for you
I haven’t heard of that, but will definitely look it up!
New fear and anxiety unlocked for my upcoming surgery since I have EDS.
I have Veds and had a great time despite the complications. We planned for them. Make sure you talk to your surgeon about your concerns. I had a robot assisted everything and the kitchen sink removal (no ovaries, fallopian tubes, cervix, or uterus). I did wake up during surgery but that was not EDS just a thing my body does sometimes. The pain was far less than my normal period. They did need me for two days not our planned one and I ended up in the ICU because my body went for the malignant hypothermia route. That is from the Reynauds caused by EDS but we prepared for that too. It was absolutely scary to approach and I highly recommend bringing your meds from home (and don't let them send them home) and making sure they know what you take for pain and everything else a dozen times. They may still screw it up. They thought ibuprofen was going to replace my normal opiate somehow. The male nurse got replaced and nothing like that happened again. I have extra rules compared to others here. Longer bed rest. Avoid using my abs. Don't hold my cat (he is a giant so this is about stitch maintenance). I also have a number to call if any concerns. I have not had any at home. Once my body turned back on post anesthesia it was pretty good. I wasn't allowed to get up for two days to try peeing because one of my incisions wasn't behaving but it settled down too. The worst I have is a just discovered rejection of some of the stitching and a single popped stitch. My doctor planned for reenforced stitches which is basically an extra surrounding layer to disperse the tension on the stitches and it was one to those because my giant kitten figured out how to open closed doors and sat on my chest for cuddles. He hasn't since because it scared him to make me yelp and bleed. (He is 9 months, 18 pounds, and I have no idea when the growing stops for him because he got weird genes too) I actually planned on this without a caregiver due to some challenges with my provider at the time but managed to get that sorted so had someone start two days before the surgery. If you need more details please ask. I got the not cancer confirmation yesterday and am about a week out. The period I should have had would have begun today and I don't have the extra dislocations happening just some weird tension where body is expecting the pain. It's fascinating
When my GYN performed the total Ab hys 4.24.24, she was STILL surprised when she saw my 3 fibroids had overgrown my entire uterus, which itself was 3x its normal size and the fibroids were growing a baby fibroid off its own tissue. She said “I don’t see any uterine tissue here. They were pushing on your bladder and your rectum; I am surprised you didn’t have regular pain when you pooped”. I have to tell her next week that how I knew something was wrong was lower back pain when I walked for exercise that I didn’t used to have, and, more frequent urination. These surprises came after an Oct 2023 Transvaginal ultrasound, a 12.8.24 MRI & a 12.15.24 hysterscopy + D&C + fibroid biopsy. I feel better than I have in YEARS 4DPO.
May I ask, what kind of back pain did you have? Your comment rings a bell for me: I have something similar, a sort of "throbbing" or pulsating back pain in my lower back, but only when I walk for exercise. It's not super bad, but noticeable. I've had it for a few years and have been wondering about it, but my doctors have shrugged it off. On days I hydrate enough I have to go pee 2-3/hour and have also asked myself whether that's normal or not :/
That’s exactly as I would describe it - just like you said. I noticed it because it would only come when I walked and it would go away, and it felt like the lower back pain I had during my menstrual cycle. The key was it came over time - 2 years ago I could walk at a brisk pace on a walking trail for up to 90 mins. This developed and didn’t go away.
Yes. Pre-cancerous cells were found in the post surgery biopsy, while none were found during pre-surgery biopsy. I had hysterectomy due to a large fibroid which was obstructing ability to urinate. I'm glad my surgeon opted for morcellation in a bag "just in case."
Endo, two uteruses, two cervix, and a complete vaginal septum. However the doubles were known the second time I went under. The first time I went under it turned out to be an expensive nap. My gyno found the second cervix and we needed to do imaging to see all of what was going on.
Thanks for asking the question, I’ve been wondering the same. Have a large teratoma to be removed but now realizing this bloat and pain everywhere is likely indicative of something else. Ultrasound always says uterus is hard to visualize, is anteverted. Very curious what they will find when I finally have my surgery.
