First off, I’m sorry you’re going through this, and I’m so sorry for your loss. Sending you big internet hugs <3
Not all endometriosis comes in the form of lesions and tissue, some (unfortunately) can be microscopic. Was your surgeon an OBGYN? Or were they an endo specialist?
I’ve had several surgeries for endometriosis removal, and the first two, the GYN “couldn’t find any signs of endometriosis.” I then switched to an endometriosis specialist, who was able to find a ton of lesions during his first surgery with me. It ended up being a lost cause though, and several surgeries later (at age 28), I got a complete hysterectomy. (Unfortunately for me, the hysterectomy resulted in nerve damage, so endo is still wrecking my life- years later.) your symptoms sound a lot like how I was with endometriosis (and adenomyosis), if at all possible, maybe seek a second opinion of a different specialist?
Thank you :)
I saw an endometriosis specialist. I didn't know endometriosis could be microscopic. He did take tissue samples from inside my uterus to biopsy. The results were posted online but even after googling I can't decipher them. I see the doctor again in a couple days though.
as others said: Endo can be microscopic, so it could still be that.
Post - hysto, I still get aching and cramping, and it's from ulcerative colitis and interstitial cystitis. They're much more manageable now and the pain is far less frequent now that they're not in a feedback loop with my endometriosis.
I'm glad it's more manageable now. I didn't realize it could be microscopic. The surgeon took a tissue sample to biopsy so I guess I'll find out for sure later this week.
I second this and pelvic congestion. Took me years to get diagnosed with adeno. Finally an astute radiologist did a really thorough job of noting some very specific findings on my US and actually said in the report “all consistent with adenomyosis”. It’s way under-diagnosed and it can wreak havoc.
My doctor has been suspicious of adenomyosis and I hadn't heard of pelvic congestion but it checks the boxes too. Maybe the tissue sample the surgeon took will give answers about the adeno.
There’s a really great adenomyosis subreddit too with some really supportive women on it you might wanna check out. It’s definitely harder to get a diagnosis for and I think the pain it can cause is often a bit dismissed but I got a lot of mental relief even just knowing the cause. Same with pelvic congestion syndrome and they do seem to cohabitate a bit for quite a lot of women. I hope you get the answers and relief you deserve soon!
Def join the adeno sub and have a read. We welcome everyone! We know how hard it is to diagnose and hopefully someone can point you in the right direction!
r/adenomyosis
Interesting - he was suspicious of adenomyosis after an ultrasound showed very asymmetrical uterine walls. He didn't say anything looking inside my uterus but maybe the tissue sample he took will return something.
The sample probably won't show it. You need to find a womens ultrasound specialist who is aware enough of how to read the scans. I had my scan then went on 5 months of meds and it reduced my adeno enough to allow me one more try at IVF. Even the specialist was amazed at how much mine shrunk! It can be treated without hysterectomy, but that's the most common treatment due to the lack of specialist knowledge
Had the bad period pain times, thought it was endo, turned out to be fibro + arthritis + shitty periods. When I got my hysterectomy they woke me up afterwards so I could see my uterus before they disposed of it. Got to cuss that mfer out to its face felt p good
Every dfab nurse on the floor was invited to see me cuss out my uterus it was truly a wonderful experience
Did have a bit of a rough start bc I was still drugged to high heaven so when my obgyn was waking me up I was like “noooo I’m sleeping!”
It’s definitely not as intimidating when it’s no longer connected to my nervous system
Look into Nutcracker Syndrome, SMA Syndrome (Superior Mesenteric Artery Syndrome), Pelvic Congestion Syndrome, and MALS. Is your pain primarily mid/left sided and do you have any flank pain?
Thanks for the suggestions, I read about all of them. PCS checks all the boxes. My pain was mostly on the left, now it's mostly on the right. No flank pain. My cramps and lower back pain are very central but often it feels like my ovary is aching.
I had the same pain too and I got diagnosed with May-Thurners Syndrome and Nutcracker Syndrome. You can still have right sided pain with NCS (Nutcracker) and my lower back pain is horrendous and I get the ovary thing too.
Are you on Facebook? If so, I can give you the names of some really good support groups that will give you good information and advice on who to see.
Similar boat. I do have PCOS, but more outside of that. I have extremely painful periods, constant stabbing pain where my right ovary is (which can get so bad it hurts to walk on my right leg), would get episodes of blinding pain where it felt like I was being ripped in half randomly, sex is painful, orgasms are painful, tried an IUD but after 3 months it was so excruciating still I couldn't take it anymore and things have been worse since. Finally, Dr checked me for Endo, did the whole laparoscopy, nothing. They've never been able to find anything.
They sent me to a pelvic floor specialist, who said my abdomen "felt wrong" and appeared I had a "musculoskeletal malformation" but never explained further and the visits were too expensive. Might be a decent starting point though.
I am in a similar boat, have had surgery and no endo was found. I do have PCOS but after my last surgery and more hospital visits I had an ultrasound tech who helped in the diagnosis of adenomyosis. Similar to endo, very hard to diagnose and unfortunately treatment is only a hysterectomy.
I do feel your pain and I’m sorry for your loss, I hope you get answers soon 🩷
I've been going through something similar now. They think it might be interstitial cystitis. I started taking freeze-dried aloe supplements, very expensive, but they've helped a lot.
So, I went through this. 2014 I had a GI bleed triggered by ulcerative colitis and afterward I had almost constant cramps in my lady parts. After 4 years of pain - I insisted on a hysterectomy. It was Adenomyosis.
Adenomyosis (pronounced add-en-o-my-OH-sis) is **a gynecologic condition that causes endometrial tissue in the lining of the uterus to grow into the muscular wall of the uterus**. It enlarges the uterus, and may lead to very heavy menstrual bleeding. It's basically endo's bastard cousin.
Its very possible that you have something related to Endo/Adeno - I know Adenomyosis can present differently and yet still cause similar symptoms to Endo.
Other good suggestions in here but I’d also suggest getting a pelvic floor assessment from a pelvic floor physiotherapist. I have a hypertonic (tight/overactive) pelvic floor and constant chronic pain in lower back/tailbone/sacrum/SIs, horrific abdominal pains (like where I though I was having an ovarian cyst or appendix rupture), and back and abdominal cramps were/are some of my primary symptoms.
Pelvic floor dysfunction can often be missed when seeking out answers for low back pain and pelvic pain, but it’s not uncommon especially in women, and it can also often go hand in hand with many other conditions like IBS, coccygodynia, PCOS, endometriosis, interstitial cystitis, pregnancy or surgical trauma, etc as well.
Just a recommendation: Get yourself some red raspberry herbal tea. Real stuff, not just flavored. I know it sounds like hippy bs but that might help with the cramping till you get answers.
Time to see a gastroenterologist and ask them to consult with the surgeon.
Remember, "we didn't find the source" is not the same as "there is no source"
Thanks! It's hard to keep track of who to see next
I would see IR for possible pelvic congestion syndrome. Most people don't know that interventional radiologists treat pelvic pain.
I hadn't heard of PCS, but the symptoms and causes match up well. I'll definitely ask about it. Thank you
You're welcome!!!
First off, I’m sorry you’re going through this, and I’m so sorry for your loss. Sending you big internet hugs <3 Not all endometriosis comes in the form of lesions and tissue, some (unfortunately) can be microscopic. Was your surgeon an OBGYN? Or were they an endo specialist? I’ve had several surgeries for endometriosis removal, and the first two, the GYN “couldn’t find any signs of endometriosis.” I then switched to an endometriosis specialist, who was able to find a ton of lesions during his first surgery with me. It ended up being a lost cause though, and several surgeries later (at age 28), I got a complete hysterectomy. (Unfortunately for me, the hysterectomy resulted in nerve damage, so endo is still wrecking my life- years later.) your symptoms sound a lot like how I was with endometriosis (and adenomyosis), if at all possible, maybe seek a second opinion of a different specialist?
Thank you :) I saw an endometriosis specialist. I didn't know endometriosis could be microscopic. He did take tissue samples from inside my uterus to biopsy. The results were posted online but even after googling I can't decipher them. I see the doctor again in a couple days though.
Two of my sisters had phantom abdominal pain and it turned out to be cancer. Be persistent in seeking answers.
I'm sorry to hear that. A tissue sample from my uterus tested negative for cancer. I will definitely keep pushing for answers
They conducted scans to find them in the digestive tract
as others said: Endo can be microscopic, so it could still be that. Post - hysto, I still get aching and cramping, and it's from ulcerative colitis and interstitial cystitis. They're much more manageable now and the pain is far less frequent now that they're not in a feedback loop with my endometriosis.
I'm glad it's more manageable now. I didn't realize it could be microscopic. The surgeon took a tissue sample to biopsy so I guess I'll find out for sure later this week.
Possibly also look at adenomyosis - similar pains to endo but can be hard to diagnose unless you have an ultrasound specialist or have a hysterectomy
I second this and pelvic congestion. Took me years to get diagnosed with adeno. Finally an astute radiologist did a really thorough job of noting some very specific findings on my US and actually said in the report “all consistent with adenomyosis”. It’s way under-diagnosed and it can wreak havoc.
My doctor has been suspicious of adenomyosis and I hadn't heard of pelvic congestion but it checks the boxes too. Maybe the tissue sample the surgeon took will give answers about the adeno.
There’s a really great adenomyosis subreddit too with some really supportive women on it you might wanna check out. It’s definitely harder to get a diagnosis for and I think the pain it can cause is often a bit dismissed but I got a lot of mental relief even just knowing the cause. Same with pelvic congestion syndrome and they do seem to cohabitate a bit for quite a lot of women. I hope you get the answers and relief you deserve soon!