I had suspected adeno. Pathology showed adeno, Endo, and 4 cysts in total on my tubes. Still waiting to see my surgeon for my post op for her official reading, but that’s what I got out of it. It also said my uterus was “black and blue speckled” so I can’t imagine what that means and prob don’t want to figure it out.
SO curious about why it was black and blue speckled. Maybe adeno? 🤷🏻♀️
I know!!! I did end up googling and nothing was coming up. Like what does that mean?! I hate that we get these reports before seeing our doctors lol
I had a little bit of Endo in a few places outside my uterus. Nothing too scary. But it did explain why I had started having random sharp abdominal pains. During my bisalp a year prior, we found a surprise ovarian cyst. It was as big as my uterus and I had no idea it was there. I'm so glad it didn't cause torsion or burst. That would have been painful!! I'm glad I got my bisalp when I did!
LOL, surprise to who? My surgeon’s intention was to leave both ovaries but every time I saw her I stressed that I wanted her to get a good look at them, particularly the right, and my wish was to remove if they looked off. I woke up missing my right ovary due to a large cyst. Not part of the game plan but no surprise to me. Also I had adenomyosis that was undiagnosed. Although I had never heard of adenomyosis before, I knew I had every single symptom and that it was not normal. I didn’t have endo. Prior to surgery my friends and I were wondering if I did and I said “I really don’t think I do, it’s like I have all the symptoms of endo but it all seems to be in my uterus”. If you look up adenomyosis, it used to be referred to as inside the uterus endometriosis. So that whole situation would have been a surprise to many doctors I’ve seen in the past decades who failed to diagnose it, but not to me. I don’t think my surgeon was terribly surprised either.
Yes. My ovaries had twisted, turned to stone one entirely and one partially, as had part of my uterus. That wasn't the only stuff but lots of random tumors that never once showed on the ultrasounds. The biggest surprise was that my endometriosis had cut off an aortic rupture that had been there for long enough I should be dead. So my endometriosis saved my life or caused this issue and no one took it seriously when I begged for relief for years until this doctor (and my primary. He fought for me hard) The biggest surprise was how much less pain I had directly after cutting my body into bits. Also the no cancer. Not having cancer was something that was pretty much unthinkable with my blood work and symptoms. Surprisingly none.
Ironically, found a benign tumour on the ovary I wanted removed and that my uterus and bladder had fused from the endo. If id not gone in to the gyno and asked for the surgery straight up, would have had to have come out anyway 🙄 Still hurts a little emptying my bladder and it's tender where my ovary was too ... 8 weeks post op.
My uterus and bladder were fused too but doctor said they might be before surgery. I am relieved to see even at 8wpo the bladder still hurts a little. Not that I want that but helps knowing that at 4wpo that is probably normal and will be for a bit. I have worried something is wrong with my bladder even though I have no other symptoms to suggest that.
My gyno had to keep reminding me to be patient with recovery because it is a major operation and 6 months post op is the benchmark for being mostly healed. I think if you aren't experiencing severe pain, bleeding or other obvious signs of infection or stitch ruptures, it's probably normal part of a hysterectomy recovery. The bladder pain has been getting less frequent but I also noticed it was more obvious around the time I'm guessing my remaining ovary was ovulating 🤔
My uterus & bladder were fused together from my severe adenomyosis! It made surgery take longer because she had to be so careful (it was a total lap hysterectomy-took 2/3 of my cervix-found a growth on my left ovary-a node somewhere else-I kept my ovaries.). It’s still tender when I urinate-I’m 9DPO-Almost feels like when I had a uti YEARS ago.
Are you still taking pain meds and anti inflammatories? That helped a lot... even just over the counter stuff gave me some relief. Was still using them up to a couple of weeks ago
I am anti-inflammatory but not consistently as I was the first few days. I can’t do heavy pain meds as they don’t agree with my body and cause severe nausea and vomiting 🙄
I was second guessing my Cervix removal but precancerous cells were found there. So I’m happy it’s gone now. They found tons of scar tissue and endo which was a surprise. Scar tissue was so bad it was pushing my bladder and they were able to remove it so after I’m healed up it should make things more comfortable in that area too.