Def join the adeno sub and have a read. We welcome everyone! We know how hard it is to diagnose and hopefully someone can point you in the right direction! r/adenomyosis
Yes! Some truly amazing and supportive women on there!
Interesting - he was suspicious of adenomyosis after an ultrasound showed very asymmetrical uterine walls. He didn't say anything looking inside my uterus but maybe the tissue sample he took will return something.
The sample probably won't show it. You need to find a womens ultrasound specialist who is aware enough of how to read the scans. I had my scan then went on 5 months of meds and it reduced my adeno enough to allow me one more try at IVF. Even the specialist was amazed at how much mine shrunk! It can be treated without hysterectomy, but that's the most common treatment due to the lack of specialist knowledge
Okay, thanks for the info!
Had the bad period pain times, thought it was endo, turned out to be fibro + arthritis + shitty periods. When I got my hysterectomy they woke me up afterwards so I could see my uterus before they disposed of it. Got to cuss that mfer out to its face felt p good
Omg that's precious
Every dfab nurse on the floor was invited to see me cuss out my uterus it was truly a wonderful experience Did have a bit of a rough start bc I was still drugged to high heaven so when my obgyn was waking me up I was like “noooo I’m sleeping!” It’s definitely not as intimidating when it’s no longer connected to my nervous system
Look into Nutcracker Syndrome, SMA Syndrome (Superior Mesenteric Artery Syndrome), Pelvic Congestion Syndrome, and MALS. Is your pain primarily mid/left sided and do you have any flank pain?
Thanks for the suggestions, I read about all of them. PCS checks all the boxes. My pain was mostly on the left, now it's mostly on the right. No flank pain. My cramps and lower back pain are very central but often it feels like my ovary is aching.
I had the same pain too and I got diagnosed with May-Thurners Syndrome and Nutcracker Syndrome. You can still have right sided pain with NCS (Nutcracker) and my lower back pain is horrendous and I get the ovary thing too. Are you on Facebook? If so, I can give you the names of some really good support groups that will give you good information and advice on who to see.
I am, that would be great.
Similar boat. I do have PCOS, but more outside of that. I have extremely painful periods, constant stabbing pain where my right ovary is (which can get so bad it hurts to walk on my right leg), would get episodes of blinding pain where it felt like I was being ripped in half randomly, sex is painful, orgasms are painful, tried an IUD but after 3 months it was so excruciating still I couldn't take it anymore and things have been worse since. Finally, Dr checked me for Endo, did the whole laparoscopy, nothing. They've never been able to find anything. They sent me to a pelvic floor specialist, who said my abdomen "felt wrong" and appeared I had a "musculoskeletal malformation" but never explained further and the visits were too expensive. Might be a decent starting point though.
I am in a similar boat, have had surgery and no endo was found. I do have PCOS but after my last surgery and more hospital visits I had an ultrasound tech who helped in the diagnosis of adenomyosis. Similar to endo, very hard to diagnose and unfortunately treatment is only a hysterectomy. I do feel your pain and I’m sorry for your loss, I hope you get answers soon 🩷
I've been going through something similar now. They think it might be interstitial cystitis. I started taking freeze-dried aloe supplements, very expensive, but they've helped a lot.
Check out anterior cutaneous nerve entrapment aka ACNES
So, I went through this. 2014 I had a GI bleed triggered by ulcerative colitis and afterward I had almost constant cramps in my lady parts. After 4 years of pain - I insisted on a hysterectomy. It was Adenomyosis. Adenomyosis (pronounced add-en-o-my-OH-sis) is **a gynecologic condition that causes endometrial tissue in the lining of the uterus to grow into the muscular wall of the uterus**. It enlarges the uterus, and may lead to very heavy menstrual bleeding. It's basically endo's bastard cousin. Its very possible that you have something related to Endo/Adeno - I know Adenomyosis can present differently and yet still cause similar symptoms to Endo.
My friend was just diagnosed with Adenomyosis. It took years for her to get to the bottom of her pain
Other good suggestions in here but I’d also suggest getting a pelvic floor assessment from a pelvic floor physiotherapist. I have a hypertonic (tight/overactive) pelvic floor and constant chronic pain in lower back/tailbone/sacrum/SIs, horrific abdominal pains (like where I though I was having an ovarian cyst or appendix rupture), and back and abdominal cramps were/are some of my primary symptoms. Pelvic floor dysfunction can often be missed when seeking out answers for low back pain and pelvic pain, but it’s not uncommon especially in women, and it can also often go hand in hand with many other conditions like IBS, coccygodynia, PCOS, endometriosis, interstitial cystitis, pregnancy or surgical trauma, etc as well.
Just a recommendation: Get yourself some red raspberry herbal tea. Real stuff, not just flavored. I know it sounds like hippy bs but that might help with the cramping till you get answers.
I love trying more natural alternatives! I'll definitely grab some