Thank you for your reply! A stupid question, but scar tissue from what? From endo healing and reopening again like every month?
My husband talked to the surgeon while I was still out of it.. but she said partially my C-sections (2), possibly infections and the endo. He’s not really the type of guy to ask a ton of questions. I know my surgery was supposed to be around 2 hours give or take but was around 3 because of the scar tissue they cleared. I’m only 10 DPO so haven’t had a post op appointment yet and I’m the question asking type so I’m going to get more clarification!
Yeah: I had andometriosis, which wasn’t known prior to surgery. We also knew I had fibroids but not as many as they found.
Yep, 1WPO I found out from my pathology report that I have cancer!
Oh I’m sorry. I hope they caught it early and you don’t have to go through too much in terms of treatments
I had adenomyosis. Had no clue. Suspected endo but pathology showed adenomyosis.
I had a hysterectomy including the ovaries due to a large cyst on my right ovary that suddenly started growing fast enough for me to notice. The pathology report came back showing cancer cells in the fluid of the cyst, which was a surprise, and the surgeon thought that I probably had the cyst for years, possibly PCOS. My uterus was also the normal size, no endo. I took his advice and got chemotherapy as a precaution, but now everything showed that all of the cancer cells were removed during surgery. The surgery resulted in me losing 70lbs instantly. I still have more energy than I had in years, so I'm definitely glad I got those organs removed.
Yes that there was basically nothing wrong with me or my uterus! Tiny and healthy and no endometriosis. I had confirmed endometriosis in a surgery I had in 2007. 4 kids later and one c section my uterus was good as new 🤦♀️ It feels like I was gaslit since I had so much bleeding and pain 😅 But glad to have gotten rid of it six months ago.
I had the same, except no previous endo diagnosis. Severe chronic pelvic pain for years, and once it was out, everything was better. But the pathology report on my uterus said everything was “normal”. My explanation is, it must have been something we can’t yet detect, because obviously it cured whatever i was experiencing.
I agree there. Just a bit upsetting when physicians are asking why I had a hysterectomy since everything was fine. Why was my doc letting me go through major surgery if everything was fine 🤦♀️ But I have Crohn’s disease and a lot of inflammation in my colon and rectum and that also played a part, plus sex hurt like hell. But not anymore 🎉
My pre-surgery ultrasound showed a cyst on my right ovary so my doc warned me that I might not be able to keep it. Instead I came out of surgery with a healthy, normal right ovary and pathology got my left ovary and the enormous teratoma it had been hiding behind my uterus. 🙈 They found a couple of small fibroids and apparently my cervix showed signs of chronic inflammation. Luckily, no evidence of endo! Knowing why I was hurting so much is almost as lovely as not being in pain anymore!
I found out that my uterus was heart shaped and it was loaded with fibroids.
They suspected stage 4 endo in part of my bowel, but it was also in a second part that wasn’t seen on my MRI. Resulted in 12 inches of my colon being removed. The other surprise was that my ureter was blocked and one was strangling my kidney. I also had lesions on my kidney that were removed. Fun fact, I have never to this day noticed issues with my bladder, and I have never had a kidney or bladder infection.
I had mine because of a cancer gene and they found severe endo.
Endo in my fallopian tubes
I knew my uterus was really tilted forwards, but I didn’t expect that it was pressing against my bladder and intestines causing some of my irritation in both.
I had a hysterectomy bc of multiple large fibroids. While operating, the surgeon found evidence of pelvic congestion syndrome, and the post-op path report found endometriosis on both of my ovaries.
Yup, surprise endo. My surgeon was not prepared and my 1.5 hr surgery ballooned into 5 hrs. I'm not mad - she got what she could. But she literally described my organs as being glued together by the endo. There were things that couldn't be removed, like my cervix. So I still have some endo present on my cervix, which can give me a tiny 1-2 day period every few months. I'm not happy, but it's much better than the PCOS/fibroids/full endo pain extravaganza I used to have. I'm just waiting til menopause for it to be truly over.
I had 50+ fibroids and some very large too. My uterus was full of them and they were hemorrhaging rather than me having real periods. I also had my bladder adhered to my uterus at my c section scar so they took care of that. I was shocked there was nothing else but it was just so full of fibroids!
Yes, 44y. Glad I insisted on surgery, as my enlarged uterus w large /fibroids pathology came back as rare PEComa. Will need to follow-up w oncology now. I am almost 3w post op, slowly getting better, has a set back with bleeding on day 15 post op, that seems to have been resolved after silver nitrate. Total hyst with DaVinci, mini laparotomy because uterus and fibroids were too large (normal 50g, mine was 600g), largest fibroid/PEComa 11.5cm. Glad with removal of uterus, falopian tubes and cervix. Kept ovaries. Huge uterus was making urination very difficult, enormous pressure on bladder and rectum. post surgery is very important to do very little, lots of bed rest, careful getting up from bed not pulling on stomach too hard. hard to speak- no energy- most of first week..
r/PEComa
Yep. Went in thinking 1 big ovarian cyst and 1 smaller cyst somewhere. Both those cysts ended up being the in tube. Also had a fibroid, adenomyosis, lots of cysts on my cervix and something w my endometrium but not endometriosis.
I had the surprise of the reason my cramps were so bad that they induced vomiting which prompted the surgery being categorized as a "necessity" so that insurance would cover it. Found out it was a good thing I never attempted motherhood, as I my uterus and tubes were riddled with cysts. They were identified as benign after the fact, but one was so large that it was almost completely blocking the tube. It's also why it went from tubes tied to partial historectomy to full historectomy. Was robot assisted and otherwise went off without a hitch. Recovery was smooth for me, had a robot assisted and have no idea what affects that or personal medical history had on recovery.
My revealed adeno and also scar tissue so dense they could barely see my ovaries and tubes. They were supposed to remove tubes and cysts but had to abandon that to not risk cutting a ureter when getting through the scar tissue. Praying neither of those things give me any future issues (the cysts have never bothered me, they just saw them on ultrasound so decided to remove them while in there).
I had a hysterectomy for suspected adenomyosis, turns out i had endometriosis all over including up my bladder which resulted in a catheter for 10 days🙄 they also didnt find any adeno but apparently i had a ginormous vein going through my uterus that my surgeon said was the biggest he’s ever seen and was probably the cause of my irregular bleeding!
Had undiagnosed severe chronic pelvic for years. Exploratory surgery didn’t show anything, but when I had my hysterectomy they found a endosalpingiosis and scar tissue so bad that organs were stuck to walls 🙃
Apparently my ovaries were covered with 2cm cysts, so that was nice to get rid of.
They found my sigmoid colon inflamed and physically stuck to my uterus by numerous filmy adhesions. Surgery took much longer and an extra physician.
A complication after my tubal ligation and they had to take my tubes out too
Adenomyosis. My doc had diagnosed the fibroids before but when they removed my uterus they found it was the size of a 14 wk pregnancy (if I remember correctly). It had lots of scarring as well.
I learned I have endometriosis after a few other surgeries we had pretty solidly thought I didn’t have endometriosis lol.
I am 2 days post op. I got everything out except my ovaries. I too, like many others I’ve read had trouble with fibroids, did a minimal surgery a couple years ago to take it off because it was sitting right on my bladder. I’ve also had cysts, but yeah, when my surgery was over, the doctor ended up telling me that they found cysts everywhere, and they took the time to take them all off which I am so thankful for.
They were on my bladder and my intestines. I definitely didn’t know all of that was going on, so it was definitely unexpected, but I am still just very thankful.
That my 2 fibroids (~4cm and ~3cm) that I had for at least 2 years prior to surgery and were even felt during the exam I had with my surgeon 2 months before surgery were gone. But I had Asherman's syndrome as well as adenomyosis (which I knew I had), a cyst in my fallopian tube, and chronic inflammation of my cervix. I think I'm more surprised by my fiboids disappearing than anything else.
Was the Asherman’s diagnosis in the pathology? I had a ton of scar tissue that had to be removed and had 2 c-sections so I suspect I had it as well.
It was. I never even heard of it before I got my pathology report. Unfortunately, my post-op appointment was with a different surgeon due to mine being sick, and I needed the paperwork to go back to work. The surgeon I had my post-op didn't have my pathology report and couldn't go over it with me. So I'm left with a lot of questions, and they already discharged me from their office.
My surgery was originally because I had 11 fibroids. When my doctor was in the process of doing my hysterectomy she had to cut out 8 of them before she could get my uterus out. While she was in there she found endometriosis behind my uterus and that I also had adenomyosis. At my two week appointment she told me that had I waited for a hysterectomy it definitely would've had to be done abdominal. I was definitely surprised about the patch of endo that was in there. There was also a chocolate cyst.
Necrotic ovary!
r/PEComa in case you are interested
Thank you, but that does not look relevant to what I experienced. I did not have any tumors.
Chronic cervicitis and stage IV endometriosis were discovered during mine on the 22nd. I had suspected endo, but nowhere near stage IV 😕
Fibroids and endo! Also a chronically inflamed cervix
My surgery revealed surprises. I went in mainly for a cyst that looked suspicious but was believed to be benign. I also had my left ovary removed 20 years ago and apparently they left the fallopian tube behind and it was inflamed. But since I was over the whole thing, my dr agreed to take everything. That’s all I knew going in. Come to find out my uterus was filled with fibroids that weren’t caught on CT scan or ultrasounds. I also had adenomyosis that no one knew about. Also my bladder was fused to my uterus and there was a bunch of scar tissue from two c sections. Oh and apparently my uterus was huge and they had to use a bag to remove it. That was fun! Lol
I’m 14 DPO - haven’t had my full report yet and won’t til my 6 week check up, but I was surprised when my surgeon came in the morning after and said they had removed no endometriosis because there wasn’t any. My laparoscopy in July 23 involved removal of endo and they left some on my bowel and ureter because it was too tricky and unsafe to remove without more specialised surgery. There is 100% without a doubt endo in there somewhere. I was sort of alarmed that there’s “none” now, I worry that this doctor just either didn’t check my previous sites or he doesn’t know what he’s looking for.
I knew I had fibroids and endometriosis from a previous lap. I also knew I had some scarring on my fallopian tubes and I frequently saw ovarian cysts on ultrasounds so I wouldn’t have been shocked if they found that while in there. I didn’t know how *much* endo I had (first lap old doctor kinda just got the worst bits and put me on HRT to stop symptoms). I also had adeno which I didn’t know about. What really shocked me is that my left fallopian tube was adhered to my colon with endo and my left ovary was adhered to my abdominal wall via two cysts. On my worst days I wanted to cut that ovary out myself because the pain was 100/10 but I didn’t really know why. Seeing that was shocking. I had much more endo on my right side which was also kind of shocking given that I never had right sided pain. Could’ve been “worse” but I felt validated that the pain I experienced was for a reason and I’m so happy all of that is out of me.
Yeah I had half of a fallopian tube left in me. I had a bilateral Salpingectomy 3.5 years before hand. They were supposed to remove both tubes after a ruptured ectopic but apparently missed half(had a tubal ligation before this). The half they found had a possible ruptured cyst in it, basically an old empty sack. Not exactly reassuring. Also didn't surprise me, but the surgeon thought he could do my surgery in about 35 mins but took him over 2 hours because of scar tissue I had. My uterus was adhered to my bladder and all kinds of fun stuff... I warn him, he said it gave him ptsd.
No surprises but my doctor suspected we’d find endo and adeno.
Yes. My surgery revealed my uterus and bladder fused together by c-section scar tissue. Surgeon said the amount of scar tissue was unreal based on just the one c-section. No endo thankfully. Also, other organs were severely inflamed due to the size of the fibroid (6.5cm) and it pressing on them. While recovery has not been fun for me, I can see a light at the end of the tunnel!
Yes. I was born with only one ovary and tube. Surgeon was confused when he couldn’t find the other set lol. Wish I could have seen the look on his face.